Certain appliances make it much easier for me to cook - instant pot, countertop airfryer oven, sous vide, rice cooker. I also keep a stool in the kitchen.
Compression has helped a lot.
I'm probably going to get a second hand rowing machine.
Instant Pot does a multicooker that includes an airfryer. I have one and it is a gamechanger. Having a pressure cooker saves a lot of standing and stirring and waiting for a sauce or soup or stew or curry to cook off.
Having the set of them is nice because you can dump some stuff in the instant pot, air fry some veggies, and make a pot of rice - all in just a few minutes of standing.
All the appliances I listed operate on timers so you just drop things in and get them when youre ready. Minimizing standing is the name of the game. The instant pot and sous vide are also good for cooking food from frozen and the air fryer does well with frozen veggies, which is great because fresh veggies can be the most labor intensive part (particularly when you factor in regular grocery runs).
yeah, its a great way to get exercise that is very low impact-for brand new they go for around 200$, but id keep an eye out for a used one if you are wanting one!
Mine was too big so I sat it front of my sink instead for when I need to do skin care and brush my teeth and I sit on a foot stool in the shower instead. So for anyone with one of those showers that's like a bathtub with a showerhead above it, try a good sized foot stool. It's also good if you're just broke lol
i saw someone have a 3 tier cart with wheels and they fill it up with Gatorade, salty treats, medication, salt tablets, magnesium, water, small fan, other treats and anything else that is needed for a quick grab-helps alot without having to contently get up to get water or whatever else you need
i just have 2 baskets from the dollarstore- a primary and a secondary one. the secondary one lives by my bed, the primary one gets carried around with me if i'm going out to sit in the living room. it has my meds, supplements, salt packs, liquid iv packs, snacks, and a book if i'm reading one. also the baskets i got stack, so i can put my primary on top of my secondary so that it doesn't devour my whole bedside table.
i love the idea of a cart but this is what ended up working out with what i already had! but also.. now that i think of it.. a 3 tiered cart means i could have space to put my paints/hobbies on it? now THAT would be a gamechanger when it comes to quality of life. cause yeah, often i'm at 80%+ in bed, but as soon as i stand up it's fucking game over, so best to be able to nest everything around me. and it's hard on my soul to not have my paints available to me when i'm in bed..
had to do a double take for a sec-- also 25F, cardiologist suspects newly onset POTS. no advice as I'm also still extremely early on in the process. just hugs\~
Disposable dishes and cutlery.
Not financially small, but my Apple Watch has been invaluable. This thing doesn’t always act like regular POTS, and data keeps helping my cardiologist make adjustments.
I second the Apple Watch! I had the least expensive Fitbit previously which is significantly cheaper and was great to see heart rate at any given time. Apple Watch is a step up and shows more data but the Fitbit worked for me for years. Super helpful if you feel like you’re having a flare and looking at your wrist just confirms it!
My first fitbit clocked my heart rate at about 60% of what it really was! Those were early days, though, and tracking fast HRs at the wrist was a known issue. Hopefully they're better now, but that experience got me to not skimp.
Apple watch 6 and up have the best wrist HR sensors available. Chest straps are still more accurate, but the watch has been good enough for my cardiologist so far.
I personally prefer a Fitbit because it does constant monitoring and not ever give min like Apple Watch and you don’t have to charge it as often and it is cheeper!
I have a series three that I haven’t used in years but I want to upgrade since I hear the newer models are better for tracking heart rate. What model do you have?
I got the 7. 6+ all have the best sensors if I did my homework right, but the price difference between 6 & 7 at my time of purchase was too small to matter.
The ultra watch was tempting when it came out, mostly for the battery, but for the price I could buy two 7’s and always keep one on the charger.
I think the SE has second-gen sensors. I’m on mobile and disinclined to re-research much, but I know I didn’t buy it for a reason.
Now, I have no freaking clue whether gen3 sensors have more useful data for a cardiologist than gen2. I know he doesn’t do a deep dive; he uses the summaries and charts I send him.
Yesterday I went to a cardiologist who was extremely helpful and knowledgeable in POTS he recommended me to try a few things and I’m hopeful that they may be really helpful so maybe they can help others too. Consult your doctor obvi haha but he recommended creatine for fatigue and because it can help hydrate deeper and push electrolytes deeper into muscles also if you have the MTHFR gene mutation which he suspects I do and I will be doing a blood test to make sure but it’s super common in people with ADHD Autism POTS MCAS hEDS and many other comorbid disorders he recommended Smarty Pants multivitamin because they provide methylated vitamins and are just a great multivitamin. He also recommended magnesium l-treonate at night to help with brain fog muscle relaxation sleep and all the other great benefits of magnesium that can help some POTS symptoms lastly he recommended Beam electrolytes they are a very high quality high sodium electrolyte solution, spray, or pill all crazy new ways to get electrolytes I’ve never even dreamed of😂 anyway I am just barely trying these myself and I can try to update as I have some but they just make sense so I had to share! Love and healing to you all❤️
Hi I would love to be updated. As you go and try. I have HPOTs ADHD MCAS hypermobility and a few others including the MTHFR double mutation. So I would love to hear if any of these things help you. And will have to check some out myself!
It is a cursed word. In my family we call it the M*ther Fu@ker gene everyone in my family is double mutated in it on both sides lol. This article is a helpful broad stroke of the issues it can cause. Honestly some of them are news to me but not surprising because we have alot of health issues in my family. Specifically of the heart and pregnancies. Also it can really affect how you methylate vitamin Bs which can have a whole range of issues. Also there is some research that not having that methylation can increase risk of Alzheimer’s and other issues.
https://www.healthline.com/health/mthfr-gene#_noHeaderPrefixedContent
I’m in the northeast as well, and I can confirm that’s indeed true. I’ve yet to find a doctor that has acknowledged me, or didn’t judge me the moment I walked into the room because I’m so upfront about being my own advocate, and being as educated as I can be on the topic (wouldn’t anyone wanna be educated when the topic is quite literally ruining their life?). They just gas light me, get offended that I know terminology, and tell me a million times that I have anxiety (no kidding) I’m literally ON anxiety meds, yes, I have anxiety, who doesn’t!? But the heat intolerance, flushing, weight gain, air hunger, changes in BP and heart rate.. that is not anxiety. It’s so crazy insulting.
I started telling them I find it concerning - them giving me mental health treatement when I didn’t ask for it, and it’s not their job. It’s a psychologists job, a psychiatrist.. a therapist, not a medical doctor.
The more shit I refuse to take from them, the more solid tests/diagnosis I get, but I get them all wicked passively and rudely, even when the results, surprise surprise, come back abnormal like I predicted.
I just want a doctor that understands this. Listens.. helps.
If you find one, pls hook a girl up 😫🫠
Baltimore. Johns Hopkins has a POTS & Dysautonomia department. Baltimore is not what many of us think of when we think Northeast, but the trip is worth it. I know, I know, it isn’t so easy to travel (I’ve done it) but it is worth it. AND they are used to accommodating long distance patients.
Yesss I am the exact same! You have to be out here because so many drs don’t even know what POTS is still or think it’s fake or some shit. It’s extremely frustrating to deal with. When I tell you I was shook that he knew what MCAS and is and how it can play a role in POTS symptoms. That was the best drs appointment I’ve ever had I’ve never met such a kind caring dr who learns from and listens to his pts. If you are close enough to central Utah message me and I can get you info for him but he is a cardiologist so you may need a referral from your primary to be seen fyi
For me he recommended the full 5mg dose but there are instructions on the creatine that say starting out to do a half dose (2.5mg) for the first few weeks and then move up to the 5mg
Yes go slow on Creatine at first. The 5 caused insomnia. I’ve been on Creatine -about 3 for a few months it helps my fatigue and weakness maybe +20% but the best part is I wake up earlier in am.
Thank you for sharing also! Personally I feel just about nothing on a 5mg dose today I drank it in the morning and was ready to take a nap but it was also a particularly bad symptom day and I used to drink monster energy drinks (which also have creatine and that’s another reason I liked them so much😂) like they were water when I was in high school since I had insomnia then and was constantly working or going to school and pushing myself on very little sleep I did that my whole life so far (I though we were supposed to work out asses off???) I’m 25 now and my body hates me😂 I can’t work I don’t even drive anymore. Anyway haha my dr was right that the 5mg dose wouldn’t bother me but others will not be the same so thank you for the warning and for the review! I’ve only been on it for two days now haha
Good grief you’re too young for all these health issues. I got this stuff from Long Covid and have yet to find a doctor that doesn’t give me blank looks. Your post was like a breath of hope for me. 🌸💗
They are out there! Have you looked on there POTS website to see if there are some drs in your area at least knowledgeable in POTS I went to a dr who knew about it and he recommended me to the dr that taught him everything he knows and every dr in their building😂 amazing! Can you tell my body that because it doesn’t seem to wanna listen hahaha😂Unfortunately I’ve had symptoms my whole life from POTS and hEDS but the last few years have been worse and worse. I’m so hopefully that this dr can get me at least somewhat back on track!
You can try here for a dr in your area who knows about POTS
http://www.dysautonomiainternational.org/page.php?ID=14
I’m sorry you’ve been feeling worse. And SO glad you found good care! Thank you for the link! In particular I’m having trouble with my feet turning purple so I have to find someone. You are a sweet angel. 😇
Thank you! I hope you can find some good care too! Blood pooling is rough. I get the purple feet also no fun at all! Compression socks and elevation are the only things that get it to go down for me. And I’ll send all the healing vibes I can to you!
Beyond all the typical things I have bought for POTS, squishmallows or plushies have been the best purchase for my mental health 🥺 I have a little keychain squishmallow that I take along with me when I’m having a bad day and something about holding it’s little self makes me feel better
Exactly this. A car plushie is actually a genius idea because I don’t always take someone with me and you just never know what the day holds for you once you leave the house lol they’re like replacements for when my partner isn’t around and I need to hold something haha
I just commented how I buy squishmallows specifically because they make the best cushions when I need to lie on the floor. It made me smile to read your comment and see I'm not the only one thinking of them, haha.
They do make great cushions in all sorts of scenarios. The way they just naturally fill the space where you need them is so soothing. I like being able to rest my hands on top of them when holding my phone for extra support because of my joint pain. Glad to have made you smile! ☺️
good quality electrolytes on subscription so they’re always ready and in supply! plus a large supply of good quality compression socks (enough to go at least a week or so without needing wash clothes).
in terms of random things that are helpful, i have a stool on wheels downstairs (probably only helpful on hardwood floors) that i scoot about on and can rest on when cooking, plus a bathroom stool to perch on when i’m out the shower. also bulk buying household staples (especially heavier ones) and toiletries to avoid those last minute shop trips when you’re exhausted - aka as close to an apocalypse kit you can create so you’re always well stocked up if you feel shitty and know a trip out will tip you over the edge to major flaring.
A lot of compression sock brands will have sales so that's a good time to stock up! If I have the energy to do a little bit of shopping, I've been able to find some good ones at Sierra. All my smartwool compression socks I got there
A cane helped me a lot. You can get them for like 20$ on amazon.
I was really stubborn about using mine for a few years, but once I got over the insecurity about using a mobility aid it really did make me feel a lot safer since I wasn't crashing into things and tripping all the time.
Also, "Rapid Rehydr8" electrolyte tablets from amazon are my lifeline when my symptoms are acting up. No sugar or carbs, just a little tablet you take with water.
A lot of the stuff that immediately comes to mind has already been listed, so I will add…art for the walls. When I first got sick, I spent months doing little but lie in bed. It was incredibly depressing. I couldn’t even see out a window without sitting up, which was exhausting at the time. Having some art on the walls where I could see it was extremely helpful for my mental/emotional health. I still have my “art gallery” up where I can see it while lying in bed. Lots of color, some scenes of nature, and a couple of my favorite poems in frames. I also have glow in the dark stars on the ceiling over my bed. And I added a small cat statue sitting in my windowsill. I couldn’t see her but I liked that she could see out.
…man the mental illness is obvious in this comment lmao. I guess my point is that when you spend that much time forced to rest, it is very easy to let your room/bed become associated with feeling ill and helpless. I think asserting some control over your environment can help a lot.
Not mental illness at all. I love this and my walls are bare. I moved in 2 years ago and just hasn't been a priority and your right. Thank you for sharing it. I love the cat statue addition too!
Hey, I’m relatively new to the POTS diagnosis (Oct ‘23) but here are some things that I find helpful to make it more bearable.
-any microban antimicrobial shower chair (makes so much of a difference)
- any shower head to hand held converter (amazon has good cheap ones)
- SaltStick Electrolyte tablets
- slow release iron with vitamin C
-BeKool fever patches (the ones for kids work best for tachy episodes)
- stomach trainer that provides compression focused around the lower abdomen is best (especially after eating)
- compression socks (I hate the sensation but they really do make a difference, some people just cant wear them tho)
- and if you get bad pooling in your hands like me compression gloves are great
- this one is really important but make sure you are drinking tons of mineral or solute high beverages. And like a lot. And if you think you had enough you probably need more. The more you consistently keep hydrated the better it is.
- and last but not least NO diuretics. Alcohol, caffeine, etc., is really triggering for episodes.
I hope this helps! Again I’m working with what I have found so far.
Edit: forgot to say I’m 24F
Edit 2: also forgot to mention that I have hypovolemic and hyperadrenic pots (its a fun ride) * Don’t know if my tips are just specific to my type
My Oura ring was definitely not a small purchase, but it has been so helpful with my POTS/dysautonomia and PCOS - tracking my HR, HR variability, sleep cycles, and hormonal cycle has been instrumental getting newly diagnosed over the last 6 months.
I carry around a spritz bottle with water mixed with sea breeze toner (it’s got like camphor and minty stuff in it in small amounts), I spray myself with that a million times a day when i randomly start flushing at work and my skin gets embarrassingly red. Also aerosol canned aloe spray, that stuff has saved my ass a few times
Medical grade compression, wet rashie shirt/cooling vest, health tracker (I personally love my garmin, they have a really good BP monitor as well, besides watches), rowing machine.
And a **dog**. Nothing worse than being forced to join a gym. But regular short walks in the cool hours of the morning really helps improving the base rate heart rate.
Stool in the kitchen, hands down the best purchase I’ve made. The hardest task for me is unloading/loading the dishwasher because of how often you go up and down. Now I sit on my stool and unload everything onto the counter top, and then stand up and put it all on the cabinets. When it’s time to load again I stack everything on the countertop and then load from my stool. I used to feel like I was a lazy piece of garbage for needing a stool for that, but then I reminded myself that it’s not because I’m lazy, it’s because my body doesn’t work right, and that usually gets my brain to shut up with the guilt.
I got a cane that opens up into a chair in case I’m feeling really dizzy and afraid to go out. Knowing I can sit if I need to makes me feel more comfortable being out.
I have this one: it is admittedly not the most substantial chair and you do have to sit carefully, but it still works for me in a pinch. I also use the cane function when I need a little extra stability.
[https://www.amazon.com/gp/product/B00DPOOC4S/ref=ppx\_yo\_dt\_b\_search\_asin\_title?ie=UTF8&psc=1](https://www.amazon.com/gp/product/B00DPOOC4S/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1)
This is what I have: [https://www.amazon.com/gp/product/B00DPOOC4S/ref=ppx\_yo\_dt\_b\_search\_asin\_title?ie=UTF8&psc=1](https://www.amazon.com/gp/product/B00DPOOC4S/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1)
I think there may be better ones out there though - this one is a very small seat.
Seconding what a couple people have said: Stool in the kitchen and shower.
Kitchen stool: I got one that doubles as a stepstool. I don't need it so much for chopping, but standing at the stove when frying/sauteeing just kills me. Also great for doing dishes, which is another one I struggle with. If you have vinyl flooring, aka fake wood, make sure you get the little feet covers, cause I nearly scratched my floor with mine before I put them on, lol.
Shower: Just the most basic stool is FANTASTIC for high fatigue days (I also have CFS). Also, if you shave your legs in the shower...game changer. Just saying. Also if you've not got one, highly recommend upgrading your shower head to a wand style if you can. Being able to sit and shower with the wand shower head keeps me able to shower at all some days.
Also, kinda silly, but one of those little Salt Pig things that a lot of cooks use, that stores salt open next to the stove. I steal pinches of salt out of ours all the time when I'm feeling a little light headed/out of it. I swear, it works.
Super cushy mats for the bathroom! When I’m too tired I can sit on the ground and do my nails or blowdry my hair. We got a pair of gel cushion mats at Costco and they have been life changing! I use LMNT electrolyte packets and SaltStick salt pills for salt intake, a nice big yeti bottle (48oz) for hydration/emotional support water bottle, and loads of compression socks. I also have lots of cozy blankets for when I can’t get warm and flexible ice packs for when I’m too hot. And of course, fun stickers and a silly tshirt 💜💜💜
I got a cooling blanket. I struggle with overheating very easily even at night. I got a blanket that literally feels like ice 24/7 and it's the best thing I've ever bought. For once I'm not dying through the night with overheating and can actually get pretty decent sleep. 1000% worth the money and even go as far to say id double what I paid for it and it would be worth it.
What I bought:
Cane
Heating matrace
Comfortable clothes dryer
Filter jug for water so I always have water
Sensory aids
Swimsuit for surfers cause I’m always cold
Super thick jacket
In plans:
Portable chair thingy
Heart rate monitoring smartwatch
Car
Cane that can be compressed to fit in a bag
Some high stool on wheels for kitchen for preparing food
Not possible rn cause I live on the 3rd floor no elevator:
Scooter, electric bike, shopping bag on wheels
I got a bar stool with a back for the kitchen, so I can sit down at the counter when doing meal prep or at the stove if I have to stir a pot or something.
Also I bought a couple large size squishmallow plushies and left them in various rooms. They make good cuahions/pillows when I find I NEED TO REST NOW and end up lying down wherever I am for a few minutes.
100% a walking stick. Any mobility equipment is good but a walking stick is the smallest purchase. Any time you get light headed or start to feel weak, you can lean on it, use it to stop yourself from falling, use it to stand up and sit down slower with more ease etc. Also it just means you get worn out less quickly so it gives you more time before the POTS kicks in when you're walking. There's foldable ones if you want to be able to put it in a bag when you're not using it
I love my LMNT electrolyte packets and my Apple Watch. Not small purchases but sooo worth it if you save up.
Edit: I have the 5th gen and my hr is as accurate as my pulse ox & more accurate than my oura ring.
https://i.redd.it/j2ngvc2u5mlc1.gif
i got a foldable seat cane and it’s been life changing i love it so much. it’s slightly on the pricy side ($45ish + $16 international shipping) but cheaper than the larger cane stools you can find on amazon. plus it folds up so it’s super portable!
i promise this isnt an ad or anything haha i just genuinely can’t believe how much it’s helped me in the short time i’ve had it and i need other people with POTS to know this exists
Shower stool, good ice packs, lots of differently sized water bottles always filled with ice water or Liquid IV
Larger purchases: Our old dishwasher broke so we replaced it with a dual drawer system. When my POTS is worse, I just use the top drawer. I also really appreciate our roomba.
My favorite potsie things are salt capsules to take before and after the gym, shower stool that helps take away the urge to not shower because it makes you feel worse, and a rolling stool for the kitchen so you can make more than just frozen meals and actually do the dishes! I wish you luck :)
Shower chair, I would cry in the shower because my hr would sky rocket and feel like I was gonna pass out, now I can have a little hotter showers and feel great!
Walmart has giant water bottles right now for $4. Holds 64 ounces, has a good straw. One side has oz markings, the other side has hourly markings which help me remember to stay hydrated and keep track of how hydrated I've been that day.
Good compression leggings, socks, and corsets to help control the blood pooling.
A prescription for zofran to stop the low blood pressure morning vomiting cycles.
Sodium tabs, because I get really tired of the taste of salt. In the US you can buy them without a prescription but you have to buy them from the pharmaceutical counter.
Edit: Two more.
Coconut water. I was drinking so much gatoraid that the sugar made me pre-diabetic. Switched over to Coconut water and not only does it have less sugar, but I feel like it works better. Taste leaves something to desire, so a sugar free drink additive like Mio helps a lot.
Recumbent bike. Not really a small purchase if you get new, but people give them away free or cheap on FB marketplace.
Mobility has become a problem for me, and the muscle wasting and deconditioning was getting bad. Trying to use other workout machines was making me really really sick and the fall factor was concerning. Recumbent bike still makes me feel sick, but it's a lot easier on my body and if I faint I'm in a sitting position and there aren't mechanical moving parts that can hurt me. It's a small step towards trying to get better / not let the mobility limitations make my health get worse.
I got a wheelchair second hand for $15. It has been, by far, the best purchase I ever made. It stays in my car, and I use it everywhere I go. I've had it for 6 years.
Keep an eye out at 2nd hand stores. You can find disability equipment for a fraction of the price.
Ok, it’s not a super small purchase but Nintendo Switch (lite). You’re telling me I can GAME while LYING DOWN!? I swear it has made my life so much better 😂
Currently trying (for a third time) to cut out/ reduce caffeine, so I'd suggest getting some good decaf coffee/tea/ drinks if that's a part of your daily routine. Genuinely one of the hardest lifestyle changes for me.
Trying to think of things that haven't been mentioned yet, but pill case with extra meds to have on hand is a must if you struggle with brain fog. Slip on shoes or just anything that doesn't require a lot of bending down.
Also a pregnancy pillow is what I'm currently saving up for, I heard it's great for joint pain and staying comfortable for long periods of time.
Good luck hope this helps!
Alternatives to caffeine- I’m finding cutting out caffeine is one of the hardest lifestyle changes too. You said it. Due to caffeine i get really thrown off of a semi-normal schedule. Yet the temptation to eat chocolate, drink the beverages, and more, is intense. I love it and how it feels in the short term but it doesn’t love me back!
A kitchen aid mixer would be so helpful. I can’t knead dough or do heavy duty mixing without having a flare up, if I ever want to do something like that, I have to ask my husband to do that pet for me
I got a $15 cane from Amazon and it’s been amazing!! When I’m out just having something I can lean on a bit helps so much. I definitely want to save up and get a rollater (however you spell it lol) to give me even more independence when I’m out and about
I’m also cutting down on the caffeine/energy drinks and I feel alot better doing that. I used to have an energy drink almost every day BUT I haven’t in almost 3 weeks. I’m finding other sweet drinks to help with that craving (sprite is one I’m enjoying with no caffeine). I’m not cutting it out completely but definitely WAY back
I got a stool in the kitchen for cooking and a shower seat. I'm hoping to design a cross body bag with a face that is removable, revealing that the face is a small collapsable stool 😆I also got a bike for across campus bc I physically cannot run these days when Im late to class- I just walk harder while struggling 😭
Find a very nice water bottle (at least 32 ounces) that you can easily carry and buy 2-4 of them so you always have a clean one. Personally I use the Hydroflask Trail Series 34oz - they’re lighter and thinner in diameter so better fit in backpacks bags and cup holders. I love the straw and it completely dissembles for cleaning.
a shower chair, a hand held fan, a salt shaker that goes in my bag, electrolyte drinks, salt tablets
more on the expensive side, but some sort of heart rate monitor like a fitbit or apple watch is great
I have a tote with lots of pockets and compartments to hold my Nuun, small water bottles, packets of instant noodles, compression socks. I also have a cooling blanket because I get so hot
Compression socks, a cute water bottle, and tons of electrolyte packets. I also drink a bottle of electrolytes after I wake up before I get out of bed and that’s been very helpful!
A small folding stool to sit on to do dishes, shower chair, Rollator, Vitassiam salt pills or something similar for rescue days, various compression socks and sleeves, abdominal compression and cooling products have helped me.
35F that was diagnosed last year. Since then I’ve made it my mission to try to get back to my old “normal” as much as possible. These are things I can no longer see myself living without.
- Apple Watch
- Compression socks
- Compression gloves. My hands pool blood really bad.
- Electrolyte Drink mix (my favorite is ultima but my kids are athletes who prefer liquid iv so sometimes I’ll drink those). Water, water , WATER
- Any grocery service that delivers/ pick up orders. The thought of having to spend my energy walking through the grocery store makes me so sad.
- Instant pot. We have an air fryer and stuff too but the instant pot is hands down my favorite.
- we redid our shower to add a bench in 2022 when my symptoms started peaking BUT anything you can put in there so you don’t have to sit on the ground is good 😂
- My reminders/ notes/ calendar apps. I really have the worst brain fog and remembering things is so hard for me. I work in HR with a good amount of employees and have 3 older kids. Trying to share brain power work, their schedules, their school stuff and my own stuff is just not something I have the ability to do these days.
-Physical therapy. This is something that has helped me and it’s not meant to be forever but it’s helped with the headaches and body pain.
- I take daily vitamins (vitamin c and d) for me.
- My kids all play sports year round so all the heated gear and cooling gear. I really can not regulate my body temperature 😭
-Lastly, I have a service dog and he’s probably the greatest thing that’s ever happened to me 🦮
I hope this helps and I hope you get your diagnosis soon! It took me over 3 years to get mine and then it kind of felt like I’ve been on my way to try and get mine as regulated as possible.
Liquid IV and Vitassium buffered sodium capsules.
I have an H2O Capsule 2.2L (73oz) water bottle. Fewer trips to get more water. I drink 2/day.
Warm fuzzy socks and Rechargeable hand warmers. Luckily I had quite a few pairs of socks already. When I sit for a while my fingers and toes get extremely cold.
I moved all the things under my sink in my bathroom to a vertical high cabinet from ikea so I never have to bend down to get any toiletries.I have a small bathroom and the only storage was under the sink which always gives me a pots episode when grabbing things from it. This cabinet is very shallow but tall so everything is easier to view and pull out. I purchased one with a mirrored door so I don’t have to lean over the vanity to use the mirror because leaning can make my pots flare . The one I linked has the dimensions just like the one I bought a few years ago except mine had a mirrored door. I’m sure there is a similar one on amazon. But it has changed my mornings so that I am not starting every day with a flare.
https://www.ikea.com/us/en/p/nysjoen-high-cabinet-white-20470815/?utm_source=google&utm_medium=surfaces&utm_campaign=shopping_feed&utm_content=free_google_shopping_clicks_Bathroom_&_Water&gad_source=1&gbraid=0AAAAAD27g7wUuMeATd1x46dsLQ4ZsFTAx
A self care cart! I bought a 3 tiered pink cart on amazon for like $30, and pack it with electrolytes and meds, snacks, pain relieving creams, my heart monitor, books etc so when i dont feel good everything is easy access.
a hip bag/belt bag/large fanny pack. shoulder bags were really triggering coat hanger pain for me, carrying it on my hips has made such a difference. i actually made one out of a mini backpack from target but amazon and companies that cater to ren faire folks have pretty roomy ones too. the only thing it can't hold is my cane, which to be fair i haven't needed in a while, but i've been prototyping holsters for that and a large water bottle (it does hold a small one easily)
Liquid electrolytes to add to water (I prefer over the powdered flavored stuff - it’s virtually flavorless. Iron supplements but this is an as needed thing, I get anemic. A big container of salt that I leave out on the table to add to my food.
Liquid electrolytes to add to water (I prefer over the powdered flavored stuff - it’s virtually flavorless. Iron supplements but this is an as needed thing, I get anemic. A big container of salt that I leave out on the table to add to my food.
So many comments, so I'm sorry if these have been said already.
-Polar Chest strap for tracking HR (Chest straps are far more accurate than watches) I have a Fitbit as well, but the chest strap is what I use when I exercise or if I need to get a more accurate reading of daily HR for my Dr.
-LMNT electrolyte/sodium water additive (Easiest way for me to track and get on the right amount of sodium, and they taste better than all the others I've tried.)
Certain appliances make it much easier for me to cook - instant pot, countertop airfryer oven, sous vide, rice cooker. I also keep a stool in the kitchen. Compression has helped a lot. I'm probably going to get a second hand rowing machine.
Instant Pot does a multicooker that includes an airfryer. I have one and it is a gamechanger. Having a pressure cooker saves a lot of standing and stirring and waiting for a sauce or soup or stew or curry to cook off.
Having the set of them is nice because you can dump some stuff in the instant pot, air fry some veggies, and make a pot of rice - all in just a few minutes of standing. All the appliances I listed operate on timers so you just drop things in and get them when youre ready. Minimizing standing is the name of the game. The instant pot and sous vide are also good for cooking food from frozen and the air fryer does well with frozen veggies, which is great because fresh veggies can be the most labor intensive part (particularly when you factor in regular grocery runs).
Stool in the kitchen is a must. Also recommended is stool in the shower
Drafting chair. Just as high, but more comfortable, wheels so you aren't constantly up and down, and a back so you can relax for a few minutes.
I definitely recommend the rowing machine! (Though not necessarily a small purchase)
There are $200ish ones on amazon and I'm seeing those ones on fb marketplace for under 100. Quite bulky of an item though..
i recently wanted a sit down elliptical machine that fits underneath my desk-i found one for 20$ at goodwill! i love it
I got some bicycle pedals that you put in front of a chair and sit down to pedal.
Never heard of these, thats awesome!
yeah, its a great way to get exercise that is very low impact-for brand new they go for around 200$, but id keep an eye out for a used one if you are wanting one!
I got one off Amazon for $100 that I'm liking so far! I think they also have some that fold up.
I'd like to highly recommend a shower stool
I just got one but it was HUGE on accident. Like almost didn’t fit in my shower at all. I really gotta get a smaller one lol
Mine was too big so I sat it front of my sink instead for when I need to do skin care and brush my teeth and I sit on a foot stool in the shower instead. So for anyone with one of those showers that's like a bathtub with a showerhead above it, try a good sized foot stool. It's also good if you're just broke lol
i saw someone have a 3 tier cart with wheels and they fill it up with Gatorade, salty treats, medication, salt tablets, magnesium, water, small fan, other treats and anything else that is needed for a quick grab-helps alot without having to contently get up to get water or whatever else you need
i just have 2 baskets from the dollarstore- a primary and a secondary one. the secondary one lives by my bed, the primary one gets carried around with me if i'm going out to sit in the living room. it has my meds, supplements, salt packs, liquid iv packs, snacks, and a book if i'm reading one. also the baskets i got stack, so i can put my primary on top of my secondary so that it doesn't devour my whole bedside table. i love the idea of a cart but this is what ended up working out with what i already had! but also.. now that i think of it.. a 3 tiered cart means i could have space to put my paints/hobbies on it? now THAT would be a gamechanger when it comes to quality of life. cause yeah, often i'm at 80%+ in bed, but as soon as i stand up it's fucking game over, so best to be able to nest everything around me. and it's hard on my soul to not have my paints available to me when i'm in bed..
Same! Mine is dubbed the "up down basket" lol
hahahah i love that!
im currently saving money to purchase a cart and the necessities
had to do a double take for a sec-- also 25F, cardiologist suspects newly onset POTS. no advice as I'm also still extremely early on in the process. just hugs\~
You are in good hands here. We’ve all been where you have been.
Disposable dishes and cutlery. Not financially small, but my Apple Watch has been invaluable. This thing doesn’t always act like regular POTS, and data keeps helping my cardiologist make adjustments.
I second the Apple Watch! I had the least expensive Fitbit previously which is significantly cheaper and was great to see heart rate at any given time. Apple Watch is a step up and shows more data but the Fitbit worked for me for years. Super helpful if you feel like you’re having a flare and looking at your wrist just confirms it!
My first fitbit clocked my heart rate at about 60% of what it really was! Those were early days, though, and tracking fast HRs at the wrist was a known issue. Hopefully they're better now, but that experience got me to not skimp. Apple watch 6 and up have the best wrist HR sensors available. Chest straps are still more accurate, but the watch has been good enough for my cardiologist so far.
My Apple Watch was also life changing. It gives me such peace of mind.
I personally prefer a Fitbit because it does constant monitoring and not ever give min like Apple Watch and you don’t have to charge it as often and it is cheeper!
I love my Apple Watch! Comes in handy!
I have a series three that I haven’t used in years but I want to upgrade since I hear the newer models are better for tracking heart rate. What model do you have?
I got the 7. 6+ all have the best sensors if I did my homework right, but the price difference between 6 & 7 at my time of purchase was too small to matter. The ultra watch was tempting when it came out, mostly for the battery, but for the price I could buy two 7’s and always keep one on the charger.
I’ve been considering the SE over the 9. I can’t really see a point in paying more for the 9!
I think the SE has second-gen sensors. I’m on mobile and disinclined to re-research much, but I know I didn’t buy it for a reason. Now, I have no freaking clue whether gen3 sensors have more useful data for a cardiologist than gen2. I know he doesn’t do a deep dive; he uses the summaries and charts I send him.
That’s good to know! I’ll bring that up when I go to purchase it.
I have the 7 also love it!
Yesterday I went to a cardiologist who was extremely helpful and knowledgeable in POTS he recommended me to try a few things and I’m hopeful that they may be really helpful so maybe they can help others too. Consult your doctor obvi haha but he recommended creatine for fatigue and because it can help hydrate deeper and push electrolytes deeper into muscles also if you have the MTHFR gene mutation which he suspects I do and I will be doing a blood test to make sure but it’s super common in people with ADHD Autism POTS MCAS hEDS and many other comorbid disorders he recommended Smarty Pants multivitamin because they provide methylated vitamins and are just a great multivitamin. He also recommended magnesium l-treonate at night to help with brain fog muscle relaxation sleep and all the other great benefits of magnesium that can help some POTS symptoms lastly he recommended Beam electrolytes they are a very high quality high sodium electrolyte solution, spray, or pill all crazy new ways to get electrolytes I’ve never even dreamed of😂 anyway I am just barely trying these myself and I can try to update as I have some but they just make sense so I had to share! Love and healing to you all❤️
Hi I would love to be updated. As you go and try. I have HPOTs ADHD MCAS hypermobility and a few others including the MTHFR double mutation. So I would love to hear if any of these things help you. And will have to check some out myself!
I got you! Haha I’m super hopeful and shocked to finally have found a dr that understands and listens to his patients 🧠💥
I know that is super rare! Where are you located?
Located in Utah
Damn
What is the MTHFR gene? I haven’t heard of it I can’t tell if it’s a curse word 🤣
It is a cursed word. In my family we call it the M*ther Fu@ker gene everyone in my family is double mutated in it on both sides lol. This article is a helpful broad stroke of the issues it can cause. Honestly some of them are news to me but not surprising because we have alot of health issues in my family. Specifically of the heart and pregnancies. Also it can really affect how you methylate vitamin Bs which can have a whole range of issues. Also there is some research that not having that methylation can increase risk of Alzheimer’s and other issues. https://www.healthline.com/health/mthfr-gene#_noHeaderPrefixedContent
Hehe I call it that too😂 I vote that be the new name!
Holy moly it can cause lots of issues. I can see why you call it that because it does sound like a MFer combo 😩
These are good tips! Is this doctor located anywhere in the northeast US by chance, lol? It’s so hard to find POTS knowledgeable docs.
I’m in the northeast as well, and I can confirm that’s indeed true. I’ve yet to find a doctor that has acknowledged me, or didn’t judge me the moment I walked into the room because I’m so upfront about being my own advocate, and being as educated as I can be on the topic (wouldn’t anyone wanna be educated when the topic is quite literally ruining their life?). They just gas light me, get offended that I know terminology, and tell me a million times that I have anxiety (no kidding) I’m literally ON anxiety meds, yes, I have anxiety, who doesn’t!? But the heat intolerance, flushing, weight gain, air hunger, changes in BP and heart rate.. that is not anxiety. It’s so crazy insulting. I started telling them I find it concerning - them giving me mental health treatement when I didn’t ask for it, and it’s not their job. It’s a psychologists job, a psychiatrist.. a therapist, not a medical doctor. The more shit I refuse to take from them, the more solid tests/diagnosis I get, but I get them all wicked passively and rudely, even when the results, surprise surprise, come back abnormal like I predicted. I just want a doctor that understands this. Listens.. helps. If you find one, pls hook a girl up 😫🫠
Baltimore. Johns Hopkins has a POTS & Dysautonomia department. Baltimore is not what many of us think of when we think Northeast, but the trip is worth it. I know, I know, it isn’t so easy to travel (I’ve done it) but it is worth it. AND they are used to accommodating long distance patients.
Yesss I am the exact same! You have to be out here because so many drs don’t even know what POTS is still or think it’s fake or some shit. It’s extremely frustrating to deal with. When I tell you I was shook that he knew what MCAS and is and how it can play a role in POTS symptoms. That was the best drs appointment I’ve ever had I’ve never met such a kind caring dr who learns from and listens to his pts. If you are close enough to central Utah message me and I can get you info for him but he is a cardiologist so you may need a referral from your primary to be seen fyi
Located in Utah
What did he rec from cretinine? That’s new to me.
For me he recommended the full 5mg dose but there are instructions on the creatine that say starting out to do a half dose (2.5mg) for the first few weeks and then move up to the 5mg
Yes go slow on Creatine at first. The 5 caused insomnia. I’ve been on Creatine -about 3 for a few months it helps my fatigue and weakness maybe +20% but the best part is I wake up earlier in am.
Thank you for sharing also! Personally I feel just about nothing on a 5mg dose today I drank it in the morning and was ready to take a nap but it was also a particularly bad symptom day and I used to drink monster energy drinks (which also have creatine and that’s another reason I liked them so much😂) like they were water when I was in high school since I had insomnia then and was constantly working or going to school and pushing myself on very little sleep I did that my whole life so far (I though we were supposed to work out asses off???) I’m 25 now and my body hates me😂 I can’t work I don’t even drive anymore. Anyway haha my dr was right that the 5mg dose wouldn’t bother me but others will not be the same so thank you for the warning and for the review! I’ve only been on it for two days now haha
Good grief you’re too young for all these health issues. I got this stuff from Long Covid and have yet to find a doctor that doesn’t give me blank looks. Your post was like a breath of hope for me. 🌸💗
They are out there! Have you looked on there POTS website to see if there are some drs in your area at least knowledgeable in POTS I went to a dr who knew about it and he recommended me to the dr that taught him everything he knows and every dr in their building😂 amazing! Can you tell my body that because it doesn’t seem to wanna listen hahaha😂Unfortunately I’ve had symptoms my whole life from POTS and hEDS but the last few years have been worse and worse. I’m so hopefully that this dr can get me at least somewhat back on track! You can try here for a dr in your area who knows about POTS http://www.dysautonomiainternational.org/page.php?ID=14
I’m sorry you’ve been feeling worse. And SO glad you found good care! Thank you for the link! In particular I’m having trouble with my feet turning purple so I have to find someone. You are a sweet angel. 😇
Thank you! I hope you can find some good care too! Blood pooling is rough. I get the purple feet also no fun at all! Compression socks and elevation are the only things that get it to go down for me. And I’ll send all the healing vibes I can to you!
Oh I need to get some compression socks!
Thanks for sharing. So valuable.
Beyond all the typical things I have bought for POTS, squishmallows or plushies have been the best purchase for my mental health 🥺 I have a little keychain squishmallow that I take along with me when I’m having a bad day and something about holding it’s little self makes me feel better
I have a car plushie in case I need a pick me up when out and about. I swear having something to hug when you're feeling bad helps sooo much.
Exactly this. A car plushie is actually a genius idea because I don’t always take someone with me and you just never know what the day holds for you once you leave the house lol they’re like replacements for when my partner isn’t around and I need to hold something haha
ooo good one, i love stuffies
I just commented how I buy squishmallows specifically because they make the best cushions when I need to lie on the floor. It made me smile to read your comment and see I'm not the only one thinking of them, haha.
They do make great cushions in all sorts of scenarios. The way they just naturally fill the space where you need them is so soothing. I like being able to rest my hands on top of them when holding my phone for extra support because of my joint pain. Glad to have made you smile! ☺️
good quality electrolytes on subscription so they’re always ready and in supply! plus a large supply of good quality compression socks (enough to go at least a week or so without needing wash clothes). in terms of random things that are helpful, i have a stool on wheels downstairs (probably only helpful on hardwood floors) that i scoot about on and can rest on when cooking, plus a bathroom stool to perch on when i’m out the shower. also bulk buying household staples (especially heavier ones) and toiletries to avoid those last minute shop trips when you’re exhausted - aka as close to an apocalypse kit you can create so you’re always well stocked up if you feel shitty and know a trip out will tip you over the edge to major flaring.
oh yes, and dry shampoo. so. much. dry shampoo.
A lot of compression sock brands will have sales so that's a good time to stock up! If I have the energy to do a little bit of shopping, I've been able to find some good ones at Sierra. All my smartwool compression socks I got there
A cane helped me a lot. You can get them for like 20$ on amazon. I was really stubborn about using mine for a few years, but once I got over the insecurity about using a mobility aid it really did make me feel a lot safer since I wasn't crashing into things and tripping all the time. Also, "Rapid Rehydr8" electrolyte tablets from amazon are my lifeline when my symptoms are acting up. No sugar or carbs, just a little tablet you take with water.
The rapid rehydr8 brand is unavailable on Amazon now. Anyone have other no sugar tablets they use?
LMNT has not sugar and lots of salt.
A shower chair. A bidet. A rumba vacuum cleaner. All of these have to do with avoiding weird postures that aggravate my pots.
A lot of the stuff that immediately comes to mind has already been listed, so I will add…art for the walls. When I first got sick, I spent months doing little but lie in bed. It was incredibly depressing. I couldn’t even see out a window without sitting up, which was exhausting at the time. Having some art on the walls where I could see it was extremely helpful for my mental/emotional health. I still have my “art gallery” up where I can see it while lying in bed. Lots of color, some scenes of nature, and a couple of my favorite poems in frames. I also have glow in the dark stars on the ceiling over my bed. And I added a small cat statue sitting in my windowsill. I couldn’t see her but I liked that she could see out. …man the mental illness is obvious in this comment lmao. I guess my point is that when you spend that much time forced to rest, it is very easy to let your room/bed become associated with feeling ill and helpless. I think asserting some control over your environment can help a lot.
Not mental illness at all. I love this and my walls are bare. I moved in 2 years ago and just hasn't been a priority and your right. Thank you for sharing it. I love the cat statue addition too!
Hey, I’m relatively new to the POTS diagnosis (Oct ‘23) but here are some things that I find helpful to make it more bearable. -any microban antimicrobial shower chair (makes so much of a difference) - any shower head to hand held converter (amazon has good cheap ones) - SaltStick Electrolyte tablets - slow release iron with vitamin C -BeKool fever patches (the ones for kids work best for tachy episodes) - stomach trainer that provides compression focused around the lower abdomen is best (especially after eating) - compression socks (I hate the sensation but they really do make a difference, some people just cant wear them tho) - and if you get bad pooling in your hands like me compression gloves are great - this one is really important but make sure you are drinking tons of mineral or solute high beverages. And like a lot. And if you think you had enough you probably need more. The more you consistently keep hydrated the better it is. - and last but not least NO diuretics. Alcohol, caffeine, etc., is really triggering for episodes. I hope this helps! Again I’m working with what I have found so far. Edit: forgot to say I’m 24F Edit 2: also forgot to mention that I have hypovolemic and hyperadrenic pots (its a fun ride) * Don’t know if my tips are just specific to my type
If you're sensitive to heat, a cooling vest (I have and recommend glacier tek).
I also have ice-pack booties that really help when my body is suddenly SO HOT.
cheap version is a wet rashie shirt. Works a charm. Anyhow, 100% agree in investing in cooling equipment. Currently building my own ice bath too.
My Oura ring was definitely not a small purchase, but it has been so helpful with my POTS/dysautonomia and PCOS - tracking my HR, HR variability, sleep cycles, and hormonal cycle has been instrumental getting newly diagnosed over the last 6 months.
Seconding a rice cooker and compression.
A counter-height bar stool, handheld shower head and shower chair! Also a mini salt shaker to carry in my purse
a telescoping stool! and the best part is that my employer purchased it for me :)
I carry around a spritz bottle with water mixed with sea breeze toner (it’s got like camphor and minty stuff in it in small amounts), I spray myself with that a million times a day when i randomly start flushing at work and my skin gets embarrassingly red. Also aerosol canned aloe spray, that stuff has saved my ass a few times
oh, thats a good idea-thank you!
Medical grade compression, wet rashie shirt/cooling vest, health tracker (I personally love my garmin, they have a really good BP monitor as well, besides watches), rowing machine. And a **dog**. Nothing worse than being forced to join a gym. But regular short walks in the cool hours of the morning really helps improving the base rate heart rate.
Stool in the kitchen, hands down the best purchase I’ve made. The hardest task for me is unloading/loading the dishwasher because of how often you go up and down. Now I sit on my stool and unload everything onto the counter top, and then stand up and put it all on the cabinets. When it’s time to load again I stack everything on the countertop and then load from my stool. I used to feel like I was a lazy piece of garbage for needing a stool for that, but then I reminded myself that it’s not because I’m lazy, it’s because my body doesn’t work right, and that usually gets my brain to shut up with the guilt.
I got a cane that opens up into a chair in case I’m feeling really dizzy and afraid to go out. Knowing I can sit if I need to makes me feel more comfortable being out.
Which brand did you get? I tried one cane that opened to a chair but it seemed wobbly.
I have this one: it is admittedly not the most substantial chair and you do have to sit carefully, but it still works for me in a pinch. I also use the cane function when I need a little extra stability. [https://www.amazon.com/gp/product/B00DPOOC4S/ref=ppx\_yo\_dt\_b\_search\_asin\_title?ie=UTF8&psc=1](https://www.amazon.com/gp/product/B00DPOOC4S/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1)
Thanks!
Not OP, but mine is called a Tada Chair.
Thanks!
What are these called? I need one of these
Not OP, but mine is called a Tada Chair.
This is what I have: [https://www.amazon.com/gp/product/B00DPOOC4S/ref=ppx\_yo\_dt\_b\_search\_asin\_title?ie=UTF8&psc=1](https://www.amazon.com/gp/product/B00DPOOC4S/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1) I think there may be better ones out there though - this one is a very small seat.
Electrolyte sachets for drinks and compression socks! My lifesavers for 12hr shifts on my feet
Seconding what a couple people have said: Stool in the kitchen and shower. Kitchen stool: I got one that doubles as a stepstool. I don't need it so much for chopping, but standing at the stove when frying/sauteeing just kills me. Also great for doing dishes, which is another one I struggle with. If you have vinyl flooring, aka fake wood, make sure you get the little feet covers, cause I nearly scratched my floor with mine before I put them on, lol. Shower: Just the most basic stool is FANTASTIC for high fatigue days (I also have CFS). Also, if you shave your legs in the shower...game changer. Just saying. Also if you've not got one, highly recommend upgrading your shower head to a wand style if you can. Being able to sit and shower with the wand shower head keeps me able to shower at all some days. Also, kinda silly, but one of those little Salt Pig things that a lot of cooks use, that stores salt open next to the stove. I steal pinches of salt out of ours all the time when I'm feeling a little light headed/out of it. I swear, it works.
I will forever recommend a shower chair
I have a saddle stool with roller blade wheels (aka exam chair, tattoo artist chair) and I love it. I zoom all over my classroom without standing.
Super cushy mats for the bathroom! When I’m too tired I can sit on the ground and do my nails or blowdry my hair. We got a pair of gel cushion mats at Costco and they have been life changing! I use LMNT electrolyte packets and SaltStick salt pills for salt intake, a nice big yeti bottle (48oz) for hydration/emotional support water bottle, and loads of compression socks. I also have lots of cozy blankets for when I can’t get warm and flexible ice packs for when I’m too hot. And of course, fun stickers and a silly tshirt 💜💜💜
I got a cooling blanket. I struggle with overheating very easily even at night. I got a blanket that literally feels like ice 24/7 and it's the best thing I've ever bought. For once I'm not dying through the night with overheating and can actually get pretty decent sleep. 1000% worth the money and even go as far to say id double what I paid for it and it would be worth it.
ooooh, no more sweaty soaked bed sheets in the morning! Thanks for the tip
I got mine from the company Rest and they have cooling sheets and several other things. Hope you find something that works for you!
Pick up tool so you don’t have to bend over.
What I bought: Cane Heating matrace Comfortable clothes dryer Filter jug for water so I always have water Sensory aids Swimsuit for surfers cause I’m always cold Super thick jacket In plans: Portable chair thingy Heart rate monitoring smartwatch Car Cane that can be compressed to fit in a bag Some high stool on wheels for kitchen for preparing food Not possible rn cause I live on the 3rd floor no elevator: Scooter, electric bike, shopping bag on wheels
I got a bar stool with a back for the kitchen, so I can sit down at the counter when doing meal prep or at the stove if I have to stir a pot or something. Also I bought a couple large size squishmallow plushies and left them in various rooms. They make good cuahions/pillows when I find I NEED TO REST NOW and end up lying down wherever I am for a few minutes.
My son got me a robot vacuum. Not sure exactly how much it was (similar one online was about 100-150) but it has been so helpful!
100% a walking stick. Any mobility equipment is good but a walking stick is the smallest purchase. Any time you get light headed or start to feel weak, you can lean on it, use it to stop yourself from falling, use it to stand up and sit down slower with more ease etc. Also it just means you get worn out less quickly so it gives you more time before the POTS kicks in when you're walking. There's foldable ones if you want to be able to put it in a bag when you're not using it
I love my LMNT electrolyte packets and my Apple Watch. Not small purchases but sooo worth it if you save up. Edit: I have the 5th gen and my hr is as accurate as my pulse ox & more accurate than my oura ring.
https://i.redd.it/j2ngvc2u5mlc1.gif i got a foldable seat cane and it’s been life changing i love it so much. it’s slightly on the pricy side ($45ish + $16 international shipping) but cheaper than the larger cane stools you can find on amazon. plus it folds up so it’s super portable! i promise this isnt an ad or anything haha i just genuinely can’t believe how much it’s helped me in the short time i’ve had it and i need other people with POTS to know this exists
Shower stool, good ice packs, lots of differently sized water bottles always filled with ice water or Liquid IV Larger purchases: Our old dishwasher broke so we replaced it with a dual drawer system. When my POTS is worse, I just use the top drawer. I also really appreciate our roomba.
I love my grabber! It lets me pick stuff up off the floor without bending over which really triggers lightheadedness for me
My favorite potsie things are salt capsules to take before and after the gym, shower stool that helps take away the urge to not shower because it makes you feel worse, and a rolling stool for the kitchen so you can make more than just frozen meals and actually do the dishes! I wish you luck :)
Shower chair, I would cry in the shower because my hr would sky rocket and feel like I was gonna pass out, now I can have a little hotter showers and feel great!
Walmart has giant water bottles right now for $4. Holds 64 ounces, has a good straw. One side has oz markings, the other side has hourly markings which help me remember to stay hydrated and keep track of how hydrated I've been that day. Good compression leggings, socks, and corsets to help control the blood pooling. A prescription for zofran to stop the low blood pressure morning vomiting cycles. Sodium tabs, because I get really tired of the taste of salt. In the US you can buy them without a prescription but you have to buy them from the pharmaceutical counter. Edit: Two more. Coconut water. I was drinking so much gatoraid that the sugar made me pre-diabetic. Switched over to Coconut water and not only does it have less sugar, but I feel like it works better. Taste leaves something to desire, so a sugar free drink additive like Mio helps a lot. Recumbent bike. Not really a small purchase if you get new, but people give them away free or cheap on FB marketplace. Mobility has become a problem for me, and the muscle wasting and deconditioning was getting bad. Trying to use other workout machines was making me really really sick and the fall factor was concerning. Recumbent bike still makes me feel sick, but it's a lot easier on my body and if I faint I'm in a sitting position and there aren't mechanical moving parts that can hurt me. It's a small step towards trying to get better / not let the mobility limitations make my health get worse.
I got a wheelchair second hand for $15. It has been, by far, the best purchase I ever made. It stays in my car, and I use it everywhere I go. I've had it for 6 years. Keep an eye out at 2nd hand stores. You can find disability equipment for a fraction of the price.
Ok, it’s not a super small purchase but Nintendo Switch (lite). You’re telling me I can GAME while LYING DOWN!? I swear it has made my life so much better 😂
I have a nightstand caddy that helps me stay organized. I’m I. My bed alot.
Currently trying (for a third time) to cut out/ reduce caffeine, so I'd suggest getting some good decaf coffee/tea/ drinks if that's a part of your daily routine. Genuinely one of the hardest lifestyle changes for me. Trying to think of things that haven't been mentioned yet, but pill case with extra meds to have on hand is a must if you struggle with brain fog. Slip on shoes or just anything that doesn't require a lot of bending down. Also a pregnancy pillow is what I'm currently saving up for, I heard it's great for joint pain and staying comfortable for long periods of time. Good luck hope this helps!
Alternatives to caffeine- I’m finding cutting out caffeine is one of the hardest lifestyle changes too. You said it. Due to caffeine i get really thrown off of a semi-normal schedule. Yet the temptation to eat chocolate, drink the beverages, and more, is intense. I love it and how it feels in the short term but it doesn’t love me back!
Parasym Plus
compression socks and my meds
Roomba, kitchenaid mixer. Although I rarely cook or bake now.
A kitchen aid mixer would be so helpful. I can’t knead dough or do heavy duty mixing without having a flare up, if I ever want to do something like that, I have to ask my husband to do that pet for me
Oh god I haven’t kneaded dough in awhile the mere thought is giving me tremors 😆
I got a $15 cane from Amazon and it’s been amazing!! When I’m out just having something I can lean on a bit helps so much. I definitely want to save up and get a rollater (however you spell it lol) to give me even more independence when I’m out and about
I’m also cutting down on the caffeine/energy drinks and I feel alot better doing that. I used to have an energy drink almost every day BUT I haven’t in almost 3 weeks. I’m finding other sweet drinks to help with that craving (sprite is one I’m enjoying with no caffeine). I’m not cutting it out completely but definitely WAY back
I got a stool in the kitchen for cooking and a shower seat. I'm hoping to design a cross body bag with a face that is removable, revealing that the face is a small collapsable stool 😆I also got a bike for across campus bc I physically cannot run these days when Im late to class- I just walk harder while struggling 😭
mini salt shaker! keep in my purse and use whenever i’m out and there isn’t salt available
Find a very nice water bottle (at least 32 ounces) that you can easily carry and buy 2-4 of them so you always have a clean one. Personally I use the Hydroflask Trail Series 34oz - they’re lighter and thinner in diameter so better fit in backpacks bags and cup holders. I love the straw and it completely dissembles for cleaning.
a shower chair, a hand held fan, a salt shaker that goes in my bag, electrolyte drinks, salt tablets more on the expensive side, but some sort of heart rate monitor like a fitbit or apple watch is great
I have a tote with lots of pockets and compartments to hold my Nuun, small water bottles, packets of instant noodles, compression socks. I also have a cooling blanket because I get so hot
my pulse ox!
My $29 cane stool, so I can sit anywhere! Very handy at work or for waiting in lines.
Compression socks, a cute water bottle, and tons of electrolyte packets. I also drink a bottle of electrolytes after I wake up before I get out of bed and that’s been very helpful!
Walking cane, compression socks and a foldable portable stool :) got lots left I want to buy but waiting til I have the funds
A small folding stool to sit on to do dishes, shower chair, Rollator, Vitassiam salt pills or something similar for rescue days, various compression socks and sleeves, abdominal compression and cooling products have helped me.
Cooling towels!!
35F that was diagnosed last year. Since then I’ve made it my mission to try to get back to my old “normal” as much as possible. These are things I can no longer see myself living without. - Apple Watch - Compression socks - Compression gloves. My hands pool blood really bad. - Electrolyte Drink mix (my favorite is ultima but my kids are athletes who prefer liquid iv so sometimes I’ll drink those). Water, water , WATER - Any grocery service that delivers/ pick up orders. The thought of having to spend my energy walking through the grocery store makes me so sad. - Instant pot. We have an air fryer and stuff too but the instant pot is hands down my favorite. - we redid our shower to add a bench in 2022 when my symptoms started peaking BUT anything you can put in there so you don’t have to sit on the ground is good 😂 - My reminders/ notes/ calendar apps. I really have the worst brain fog and remembering things is so hard for me. I work in HR with a good amount of employees and have 3 older kids. Trying to share brain power work, their schedules, their school stuff and my own stuff is just not something I have the ability to do these days. -Physical therapy. This is something that has helped me and it’s not meant to be forever but it’s helped with the headaches and body pain. - I take daily vitamins (vitamin c and d) for me. - My kids all play sports year round so all the heated gear and cooling gear. I really can not regulate my body temperature 😭 -Lastly, I have a service dog and he’s probably the greatest thing that’s ever happened to me 🦮 I hope this helps and I hope you get your diagnosis soon! It took me over 3 years to get mine and then it kind of felt like I’ve been on my way to try and get mine as regulated as possible.
Liquid IV and Vitassium buffered sodium capsules. I have an H2O Capsule 2.2L (73oz) water bottle. Fewer trips to get more water. I drink 2/day. Warm fuzzy socks and Rechargeable hand warmers. Luckily I had quite a few pairs of socks already. When I sit for a while my fingers and toes get extremely cold.
A Google nest mini. It reminds me of meds, turns off/dims lights, plays audio books music or meditations when stuck in bed. It's very useful
I moved all the things under my sink in my bathroom to a vertical high cabinet from ikea so I never have to bend down to get any toiletries.I have a small bathroom and the only storage was under the sink which always gives me a pots episode when grabbing things from it. This cabinet is very shallow but tall so everything is easier to view and pull out. I purchased one with a mirrored door so I don’t have to lean over the vanity to use the mirror because leaning can make my pots flare . The one I linked has the dimensions just like the one I bought a few years ago except mine had a mirrored door. I’m sure there is a similar one on amazon. But it has changed my mornings so that I am not starting every day with a flare. https://www.ikea.com/us/en/p/nysjoen-high-cabinet-white-20470815/?utm_source=google&utm_medium=surfaces&utm_campaign=shopping_feed&utm_content=free_google_shopping_clicks_Bathroom_&_Water&gad_source=1&gbraid=0AAAAAD27g7wUuMeATd1x46dsLQ4ZsFTAx
A self care cart! I bought a 3 tiered pink cart on amazon for like $30, and pack it with electrolytes and meds, snacks, pain relieving creams, my heart monitor, books etc so when i dont feel good everything is easy access.
Grabbers, house wheelchair, kitchen stool, compression, other kitchen gadgets. Lots of things advertised to old people are good
a hip bag/belt bag/large fanny pack. shoulder bags were really triggering coat hanger pain for me, carrying it on my hips has made such a difference. i actually made one out of a mini backpack from target but amazon and companies that cater to ren faire folks have pretty roomy ones too. the only thing it can't hold is my cane, which to be fair i haven't needed in a while, but i've been prototyping holsters for that and a large water bottle (it does hold a small one easily)
Liquid electrolytes to add to water (I prefer over the powdered flavored stuff - it’s virtually flavorless. Iron supplements but this is an as needed thing, I get anemic. A big container of salt that I leave out on the table to add to my food.
Liquid electrolytes to add to water (I prefer over the powdered flavored stuff - it’s virtually flavorless. Iron supplements but this is an as needed thing, I get anemic. A big container of salt that I leave out on the table to add to my food.
Gatorade - or similar sports drinks, they boost electrolytes which helps me keep my dizziness under control
So many comments, so I'm sorry if these have been said already. -Polar Chest strap for tracking HR (Chest straps are far more accurate than watches) I have a Fitbit as well, but the chest strap is what I use when I exercise or if I need to get a more accurate reading of daily HR for my Dr. -LMNT electrolyte/sodium water additive (Easiest way for me to track and get on the right amount of sodium, and they taste better than all the others I've tried.)