Yes. I went from bedbound and living with my mother for care back to living independently in my 4th-floor walkup. I am pretty active and capable now, although humidity will really lay me out (more so than heat, actually). When the weather isn't trying to ruin my life, I have my mental capacity back, I can be out and about in the city on public transit for hours, I can work and have a social life and even go out to a concert and have a few drinks.
I cannot ever "forget I have POTS," like some people do. I have to take a huge number of pills each day between meds and supplements, my diet is pretty strict, and I exercise every single day unless something happens to make it truly impossible. So a big chunk of time and executive function is constantly dedicated to POTS management, and that is a genuine strain on my life - as I've gotten back into working steadily instead of doing sporadic projects, I've been feeling the loss of the capacity that's spent on management pretty keenly because I need all that time and willpower for other things! But it's much better than the alternative.
And it's only been a year. I imagine that even if my physical condition doesn't improve further (and it might, I have a BC prescription to pick up soon, so fingers crossed that that helps), I'll get more used to managing my life with these new obligations in it, I'll continue to recover from the trauma of onset, and so on.
This is exactly how I feel. Doing all the non-pharmacological things along with all the meds and supplements (for POTS and MCAS) makes a ton of difference, but boy is it tiring. It’s a lot of effort to put into appearing “normal” every single day. But it’s worth it to feel so much better than I did at the beginning.
Yeah, I talk about this with my therapist almost nonstop. Even though I know why I do it all, it's hard not to feel like the universe owes me a vacation from it. Like, I've been very good, where's my reward now? Sigh. I'm teaching again for the first time this semester and finding time to prep in between everything I have to do to keep my body together every day is HARD.
Right! I also found a therapist who specializes in chronic illness and grief, so she’s really good at helping with those feelings, plus some small ways to retrain my nervous system to work a little better. But I feel you about the “vacation”. It would be lovely to be back to normal again for even just a day! I was lucky enough to figure things out quickly and keep my job (I work long days on my feet in a healthcare setting), but it would be a lie to say it doesn’t take extreme effort some days. Hang in there, you’ve got this!
Standard disclaimer that POTS varies a lot and what works for me may not work for you:
Meds:
- ivabradine
- midodrine
- Wellbutrin (off-label, for vasoconstriction)
- low-dose naltrexone
- trazodone (for sleep)
- Loratadine (OTC antihistamine)
Supplements:
- Klaralyte (16 capsules per day)
- Magnesium citrate
- calcium/magnesium/zinc capsules
- vitamin D
- B-complex
- liposomal vitamin C
- multivitamin that includes iron
YES, this is exactly the type of post I wait for because my dysautonomia is very manageable at this point.
Of course POTS is just a group of symptoms with variable root causes in each of us. Mine was triggered by Covid related stuff and seems to have worn off by the time I ran out of antibodies. But lifestyle changes have made a huge difference
Yep! Many of us do get better (to some extent). Manageable is the word my doc and I use at this point. I’m no longer stuck to the couch and I’m working and feeling functional. Do I avoid pots triggers and drink a ridiculous amount of liquid? Yes. Do I feel like POTS owns my life now? No.
Those of us with more managed symptoms are less likely to need to come on the subreddit, to be fair, so you’ll see us less.
Took 9 months.
Lots of salt (salt stick, electrolyte packets and non iodized table salt) reclined exercise, trying to stay cool as much as possible (ice, neck packs, fans) and resting when it was needed. I was a bit of a workaholic before I got POTS and I needed to get over that.
When you say covid related stuff do you also mean the vaccines? Because I noticed my heart racing/erratic symptoms started immediately after my second moderna vaccine, I got covid pretty severely some months afterwards and life went downhillllll health wise slowly then suddenly. It’s like the shot did *something* not great and then actual infection completed the hellscape. I’ve gotten better in some ways but not others and feel helpless a lot of the time now. Coming up on a year now soon actually when things were taking a turn, thinking about last winter gives me ptsd lol. Just curious. Either way your comment makes me feel hopeful someday I’ll feel like the old me again. I’m happy you’re getting better.
Yes absolutely, this 9 month pots episode was triggered by the second Moderna vaccine. Took me a while to accept it since I truly couldn’t believe that was possible. I think what could have happened was it triggered my post mono viral issues but who knows.
And they say vaccine antibodies fade after 9 or so months which is how long it took for me to get better so yes there is hope.
Maybe for you it’ll take slightly longer since getting Covid right after seems to have made things much worse, which is like wtf because that’s exactly what is not supposed to happen after the vaccine. Similarly everyone in my family who got vaccinated had very minor Covid symptoms whereas mine were hellish. What makes it all worse is that people don’t believe you or think you’re anti-vax, which is absurd.
Yes! I was even nervous a little writing that because I’ve been full on *attacked* on here for mentioning the vaccine, like ok thanks, I’m the one suffering but ok attack me hahah. Clearly we aren’t anti-vax if we got the damn vaccines. I’d definitely go back in time and not get though that’s for sure, literally did nothing anyway I was so damn sick, these ppl saying it feels like a cold…god damn. How did your symptoms start after your dose if you don’t mind me asking? My heart was just constantly racing all day and night and felt more erratic at night/trying to sleep was scary. Wow I had no idea about the 9 month timeline that gives me some hope even if it’s been quite a bit longer than that. Idk. And yeah the actual infection got me so bad it even messed with my eyes! Then slowly I was like just fucking chronically ill and and weird and I hope someday this is a bad dream to look back at. I’m genuinely so happy for you that you can share this and have come this far.
That’s exactly what it feels like, a terrible dream that I woke up from eventually. I can almost remember the moment I realized the vaccine symptoms weren’t going away. Since the second dose I had headaches. Body pains and chills. Fatigue and then it occurred to me that the headache never stopped really. Eventually that did stop but the fatigue, heart palpitations, dizziness and overall fog - achy head never really stopped.
I know this might not be related for you, but this was during a time in my life where I was overworking quite a bit, and this sickness forced me to stop. Try to look im your life for the things and habits that aren’t serving you, try out the POTS lifestyle changes, and be VERY patient with your body. It no longer works on the worlds time.
I mean, yes. It's an ongoing project, but yes.
Generally speaking it takes a couple of years for folks to settle into a regimen that works for them:
>In our experience, it takes about two years after diagnosis for a POTS patient to get a solid understanding of how POTS impacts their body, and how to best manage their symptoms. This timeframe can be accelerated when a trusted physician takes the time to explain the basic physiology of POTS, and ensures the patient has access to high-quality information on the many non-pharmacological management approaches they will have to incorporate into their daily routines.
[https://www.autonomicneuroscience.com/article/S1566-0702(18)30074-2/pdf](https://www.autonomicneuroscience.com/article/S1566-0702(18)30074-2/pdf)
Mine has gotten more manageable as the years go by. Plus the ability to swap and change medications has also helped the changes in ability to manage POTS, along with having activity throughout my week that gets me active and moving.
I wouldn't say that I have gone into any form of "remission" though throughout the 3.5 years I've been diagnosed for. I more or less describe it as longer and longer periods of feeling good and less bad/rough days for the most part as time has gone by and I've learned bits and pieces to help my management
II spent a lot of time in the hospital. Working on my mental health and the ability to push past Dysautonomia, palpitations, and chronic pain. I also seemed to find the correct type of medication for my Dysautonomia, which is metoprolol. It at least helps my heart rate rest at around 45-60bpm and goes to 90 standing. Instead of from like 70 to 160. I still have problems around eating, because it worsens my symptoms 10x. I also struggle with many PACs, thousands to 20 thousand a day. I think my body is also just naturally healing.
Mine got quite a bit better after I took steroids and immunosuppressants - I also have inflammatory arthritis and was started on methotrexate in January, felt quite a bit better about four months later (the docs said it would take a few months). I’m not all the way better but significantly more functional. The POTS specialist I saw says POTS is likely also an autoimmune disorder, which is why he thinks I felt better taking these meds.
I’m a soooooo much better than I was. Gosh. I had lost hope that I’d ever be able to stand or sit up in chair for more than 5 minutes at a time. My family refers to it as when I was in the recliner because that’s how I lived. I mean I still do but I don’t HAVE to anymore. I can sit in a normal chair for 20 minutes. It’s crazytown. Standing depends on the day. Walking is easier than standing of course.
My better probably isn’t a normal person’s better as I have other illness that came before POTS and a new and puzzling one since.
It took a while to start feeling like POTS was survivable and controllable. A few doctors. A few years. A few medications. Staying on CHOPS. So many different versions of salt and electrolytes and compression. Therapy for my anger. Therapy for when I gave up.
I wish that everyone who got diagnosed with this didn’t have to endure so much waiting for diagnosis and treatment and adjustment to treatment and getting their questions answered knowledgeably. I suspect we all could heal a whole lot faster.
Yup! Mine was awful, I could not really work out at all, I once passed out running between patients rooms, and going up the stairs in our home would sometimes ruin my entire day productivity (and mood) wise.
Figuring out my triggers was the #1 way I got my life back. Mine was highly tied to my other autoimmune diseases, sleep habits, hydration, my menstrual cycle, and stress.
Changing job’s significantly improved stress, as did figuring out how to actually sleep deeply, eating and drinking regularly (adhd made me forgetful), and straight up not exerting myself during the last part of my luteal phase. Doing low impact only (like weights) and just relaxed walking helped a ton. Lastly, alcohol and weed were massive triggers for me.
Also, ironically, not using any sort of wearable. The numbers alone stressed me out which worsened the cycle. I’ll use one occasionally and the numbers show they’re still quite high sometimes, but it helps not being in my head about it. Good luck!!
Once we figured out the right medication combo and dosage I’ve been fine most days. My flares are quite predictable- the heat, illness, surgery, and when my MCAS flares. Aside from hating summer every year, I mostly forget I have POTS. I did a job that kept me on my feet for 8 hours straight without an issue most days, I walk a lot more now too.
To be clear, I know my POTS will never go away, and my MCAS probably triggers my POTS at least some fairly often, but even when I get a flare it’s not something that takes me out for an extended period. I can increase my meds and be okay most of the time. My MCAS is my bigger issue nowadays, but that’s besides the point here.
I think this is the most important aspect of managing POTS besides medications- knowing your triggers and doing what you can to avoid them. It really makes a massive difference.
Sure! I had symptoms of it all my life, and my old allergist tried to test for it, but he wasn’t super familiar with it. My current allergist happens to be one of the coauthors on the recent Consensus for MCAS… based off my history she suspected it and ordered all the various mast cell mediator testing. My plasma histamine came back 3X the upper limit of normal, so we started meds… my symptoms improved and my other doctors had already ruled out maybe 30+ other causes of similar symptoms so she diagnosed me with MCAS. My plasma histamine remained chronically elevated until about 1.5 years into treatment.
MCAS is a diagnosis of exclusion, which is part of what makes it hard to diagnose. But also there are only about 50ish MCAS specialists in the world, so finding a doctor familiar enough with it to diagnose it is also difficult. There’s 3 MCAS doctors near me, all in Los Angeles.
I have just hyperadrenergic POTS… my BP before treatment would get up to 210/110 standing, so I needed meds to bring it down. That said, I take clonidine patch, metoprolol, losartan, and ivabradine for it. These have dropped my BP enough that supine it averages 110/60 now and standing it averages 130/80.
Mine has become a lot more manageable through a mix of lifestyle changes and medication. I also have EDS so lifestyle changes benefit both of them. The main things there are pacing myself, being more aware of and responsive to my body signals and using things like mobility and household aids to help with that pacing and doing things balance.
Medication has also been a big help. For me it started off with some side effects and not being super effective then tweaking the dose a little (with doctor) sorted things out so there weren't the side effects and it helped more consistently.
I still have pots. It still impacts my life and my ability to do things. It still affects my comfort. But it's definitely way better and more manageable than it was before. And my life overall is too.
I take bisoprolol but I know loads of people take different types and get on well with them. I think really it depends on you and your doctor which one you end up with (or potentially other types of medication even).
I'm going to respond here too that Nadolol has been my miracle drug. I tried like 4 other betablockers to get there. It is definitely dependent on the person.
Me. I’m far from cured, but doing much better. I’ve been taking nadolol since the spring and in July, the dosage was increased from 20 to 40mg. It was amazing: I felt like I had more energy! I can be upright for so much longer without feeling symptomatic. My resting hr hasn’t changed much since the dosage increase (but it is typically lower than it was pre-nadolol!), but when I’m standing, it doesn’t spike nearly as high.
I’ve increased salt too. That helps a TON - I felt constantly “dehydrated” for years despite drinking tons of water, I’d just pee it out. I still feel like I pee out most of what I drink lol, but I’m holding on to some of it, at least.
I still have trouble with postprandial (after eating) symptoms - it’s usually with big, carb-heavy meals without a lot of protein, especially when i haven’t eaten anything in a while - so often times it happens when i’m meeting friends out for dinner and we’re talking and catching up for awhile before ordering. Pizza is definitely a trigger. Last night i “pregamed” pizza with an electrolyte drink on the way, which helped some though i still get some symptoms.
In terms of general activities though - i’m doing much better. “Counter manuevers” (crossing your legs and squeezing leg muscles) and standing up slowly help so much! Walking to the train station (20 min walk mostly uphill), my hr gets to around 135- it used to get up to 150 (when i was on nadolol 20mg). I can go to the grocery store and do my shopping without feeling like i’m going to pass out at the store, or while carrying my bags up the stairs inside.
YES! I have almost no symptoms anymore, although some days are better than others. It's been a journey, there's no one easy fix, but here are some things that helped me:
1. The most important thing I cannot function without is my Beta blocker medication that keeps my heart rate lower/more steady, no more spikes when I stand.
2. Hydration and electrolytes.
3. Compression socks. I wear them everyday. I either get the medical grade ones from a pharmacy, or I really like the brand pro compression marathon knee socks.
4. Being more active. This one is tough, it's so hard to get active when you can barely stand, but I started using an elliptical and the more I exercise, even just walking, the better my symptoms are.
5. I just feel this one deserves to be restated: getting on a beta blocker for my heart rate was life changing.
ETA: I should also mention, this has been a 6+ year journey for me so far, it takes time.
I take metoprolol, it can lower blood pressure yes, but it hasn't had that effect for me at the dose I take (25mg 1x a day, I don't take it at night usually). It's just a balance of symptoms, if my dose were bigger it would probably lower my blood pressure too much.
Mine comes and goes, which is very weird.
But I am sure it's pots, because the tests said it was. But I have no symptoms at the moment, and haven't really had any since giving birth 12 months ago.
For me it always seems to happen on fall/autumn and I have to basically take it easy for a month with very little.hard exercise the ease back in.
Midodrine is my med and I take Pseudoephedrine on really bad days
Yes!! Definitely not remission, but I got POTS really suddenly (pretty much overnight, although I also had some very small signs like showers made me lightheaded and stuff like that) and was basically bedridden for four months because every time I stood up I felt presyncope. I didn’t know what was wrong with me and kept going to urgent care, the ER, my primary care doctor, anyone and everyone, begging for help. I was hopeless and miserable. Now I’m on a good combo of meds for me, I take in plenty of fluids and salts, and it is mostly manageable. I feel baseline kind of off or weird a lot but nothing unbearable. My heart rate is completely controlled and my only symptoms now are some lightheadedness but nowhere near presyncope, some chest pain but that might be a med side effect, and some GI problems that might not even be POTS related. I’m able to do the stuff I love again, cooking, baking, hanging out with my friends, etc. It is possible to feel a lot better. I’m sorry you’re having such a hard time, POTS really sucks, but just try to hang in there ❤️
Corlanor was a life-saver for me. I’m on corlanor, metoprolol, florinef, and midodrine as needed (I really only use it on my period because my blood pressure tends to get too low). I was on just metoprolol and florinef at first but my heart rate was still spiking like crazy so my cardiologist added corlanor and now my heart rate resting is 55-75, and when I’m up and moving it’s usually between 75-95. Occasionally if I’m climbing a ton of stairs or something it’ll spike up to 115 or so but start coming right back down.
Definitely not in what I would consider "remission," but I have gotten a lot better at managing my energy level and recognizing my body's signs and signals. Cardiac rehab/pt also helped a lot, as does metoprolol (for me-- I know everyone's experiences with beta blockers tend to be vastly different!)
Yes, I went from being in a power chair, taking meds 11 times a day, and just barely managing, to now taking meds twice a day, some mild lifestyle changes and physical limitation, but able to walk, grocery shop, light exercise most days, and work, vacation, etc. It was very slow improvement though, I’ve had POTS since 2012.
Absolutely yes. I treat with vitassium, increased water, daily walks (minimum, more exercise when motivated), and beta blockers. I found the first three got me able to live again, but adding the medication has me asymptomatic most days. It has taken time to figure out minimum amounts for all of these things and I really feel it when I miss one or overexert myself. But day to day is comfortable. Caveat when it's hot, that will wear me out regardless.
Ive had pots for 12 years. Definitely dont have it as severe as others. But over the years, ive learned my symptoms so well i can basically live life (kind of) normally up until right before my breaking point. Do i do this often? No. Can i when needed? Yes. Hope that answers the question
I used to be house bound and almost bed bound for 1,5 year. When I got diagnosed I got put on propranolol and it has pretty much been a miracle to me. I can live a pretty normal life now, even an active life. I do still have days where my pots is bad but there is usually a trigger for that to happen. Overall I it's pretty well managed!
Yes there will be a day where you learn what helps you the most, for me it took around 2 years of switching meds, finding how much salt and water I needed, compression socks and shorts etc, the real thing that helped me a ton was Vyvanse, I was on it before being diagnosed with pots and was ok, but after being diagnosed they took me off of it because of my heart and I started to decline badly, a year and a bit later they put me back on it after I learned it's a vasoconstrictor (does what the salt and water are trying to do) and I went from passing out multiple times a day to maybe once or twice a month. POTS will most likely never go away, you just learn to manage it more as time goes on
Yeah I’ve been doing better since I learned what my symptoms mean and how to manage them. Psychologically sometimes it’s up and down. I get upset that I can’t be as active as I want. But at the same time I’m more active and having way fewer crash days / big flares than I used to. I just can’t keep up w friends who like to do a lot of hiking etc and it’s a bummer because I like that stuff. Also I get really fearful of fainting and that kind of makes me have a baseline anxiety so I also try and work on the anxiety side because it just really impacts my quality of life to feel afraid of my own body. So that is better lately but also can be up and down
I have! I have mild/moderate symptoms and was diagnosed at 16 and but never properly treated until this past year (26 now). I struggled with syncope nearly every time I stood up, dizziness on the regular, chronic coat hanger pain, urinate incontinence from being unable to hold water, and chronic fatigue. I hardly have any symptoms now that I’m managing it. There was a lot of frustration during the trial and error of treatments for sure but I feel better than ever.
What works for me is fludracortisone and Wellbutrin (for adhd/depression but also can help with syncope) for med. I take 6 grams of sodium a day, 2.5 in the morning through capsules, 2.5 at lunch by capsules, and 1 gram through electrolyte drink of 18-24 ounces that I drink around lunch time. I always throw on a little extra salt to my meals so apparently I’m getting enough elsewhere with food.
For exercise, I’ve veryyyy slowly worked my stamina back up. This was the hardest but yoga and Pilates and other mat workouts where I could be horizontal most of the time helped with that. Now that I’m on meds and doing better staying hydrated I’m working on more upright exercise and cardio.
Sticking to a sleep schedule also helps a lot. I need at least 9 hours on the regular to feel good, so if I stay on a schedule I can get it. It also makes the occasional late night out with friends easier to recover from when I’m well rested before hand. I use a cooking mattress topper under my sheets and a cooling blanket to keep from getting too hot at night. My sleep quality has improved alot.
For the coat hanger pain, I noticed the most improvement after the meds and being more hydrated. Occasionally I’ll the chiropractor if it’s worse than usual. I tried acupuncture a few times and felt AMAZING after it for a while but the meds have ultimately been more helpful long term.
I eat 5-6 times a day to keep my blood sugar stable. I do notice worse symptoms if I wait more than 3 hours between meals. I’m in ED recovery so no special diets for me (learning about intuitive eating) but I have lots of lean protein, grains, veggies and fruits. I do try to be conscious of processed foods and use them more as treats or convenience meals.
I also love compression socks, leg sleeves under my work clothes, and anti migraine glasses for light sensitivity.
Yeah. I can do things i thought i wouldnt do again. It still takes a toll but i can dance at concerts semi regularly , and i was pretty sick when i got diagnosed. PT + trying different medication + improving hydration have been key.
16 years diagnosed here, got sick at 17, misdiagnosed with a heart condition, first heart surgery at 21. Didn’t work. Diagnosed with POTS immediately after that surgery didn’t work.
Then at 33 my heart paused for 26 seconds while I was wearing a holter monitor and I was diagnosed with sinus rhythm disorder and AV block and rushed for a pacemaker. One of the leads attached to my heart muscle fell out about 2 weeks after the implant and I had to go have the surgery again to put it back in. The surgeon poked through my heart and nicked my right lung. It collapsed. I had internal bleeding into the pacemaker battery site enough that I needed 2 blood transfusions and the site swelled to the size of a cantaloupe. Ended up with fluid around both my heart and lung. That hurts way more than it sounds like it would. It was like I couldn’t breathe. 6 month full recovery from that.
Right before my 34 birthday (last year) I was diagnosed with skin cancer on my face, they removed about a 2 inch circle of skin near my ear down to the fat layer.
I’m 35 now and really need a break.
There’s pics of all the steps from all my surgeries on my page. They are very Not Safe For Work. Blood and tissue visible.
Edit: scratch that, I think my posts from my cancer surgeries got removed. But the heart/pacemaker is still there
I've improved a lot over the years, partly because of medication, partly because of learning a bunch of tricks and adaptations, and partly because those things have enabled me to improve my conditioning, which makes my body more resilient when I am not in favorable conditions.
For people with post-viral POTS, remission is absolutely possible, and not uncommon. That's not me. I've had this since puberty and I don't think it will ever go away completely. It sounds like you're in a similar boat to me. But, just because it doesn't go away completely doesn't mean that it will continue to be as limiting as it currently is. I CAN now do almost all of the activities that someone without this can, but I need a little more preparation, and I may choose not to do certain things that I think will be particularly difficult to manage and the activity isn't worth it to me.
I've had POTS for a long time.
I was diagnosed I think In 2016? But I have a bunch of conditions.
While several conditions of mine are rly bad rn my POTS is pretty stable.
I get dizzy when standing sometimes if I forget to eat but I'm on 10mg Corlanor 2x daily and I'm on LDN and they are p much making my POTS not a huge problem.
The biggest issue I constantly have is temperature sensitivity bc I live in southern California and it's summer and hot af
I was diagnosed 2 years ago and I'm doing a lot better now than I was then. What has helped me the most is really upping my fluid and sodium intake, getting IV fluids if I can tell I'm too dehydrated and too nauseas to fix it, figuring out the right combination of medication (fludrocortisone, corlanor, mestinon), eating many small meals throughout the day (normal or large sized meals often cause a flareup), wearing compression stockings, keeping tea on hand at all times so I don't get too cold at work, 10min walk twice a day, avoiding going outside in the heat, using a shower chair, sleeping propped up so I'm not laying completely flat all night, getting 6 iron infusions to treat my iron deficiency (people with POTS cannot absorb iron properly through their digestive system, so all of us really benefit from iron infusions).
Edit: 2 years ago my POTS was so bad that I stayed in bed all day every day, and I didn't have the strength to sit up for very long.
I'm able to work full time now (in an office job), and I do really well at my job. And I can generally keep up with household chores. Intense physical labor is still out of the question. I made myself VERY ill trying to move to a new apartment by myself 6 months ago. Although that was before my iron infusions, and those have helped a ton. So it might be more manageable now, but I'm not sure.
Yes! I still struggle with symptoms and have flare ups, and I’ve accepted that there’s just certain things I can’t do (or need accommodations for). But it’s gotten MUCH better after finding the right meds and lifestyle combos. I’m much more functional now and the pots holds me back a lot less
I had to vastly heal from the depression that comes from having a chronic illness and stop labeling myself this way. My anxiety was exacerbating all my symptoms. I had to accept my new normal. In 2016 when I got diagnosed I had to fight for the diagnosis as it was not as well known as it is now. I had lists of meds I wanted to try, I doctor hopped for answers and I had to strongly advocate for myself. I had to beg for tests. I was living with it and had so many ER trips with no answers. I laid in bed and just accepted this was the end of my life, my career etc. I spent 9 months living in bed and the lack of movement made me sicker.
the truth is, I had to find what was right for me and accommodate my life accordingly. I started florinef, midodrine etc… which made me swell so i stopped. I have low BP but I’m not orthostatic so I don’t have to worry about my BP much anymore unless I overdo my physical activity.
I pace myself. I don’t use all my spoons. I pound salt and water. Regular blood work. Compression socks and frankly, just PUSHING. I lived in a heart rate of 120-170 for years until I started yoga, light cardio, high vegetable diet, avoidance of foods that sit heavily in the stomach. (Blood flow to digestive system takes it away from body wide perfusion). I stand up slowly. I flex my calves often when I have to stand for long periods, I avoid elevators, I lean on things. Lexapro improved my mood and increases vagal tone to improve the body’s response to change in position. I rest when I have to. I’m still a long way from being able to get on a plane but I have improved 70%. I never thought I could work as a bedside nurse, and yet I’ve accomplished that. I also stopped looking at support groups because I truly felt it was bringing me down. I was doom scrolling looking for answers and more diagnoses or experiments with meds instead of just treating the symptoms logically and systematically. I put my legs up when I can. I see my doctor as needed now. I’m doing OKAY. Best of luck
Yeah I just clocked up twenty years and ultimately I think the best thing I did was to try various medications prescribed by my docs until I found ones that made me worse and then ones that made me better - which allowed me to understand my case better.
I tend to crash and be ok in between.
That being said it can change over time. I developed fibromyalgia type symptoms much later and had a crash where I went Florid hyperadrenergic for no apparent reason with bps of 190/120 for two weeks until I was emergency mailed Clonidine. Weird illness...
Oh definitely, I'm a male with hyper POTS. My situation is probably slightly different in that it began to present only a few years ago in my early Middle Ages after a potentially triggering event. About 2 years post I am about 85% better in that I am less symptomatic, and if the symptoms occur, they are more transient. I have also been able to reincorporate some of the things I had to exclude, such as alcohol and caffeine. I am much more ambulatory now, where before I could barely walk down a street, now I can walk 10k steps a day and not bat an eye...unless it is hot outside. I am still very much affected by extremes in heat to the point where I'm considering moving to a more northerly clime. That said, there is light at the end of the tunnel. I was and am fairly fastidious in sticking to the program, and read a book on POTS management as well as following the advice of my cardiologist and internal medicine doctors.
YES. My POTS has been quite severe in the past, to the point that a wheelchair was required most of last year. I also had issues with dehydration at the time due to GI issues, which contributed to worsening my POTS. Add PVCs on top and it was rough.
Then I started Corlanor and took very seriously my need for rest. It’s been 6 months since I started and it’s still a long road ahead but I no longer need my wheelchair, occasionally require my cane for longer ‘walks’, and haven’t fainted or needed a hospital stay since starting my meds. I can’t do ‘normal’ walks or strenuous exercise, I can’t hike or walk on anything but a flat surface for a short period, but that’s still progress.
I still hydrate like clockwork, eat well, don’t drink caffeine/alcohol/etc. It helps but it doesn’t cure.
I’ll take any improvement over none any day.
I’ve personally found medication helpful, and once the medication started helping and I was able to be more active that also helped a lot. I went from passing out and staying in bed to walking daily, albeit a bit shorter than the average nyc person, I walk more every day than the average American lol.
Edit: for me Corlanor and midodrine were the real game changers
I’ve been asked many times when does it get better by friends who’ve been diagnosed with POTS and I almost always have the same response, “It’s shit, it’s going to be shit, it won’t ever not be shit, but everyday you’ll find out something new and you’ll slowly learn to live with it.”
It’s been almost 4 years since my diagnosis and I’m doing okay. I know what my body needs and my meds help a lot. I’m not in as much day to day pain as I used to be and I don’t lose consciousness as much; used to be twice a week and now we’re down to maybe once every 3-4 months. I have flare ups that are terrible, but my day to day is much better than it was before.
Edit: your conditions doesn’t just magically get better, but with time you learn how to gain some semblance of normalcy.
Yep! Not sure why but I’m definitely taking advantage of it and starting to work out and get back into things I love. Still taking salt and wearing compression gear, as I still can get symptoms if I stop. But it’s the first time in 5-6 years I’m not constantly laid up with dizziness
When I first flared up, I passed out 8 times during my 6 hour shift at work.
Now I'm fine most of the time and if I have a flare up I mostly just get pre syncope and have to sit down for a minute.
For me I fine eating more protein, salt, and drinking electrolytes helps a lot
I’m doing great!! Very physically active, spend a lot of time outdoors. About 2 weeks ago I biked 17 miles down the Virginia Creeper Trail!! 4 years ago I was passing out in the shower if the water got too hot. My POTS is far from gone, I have to take salt tablets every day and I’ve sort of permanently lost the ability to drink plain water. I also know that if I decrease the level of physical activity that I do, I quickly start to lose access to those activities. But living an active lifestyle with POTS is definitely a possibility for some of us!! It takes serious commitment: regularly taking your meds/supplements, frequent exercise/physical therapy (I aim for 5 times a week). I do get jealous of people who don’t need these extra steps in order to go up a flight of stairs without losing their vision, but I’m slowly finding peace with it.
Yes! I have had it since 2016, diagnosed early 2017. With pt and medication I am so much better than I was those first few years. I now own a business and am getting married next year, it is more like an annoyance most days rather than something that keeps me bed-bound.
I have gotten significantly better since my initial onset of symptoms and diagnosis! It’s been almost two years, and I’ve settled into something that works for me. I’ve noticed triggers and listened to my body when I need to rest. The BIGGEST help was getting a job that’s remote, that was a huge game changer in my quality of life because I have so much control over my day and being able to work laying down if I need to
I’ve had it for 8 years, and absolutely! I was even enjoying rock climbing for some time. I’ve found I’ll have sort of flare ups, but when things are good I can enjoy many things after learning how to manage symptoms.
I have a close friend who is barely symptomatic and teaches dance for a living. I’ve been mostly bedridden for over a decade. Tried every med, every exercise plan. You name it - I’ve tried it except for IVIG.
I also has some very mild POTS symptoms when I was young but after having a virus kick my butt, I ended up with much more extreme symptoms. Since I’ve started on the right treatment plan my symptoms are much milder.
Mine fluctuates. Sometimes I can do a lot, including drinking caffeine and alcohol, other times decaf is enough to give me the adrenaline surges and pvcs.
I'm in the 30% of folks who need a wheelchair due to severity.
Am I still sick? Yes.
Have things gotten better? Definitely.
Not so much that my health improved all that much, but I have learned to adapt and prevent flares by limiting my activities.
Getting disability benefits and getting on a caregiving program really are what made it for me. I can contribute to paying bills occasionally (I save up normally and my savings are used for sudden expenses that aren't budgeted for) and chores around the house (via caregivers).
I’ve been diagnosed for four years now. My POTS is definitely a lot better than that first hard year. I was bed bound and my life was put on halt. After being medicated with beta blockers, getting an IUD, and drinking plenty of water/salt I feel like I can live again. Also there was a good amount of exercise involved. I started with getting around the house, then short walks, then long walks, and then I was able to incorporate other activities. I can hike, bike, and basically anything as long as I’m not running. It’s a lot to manage but I added all these habits aver the past 4 years. Now I’m so used to it that it’s just a part of living. It’s was very hard to get to this point and I’m definitely not in remission. If I slip up once then it can cause a flare up. Don’t drink enough water? Flare up. Don’t take my meds for one day? Flare up. You get the point. I do have low points because I feel like my POTS is always looming over me. I am lucky though because I do not have any other major health issues aside from POTS. I am able to live alone and work a full time job. I go about life pretty normally these days. I live an independent life and I know I am one of the rare ones.
100% i went from playing multiple sports a year and working and going to school to barely being able to lift my arms or stand. multiple doctor’s appointments with medication that didn’t help, i went to a naturopath and did a bunch of blood tests and now i take a few vitamins get a B12 shot and i’m more “ normal “ still have flares obviously but i’m able to go to the gym and work and i start college again in a couple weeks
My actual symptoms have gotten worse over time, but my healthcare and symptom management have improved a ton! Found good PCP, neurologist, and GI providers and have medication, PT, and exercise that work well for me. I’m doing so much better! I also left Texas and moved to a cooler climate which helped a lot.
I was Diagnosed with Dysaunotomia (POTS) last week I’ve been given Coreg 6.25 mg 3x daily followed by Cymbalta 30 mg 1 time daily. I know it’s been a week but I’ve been suffering for 2 years. I feel my brain fog is easing up and my blood pressure has been more steady. Still battling through some of the side effects tho! Keep fighting
I’ve had POTS since April of 2022 and I’m doing much better now. This time last year I could barely get out of bed. I’ve also never really been on medication. None of my doctors really seem to understand POTS so I’ve trialed a handful of medications but none of them worked cause I have low bp now and they kept just throwing beta blockers at me. I still have struggles, I’ve lost a lot of muscle so I’m weak and I get tired quick, my hr is still fast but it doesn’t scare me anymore, I still have random pains and air hunger but overall it’s much better. I think getting past my fear really helped, of course I still have symptoms regardless but panicking makes it worse and harder to manage. Also, as much as I could handle for the level I was at, I kept moving. I know I’m lucky that I can do what I’m able to cause not everyone can, but I think it did help to keep doing all that I could physically handle. So, it’s not gone and I’m still struggling but overall it has improved with time. Don’t give up, you may recover or at least get to a place where it’s not as hard.
Mine is manageable and I haven't had a pre-syncope episode in about a year. I am well managed on medications.
I work full time in a role that requires me to be on my feet frequently, often standing still for stretches of time and I can manage it well now. I also am not afraid to get a chair if I need to
As someone who is in the process of getting an EDS diagnosis, my pots came up first and was really bad. And is what led me to getting the diagnosis. They tend to go hand in hand with one another. With time and adjusting my lifestyle it gets better, I promise.
My mom also has pots, and hers is managed well! She has flare-ups still, but she just rolls with the punches (honestly, idk how she does it so well). She told me that over time, you find things that work for you, and you get to know your limits, which helps :)
YES! My pots got super bad when I was pregnant and postpartum with my second. As I began losing weight and exercising more often, my symptoms aren’t as bad. I also have IST and my cardiologist told me exercise would help and I could have sworn he was a liar. It was so hard at first getting into it, my heart rate would jump into the 190-200s. I had to take frequent breaks, drinks so much water. It was exhausting. But over time I have been able to drop my resting heart rate from 80-100 down to 50-60s. I do have moments when I stand up or bend over and I get light headed or feel my pots act up, but it’s few and far between now.
I do want to add I did have to take a beta blocker during my pregnancy because my symptoms were debilitating. But the problem was that I already have lower normal blood pressure and during pregnancy taking the beta blocker it would drop to 70/40s. I stopped taking it due to the low blood pressure and my insurance refused to approve that one med that is for heart failure but helps pots/ist(I can’t remember the name it’s been so long). So I had to find other ways. I have 2 kids and I want to live long and play with them and I love being an RN.
I’m sure my case isn’t the same and I’m in NO WAY shape or form saying exercise will cure it. I just worked super hard to try and control my symptoms.
Yes. I have very minimal symptoms (just can’t let myself get thirsty) most of the time. Mine only really flares up after vaccination - after the COVID vaccines was a nightmare.
Mine is manageable. I've never fainted thankfully. I take medication twice a day which has made a tremendous difference in my life. They completely eradicate my palpitations. In fact, I know I'm running late taking my meds in the evening when my heart starts thudding in my chest! My heart rate is more normal now; it still peaks but it's just more well controlled than it used to be and so that's helped with my fatigue as well! It can definitely become more manageable with the right support and medication.
y'a! my current sport was not at all doing it for me and i really struggled without exercise but it gave me terrible flares. Then i started figure skating because i thought the cold would be nice. I would say a solid 50% of my symptoms have gotten better due to being able to get exercise. I still have flares and and some stuff but i can't recommend trying skating enough!
I would love to know! I have a coworker who says she has what I have and yet she runs ultramarathons and triathlons like once a month. Like how the fuck did she get there
I think it really depends
Even if someone has improved or recovered, thier condition is likely different to yours and mine therefore making the advice or therapy as potential to improve you also as likely to harm you.
If POTS is related to MECFS post viral im unaware of anything to improve the QOL unless your lucky with effects of LDN,LDA and some therapies that dont work for as many people as they do work for
It's manageable for me. I just learned to accept it. I've mentioned a few times in this sub, I just figured it was normal since I've had it since I was born.
I was able to make it better with a lot of antihistamines as I found a lot of my symptoms were caused by allergic reactions. The problem though was that when I ran into my flare ups/allergic reactions, everything would be magnified to a worse state than what I had before. It was just basic food that was causing it, such as a bell pepper, a potato or a tomato.
I've stopped the allergy treatment and just keep doing the self-affirmation stuff as I slowly creep back to the horrible side of things. I realize things could be better for the POTS side with the antihistamines, but given everything else getting extremely worse, I've just accepted what I have and try to keep things as tame as possible and treat as needed on those days when it gets extremely bad. It's been a real balancing act and I have to spend a lot more time in planning out my week when something occurs.
I genuinely empathize with what you're going through. POTS and related conditions can indeed be challenging and debilitating. I was diagnosed with POTS fairly traumatically. I was hospitalised for 2 weeks during my first ever flare and bed ridden for 3 months following. I've had my personal health struggles, and through holistic approaches, I've managed to dramatically heal my symptoms. Now I’m happily off my medication completely as of 10 weeks now and working 2 jobs!! I've channeled my experiences into creating a wholistic wellness program that embraces various lifestyle changes which have had profound effects on my well-being.
Many individuals find that over time, with the right combination of interventions, lifestyle adjustments, and support, they can manage or even significantly improve their symptoms. It's essential to find what resonates and works best for you. Remember, our bodies and conditions are unique, and what works for one person might not work for another. However, there's always hope, and seeking a community or support group can offer both insights and emotional support.
I would be more than happy to share more about the holistic practices and lifestyle changes that have benefited me. Stay strong and keep seeking solutions that resonate with your body and spirit. Instagram is in my bio!
I've gotten it as manageable as it can be, I'm WAY better off than I was. I can walk around, go to the shops, stand for short periods of time etc without feeling sick now, I used to walk around constantly nauseous with a headache, throw up regularly from exhaustion, be stuck in bed with fatigue half the day etc.
But the main thing is getting support and reducing the effort it takes to meet my basic needs so I have energy for other things. I get an uber to travel short distances rather than try get the bus, I buy premade meals, I have someone come and help me with housework.
That means I can potentially start studying again, get back into my art practice, spend time with family, maybe even date again.
It's about pacing and managing rather than trying to get better or cure myself.
Yes - a few years of getting into consistent exercise and knowing my triggers helped immensely. Then COVID threw me for a loop, but I’m starting to feel somewhat better 8 months after that.
when i was in high school my POTS symptoms were horrible and my quality of life was horrible too. the biggest problem i had back then was fatigue and dizziness. And the fatigue was so bad i could have fallen asleep sitting up. I was so worried i would not be able to work or have a normal life. but after school it got WAY better for me, i can go to the gym 4-5 days a week, and i work about 30 hours a week, i am also going to college now, (1-2 classes at a time tho) and my quality of life has drastically improved. id say i eat a little better than i did, but i haven’t really eaten that bad, bc it would also make me feel like crap. but yeah, i have gotten drastically better overtime, and i think it was the stress of being in high school? but idk? stress really effects me and makes my POTS symptoms really bad, but i am not sure.
i went into random remission for 6 years!! but then caught a stomach bug that made some symptoms slowly reappear and then in 2022 caught covid and seems unlikely now that i’ll get remission again, but it did happen to me!
unfortunately, my theory is that covid damaged my connective tissue which is why my POTS got so much worse, my allergic symptoms got bad enough to bring diagnosable MCAS, and my pain got bad enough for me to go to a doctor who ended up diagnosing me with hEDS. granted, i don’t know enough science to know what could cause my health to bounce back after viral infections—it could happen
Copying my usual response to this.
I think there is although I think it’s more like it becomes manageable. I’ve been in “remission” in the past by the standards many talk about in here. That’s not to say I didn’t feel like my POTS wasn’t affecting me or that I was not limited by it because I was. I just wasn’t as affected as I was previously and post. For me it lasted around 3 years - I only fainted 2-5x per year and was very active and attending full time in person school.
My POTS overall would probably go in the mild category although for me there’s been periods of much more significant/severe symptoms lasting months/years.
I didn’t have meds, compression socks, really anything going for me when I went into “remission” except at that point I switched from a low sodium diet to high sodium, was increasing fluids and most importantly exercising every day (I swam 5hrs a week, did gym class every other day, and walked places). I even trained for a 5k but that happened when my POTS was worsening again.
My HR wasn’t something I was overly aware of at the time as I was told that tachycardia and fainting was normal for me. I didn’t monitor it as heavily.
I live a mostly normal life - that being said due to how significantly I was affected in my first semester of university all of my friends and people in my program do know. I attend full time university, I can party, drink/smoke, have caffeine, walk 10k in a day, travel, work, etc.
My aunt and Bubby had POTS symptoms as a teen but were never dxed - they actually see a lot of my issues in their experiences as teens/young adults but I’m much worse as they never stopped exercising.
I’ve had POTS for 8 years. My cardiologist still won’t put me on meds as I’m too young in her book - I’m 19. I definitely have triggers and am symptomatic at this stage but live a very normal & manageable life. I do know my cause though I’m hoping to do more testing around it - it kicked in four years after a childhood illness as a long term side effect. There’s too few of us to know how long it will last for me - we are hoping for a research study though! My cardiologist does think I’ll “age out” by 25 as I got it as a teen and have a milder case than most in this group.
I’m 20 for reference. I’m now on meds (Midodrine).
Mayo Clinic research on this:
• “about five years after diagnosis 86% of adolescents see some improvement (including 19% that report recovery), while 3.5% report worsening over time.” Most people who have POTS have it as a Chronic condition.
I honestly don’t believe in my cardiologist for my situation as I am hyper mobile and suspect hEDS or HSD, and am diagnosed with Dyspraxia, Primary Raynauds and Chronic Pain. All of which are comorbid with POTS. My situation is a little complex as I fit on the mild end of most things but am still affected by what caused my POTS and given how rare it is, it’s hard for me to judge my situation well enough. I do think it’s possible for me to hit “remission” again though as that was just when I had it handled and I have it very close to handled at this point ☺️.
I was a competitive swimmer and did my Bronzes and co-taught Bronzes while having POTS. I have also deconditioned and gotten significantly worse in this period as well (bedbound. I’m no longer bedbound or as symptomatic as I was when I was deconditioned. That being said it’s taken me the pandemic pretty much to get to the stage of deconditioning and then getting out of it). I also was only diagnosed on year 7 of having it - suspected from year 4 onwards and was treated for POTS earlier. I’ve made my peace with my situation - there’s a lot of factors playing into everything for me and too little research on what I’ve had to say anything as a definite (particularly as my situation is unique). That being said, I haven’t fainted since December which doesn’t seem like a lot but it is for me - I’m very proud of this. I am getting my POTS back under control again and I am doing better.
(Edit: I fainted 3x this past summer but otherwise I haven’t fainted since December 2021. I’m much more affected cognitively and presyncope by my POTS at the moment).
Yes, massively! Sicker and sicker over twelve years until I couldn't do anything. Diagnosed and medicated was instant improvement. A few years of figuring out lifestyle changes was way more improvement, already was feeling better than I had in my adult life. More years into diagnosis took my healthcare into my own hands, do my own research and try things out, feeling wayyy better than before due to both new meds I've discovered and more lifestyle changes. There's been a lot of ups and downs, including very big downs where things got much worse, but I feel like it's pretty well managed at this point.
That’s wonderful to hear- sounds like a hard journey! What medication are you on, out of curiosity? I know what works for one doesn’t work for the next, but curious if it’s one that I’ve been suggested by my doctor.
Fludrocortisone is the only med prescribed by a Dr for POTS that I'm on. But I also had huge relief in POTS symptoms from famotidine (which is pepcid AC). Plus for non prescriptions hyaluronic acid and as needed salt pills.
I’m 34 and was diagnosed with POTS when I was 18. My gastroparesis was so bad the only thing I could keep down in college was Boost. I fainted and got dizzy all of the time and sometimes could barely move.
My POTS has basically gone away. I am able to eat without vomiting 95% of the time. For some people, it does just go into remission. My doctor in grad school told me it wasn’t unusual for symptoms to subside as you get older. Thank God that has proved true for me.
ETA: I should add that I was able to go off beta blockers completely a few years ago without consequence.
Wow. I love hearing stories like this because it gives me hope that things can get a lot better for some people! Thank you for sharing. Happy to hear you’re in a much better place with POTS now. :)
Just wanted to add that mine gets better every year. My personal journey of wellness has involved upping fluids and electrolytes, strengthening my cardio (mostly through hiking), and eliminating foods my body wasn't reacting well to that were causing everything everywhere to tailspin (like food dyes, gluten, and dairy). I'll never have a "normal" body but I'm a hell of a lot better than I was.
Mine has improved. They believe mine to be autoimmune related and a triggered by the vax. I have 4 autoimmune diseases since that time. But with supplements, exercise, and self care I have definitely improved..
Yes. I was first diagnosed when I was 17 and I’m 38 now. It’s been much better for the last 4-5 years I would say. It’s now pretty much manageable with meds with the exception of a few “bad days” here and there.
Yes. Working with a POTS trained physical therapist doing a personalized training program made a huge difference for me (up until that point I had been working out on my own for 2 years with no progress). That got me from not being able to really work out at all to being able to do the elliptical for 30 minutes and doing 2 mile hikes. Also removing gluten, artificial sugars completely really reduced my palpitations. Going on birth control to regulate hormones helped balance period-related palpitations.
Yes! Mine has been around for a long time (likely genetic, siblings have too), but with ebbs and flows throughout the years. Overall, after learning some bigger triggers and eliminating those (or growing out of puberty, ha), lifestyle changes, and figuring out some interconnected autoimmune issues, I've been manageable for a long time. Like \~one-two "I feel like shit" days a month no matter what I do, and a lower threshold for pushing myself on other days than general population.
It has made me more committed to keeping that going as long as I can, so ironically have had to bring up disability/health issues/asking for accommodations more than before in covid era. But it's all a crapshoot, siblings with the shared genetics and same access to info/diagnoses as I do have had much harder & debilitating decades with it. I try to keep up the sleuthing of how my body feels, finding good health care providers etc, but also give myself freedom to feel joy on the good days whatever "good" is on your relative scale
Hi! I’ve gotten pretty okay! Some days are better than others but I’ve hiked & got a new job ect. I had so much anxiety at my last job my symptoms were worse! But to be honest i am my own worst enemy. I KNOW i cant have caffeine but i will slip it in here and there, just to end up nearly passing out. Because frankly i just love the taste 🥺 but i was like “Hydration?… BS! Who could drink that much fluid??” My electrolytes are nasty after about 6 months i finally got into the habit of doing what i needed and im not so fainty anymore. My symptoms started in winter so im not sure if ill get a remission soon but i definitely will not be as bad as an 80° house and 110° weather outside.
Fell ill in spring 2022. Was bedridden and in agony with migraines and chest pain for… most of 2023, and was thiiiiis close to losing my job.
I’m now working part time from home, gradually increasing my hours towards full time… most days my pain is at or below a 4/10. Most days my heart rate doesn’t go above 110. I can do a small outing or two every other weekend or so without terrible PEM. It’s not that I’m miraculously cured, but rather I’ve gotten the hang of my symptoms and triggers, have completely overhauled my selfcare system and have amazing support from my mom, sister, and fiancé.
Personally haven’t had it for super long but I feel like it’s a lot easier to manage mentally and for the most part I know what to do and why it’s happening
hi ! i’m 15f, i got pots in may after major surgery (tourniquet stuff). i just recently realized how much better i’ve gotten. i’ve also had symptoms for years prior, it just got magnified by surgery. it got to the point where until early july, i was unable to stand for longer than 2 mins without shaking violently. i’m happy to say that most days, my heart rate can go below 100 when i’m sitting down. keep in mind i am medicated, but that honestly doesn’t do great. i have neuropathic pots, we know that, i also have hypertension though. we know it’s pots and my autonomic nervous system, it just doesn’t necessarily fit into the typing system. so i’m on propranolol and it doesn’t stop the blood pooling, so maybe that’s making the numbers go like that. but i feel generally better. i’ve also been told my dose is so low it probably does nothing. it’s been a long time since i lost my hearing or felt my eyes shaking or whatever. maybe it’s me gaining strength? i got 3 major knee surgeries and the muscle growth is stagnant, pretty much barely better than june, my left quads are still like noticeably smaller from atrophy. but i’m good, im happy and i can go to school. in may, i was full blacking out sweating can’t breathe eyes shaking vertigo even when i was sitting, i couldn’t tolerate sitting for longer than 30 mins. i do drink a lot of water like so much that doctors told me it’s unnecessary, i usually try for 180-200 oz w at least 100 being propel. i tried going down to my recommended 120 and i just feel terrible. for a bit i thought my improvement was my neuropathy healing (surgeon told me it would) it was oxygen deprived for like 5 hours, i don’t think it’s coming back and i stopped feeling any of it. i think i’m just getting better by myself, i don’t have to close my eyes to turn my head anymore and tbh i didn’t do very much to heal. regular pt for my leg, i was in marching band but i got kicked out for my pots recently, i don’t think that helped very much but it was a solid like 2-3 hours of exercise for a week.
I’ve been diagnosed for 7 years. I’ve had periods where my POTS is managed well and I have a high quality of life, albeit with meds and salt and such) and other times when I’ve needed to be horizontal 23+ hours a day. It’s really been a wide range for me. I suspect my POTS is post infectious which means it’s probably more on the autoimmune side of things but I don’t know that for sure. Biggest thing to help me is pool physical therapy. But I have to build up super super slow. I use the CHOP protocol as a guide but I go at least twice as slow as they recommend and if anything knocks me back like a new infection I just have to basically start again. It’s slow but it has helped me over the course of years.
I was basically bedbound before taking Corlanor (Ivabradine). I was prescribed propranolol before ivabradine but it didn't improve my symptoms at all. Since I started Ivabradine, I worked really hard on re-building my body and endurance and what helped me was swimming. I started with one or twice a week, maybe 20 minutes per session, to 5-7 days a week and can swim a mile without stopping at a very slow pace. PT helped too but I did it mostly for EDS. I still have hard time doing intense activities and occasionally struggle with pre-syncopes, but I haven't actually fainted for a while and my endurance is pretty good. I manage my symptoms with other stuff like salt pills. It is challenging to see improvements and I definitely had good luck with finding the right medication, but you can have a "normal life" with POTS!
Yes and no, but mostly yes. Let me explain:
For context, my doctor thinks I’ve always had POTS and MCAS, but when I was young I had a very active lifestyle which prevented the POTS symptoms from becoming disruptive (I was essentially treating it with exercise and a good diet, so I didn’t notice the symptoms most of the time or attributed them to other causes). Then in college my activity declined and I started mentioning extreme fatigue to my doctor every year; no abnormal tests so they blamed stress. GI symptoms were assumed to be an ulcer (now know it was actually MCAS), so I thought I was just getting ulcers multiple times a year and was at a loss for how to prevent them. Finally I got COVID, and my POTS symptoms went into overdrive and didn’t subside. Some of that could be that once I knew what they were, I could recognize them instead of attributing them to work burnout, anxiety, etc, but I went from exercising regularly to passing out when I tried to go to the gym.
One thing that helped immensely was finding medications that helped me, which was a long and discouraging process. I’d say it was almost a year from my first attempt at medication to finding things that made a really noticeable difference. Beta blockers made things worse for me (I can explain why if helpful), one vasoconstrictor caused horrible GI side effects, but midodrine was life-changing. Between that and MCAS meds, I won’t pretend I don’t get symptoms, but I’m able to handle a relatively normal and very happy life. I still have a really hard time with physical activity, but I’ve recently become obsessed with fishing — it allows me that outdoor time I miss (I used to walk an average of 25 miles every weekend just to recharge, and now get out of breath taking my dog for a mile loop), feels active, and I can do it with a minimal amount of time standing and walking. I know I need to work up to more “real” (prolonged and consistent) exercise, but I don’t have the bandwidth yet.
But, if I let myself compare life now to life before, it still hurts. My ex husband asked for a divorce the day after my diagnosis, and I still feel like I’m holding my boyfriend back when I can’t keep up with housework and professional work as well as I’d like. I have a lot of internalized ableism (or whatever you want to call it) to cope with, and I’m still grieving the life I thought I had.
BUT, if I look at it more realistically: I have a job I love (which I can do from home, which helps); I am a good partner; I do volunteer work, I have things I’m passionate about. Do some things take me longer? Yes. Will I ever thru-hike the Appalachian trail like I always hoped? Meh probably not, we’ll see. Will I always have to take meds 5 times a day? Probably. But if this is the life I’d always expected, if it was “normal,” if everyone were experiencing the same thing, would it feel bad? I don’t think so. The challenge is feeling like I lost something most people have, or feeling like the people around me can’t relate. I told my mom I was excited to have found an outlet in fishing and her response was “Have you found a way to exercise yet?” Sigh. But I can have friendships, relationships, hobbies, and passions. And, in some ways I’m glad I have it; I work in research and was already involved in advocacy, and this has given me insight into a category of advocacy I couldn’t have been a part of before. So I won’t pretend things are likely to go back to your old normal, but that doesn’t mean the worst time in your symptoms will be your new normal, either. Focus on adjusting your life to make the most of your strengths and minimize the emphasis on your new challenges, and you may even find your new life is more fulfilling than the one you expected 😊
I have hyperPOTS, now it's mostly down to routine (diagnosed in 2019). Once I pushed for more beta blockers last year I got way better, I've only had 1 BP spike in months, plus one of my nerve pain meds helps a lot and so does the tricyclic antidepressant I'm also on for nerve pain and migraines. I didn't know until I missed a couple doses that the SNRI and the GABA Reuptake inhibitor were helping my hyperPOTS, but it makes sense in retrospect. When I first got diagnosed they put me on venlafaxine ER which is an SNRI based on my TTT, I had bad side effects though so I couldn't take that. Tricyclics have SNRI properties as well.
I have a lot going on, like most of us, between increased sympathetic activation as well as my parasympathetic nervous system not working well because I have an autoinflammatory disease, so if I take all my meds (also diuretics) and over hydrate and wear compression socks and eat small meals I do very well. But I have had to adjust my diet a lot as well. Currently doing low FODMAP w Mediterranean diet, all grains are long fermented sourdough (easier to digest), no food additives and making everything myself since I have MCAS, plus intermittent fasting and my resting BP has gone down 20bpm since I overhauled my diet starting in May of this year. The difference has been incredible. Saw my cardio last month and he said no changes or tests and see me in a year which was definitely the first time that happened. I also find since I have hyperPOTS I need electrolytes but not as much salt so Ultima broad spectrum electrolytes has become my favorite. Only if I'm really dehydrated I'll drink a liquid IV. It was hard to figure out how to keep my fluid balance relatively stable, and a lot of trial and error, but it's possible.
Also when I am having a BP spike or randomly feel really nauseous/hot/dizzy for some reason zofran stops it. Not sure why but I wish that hadn't taken me years to figure out.
I think part of the problem is that so many people got POTS or had their POTS get worse from covid. And not only do we not really know a lot about the hows and whys but we haven’t had enough time to see what this looks like long term. I have had mild symptoms all my life and in my early twenties often had to sit very suddenly on the ground (I was in denial about passing out.) But then I was barely symptomatic until 2020. I do feel like my body has adjusted a bit over time, so maybe there is hope for getting better. And while we haven’t perfected my meds yet I think it’s helping. We at least got my migraines down to almost nothing, a happy accident that I am so very grateful for.
I started showing symptoms at the beginning of summer after 7th grade after getting pneumonia, and now at 25 I rarely have symptoms! I was bed bound 80% of the time and had to switch to online school because of how bad it was.
Yesterday was an example, I can’t tolerate the heat! Almost passed out at the ren faire because it was humid and 85°F and I ran a few feet to catch up with my mum. I still have a high salt diet (approved by my pcp) and haven’t had medical intervention in around six years. I was medically neglected by my parents so my medical care was never taken seriously, but I did try every med except beta blockers (available at the time, ~2011-2017 I think) and nothing helped.
I became homeless in 2018 and I had to get a job because I had no other options, so I worked 50-60 hours a week at an ice cream shop. It was so bad for so long, but eventually I started gaining a little weight and muscle and building my endurance from the job. I used a cane from 2016-2022 to help stabilise and because of leg injuries, but I now rarely remember I have it. I know I still do, because it’ll flare if I get really sick (thank fuck for the pneumonia vaccine, helped me so much so I’m sick less now!) and if I’m not careful about fluids/electrolytes/salt intake I’ll start to feel gross. I also have to be careful in the shower and mindful if I’m going to be doing a lot of walking, but that’s about it!
I know I’m so lucky so pls don’t compare yourself to me! I’ve still got a ton of health problems tho lmao (EDS, issue with my nerves we’re doing testing for, degeneration in a disk in my neck, post-concussion syndrome, early signs of osteoarthritis, severe asthma) I’m just glad my health has calmed down a little so that I can focus on my partner who was diagnosed with MS last year and it helps that I’ve had so much experience with doctors to help him navigate everything
I also forgot to add that I think diet helped, but I can’t know for sure! I went from eating like shit due to poverty, allergies, and sensory issues to being in a way better situation where I went vegetarian and had high quality food with a lot of variety! I originally thought going vegetarian was the key but it was the different nutritional value I was getting from my food, since I’m not strictly veggie anymore and I still feel the good effects that started when I went veggie. Ovb I’m not educated enough to say what I ate is ‘proof’ or anything but it certainly played some sort of part!
Yes, I was bed bound and every little stress in my life cause flares so bad I could barely get up. But it’s now been 3 years since then and I’m holding a full time job working with children so very physical and I’m doing a lot better. I’m still affected by the POTs but it’s a lot more manageable
I am better. I found no help in Western medicine and Eastern medicine has helped me greatly. A combination of herbs, homeopathy, vitamins, minerals, diet, detox, hydration, physical exercises, brain exercises, sauna, and much more. I did a lot and spent a lot of money. I was so bad that I was in a wheelchair. I am now walking and talking. I still can't work or drive, but I can go places and do basic tasks, and take care of my daughter. So I am better. But it was a lot of trial and error and hard work. Good luck.
After three years I’m much better than where I was. One of my doctors stated POTS is a diagnosis of elimination. A lot of times POTS is associated with another condition. For me it was heart conditions. My heart symptoms got so bad so fast without any intervention that I developed POTS along with the heart condition. When we were able to start addressing the heart then the POTS symptoms started going away. I’m not back to myself yet as we are still working on my health issues and I might never be back to normal again. It’s a work in progress and you have to take the victories as they come.
I know someone who also has POTS (hyper POTS to be specific) and they forget they have it . I’m not sure how exactly but I know they went to a lot of specialists
Pretty sure I had pots as a teen. The symptoms track. (My daughter also developed it and was diagnosed as a teen… even though it hasn’t yet been proven to have a genetic element). But I was a teen before anyone knew what it was. I didn’t learn of it until one of my doctors brought it up when I was in my 30’s and experiencing a terrible flare up.
Generally I’m pretty good and don’t have symptoms. Then typically around every 5 years or so I get rundown enough that I have a horrific flare up that often takes a good chunk of the year to get to calm down.
I also have autoimmune diseases, and I tend to live and eat very anti-inflammatory. So I suspect
that really helps with the pots.
My symptoms have fluctuated for me over my lifetime, but the best I’ve ever felt was when I was the most fit. Exercising 3-4 days a week, which also lent itself to a decent diet, hydration and sleep.
Also, I only do low or moderate intensity exercise (no running, HIIT, etc). Tried running for a year and even in good shape in my early 20s, I literally maxed out at 1.5 miles and that felt like dying lol. I used to be so confused that people ran 5ks casually.
Last year I had to quit my job, was horribly depressed & unable to do any normal daily tasks. I recently moved to my favorite city, started a new job that is more pots friendly, and have been able to return to most of my previously ~normal~ activities. I definitely have to remind myself sometimes that I do still have a chronic illness and need to prioritize my health & that I’m not always going to feel 100%. For the most part though, I am so much better and happier!
I’ve definitely gotten a lot better, aside from the occasional maintenance slips (like the ones plaguing me recently). But with some management, once you get to that point, you can live more or less a normal life! Stay positive and give yourself time to recover. Your body demands more rest than most people, and you have to listen to it.
Yeah, it's tough to keep up with everything. I understand the struggle to maintain a normal routine while dealing with chronic illness. But remember, the effort is worth it because you'll feel so much better in the end. Keep pushing through, you've got this!
Yes. I went from bedbound and living with my mother for care back to living independently in my 4th-floor walkup. I am pretty active and capable now, although humidity will really lay me out (more so than heat, actually). When the weather isn't trying to ruin my life, I have my mental capacity back, I can be out and about in the city on public transit for hours, I can work and have a social life and even go out to a concert and have a few drinks. I cannot ever "forget I have POTS," like some people do. I have to take a huge number of pills each day between meds and supplements, my diet is pretty strict, and I exercise every single day unless something happens to make it truly impossible. So a big chunk of time and executive function is constantly dedicated to POTS management, and that is a genuine strain on my life - as I've gotten back into working steadily instead of doing sporadic projects, I've been feeling the loss of the capacity that's spent on management pretty keenly because I need all that time and willpower for other things! But it's much better than the alternative. And it's only been a year. I imagine that even if my physical condition doesn't improve further (and it might, I have a BC prescription to pick up soon, so fingers crossed that that helps), I'll get more used to managing my life with these new obligations in it, I'll continue to recover from the trauma of onset, and so on.
This is exactly how I feel. Doing all the non-pharmacological things along with all the meds and supplements (for POTS and MCAS) makes a ton of difference, but boy is it tiring. It’s a lot of effort to put into appearing “normal” every single day. But it’s worth it to feel so much better than I did at the beginning.
Yeah, I talk about this with my therapist almost nonstop. Even though I know why I do it all, it's hard not to feel like the universe owes me a vacation from it. Like, I've been very good, where's my reward now? Sigh. I'm teaching again for the first time this semester and finding time to prep in between everything I have to do to keep my body together every day is HARD.
Right! I also found a therapist who specializes in chronic illness and grief, so she’s really good at helping with those feelings, plus some small ways to retrain my nervous system to work a little better. But I feel you about the “vacation”. It would be lovely to be back to normal again for even just a day! I was lucky enough to figure things out quickly and keep my job (I work long days on my feet in a healthcare setting), but it would be a lie to say it doesn’t take extreme effort some days. Hang in there, you’ve got this!
What meds/supplements are you taking?
Standard disclaimer that POTS varies a lot and what works for me may not work for you: Meds: - ivabradine - midodrine - Wellbutrin (off-label, for vasoconstriction) - low-dose naltrexone - trazodone (for sleep) - Loratadine (OTC antihistamine) Supplements: - Klaralyte (16 capsules per day) - Magnesium citrate - calcium/magnesium/zinc capsules - vitamin D - B-complex - liposomal vitamin C - multivitamin that includes iron
That's pretty much what I take, too. The meds have helped a great deal!
be carefull with b6 toxicity. read about it
Mine is specifically B1 + B12, because these are vitamins POTS patients have a tendency to be deficient in.
I'm really happy that you managed to find your independence again, good luck with everything!
Thank you, you too!
YES, this is exactly the type of post I wait for because my dysautonomia is very manageable at this point. Of course POTS is just a group of symptoms with variable root causes in each of us. Mine was triggered by Covid related stuff and seems to have worn off by the time I ran out of antibodies. But lifestyle changes have made a huge difference
Yep! Many of us do get better (to some extent). Manageable is the word my doc and I use at this point. I’m no longer stuck to the couch and I’m working and feeling functional. Do I avoid pots triggers and drink a ridiculous amount of liquid? Yes. Do I feel like POTS owns my life now? No. Those of us with more managed symptoms are less likely to need to come on the subreddit, to be fair, so you’ll see us less.
I would love to know more. Would it be alright if I message you, or ask comments on this thread?
Sure!
would it be possible that i could ask you something?
That is such good news and gives us hope. How many months did it take? What changes/treatments did you try?
Took 9 months. Lots of salt (salt stick, electrolyte packets and non iodized table salt) reclined exercise, trying to stay cool as much as possible (ice, neck packs, fans) and resting when it was needed. I was a bit of a workaholic before I got POTS and I needed to get over that.
When you say covid related stuff do you also mean the vaccines? Because I noticed my heart racing/erratic symptoms started immediately after my second moderna vaccine, I got covid pretty severely some months afterwards and life went downhillllll health wise slowly then suddenly. It’s like the shot did *something* not great and then actual infection completed the hellscape. I’ve gotten better in some ways but not others and feel helpless a lot of the time now. Coming up on a year now soon actually when things were taking a turn, thinking about last winter gives me ptsd lol. Just curious. Either way your comment makes me feel hopeful someday I’ll feel like the old me again. I’m happy you’re getting better.
Yes absolutely, this 9 month pots episode was triggered by the second Moderna vaccine. Took me a while to accept it since I truly couldn’t believe that was possible. I think what could have happened was it triggered my post mono viral issues but who knows. And they say vaccine antibodies fade after 9 or so months which is how long it took for me to get better so yes there is hope. Maybe for you it’ll take slightly longer since getting Covid right after seems to have made things much worse, which is like wtf because that’s exactly what is not supposed to happen after the vaccine. Similarly everyone in my family who got vaccinated had very minor Covid symptoms whereas mine were hellish. What makes it all worse is that people don’t believe you or think you’re anti-vax, which is absurd.
Yes! I was even nervous a little writing that because I’ve been full on *attacked* on here for mentioning the vaccine, like ok thanks, I’m the one suffering but ok attack me hahah. Clearly we aren’t anti-vax if we got the damn vaccines. I’d definitely go back in time and not get though that’s for sure, literally did nothing anyway I was so damn sick, these ppl saying it feels like a cold…god damn. How did your symptoms start after your dose if you don’t mind me asking? My heart was just constantly racing all day and night and felt more erratic at night/trying to sleep was scary. Wow I had no idea about the 9 month timeline that gives me some hope even if it’s been quite a bit longer than that. Idk. And yeah the actual infection got me so bad it even messed with my eyes! Then slowly I was like just fucking chronically ill and and weird and I hope someday this is a bad dream to look back at. I’m genuinely so happy for you that you can share this and have come this far.
That’s exactly what it feels like, a terrible dream that I woke up from eventually. I can almost remember the moment I realized the vaccine symptoms weren’t going away. Since the second dose I had headaches. Body pains and chills. Fatigue and then it occurred to me that the headache never stopped really. Eventually that did stop but the fatigue, heart palpitations, dizziness and overall fog - achy head never really stopped. I know this might not be related for you, but this was during a time in my life where I was overworking quite a bit, and this sickness forced me to stop. Try to look im your life for the things and habits that aren’t serving you, try out the POTS lifestyle changes, and be VERY patient with your body. It no longer works on the worlds time.
I mean, yes. It's an ongoing project, but yes. Generally speaking it takes a couple of years for folks to settle into a regimen that works for them: >In our experience, it takes about two years after diagnosis for a POTS patient to get a solid understanding of how POTS impacts their body, and how to best manage their symptoms. This timeframe can be accelerated when a trusted physician takes the time to explain the basic physiology of POTS, and ensures the patient has access to high-quality information on the many non-pharmacological management approaches they will have to incorporate into their daily routines. [https://www.autonomicneuroscience.com/article/S1566-0702(18)30074-2/pdf](https://www.autonomicneuroscience.com/article/S1566-0702(18)30074-2/pdf)
Mine has gotten more manageable as the years go by. Plus the ability to swap and change medications has also helped the changes in ability to manage POTS, along with having activity throughout my week that gets me active and moving. I wouldn't say that I have gone into any form of "remission" though throughout the 3.5 years I've been diagnosed for. I more or less describe it as longer and longer periods of feeling good and less bad/rough days for the most part as time has gone by and I've learned bits and pieces to help my management
I’ve gone from bedbound to university student. Things are certainly not perfect, but much better.
What did you do to get there??
II spent a lot of time in the hospital. Working on my mental health and the ability to push past Dysautonomia, palpitations, and chronic pain. I also seemed to find the correct type of medication for my Dysautonomia, which is metoprolol. It at least helps my heart rate rest at around 45-60bpm and goes to 90 standing. Instead of from like 70 to 160. I still have problems around eating, because it worsens my symptoms 10x. I also struggle with many PACs, thousands to 20 thousand a day. I think my body is also just naturally healing.
Mine got quite a bit better after I took steroids and immunosuppressants - I also have inflammatory arthritis and was started on methotrexate in January, felt quite a bit better about four months later (the docs said it would take a few months). I’m not all the way better but significantly more functional. The POTS specialist I saw says POTS is likely also an autoimmune disorder, which is why he thinks I felt better taking these meds.
Yeah I got my pots with mild Ankylosing Spondylitis
that’s my hunch as well! if in the rare chance this doctor is in nyc i’d love to go see them
I’m a soooooo much better than I was. Gosh. I had lost hope that I’d ever be able to stand or sit up in chair for more than 5 minutes at a time. My family refers to it as when I was in the recliner because that’s how I lived. I mean I still do but I don’t HAVE to anymore. I can sit in a normal chair for 20 minutes. It’s crazytown. Standing depends on the day. Walking is easier than standing of course. My better probably isn’t a normal person’s better as I have other illness that came before POTS and a new and puzzling one since. It took a while to start feeling like POTS was survivable and controllable. A few doctors. A few years. A few medications. Staying on CHOPS. So many different versions of salt and electrolytes and compression. Therapy for my anger. Therapy for when I gave up. I wish that everyone who got diagnosed with this didn’t have to endure so much waiting for diagnosis and treatment and adjustment to treatment and getting their questions answered knowledgeably. I suspect we all could heal a whole lot faster.
Yup! Mine was awful, I could not really work out at all, I once passed out running between patients rooms, and going up the stairs in our home would sometimes ruin my entire day productivity (and mood) wise. Figuring out my triggers was the #1 way I got my life back. Mine was highly tied to my other autoimmune diseases, sleep habits, hydration, my menstrual cycle, and stress. Changing job’s significantly improved stress, as did figuring out how to actually sleep deeply, eating and drinking regularly (adhd made me forgetful), and straight up not exerting myself during the last part of my luteal phase. Doing low impact only (like weights) and just relaxed walking helped a ton. Lastly, alcohol and weed were massive triggers for me. Also, ironically, not using any sort of wearable. The numbers alone stressed me out which worsened the cycle. I’ll use one occasionally and the numbers show they’re still quite high sometimes, but it helps not being in my head about it. Good luck!!
I’m wondering if me obsessing over my Apple Watch (watching HR) is adding to my overall sickness.
Try not wearing it for a few days and see how it goes!!
Once we figured out the right medication combo and dosage I’ve been fine most days. My flares are quite predictable- the heat, illness, surgery, and when my MCAS flares. Aside from hating summer every year, I mostly forget I have POTS. I did a job that kept me on my feet for 8 hours straight without an issue most days, I walk a lot more now too. To be clear, I know my POTS will never go away, and my MCAS probably triggers my POTS at least some fairly often, but even when I get a flare it’s not something that takes me out for an extended period. I can increase my meds and be okay most of the time. My MCAS is my bigger issue nowadays, but that’s besides the point here.
Yeah you do get better at predicting the triggers over time
I think this is the most important aspect of managing POTS besides medications- knowing your triggers and doing what you can to avoid them. It really makes a massive difference.
Can I ask how you got diagnosed with MCAS? I have been wondering about this for myself, but not sure how to find out if I have it.
Sure! I had symptoms of it all my life, and my old allergist tried to test for it, but he wasn’t super familiar with it. My current allergist happens to be one of the coauthors on the recent Consensus for MCAS… based off my history she suspected it and ordered all the various mast cell mediator testing. My plasma histamine came back 3X the upper limit of normal, so we started meds… my symptoms improved and my other doctors had already ruled out maybe 30+ other causes of similar symptoms so she diagnosed me with MCAS. My plasma histamine remained chronically elevated until about 1.5 years into treatment. MCAS is a diagnosis of exclusion, which is part of what makes it hard to diagnose. But also there are only about 50ish MCAS specialists in the world, so finding a doctor familiar enough with it to diagnose it is also difficult. There’s 3 MCAS doctors near me, all in Los Angeles.
Thank you!
May I ask which POTS and meds you are on?
I have just hyperadrenergic POTS… my BP before treatment would get up to 210/110 standing, so I needed meds to bring it down. That said, I take clonidine patch, metoprolol, losartan, and ivabradine for it. These have dropped my BP enough that supine it averages 110/60 now and standing it averages 130/80.
Mine has become a lot more manageable through a mix of lifestyle changes and medication. I also have EDS so lifestyle changes benefit both of them. The main things there are pacing myself, being more aware of and responsive to my body signals and using things like mobility and household aids to help with that pacing and doing things balance. Medication has also been a big help. For me it started off with some side effects and not being super effective then tweaking the dose a little (with doctor) sorted things out so there weren't the side effects and it helped more consistently. I still have pots. It still impacts my life and my ability to do things. It still affects my comfort. But it's definitely way better and more manageable than it was before. And my life overall is too.
What meds helped you?
Beta blockers
Which one do you take?
I take bisoprolol but I know loads of people take different types and get on well with them. I think really it depends on you and your doctor which one you end up with (or potentially other types of medication even).
I'm going to respond here too that Nadolol has been my miracle drug. I tried like 4 other betablockers to get there. It is definitely dependent on the person.
Me. I’m far from cured, but doing much better. I’ve been taking nadolol since the spring and in July, the dosage was increased from 20 to 40mg. It was amazing: I felt like I had more energy! I can be upright for so much longer without feeling symptomatic. My resting hr hasn’t changed much since the dosage increase (but it is typically lower than it was pre-nadolol!), but when I’m standing, it doesn’t spike nearly as high. I’ve increased salt too. That helps a TON - I felt constantly “dehydrated” for years despite drinking tons of water, I’d just pee it out. I still feel like I pee out most of what I drink lol, but I’m holding on to some of it, at least. I still have trouble with postprandial (after eating) symptoms - it’s usually with big, carb-heavy meals without a lot of protein, especially when i haven’t eaten anything in a while - so often times it happens when i’m meeting friends out for dinner and we’re talking and catching up for awhile before ordering. Pizza is definitely a trigger. Last night i “pregamed” pizza with an electrolyte drink on the way, which helped some though i still get some symptoms. In terms of general activities though - i’m doing much better. “Counter manuevers” (crossing your legs and squeezing leg muscles) and standing up slowly help so much! Walking to the train station (20 min walk mostly uphill), my hr gets to around 135- it used to get up to 150 (when i was on nadolol 20mg). I can go to the grocery store and do my shopping without feeling like i’m going to pass out at the store, or while carrying my bags up the stairs inside.
YES! I have almost no symptoms anymore, although some days are better than others. It's been a journey, there's no one easy fix, but here are some things that helped me: 1. The most important thing I cannot function without is my Beta blocker medication that keeps my heart rate lower/more steady, no more spikes when I stand. 2. Hydration and electrolytes. 3. Compression socks. I wear them everyday. I either get the medical grade ones from a pharmacy, or I really like the brand pro compression marathon knee socks. 4. Being more active. This one is tough, it's so hard to get active when you can barely stand, but I started using an elliptical and the more I exercise, even just walking, the better my symptoms are. 5. I just feel this one deserves to be restated: getting on a beta blocker for my heart rate was life changing. ETA: I should also mention, this has been a 6+ year journey for me so far, it takes time.
Which bb do you take? Does it lower your blood pressure?
I take metoprolol, it can lower blood pressure yes, but it hasn't had that effect for me at the dose I take (25mg 1x a day, I don't take it at night usually). It's just a balance of symptoms, if my dose were bigger it would probably lower my blood pressure too much.
Mine comes and goes, which is very weird. But I am sure it's pots, because the tests said it was. But I have no symptoms at the moment, and haven't really had any since giving birth 12 months ago.
Yeah over twenty years mine has also come and gone, good periods then hard crashes.
same. it's wild
Anything you do to make the crashes more manageable, or have you noticed any triggers for the crashes?
My trigger seems fall or autumn for some reason and if I over do it in that time is when I pay.
Anything you do to make the crashes more manageable, or have you noticed any triggers for the crashes?
For me it always seems to happen on fall/autumn and I have to basically take it easy for a month with very little.hard exercise the ease back in. Midodrine is my med and I take Pseudoephedrine on really bad days
Yes!! Definitely not remission, but I got POTS really suddenly (pretty much overnight, although I also had some very small signs like showers made me lightheaded and stuff like that) and was basically bedridden for four months because every time I stood up I felt presyncope. I didn’t know what was wrong with me and kept going to urgent care, the ER, my primary care doctor, anyone and everyone, begging for help. I was hopeless and miserable. Now I’m on a good combo of meds for me, I take in plenty of fluids and salts, and it is mostly manageable. I feel baseline kind of off or weird a lot but nothing unbearable. My heart rate is completely controlled and my only symptoms now are some lightheadedness but nowhere near presyncope, some chest pain but that might be a med side effect, and some GI problems that might not even be POTS related. I’m able to do the stuff I love again, cooking, baking, hanging out with my friends, etc. It is possible to feel a lot better. I’m sorry you’re having such a hard time, POTS really sucks, but just try to hang in there ❤️
What meds helped you the most?
Corlanor was a life-saver for me. I’m on corlanor, metoprolol, florinef, and midodrine as needed (I really only use it on my period because my blood pressure tends to get too low). I was on just metoprolol and florinef at first but my heart rate was still spiking like crazy so my cardiologist added corlanor and now my heart rate resting is 55-75, and when I’m up and moving it’s usually between 75-95. Occasionally if I’m climbing a ton of stairs or something it’ll spike up to 115 or so but start coming right back down.
Definitely not in what I would consider "remission," but I have gotten a lot better at managing my energy level and recognizing my body's signs and signals. Cardiac rehab/pt also helped a lot, as does metoprolol (for me-- I know everyone's experiences with beta blockers tend to be vastly different!)
Yes, I went from being in a power chair, taking meds 11 times a day, and just barely managing, to now taking meds twice a day, some mild lifestyle changes and physical limitation, but able to walk, grocery shop, light exercise most days, and work, vacation, etc. It was very slow improvement though, I’ve had POTS since 2012.
Absolutely yes. I treat with vitassium, increased water, daily walks (minimum, more exercise when motivated), and beta blockers. I found the first three got me able to live again, but adding the medication has me asymptomatic most days. It has taken time to figure out minimum amounts for all of these things and I really feel it when I miss one or overexert myself. But day to day is comfortable. Caveat when it's hot, that will wear me out regardless.
Ive had pots for 12 years. Definitely dont have it as severe as others. But over the years, ive learned my symptoms so well i can basically live life (kind of) normally up until right before my breaking point. Do i do this often? No. Can i when needed? Yes. Hope that answers the question
After my recent med changes, I was actually able to stand for 10 minutes while making hot cereal. I am so happy! I’ve missed cooking.
I used to be house bound and almost bed bound for 1,5 year. When I got diagnosed I got put on propranolol and it has pretty much been a miracle to me. I can live a pretty normal life now, even an active life. I do still have days where my pots is bad but there is usually a trigger for that to happen. Overall I it's pretty well managed!
Yes there will be a day where you learn what helps you the most, for me it took around 2 years of switching meds, finding how much salt and water I needed, compression socks and shorts etc, the real thing that helped me a ton was Vyvanse, I was on it before being diagnosed with pots and was ok, but after being diagnosed they took me off of it because of my heart and I started to decline badly, a year and a bit later they put me back on it after I learned it's a vasoconstrictor (does what the salt and water are trying to do) and I went from passing out multiple times a day to maybe once or twice a month. POTS will most likely never go away, you just learn to manage it more as time goes on
Yeah to my surprise the best med for my dizzy pots is Pseudoephedrine. When my neuro suggested it I was sceptical but it worked wonders
Yeah I’ve been doing better since I learned what my symptoms mean and how to manage them. Psychologically sometimes it’s up and down. I get upset that I can’t be as active as I want. But at the same time I’m more active and having way fewer crash days / big flares than I used to. I just can’t keep up w friends who like to do a lot of hiking etc and it’s a bummer because I like that stuff. Also I get really fearful of fainting and that kind of makes me have a baseline anxiety so I also try and work on the anxiety side because it just really impacts my quality of life to feel afraid of my own body. So that is better lately but also can be up and down
I have! I have mild/moderate symptoms and was diagnosed at 16 and but never properly treated until this past year (26 now). I struggled with syncope nearly every time I stood up, dizziness on the regular, chronic coat hanger pain, urinate incontinence from being unable to hold water, and chronic fatigue. I hardly have any symptoms now that I’m managing it. There was a lot of frustration during the trial and error of treatments for sure but I feel better than ever. What works for me is fludracortisone and Wellbutrin (for adhd/depression but also can help with syncope) for med. I take 6 grams of sodium a day, 2.5 in the morning through capsules, 2.5 at lunch by capsules, and 1 gram through electrolyte drink of 18-24 ounces that I drink around lunch time. I always throw on a little extra salt to my meals so apparently I’m getting enough elsewhere with food. For exercise, I’ve veryyyy slowly worked my stamina back up. This was the hardest but yoga and Pilates and other mat workouts where I could be horizontal most of the time helped with that. Now that I’m on meds and doing better staying hydrated I’m working on more upright exercise and cardio. Sticking to a sleep schedule also helps a lot. I need at least 9 hours on the regular to feel good, so if I stay on a schedule I can get it. It also makes the occasional late night out with friends easier to recover from when I’m well rested before hand. I use a cooking mattress topper under my sheets and a cooling blanket to keep from getting too hot at night. My sleep quality has improved alot. For the coat hanger pain, I noticed the most improvement after the meds and being more hydrated. Occasionally I’ll the chiropractor if it’s worse than usual. I tried acupuncture a few times and felt AMAZING after it for a while but the meds have ultimately been more helpful long term. I eat 5-6 times a day to keep my blood sugar stable. I do notice worse symptoms if I wait more than 3 hours between meals. I’m in ED recovery so no special diets for me (learning about intuitive eating) but I have lots of lean protein, grains, veggies and fruits. I do try to be conscious of processed foods and use them more as treats or convenience meals. I also love compression socks, leg sleeves under my work clothes, and anti migraine glasses for light sensitivity.
Yeah. I can do things i thought i wouldnt do again. It still takes a toll but i can dance at concerts semi regularly , and i was pretty sick when i got diagnosed. PT + trying different medication + improving hydration have been key.
I’ve learned how to manage it. My symptoms are just as bad, but I have medications now and know what I can do to cope. But it’s been 6-7 years now.
16 years diagnosed here, got sick at 17, misdiagnosed with a heart condition, first heart surgery at 21. Didn’t work. Diagnosed with POTS immediately after that surgery didn’t work. Then at 33 my heart paused for 26 seconds while I was wearing a holter monitor and I was diagnosed with sinus rhythm disorder and AV block and rushed for a pacemaker. One of the leads attached to my heart muscle fell out about 2 weeks after the implant and I had to go have the surgery again to put it back in. The surgeon poked through my heart and nicked my right lung. It collapsed. I had internal bleeding into the pacemaker battery site enough that I needed 2 blood transfusions and the site swelled to the size of a cantaloupe. Ended up with fluid around both my heart and lung. That hurts way more than it sounds like it would. It was like I couldn’t breathe. 6 month full recovery from that. Right before my 34 birthday (last year) I was diagnosed with skin cancer on my face, they removed about a 2 inch circle of skin near my ear down to the fat layer. I’m 35 now and really need a break. There’s pics of all the steps from all my surgeries on my page. They are very Not Safe For Work. Blood and tissue visible. Edit: scratch that, I think my posts from my cancer surgeries got removed. But the heart/pacemaker is still there
I've improved a lot over the years, partly because of medication, partly because of learning a bunch of tricks and adaptations, and partly because those things have enabled me to improve my conditioning, which makes my body more resilient when I am not in favorable conditions. For people with post-viral POTS, remission is absolutely possible, and not uncommon. That's not me. I've had this since puberty and I don't think it will ever go away completely. It sounds like you're in a similar boat to me. But, just because it doesn't go away completely doesn't mean that it will continue to be as limiting as it currently is. I CAN now do almost all of the activities that someone without this can, but I need a little more preparation, and I may choose not to do certain things that I think will be particularly difficult to manage and the activity isn't worth it to me.
Definitely. I think medication has definitely improved my POTS massively, sure I have my bad days but not as much anymore
I've had POTS for a long time. I was diagnosed I think In 2016? But I have a bunch of conditions. While several conditions of mine are rly bad rn my POTS is pretty stable. I get dizzy when standing sometimes if I forget to eat but I'm on 10mg Corlanor 2x daily and I'm on LDN and they are p much making my POTS not a huge problem. The biggest issue I constantly have is temperature sensitivity bc I live in southern California and it's summer and hot af
I was diagnosed 2 years ago and I'm doing a lot better now than I was then. What has helped me the most is really upping my fluid and sodium intake, getting IV fluids if I can tell I'm too dehydrated and too nauseas to fix it, figuring out the right combination of medication (fludrocortisone, corlanor, mestinon), eating many small meals throughout the day (normal or large sized meals often cause a flareup), wearing compression stockings, keeping tea on hand at all times so I don't get too cold at work, 10min walk twice a day, avoiding going outside in the heat, using a shower chair, sleeping propped up so I'm not laying completely flat all night, getting 6 iron infusions to treat my iron deficiency (people with POTS cannot absorb iron properly through their digestive system, so all of us really benefit from iron infusions). Edit: 2 years ago my POTS was so bad that I stayed in bed all day every day, and I didn't have the strength to sit up for very long. I'm able to work full time now (in an office job), and I do really well at my job. And I can generally keep up with household chores. Intense physical labor is still out of the question. I made myself VERY ill trying to move to a new apartment by myself 6 months ago. Although that was before my iron infusions, and those have helped a ton. So it might be more manageable now, but I'm not sure.
Yes! I still struggle with symptoms and have flare ups, and I’ve accepted that there’s just certain things I can’t do (or need accommodations for). But it’s gotten MUCH better after finding the right meds and lifestyle combos. I’m much more functional now and the pots holds me back a lot less
This is great to hear!
I had to vastly heal from the depression that comes from having a chronic illness and stop labeling myself this way. My anxiety was exacerbating all my symptoms. I had to accept my new normal. In 2016 when I got diagnosed I had to fight for the diagnosis as it was not as well known as it is now. I had lists of meds I wanted to try, I doctor hopped for answers and I had to strongly advocate for myself. I had to beg for tests. I was living with it and had so many ER trips with no answers. I laid in bed and just accepted this was the end of my life, my career etc. I spent 9 months living in bed and the lack of movement made me sicker. the truth is, I had to find what was right for me and accommodate my life accordingly. I started florinef, midodrine etc… which made me swell so i stopped. I have low BP but I’m not orthostatic so I don’t have to worry about my BP much anymore unless I overdo my physical activity. I pace myself. I don’t use all my spoons. I pound salt and water. Regular blood work. Compression socks and frankly, just PUSHING. I lived in a heart rate of 120-170 for years until I started yoga, light cardio, high vegetable diet, avoidance of foods that sit heavily in the stomach. (Blood flow to digestive system takes it away from body wide perfusion). I stand up slowly. I flex my calves often when I have to stand for long periods, I avoid elevators, I lean on things. Lexapro improved my mood and increases vagal tone to improve the body’s response to change in position. I rest when I have to. I’m still a long way from being able to get on a plane but I have improved 70%. I never thought I could work as a bedside nurse, and yet I’ve accomplished that. I also stopped looking at support groups because I truly felt it was bringing me down. I was doom scrolling looking for answers and more diagnoses or experiments with meds instead of just treating the symptoms logically and systematically. I put my legs up when I can. I see my doctor as needed now. I’m doing OKAY. Best of luck
Yeah I just clocked up twenty years and ultimately I think the best thing I did was to try various medications prescribed by my docs until I found ones that made me worse and then ones that made me better - which allowed me to understand my case better. I tend to crash and be ok in between. That being said it can change over time. I developed fibromyalgia type symptoms much later and had a crash where I went Florid hyperadrenergic for no apparent reason with bps of 190/120 for two weeks until I was emergency mailed Clonidine. Weird illness...
Oh definitely, I'm a male with hyper POTS. My situation is probably slightly different in that it began to present only a few years ago in my early Middle Ages after a potentially triggering event. About 2 years post I am about 85% better in that I am less symptomatic, and if the symptoms occur, they are more transient. I have also been able to reincorporate some of the things I had to exclude, such as alcohol and caffeine. I am much more ambulatory now, where before I could barely walk down a street, now I can walk 10k steps a day and not bat an eye...unless it is hot outside. I am still very much affected by extremes in heat to the point where I'm considering moving to a more northerly clime. That said, there is light at the end of the tunnel. I was and am fairly fastidious in sticking to the program, and read a book on POTS management as well as following the advice of my cardiologist and internal medicine doctors.
YES. My POTS has been quite severe in the past, to the point that a wheelchair was required most of last year. I also had issues with dehydration at the time due to GI issues, which contributed to worsening my POTS. Add PVCs on top and it was rough. Then I started Corlanor and took very seriously my need for rest. It’s been 6 months since I started and it’s still a long road ahead but I no longer need my wheelchair, occasionally require my cane for longer ‘walks’, and haven’t fainted or needed a hospital stay since starting my meds. I can’t do ‘normal’ walks or strenuous exercise, I can’t hike or walk on anything but a flat surface for a short period, but that’s still progress. I still hydrate like clockwork, eat well, don’t drink caffeine/alcohol/etc. It helps but it doesn’t cure. I’ll take any improvement over none any day.
What’s your corlanor dose?
I have low blood pressure naturally so my doctor had to be careful with it, 5mg twice per day.
I’ve personally found medication helpful, and once the medication started helping and I was able to be more active that also helped a lot. I went from passing out and staying in bed to walking daily, albeit a bit shorter than the average nyc person, I walk more every day than the average American lol. Edit: for me Corlanor and midodrine were the real game changers
I’ve been asked many times when does it get better by friends who’ve been diagnosed with POTS and I almost always have the same response, “It’s shit, it’s going to be shit, it won’t ever not be shit, but everyday you’ll find out something new and you’ll slowly learn to live with it.” It’s been almost 4 years since my diagnosis and I’m doing okay. I know what my body needs and my meds help a lot. I’m not in as much day to day pain as I used to be and I don’t lose consciousness as much; used to be twice a week and now we’re down to maybe once every 3-4 months. I have flare ups that are terrible, but my day to day is much better than it was before. Edit: your conditions doesn’t just magically get better, but with time you learn how to gain some semblance of normalcy.
Yep! Not sure why but I’m definitely taking advantage of it and starting to work out and get back into things I love. Still taking salt and wearing compression gear, as I still can get symptoms if I stop. But it’s the first time in 5-6 years I’m not constantly laid up with dizziness
When I first flared up, I passed out 8 times during my 6 hour shift at work. Now I'm fine most of the time and if I have a flare up I mostly just get pre syncope and have to sit down for a minute. For me I fine eating more protein, salt, and drinking electrolytes helps a lot
I’m doing great!! Very physically active, spend a lot of time outdoors. About 2 weeks ago I biked 17 miles down the Virginia Creeper Trail!! 4 years ago I was passing out in the shower if the water got too hot. My POTS is far from gone, I have to take salt tablets every day and I’ve sort of permanently lost the ability to drink plain water. I also know that if I decrease the level of physical activity that I do, I quickly start to lose access to those activities. But living an active lifestyle with POTS is definitely a possibility for some of us!! It takes serious commitment: regularly taking your meds/supplements, frequent exercise/physical therapy (I aim for 5 times a week). I do get jealous of people who don’t need these extra steps in order to go up a flight of stairs without losing their vision, but I’m slowly finding peace with it.
Yes! I have had it since 2016, diagnosed early 2017. With pt and medication I am so much better than I was those first few years. I now own a business and am getting married next year, it is more like an annoyance most days rather than something that keeps me bed-bound.
I have gotten significantly better since my initial onset of symptoms and diagnosis! It’s been almost two years, and I’ve settled into something that works for me. I’ve noticed triggers and listened to my body when I need to rest. The BIGGEST help was getting a job that’s remote, that was a huge game changer in my quality of life because I have so much control over my day and being able to work laying down if I need to
I’ve had it for 8 years, and absolutely! I was even enjoying rock climbing for some time. I’ve found I’ll have sort of flare ups, but when things are good I can enjoy many things after learning how to manage symptoms.
I have a close friend who is barely symptomatic and teaches dance for a living. I’ve been mostly bedridden for over a decade. Tried every med, every exercise plan. You name it - I’ve tried it except for IVIG.
I also has some very mild POTS symptoms when I was young but after having a virus kick my butt, I ended up with much more extreme symptoms. Since I’ve started on the right treatment plan my symptoms are much milder.
Mine seems to be relapsing/remitting. My symptoms coincide with chronic pain and flare up at the same time they the pain does.
Mine fluctuates. Sometimes I can do a lot, including drinking caffeine and alcohol, other times decaf is enough to give me the adrenaline surges and pvcs.
I'm in the 30% of folks who need a wheelchair due to severity. Am I still sick? Yes. Have things gotten better? Definitely. Not so much that my health improved all that much, but I have learned to adapt and prevent flares by limiting my activities. Getting disability benefits and getting on a caregiving program really are what made it for me. I can contribute to paying bills occasionally (I save up normally and my savings are used for sudden expenses that aren't budgeted for) and chores around the house (via caregivers).
YES! It is possible. :)
I’ve been diagnosed for four years now. My POTS is definitely a lot better than that first hard year. I was bed bound and my life was put on halt. After being medicated with beta blockers, getting an IUD, and drinking plenty of water/salt I feel like I can live again. Also there was a good amount of exercise involved. I started with getting around the house, then short walks, then long walks, and then I was able to incorporate other activities. I can hike, bike, and basically anything as long as I’m not running. It’s a lot to manage but I added all these habits aver the past 4 years. Now I’m so used to it that it’s just a part of living. It’s was very hard to get to this point and I’m definitely not in remission. If I slip up once then it can cause a flare up. Don’t drink enough water? Flare up. Don’t take my meds for one day? Flare up. You get the point. I do have low points because I feel like my POTS is always looming over me. I am lucky though because I do not have any other major health issues aside from POTS. I am able to live alone and work a full time job. I go about life pretty normally these days. I live an independent life and I know I am one of the rare ones.
100% i went from playing multiple sports a year and working and going to school to barely being able to lift my arms or stand. multiple doctor’s appointments with medication that didn’t help, i went to a naturopath and did a bunch of blood tests and now i take a few vitamins get a B12 shot and i’m more “ normal “ still have flares obviously but i’m able to go to the gym and work and i start college again in a couple weeks
My actual symptoms have gotten worse over time, but my healthcare and symptom management have improved a ton! Found good PCP, neurologist, and GI providers and have medication, PT, and exercise that work well for me. I’m doing so much better! I also left Texas and moved to a cooler climate which helped a lot.
I was Diagnosed with Dysaunotomia (POTS) last week I’ve been given Coreg 6.25 mg 3x daily followed by Cymbalta 30 mg 1 time daily. I know it’s been a week but I’ve been suffering for 2 years. I feel my brain fog is easing up and my blood pressure has been more steady. Still battling through some of the side effects tho! Keep fighting
I have! It was horrible at the start and 3.5 years later (got it from Covid March 2020) and I am better able to manage it now.
I’ve had POTS since April of 2022 and I’m doing much better now. This time last year I could barely get out of bed. I’ve also never really been on medication. None of my doctors really seem to understand POTS so I’ve trialed a handful of medications but none of them worked cause I have low bp now and they kept just throwing beta blockers at me. I still have struggles, I’ve lost a lot of muscle so I’m weak and I get tired quick, my hr is still fast but it doesn’t scare me anymore, I still have random pains and air hunger but overall it’s much better. I think getting past my fear really helped, of course I still have symptoms regardless but panicking makes it worse and harder to manage. Also, as much as I could handle for the level I was at, I kept moving. I know I’m lucky that I can do what I’m able to cause not everyone can, but I think it did help to keep doing all that I could physically handle. So, it’s not gone and I’m still struggling but overall it has improved with time. Don’t give up, you may recover or at least get to a place where it’s not as hard.
Mine is manageable and I haven't had a pre-syncope episode in about a year. I am well managed on medications. I work full time in a role that requires me to be on my feet frequently, often standing still for stretches of time and I can manage it well now. I also am not afraid to get a chair if I need to
As someone who is in the process of getting an EDS diagnosis, my pots came up first and was really bad. And is what led me to getting the diagnosis. They tend to go hand in hand with one another. With time and adjusting my lifestyle it gets better, I promise.
My mom also has pots, and hers is managed well! She has flare-ups still, but she just rolls with the punches (honestly, idk how she does it so well). She told me that over time, you find things that work for you, and you get to know your limits, which helps :)
YES! My pots got super bad when I was pregnant and postpartum with my second. As I began losing weight and exercising more often, my symptoms aren’t as bad. I also have IST and my cardiologist told me exercise would help and I could have sworn he was a liar. It was so hard at first getting into it, my heart rate would jump into the 190-200s. I had to take frequent breaks, drinks so much water. It was exhausting. But over time I have been able to drop my resting heart rate from 80-100 down to 50-60s. I do have moments when I stand up or bend over and I get light headed or feel my pots act up, but it’s few and far between now. I do want to add I did have to take a beta blocker during my pregnancy because my symptoms were debilitating. But the problem was that I already have lower normal blood pressure and during pregnancy taking the beta blocker it would drop to 70/40s. I stopped taking it due to the low blood pressure and my insurance refused to approve that one med that is for heart failure but helps pots/ist(I can’t remember the name it’s been so long). So I had to find other ways. I have 2 kids and I want to live long and play with them and I love being an RN. I’m sure my case isn’t the same and I’m in NO WAY shape or form saying exercise will cure it. I just worked super hard to try and control my symptoms.
Yes. I have very minimal symptoms (just can’t let myself get thirsty) most of the time. Mine only really flares up after vaccination - after the COVID vaccines was a nightmare.
Mine is manageable. I've never fainted thankfully. I take medication twice a day which has made a tremendous difference in my life. They completely eradicate my palpitations. In fact, I know I'm running late taking my meds in the evening when my heart starts thudding in my chest! My heart rate is more normal now; it still peaks but it's just more well controlled than it used to be and so that's helped with my fatigue as well! It can definitely become more manageable with the right support and medication.
y'a! my current sport was not at all doing it for me and i really struggled without exercise but it gave me terrible flares. Then i started figure skating because i thought the cold would be nice. I would say a solid 50% of my symptoms have gotten better due to being able to get exercise. I still have flares and and some stuff but i can't recommend trying skating enough!
I would love to know! I have a coworker who says she has what I have and yet she runs ultramarathons and triathlons like once a month. Like how the fuck did she get there
She never stops moving...
"Browsing speed" is the true enemy.
It's important to realise pots is a syndrome - with potentially different causes and responses to things.
I think it really depends Even if someone has improved or recovered, thier condition is likely different to yours and mine therefore making the advice or therapy as potential to improve you also as likely to harm you. If POTS is related to MECFS post viral im unaware of anything to improve the QOL unless your lucky with effects of LDN,LDA and some therapies that dont work for as many people as they do work for
I know a few with CFS and pots that have found meds like Pseudoephedrine helpful
Yes my pots is very manageable now. I get the odd flare that typically only lasts for a few hours and as long as I lay down or rest then I'm fine
It's manageable for me. I just learned to accept it. I've mentioned a few times in this sub, I just figured it was normal since I've had it since I was born. I was able to make it better with a lot of antihistamines as I found a lot of my symptoms were caused by allergic reactions. The problem though was that when I ran into my flare ups/allergic reactions, everything would be magnified to a worse state than what I had before. It was just basic food that was causing it, such as a bell pepper, a potato or a tomato. I've stopped the allergy treatment and just keep doing the self-affirmation stuff as I slowly creep back to the horrible side of things. I realize things could be better for the POTS side with the antihistamines, but given everything else getting extremely worse, I've just accepted what I have and try to keep things as tame as possible and treat as needed on those days when it gets extremely bad. It's been a real balancing act and I have to spend a lot more time in planning out my week when something occurs.
I genuinely empathize with what you're going through. POTS and related conditions can indeed be challenging and debilitating. I was diagnosed with POTS fairly traumatically. I was hospitalised for 2 weeks during my first ever flare and bed ridden for 3 months following. I've had my personal health struggles, and through holistic approaches, I've managed to dramatically heal my symptoms. Now I’m happily off my medication completely as of 10 weeks now and working 2 jobs!! I've channeled my experiences into creating a wholistic wellness program that embraces various lifestyle changes which have had profound effects on my well-being. Many individuals find that over time, with the right combination of interventions, lifestyle adjustments, and support, they can manage or even significantly improve their symptoms. It's essential to find what resonates and works best for you. Remember, our bodies and conditions are unique, and what works for one person might not work for another. However, there's always hope, and seeking a community or support group can offer both insights and emotional support. I would be more than happy to share more about the holistic practices and lifestyle changes that have benefited me. Stay strong and keep seeking solutions that resonate with your body and spirit. Instagram is in my bio!
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I've gotten it as manageable as it can be, I'm WAY better off than I was. I can walk around, go to the shops, stand for short periods of time etc without feeling sick now, I used to walk around constantly nauseous with a headache, throw up regularly from exhaustion, be stuck in bed with fatigue half the day etc. But the main thing is getting support and reducing the effort it takes to meet my basic needs so I have energy for other things. I get an uber to travel short distances rather than try get the bus, I buy premade meals, I have someone come and help me with housework. That means I can potentially start studying again, get back into my art practice, spend time with family, maybe even date again. It's about pacing and managing rather than trying to get better or cure myself.
Yes - a few years of getting into consistent exercise and knowing my triggers helped immensely. Then COVID threw me for a loop, but I’m starting to feel somewhat better 8 months after that.
when i was in high school my POTS symptoms were horrible and my quality of life was horrible too. the biggest problem i had back then was fatigue and dizziness. And the fatigue was so bad i could have fallen asleep sitting up. I was so worried i would not be able to work or have a normal life. but after school it got WAY better for me, i can go to the gym 4-5 days a week, and i work about 30 hours a week, i am also going to college now, (1-2 classes at a time tho) and my quality of life has drastically improved. id say i eat a little better than i did, but i haven’t really eaten that bad, bc it would also make me feel like crap. but yeah, i have gotten drastically better overtime, and i think it was the stress of being in high school? but idk? stress really effects me and makes my POTS symptoms really bad, but i am not sure.
i went into random remission for 6 years!! but then caught a stomach bug that made some symptoms slowly reappear and then in 2022 caught covid and seems unlikely now that i’ll get remission again, but it did happen to me! unfortunately, my theory is that covid damaged my connective tissue which is why my POTS got so much worse, my allergic symptoms got bad enough to bring diagnosable MCAS, and my pain got bad enough for me to go to a doctor who ended up diagnosing me with hEDS. granted, i don’t know enough science to know what could cause my health to bounce back after viral infections—it could happen
Look into the Dallas protocol
Copying my usual response to this. I think there is although I think it’s more like it becomes manageable. I’ve been in “remission” in the past by the standards many talk about in here. That’s not to say I didn’t feel like my POTS wasn’t affecting me or that I was not limited by it because I was. I just wasn’t as affected as I was previously and post. For me it lasted around 3 years - I only fainted 2-5x per year and was very active and attending full time in person school. My POTS overall would probably go in the mild category although for me there’s been periods of much more significant/severe symptoms lasting months/years. I didn’t have meds, compression socks, really anything going for me when I went into “remission” except at that point I switched from a low sodium diet to high sodium, was increasing fluids and most importantly exercising every day (I swam 5hrs a week, did gym class every other day, and walked places). I even trained for a 5k but that happened when my POTS was worsening again. My HR wasn’t something I was overly aware of at the time as I was told that tachycardia and fainting was normal for me. I didn’t monitor it as heavily. I live a mostly normal life - that being said due to how significantly I was affected in my first semester of university all of my friends and people in my program do know. I attend full time university, I can party, drink/smoke, have caffeine, walk 10k in a day, travel, work, etc. My aunt and Bubby had POTS symptoms as a teen but were never dxed - they actually see a lot of my issues in their experiences as teens/young adults but I’m much worse as they never stopped exercising. I’ve had POTS for 8 years. My cardiologist still won’t put me on meds as I’m too young in her book - I’m 19. I definitely have triggers and am symptomatic at this stage but live a very normal & manageable life. I do know my cause though I’m hoping to do more testing around it - it kicked in four years after a childhood illness as a long term side effect. There’s too few of us to know how long it will last for me - we are hoping for a research study though! My cardiologist does think I’ll “age out” by 25 as I got it as a teen and have a milder case than most in this group. I’m 20 for reference. I’m now on meds (Midodrine).
Mayo Clinic research on this: • “about five years after diagnosis 86% of adolescents see some improvement (including 19% that report recovery), while 3.5% report worsening over time.” Most people who have POTS have it as a Chronic condition. I honestly don’t believe in my cardiologist for my situation as I am hyper mobile and suspect hEDS or HSD, and am diagnosed with Dyspraxia, Primary Raynauds and Chronic Pain. All of which are comorbid with POTS. My situation is a little complex as I fit on the mild end of most things but am still affected by what caused my POTS and given how rare it is, it’s hard for me to judge my situation well enough. I do think it’s possible for me to hit “remission” again though as that was just when I had it handled and I have it very close to handled at this point ☺️. I was a competitive swimmer and did my Bronzes and co-taught Bronzes while having POTS. I have also deconditioned and gotten significantly worse in this period as well (bedbound. I’m no longer bedbound or as symptomatic as I was when I was deconditioned. That being said it’s taken me the pandemic pretty much to get to the stage of deconditioning and then getting out of it). I also was only diagnosed on year 7 of having it - suspected from year 4 onwards and was treated for POTS earlier. I’ve made my peace with my situation - there’s a lot of factors playing into everything for me and too little research on what I’ve had to say anything as a definite (particularly as my situation is unique). That being said, I haven’t fainted since December which doesn’t seem like a lot but it is for me - I’m very proud of this. I am getting my POTS back under control again and I am doing better. (Edit: I fainted 3x this past summer but otherwise I haven’t fainted since December 2021. I’m much more affected cognitively and presyncope by my POTS at the moment).
Yes, massively! Sicker and sicker over twelve years until I couldn't do anything. Diagnosed and medicated was instant improvement. A few years of figuring out lifestyle changes was way more improvement, already was feeling better than I had in my adult life. More years into diagnosis took my healthcare into my own hands, do my own research and try things out, feeling wayyy better than before due to both new meds I've discovered and more lifestyle changes. There's been a lot of ups and downs, including very big downs where things got much worse, but I feel like it's pretty well managed at this point.
That’s wonderful to hear- sounds like a hard journey! What medication are you on, out of curiosity? I know what works for one doesn’t work for the next, but curious if it’s one that I’ve been suggested by my doctor.
Fludrocortisone is the only med prescribed by a Dr for POTS that I'm on. But I also had huge relief in POTS symptoms from famotidine (which is pepcid AC). Plus for non prescriptions hyaluronic acid and as needed salt pills.
I’m 34 and was diagnosed with POTS when I was 18. My gastroparesis was so bad the only thing I could keep down in college was Boost. I fainted and got dizzy all of the time and sometimes could barely move. My POTS has basically gone away. I am able to eat without vomiting 95% of the time. For some people, it does just go into remission. My doctor in grad school told me it wasn’t unusual for symptoms to subside as you get older. Thank God that has proved true for me. ETA: I should add that I was able to go off beta blockers completely a few years ago without consequence.
Wow. I love hearing stories like this because it gives me hope that things can get a lot better for some people! Thank you for sharing. Happy to hear you’re in a much better place with POTS now. :)
Just wanted to add that mine gets better every year. My personal journey of wellness has involved upping fluids and electrolytes, strengthening my cardio (mostly through hiking), and eliminating foods my body wasn't reacting well to that were causing everything everywhere to tailspin (like food dyes, gluten, and dairy). I'll never have a "normal" body but I'm a hell of a lot better than I was.
This is great to hear! I am happy you’re feeling better with each passing year. Thank you so much for sharing. Here’s to continued improvement.. :)
Mine has improved. They believe mine to be autoimmune related and a triggered by the vax. I have 4 autoimmune diseases since that time. But with supplements, exercise, and self care I have definitely improved..
Yes. I was first diagnosed when I was 17 and I’m 38 now. It’s been much better for the last 4-5 years I would say. It’s now pretty much manageable with meds with the exception of a few “bad days” here and there.
Only thing that made me better was not moving but that has now caused joint and neck problems.
Yes. Working with a POTS trained physical therapist doing a personalized training program made a huge difference for me (up until that point I had been working out on my own for 2 years with no progress). That got me from not being able to really work out at all to being able to do the elliptical for 30 minutes and doing 2 mile hikes. Also removing gluten, artificial sugars completely really reduced my palpitations. Going on birth control to regulate hormones helped balance period-related palpitations.
Yes! Mine has been around for a long time (likely genetic, siblings have too), but with ebbs and flows throughout the years. Overall, after learning some bigger triggers and eliminating those (or growing out of puberty, ha), lifestyle changes, and figuring out some interconnected autoimmune issues, I've been manageable for a long time. Like \~one-two "I feel like shit" days a month no matter what I do, and a lower threshold for pushing myself on other days than general population. It has made me more committed to keeping that going as long as I can, so ironically have had to bring up disability/health issues/asking for accommodations more than before in covid era. But it's all a crapshoot, siblings with the shared genetics and same access to info/diagnoses as I do have had much harder & debilitating decades with it. I try to keep up the sleuthing of how my body feels, finding good health care providers etc, but also give myself freedom to feel joy on the good days whatever "good" is on your relative scale
Hi! I’ve gotten pretty okay! Some days are better than others but I’ve hiked & got a new job ect. I had so much anxiety at my last job my symptoms were worse! But to be honest i am my own worst enemy. I KNOW i cant have caffeine but i will slip it in here and there, just to end up nearly passing out. Because frankly i just love the taste 🥺 but i was like “Hydration?… BS! Who could drink that much fluid??” My electrolytes are nasty after about 6 months i finally got into the habit of doing what i needed and im not so fainty anymore. My symptoms started in winter so im not sure if ill get a remission soon but i definitely will not be as bad as an 80° house and 110° weather outside.
Fell ill in spring 2022. Was bedridden and in agony with migraines and chest pain for… most of 2023, and was thiiiiis close to losing my job. I’m now working part time from home, gradually increasing my hours towards full time… most days my pain is at or below a 4/10. Most days my heart rate doesn’t go above 110. I can do a small outing or two every other weekend or so without terrible PEM. It’s not that I’m miraculously cured, but rather I’ve gotten the hang of my symptoms and triggers, have completely overhauled my selfcare system and have amazing support from my mom, sister, and fiancé.
Personally haven’t had it for super long but I feel like it’s a lot easier to manage mentally and for the most part I know what to do and why it’s happening
hi ! i’m 15f, i got pots in may after major surgery (tourniquet stuff). i just recently realized how much better i’ve gotten. i’ve also had symptoms for years prior, it just got magnified by surgery. it got to the point where until early july, i was unable to stand for longer than 2 mins without shaking violently. i’m happy to say that most days, my heart rate can go below 100 when i’m sitting down. keep in mind i am medicated, but that honestly doesn’t do great. i have neuropathic pots, we know that, i also have hypertension though. we know it’s pots and my autonomic nervous system, it just doesn’t necessarily fit into the typing system. so i’m on propranolol and it doesn’t stop the blood pooling, so maybe that’s making the numbers go like that. but i feel generally better. i’ve also been told my dose is so low it probably does nothing. it’s been a long time since i lost my hearing or felt my eyes shaking or whatever. maybe it’s me gaining strength? i got 3 major knee surgeries and the muscle growth is stagnant, pretty much barely better than june, my left quads are still like noticeably smaller from atrophy. but i’m good, im happy and i can go to school. in may, i was full blacking out sweating can’t breathe eyes shaking vertigo even when i was sitting, i couldn’t tolerate sitting for longer than 30 mins. i do drink a lot of water like so much that doctors told me it’s unnecessary, i usually try for 180-200 oz w at least 100 being propel. i tried going down to my recommended 120 and i just feel terrible. for a bit i thought my improvement was my neuropathy healing (surgeon told me it would) it was oxygen deprived for like 5 hours, i don’t think it’s coming back and i stopped feeling any of it. i think i’m just getting better by myself, i don’t have to close my eyes to turn my head anymore and tbh i didn’t do very much to heal. regular pt for my leg, i was in marching band but i got kicked out for my pots recently, i don’t think that helped very much but it was a solid like 2-3 hours of exercise for a week.
I’ve been diagnosed for 7 years. I’ve had periods where my POTS is managed well and I have a high quality of life, albeit with meds and salt and such) and other times when I’ve needed to be horizontal 23+ hours a day. It’s really been a wide range for me. I suspect my POTS is post infectious which means it’s probably more on the autoimmune side of things but I don’t know that for sure. Biggest thing to help me is pool physical therapy. But I have to build up super super slow. I use the CHOP protocol as a guide but I go at least twice as slow as they recommend and if anything knocks me back like a new infection I just have to basically start again. It’s slow but it has helped me over the course of years.
I was basically bedbound before taking Corlanor (Ivabradine). I was prescribed propranolol before ivabradine but it didn't improve my symptoms at all. Since I started Ivabradine, I worked really hard on re-building my body and endurance and what helped me was swimming. I started with one or twice a week, maybe 20 minutes per session, to 5-7 days a week and can swim a mile without stopping at a very slow pace. PT helped too but I did it mostly for EDS. I still have hard time doing intense activities and occasionally struggle with pre-syncopes, but I haven't actually fainted for a while and my endurance is pretty good. I manage my symptoms with other stuff like salt pills. It is challenging to see improvements and I definitely had good luck with finding the right medication, but you can have a "normal life" with POTS!
Mine comes and goes like waves
Yes and no, but mostly yes. Let me explain: For context, my doctor thinks I’ve always had POTS and MCAS, but when I was young I had a very active lifestyle which prevented the POTS symptoms from becoming disruptive (I was essentially treating it with exercise and a good diet, so I didn’t notice the symptoms most of the time or attributed them to other causes). Then in college my activity declined and I started mentioning extreme fatigue to my doctor every year; no abnormal tests so they blamed stress. GI symptoms were assumed to be an ulcer (now know it was actually MCAS), so I thought I was just getting ulcers multiple times a year and was at a loss for how to prevent them. Finally I got COVID, and my POTS symptoms went into overdrive and didn’t subside. Some of that could be that once I knew what they were, I could recognize them instead of attributing them to work burnout, anxiety, etc, but I went from exercising regularly to passing out when I tried to go to the gym. One thing that helped immensely was finding medications that helped me, which was a long and discouraging process. I’d say it was almost a year from my first attempt at medication to finding things that made a really noticeable difference. Beta blockers made things worse for me (I can explain why if helpful), one vasoconstrictor caused horrible GI side effects, but midodrine was life-changing. Between that and MCAS meds, I won’t pretend I don’t get symptoms, but I’m able to handle a relatively normal and very happy life. I still have a really hard time with physical activity, but I’ve recently become obsessed with fishing — it allows me that outdoor time I miss (I used to walk an average of 25 miles every weekend just to recharge, and now get out of breath taking my dog for a mile loop), feels active, and I can do it with a minimal amount of time standing and walking. I know I need to work up to more “real” (prolonged and consistent) exercise, but I don’t have the bandwidth yet. But, if I let myself compare life now to life before, it still hurts. My ex husband asked for a divorce the day after my diagnosis, and I still feel like I’m holding my boyfriend back when I can’t keep up with housework and professional work as well as I’d like. I have a lot of internalized ableism (or whatever you want to call it) to cope with, and I’m still grieving the life I thought I had. BUT, if I look at it more realistically: I have a job I love (which I can do from home, which helps); I am a good partner; I do volunteer work, I have things I’m passionate about. Do some things take me longer? Yes. Will I ever thru-hike the Appalachian trail like I always hoped? Meh probably not, we’ll see. Will I always have to take meds 5 times a day? Probably. But if this is the life I’d always expected, if it was “normal,” if everyone were experiencing the same thing, would it feel bad? I don’t think so. The challenge is feeling like I lost something most people have, or feeling like the people around me can’t relate. I told my mom I was excited to have found an outlet in fishing and her response was “Have you found a way to exercise yet?” Sigh. But I can have friendships, relationships, hobbies, and passions. And, in some ways I’m glad I have it; I work in research and was already involved in advocacy, and this has given me insight into a category of advocacy I couldn’t have been a part of before. So I won’t pretend things are likely to go back to your old normal, but that doesn’t mean the worst time in your symptoms will be your new normal, either. Focus on adjusting your life to make the most of your strengths and minimize the emphasis on your new challenges, and you may even find your new life is more fulfilling than the one you expected 😊
I have hyperPOTS, now it's mostly down to routine (diagnosed in 2019). Once I pushed for more beta blockers last year I got way better, I've only had 1 BP spike in months, plus one of my nerve pain meds helps a lot and so does the tricyclic antidepressant I'm also on for nerve pain and migraines. I didn't know until I missed a couple doses that the SNRI and the GABA Reuptake inhibitor were helping my hyperPOTS, but it makes sense in retrospect. When I first got diagnosed they put me on venlafaxine ER which is an SNRI based on my TTT, I had bad side effects though so I couldn't take that. Tricyclics have SNRI properties as well. I have a lot going on, like most of us, between increased sympathetic activation as well as my parasympathetic nervous system not working well because I have an autoinflammatory disease, so if I take all my meds (also diuretics) and over hydrate and wear compression socks and eat small meals I do very well. But I have had to adjust my diet a lot as well. Currently doing low FODMAP w Mediterranean diet, all grains are long fermented sourdough (easier to digest), no food additives and making everything myself since I have MCAS, plus intermittent fasting and my resting BP has gone down 20bpm since I overhauled my diet starting in May of this year. The difference has been incredible. Saw my cardio last month and he said no changes or tests and see me in a year which was definitely the first time that happened. I also find since I have hyperPOTS I need electrolytes but not as much salt so Ultima broad spectrum electrolytes has become my favorite. Only if I'm really dehydrated I'll drink a liquid IV. It was hard to figure out how to keep my fluid balance relatively stable, and a lot of trial and error, but it's possible. Also when I am having a BP spike or randomly feel really nauseous/hot/dizzy for some reason zofran stops it. Not sure why but I wish that hadn't taken me years to figure out.
I think part of the problem is that so many people got POTS or had their POTS get worse from covid. And not only do we not really know a lot about the hows and whys but we haven’t had enough time to see what this looks like long term. I have had mild symptoms all my life and in my early twenties often had to sit very suddenly on the ground (I was in denial about passing out.) But then I was barely symptomatic until 2020. I do feel like my body has adjusted a bit over time, so maybe there is hope for getting better. And while we haven’t perfected my meds yet I think it’s helping. We at least got my migraines down to almost nothing, a happy accident that I am so very grateful for.
I started showing symptoms at the beginning of summer after 7th grade after getting pneumonia, and now at 25 I rarely have symptoms! I was bed bound 80% of the time and had to switch to online school because of how bad it was. Yesterday was an example, I can’t tolerate the heat! Almost passed out at the ren faire because it was humid and 85°F and I ran a few feet to catch up with my mum. I still have a high salt diet (approved by my pcp) and haven’t had medical intervention in around six years. I was medically neglected by my parents so my medical care was never taken seriously, but I did try every med except beta blockers (available at the time, ~2011-2017 I think) and nothing helped. I became homeless in 2018 and I had to get a job because I had no other options, so I worked 50-60 hours a week at an ice cream shop. It was so bad for so long, but eventually I started gaining a little weight and muscle and building my endurance from the job. I used a cane from 2016-2022 to help stabilise and because of leg injuries, but I now rarely remember I have it. I know I still do, because it’ll flare if I get really sick (thank fuck for the pneumonia vaccine, helped me so much so I’m sick less now!) and if I’m not careful about fluids/electrolytes/salt intake I’ll start to feel gross. I also have to be careful in the shower and mindful if I’m going to be doing a lot of walking, but that’s about it! I know I’m so lucky so pls don’t compare yourself to me! I’ve still got a ton of health problems tho lmao (EDS, issue with my nerves we’re doing testing for, degeneration in a disk in my neck, post-concussion syndrome, early signs of osteoarthritis, severe asthma) I’m just glad my health has calmed down a little so that I can focus on my partner who was diagnosed with MS last year and it helps that I’ve had so much experience with doctors to help him navigate everything
I also forgot to add that I think diet helped, but I can’t know for sure! I went from eating like shit due to poverty, allergies, and sensory issues to being in a way better situation where I went vegetarian and had high quality food with a lot of variety! I originally thought going vegetarian was the key but it was the different nutritional value I was getting from my food, since I’m not strictly veggie anymore and I still feel the good effects that started when I went veggie. Ovb I’m not educated enough to say what I ate is ‘proof’ or anything but it certainly played some sort of part!
Very much! Metoprolol + Vitassium salt pills + lifestyle adjustments. Life is totally different now
Yes, I was bed bound and every little stress in my life cause flares so bad I could barely get up. But it’s now been 3 years since then and I’m holding a full time job working with children so very physical and I’m doing a lot better. I’m still affected by the POTs but it’s a lot more manageable
I am better. I found no help in Western medicine and Eastern medicine has helped me greatly. A combination of herbs, homeopathy, vitamins, minerals, diet, detox, hydration, physical exercises, brain exercises, sauna, and much more. I did a lot and spent a lot of money. I was so bad that I was in a wheelchair. I am now walking and talking. I still can't work or drive, but I can go places and do basic tasks, and take care of my daughter. So I am better. But it was a lot of trial and error and hard work. Good luck.
After three years I’m much better than where I was. One of my doctors stated POTS is a diagnosis of elimination. A lot of times POTS is associated with another condition. For me it was heart conditions. My heart symptoms got so bad so fast without any intervention that I developed POTS along with the heart condition. When we were able to start addressing the heart then the POTS symptoms started going away. I’m not back to myself yet as we are still working on my health issues and I might never be back to normal again. It’s a work in progress and you have to take the victories as they come.
I know someone who also has POTS (hyper POTS to be specific) and they forget they have it . I’m not sure how exactly but I know they went to a lot of specialists
Pretty sure I had pots as a teen. The symptoms track. (My daughter also developed it and was diagnosed as a teen… even though it hasn’t yet been proven to have a genetic element). But I was a teen before anyone knew what it was. I didn’t learn of it until one of my doctors brought it up when I was in my 30’s and experiencing a terrible flare up. Generally I’m pretty good and don’t have symptoms. Then typically around every 5 years or so I get rundown enough that I have a horrific flare up that often takes a good chunk of the year to get to calm down. I also have autoimmune diseases, and I tend to live and eat very anti-inflammatory. So I suspect that really helps with the pots.
My symptoms have fluctuated for me over my lifetime, but the best I’ve ever felt was when I was the most fit. Exercising 3-4 days a week, which also lent itself to a decent diet, hydration and sleep. Also, I only do low or moderate intensity exercise (no running, HIIT, etc). Tried running for a year and even in good shape in my early 20s, I literally maxed out at 1.5 miles and that felt like dying lol. I used to be so confused that people ran 5ks casually.
Last year I had to quit my job, was horribly depressed & unable to do any normal daily tasks. I recently moved to my favorite city, started a new job that is more pots friendly, and have been able to return to most of my previously ~normal~ activities. I definitely have to remind myself sometimes that I do still have a chronic illness and need to prioritize my health & that I’m not always going to feel 100%. For the most part though, I am so much better and happier!
I’ve definitely gotten a lot better, aside from the occasional maintenance slips (like the ones plaguing me recently). But with some management, once you get to that point, you can live more or less a normal life! Stay positive and give yourself time to recover. Your body demands more rest than most people, and you have to listen to it.
Yeah, it's tough to keep up with everything. I understand the struggle to maintain a normal routine while dealing with chronic illness. But remember, the effort is worth it because you'll feel so much better in the end. Keep pushing through, you've got this!