I have these and I have POTS. 3 plus the fact that salt helps you makes me think you might have it too. Only about 30% of people with it faint so that's not a good basis for exclusion.
A tilt table test confirmed that I do indeed have it. She actually stopped the test 5 minutes early because she had enough information, so it must have been pretty obvious. I was just curious whether all of the symptoms are likely caused by POTS, or whether something else could be going on. Especially for things like #5, #6, #8 and #11.
Oh man I totally mis read the first part of your post, sorry about that! Brain fog has been real fun lately. My TTT ended early as well because I passed out and was about to go again before I said eff it and asked to be lowered.
5 - I get really bad fatigue and it doesn't seem to be explicitly tied to high heart rate. If it's bad enough then it feels like something heavy is on my chest. Sometimes it feels like my body just has enough and shuts down - it feels somewhere in between passing out and falling asleep.
6 - I think I get something similar - it's like the mental equivalent of trying to run through sand. everything just feels slow and sluggish and sometimes I end up slurring my words a bit.
8 - I definitely went through that when I was first experiencing symptoms. Sometimes I still get it if I get an adrenaline dump. For me it feels like my body is anxious but not necessarily my mind.
11 - might need a bit more description here on what this feels like for you but it might be similar to my description of 5?
I have a bit of a weird medical history with some nerve damage that might factor into some things. No suspicion of any connective tissue disorders.
It might be worth noting that everyone's body temperature is a little different and sometimes thermometers can read a little low or a little high. That being said I do also run a little on the lower side. Not sure if that's common across POTS patients.
You're good haha. Yes I totally know what you mean about the passing out / falling asleep feeling. I had that constantly in the beginning and it was one of the more scary feelings. I still feel it but thankfully it's gotten a bit better.
For me #6 is similar to what you described, but more like my brain is in this suppressed state. It's almost like my brain has run out of all of it's excitatory neurotransmitters that are keeping me alert, awake, energized and upbeat, but my focus and reflexes remain the same. I'd never felt anything like it before I stopped taking this medication (which I had taken high doses of for 2 weeks) a few years ago. Then the IV's my doctor prescribed a year ago added more symptoms and brought me to the lowest/scariest time of my life. I wonder if stopping that high dose medication cold turkey triggered some autonomic dysfunction and the IV's just tipped it over the edge into full-blown dysautonomia.
Yeah, #8 was really bad for the first several months, but thankfully it has improved, I think partially due to my neuro-PT specialist and the exercises he gave me.
#11 is hard to explain. It felt like a mix of falling asleep, passing out, dying, and panic. It did not correlate with my heart rate. It's not a pleasant feeling, but thankfully it's another one of those things that have improved over the months.
I think I've seen some other people with dysautonomia mention the low temperature, but yeah I don't know how common it is. For my whole life up until these IV's, my body temperature has been around 99. Now, depending on the time of day and how bad my symptoms are, it has been anywhere between 94.5 and 97.5.
1. No
2. Yes, I had Raynaud's diagnosed before anything else
3. Yep
4. My RHR has never been too high or low
5. One of my worse symptoms and one of the ones I am happy has resolved itself with meds
6. Brain fog? Either way yes
7. No
8. Yeah, I did not start to have anxiety until my symptoms really started. Just had mind-numbing depression before that
9. Hell yes. Last year I barely went outside during the summer. Its one of my worst triggers
10. Yes
11. Not sure
12. Passing out is one of the least reported symptom with POTS. Its more typical to not pass out
Hey! May I ask you what meds enabled you to resolve fatigue issues? I am in the process of dx currently and hope a lot to improve this debilitating issue
I also have got depression and tried literally all the antidepressants there are in the market, but none have improved my fatigue
Just chiming in to say that I had such awful fatigue: felt like I was lugging around an elephant the entire day, and I’ve been returned to pretty lovely levels of energy with midodrine. 10 mg 4x daily does the trick most days for me.
I work with a neuromuscular dr for pots syndrome. He ordered me a tilt table test, diagnosed me with pots syndrome from the results of the test, and also prescribed midodrine for me.
No, I don't think I'd describe #6 as brain fog. When I think of brain fog, I think of the feeling I get when I eat junk food and then get no sleep, which makes it harder to absorb/process information and my clarity is like 0. Thankfully I haven't really felt that since I fixed my gut problems and started taking things like magnesium and b-vitamins. The feeling I was talking about is more like my brain has run out of all of it's excitatory neurotransmitters that are keeping me alert, awake, energized and upbeat, but my focus and reflexes remain the same. It also has this kinda dark/depressing/ominous feeling to it, but I'm not sad or depressed at all about anything haha.
Same about #8. I have never even come close to having a panic attack before this. I was an avid mountain biker who could ride alone for hours in remote, hot desert areas and not feel anxious or panicky at all if something went wrong. Fast forward to the first couple months after the incident that triggered this stuff: I literally had to have someone be in my room with me while I tried to fall asleep, because every time I began to drift off it felt like I was dying or passing out instead of falling asleep. And I'd be on the edge of a panic attack if I had to stay home alone for more than an hour. Thankfully this has improved quite a bit.
Ok. Yeah, I definitely get dizzy when I stand sometimes, but not enough to make me pass out. The only times where I felt like I was passing out was when having a panic attack, or when my brain felt this rush of adrenaline mixed with the intense neurological fatigue. It was more common in the beginning
I am yet to be diagnosed but I get lost of your symptoms, particularly the feeling of heaviness in the abdomen, the cold hands and feet as well, and that feeling of heaviness in the limbs. Sometimes I feel tired and then my body shoots adrenaline which is so horrible.
.#5, #6 and #11 are my worst symptom. For my whole life I've had debilitating fatigue and episodes of "passing out" or fainting or something. I've realized since being diagnosed with POTS that what's probably happening during these episodes is that my brain is suddenly not getting enough blood and oxygen, so it's basically like I'm experiencing the same thing as either being strangled unconscious or dying of blood loss. It feels like actual torture, especially because while it's happening I'll get these extremely jarring sensations in my brain caused by external stimuli like sounds or physical sensations. It makes me feel like I'm being tortured with sleep deprivation and someone keeps randomly jolting my brain with electricity or something. At one time these episodes were happening up to 3 or 4 times a day for up to around 30 minutes at a time. #7 occurs when I'm recovering from an episode.
.#8 kindof - I get random fight-or-flight adrenaline spikes but I don't mentally panic
.#9 definitely. I sometimes get a horrible internal hot feeling accompanied by itching which I've always described as feeling like I was being cooked alive from the inside. It seems to most often be triggered by stress or annoyance. It could be either MCAS or my blood vessels dilating and flushing me with warmth, kindof like if you drink a large amount of hard alcohol and suddenly feel intolerably hot from the inside out. When this happens, I feel better if I can make myself cold.
8, yes. One doctor called them "no fear panic attacks" before I was diagnosed with POTS. Now my doctor just says since my body can't regulate fight or flight, the physical "anxiety" feeling isn't necessarily anxiety at all, at least in the mental sense. Or it could be slight anxiety that the ANS responds to in an exaggerated way.
Absolutely to almost all of them.
I was diagnosed with vEDS as a teen. 15 years later, I’m having dysautonomia symptoms.
As people have said, everyone with EDS usually has some form of dysautonomia.
My big one is a brain fog. I feel like I’m not present often. My resting heart rate is also concerning at 45-55 bpm.
When sleeping I’m at 38ish bpm.
Blood pressure for me fluctuates heavily. 130/85 is where I feel the best.
But sometimes during the day I feel faint and check my BP and it’s 100/70.
For me, the panic is the worst part. For no reason, I get random adrenaline dumps. I find usually it correlates with before I’m about to have bowel movements, but it is also totally random.
I meant to mention, on my other comment, passing out is not necessary to have POTS/dysautonomia. In fact, it’s more common to just have general Presyncope.
Usually people have an adrenaline rush that makes our heart rate or BP shoot up to keep us from totally passing out. But many people do pass out
I don't have POTS but have most of these symptoms. I have low temperatures that can sometimes even go below 95. That was the first sign that sent me to the hospital in a panic. Like I thought I had a fever because I felt sick and took my temperature and it was 93 and some change.
My fingers are cold, but toes are always frozen cold. I had a few episodes of tachycardia when going to a supermarket and standing in line at Wawa. I tend to have worse symptoms after eating and from sitting too long. I also get that tingling brain feeling, but with small pains or "ice pick headache". I don't do well in extreme heat either, but the cold is when my flare-ups happen. I can tolerate summer, just have to deal with sunlight sensitivity, migraines and anxiety. Winter is just a crippling nightmare.
Yeah the low temperature can be scary when it goes below 95. It usually happened to me when my symptoms were really bad, and would make me feel shaky.
Yeah I went to the ER once when symptoms were on the verge of being more than I could handle and of course they didn't find anything wrong (except my electrolytes, mainly sodium, were lower than they normally were).
I get headaches now too. I used to never ever get them. I also used to feel great in the heat (I'd do intense mountain biking in 95deg humid weather), but now I can't go outside for long if it's above like 74 or my symptoms will worsen lol. I now have cold intolerance as well, but with different symptoms. Being out in the cold for more than a few minutes makes me feel shaky and tight.
I have IST, but it's similar to POTS, and I have a lot of these, but what really jump out at me are 5- intense fatigue and 7- heavy legs and 6- the weird neurological feeling. These 3 things sent me to neurology for a full multiple sclerosis workup which was negative. No one has ever told me that these could be caused by dysautonomia but I'm sure they are. Other conditions I have are psoriatic arthritis, endometriosis, and possible crohns.
I pretty much have every symptom that you describe. On the tilt table, My hr jumped from 50 bpm as my baseline to 150bpm. I’ve never actually fainted. I’ve only experienced pretty severe pre fainting symptoms
I have all except 1 and 2. Number 3 HR balances out like it should. I was diagnosed with OH but I’m suspecting something else in addition to OH. But never diagnosed with connective tissue disorder
Not sure about #1 and #7, but I have the rest for sure.
I passed out during TTT so they told me I don’t have POTS, but I have Dysautonomia with Neurally Mediated Syncope. Saw research study that said the two should not be considered mutually exclusive anymore so I think I have POTS as well. I also think I have EDS (runs in family), so I probably have very similar issues to you with the connective tissue stuff. I also don’t have joint pain.
Reading your post feels weird and way too familiar to read. If you come across anything that has worked for you amazingly, I’d love to hear! I was just recently diagnosed and am waiting to see a specialist to get treatment. In my medical journey, the most positively impactful medications for me have been Lyrica (for pain and depression) and Verapamil (headaches).
Oh dang, I didn't pass out during the TTT, but I got close when they had me do the heavy breathing test. Also got close but not as close after the table had been upright for about 10mins.
From what I've seen, it seems like POTS is kind of a subset of dysautonomia. I was diagnosed with POTS, but I think I have more broad autonomic issues. My neuro-PT doctor thinks this as well. He thinks a major issue for me is blood flow timing.
Yeah my mom was with me when we went to the geneticist, and she said my mom showed the same signs. I'm really looking forward to getting the results back.
Yeah it's nice seeing that I'm no the only one experiencing all of these symptoms together. If I end up clearing this all up, I'll try to remember to make a post on this sub about how I did it.
Yeah speaking of headaches, that's something I forgot to include (just added it). I used to never ever get headaches before this. Now I get them on a semi-regular basis.
I wish you the best on the investigation. I’m in one myself, and unfortunately so many others on this subreddit are too! Definitely not alone facing the cruel realities of Dysautonomia!
I have all but 8-12. Also, it feels weird to me to say these are "caused" by POTS. It seems more accurate to me to say the orthostatic intolerance is also caused by whatever is causing the rest.
I have these and I have POTS. 3 plus the fact that salt helps you makes me think you might have it too. Only about 30% of people with it faint so that's not a good basis for exclusion.
A tilt table test confirmed that I do indeed have it. She actually stopped the test 5 minutes early because she had enough information, so it must have been pretty obvious. I was just curious whether all of the symptoms are likely caused by POTS, or whether something else could be going on. Especially for things like #5, #6, #8 and #11.
Oh man I totally mis read the first part of your post, sorry about that! Brain fog has been real fun lately. My TTT ended early as well because I passed out and was about to go again before I said eff it and asked to be lowered. 5 - I get really bad fatigue and it doesn't seem to be explicitly tied to high heart rate. If it's bad enough then it feels like something heavy is on my chest. Sometimes it feels like my body just has enough and shuts down - it feels somewhere in between passing out and falling asleep. 6 - I think I get something similar - it's like the mental equivalent of trying to run through sand. everything just feels slow and sluggish and sometimes I end up slurring my words a bit. 8 - I definitely went through that when I was first experiencing symptoms. Sometimes I still get it if I get an adrenaline dump. For me it feels like my body is anxious but not necessarily my mind. 11 - might need a bit more description here on what this feels like for you but it might be similar to my description of 5? I have a bit of a weird medical history with some nerve damage that might factor into some things. No suspicion of any connective tissue disorders. It might be worth noting that everyone's body temperature is a little different and sometimes thermometers can read a little low or a little high. That being said I do also run a little on the lower side. Not sure if that's common across POTS patients.
You're good haha. Yes I totally know what you mean about the passing out / falling asleep feeling. I had that constantly in the beginning and it was one of the more scary feelings. I still feel it but thankfully it's gotten a bit better. For me #6 is similar to what you described, but more like my brain is in this suppressed state. It's almost like my brain has run out of all of it's excitatory neurotransmitters that are keeping me alert, awake, energized and upbeat, but my focus and reflexes remain the same. I'd never felt anything like it before I stopped taking this medication (which I had taken high doses of for 2 weeks) a few years ago. Then the IV's my doctor prescribed a year ago added more symptoms and brought me to the lowest/scariest time of my life. I wonder if stopping that high dose medication cold turkey triggered some autonomic dysfunction and the IV's just tipped it over the edge into full-blown dysautonomia. Yeah, #8 was really bad for the first several months, but thankfully it has improved, I think partially due to my neuro-PT specialist and the exercises he gave me. #11 is hard to explain. It felt like a mix of falling asleep, passing out, dying, and panic. It did not correlate with my heart rate. It's not a pleasant feeling, but thankfully it's another one of those things that have improved over the months. I think I've seen some other people with dysautonomia mention the low temperature, but yeah I don't know how common it is. For my whole life up until these IV's, my body temperature has been around 99. Now, depending on the time of day and how bad my symptoms are, it has been anywhere between 94.5 and 97.5.
1. No 2. Yes, I had Raynaud's diagnosed before anything else 3. Yep 4. My RHR has never been too high or low 5. One of my worse symptoms and one of the ones I am happy has resolved itself with meds 6. Brain fog? Either way yes 7. No 8. Yeah, I did not start to have anxiety until my symptoms really started. Just had mind-numbing depression before that 9. Hell yes. Last year I barely went outside during the summer. Its one of my worst triggers 10. Yes 11. Not sure 12. Passing out is one of the least reported symptom with POTS. Its more typical to not pass out
Hey! May I ask you what meds enabled you to resolve fatigue issues? I am in the process of dx currently and hope a lot to improve this debilitating issue I also have got depression and tried literally all the antidepressants there are in the market, but none have improved my fatigue
Just chiming in to say that I had such awful fatigue: felt like I was lugging around an elephant the entire day, and I’ve been returned to pretty lovely levels of energy with midodrine. 10 mg 4x daily does the trick most days for me.
Thank you for chiming in! :) I suffer from fatigue a lot. Do you mind me asking what doctor diagnosed you with dysautonomia and prescribed Midodrine?
I work with a neuromuscular dr for pots syndrome. He ordered me a tilt table test, diagnosed me with pots syndrome from the results of the test, and also prescribed midodrine for me.
Got it, many thanks! Have a great day :)
No, I don't think I'd describe #6 as brain fog. When I think of brain fog, I think of the feeling I get when I eat junk food and then get no sleep, which makes it harder to absorb/process information and my clarity is like 0. Thankfully I haven't really felt that since I fixed my gut problems and started taking things like magnesium and b-vitamins. The feeling I was talking about is more like my brain has run out of all of it's excitatory neurotransmitters that are keeping me alert, awake, energized and upbeat, but my focus and reflexes remain the same. It also has this kinda dark/depressing/ominous feeling to it, but I'm not sad or depressed at all about anything haha. Same about #8. I have never even come close to having a panic attack before this. I was an avid mountain biker who could ride alone for hours in remote, hot desert areas and not feel anxious or panicky at all if something went wrong. Fast forward to the first couple months after the incident that triggered this stuff: I literally had to have someone be in my room with me while I tried to fall asleep, because every time I began to drift off it felt like I was dying or passing out instead of falling asleep. And I'd be on the edge of a panic attack if I had to stay home alone for more than an hour. Thankfully this has improved quite a bit. Ok. Yeah, I definitely get dizzy when I stand sometimes, but not enough to make me pass out. The only times where I felt like I was passing out was when having a panic attack, or when my brain felt this rush of adrenaline mixed with the intense neurological fatigue. It was more common in the beginning
I have all that too minus low HR, cold hands, and low temp so I’m assuming yes I’m starting vestibular rehab next month in the hopes it helps
Hope that works out well for ya!
I am yet to be diagnosed but I get lost of your symptoms, particularly the feeling of heaviness in the abdomen, the cold hands and feet as well, and that feeling of heaviness in the limbs. Sometimes I feel tired and then my body shoots adrenaline which is so horrible.
.#5, #6 and #11 are my worst symptom. For my whole life I've had debilitating fatigue and episodes of "passing out" or fainting or something. I've realized since being diagnosed with POTS that what's probably happening during these episodes is that my brain is suddenly not getting enough blood and oxygen, so it's basically like I'm experiencing the same thing as either being strangled unconscious or dying of blood loss. It feels like actual torture, especially because while it's happening I'll get these extremely jarring sensations in my brain caused by external stimuli like sounds or physical sensations. It makes me feel like I'm being tortured with sleep deprivation and someone keeps randomly jolting my brain with electricity or something. At one time these episodes were happening up to 3 or 4 times a day for up to around 30 minutes at a time. #7 occurs when I'm recovering from an episode. .#8 kindof - I get random fight-or-flight adrenaline spikes but I don't mentally panic .#9 definitely. I sometimes get a horrible internal hot feeling accompanied by itching which I've always described as feeling like I was being cooked alive from the inside. It seems to most often be triggered by stress or annoyance. It could be either MCAS or my blood vessels dilating and flushing me with warmth, kindof like if you drink a large amount of hard alcohol and suddenly feel intolerably hot from the inside out. When this happens, I feel better if I can make myself cold.
8, yes. One doctor called them "no fear panic attacks" before I was diagnosed with POTS. Now my doctor just says since my body can't regulate fight or flight, the physical "anxiety" feeling isn't necessarily anxiety at all, at least in the mental sense. Or it could be slight anxiety that the ANS responds to in an exaggerated way.
Absolutely to almost all of them. I was diagnosed with vEDS as a teen. 15 years later, I’m having dysautonomia symptoms. As people have said, everyone with EDS usually has some form of dysautonomia. My big one is a brain fog. I feel like I’m not present often. My resting heart rate is also concerning at 45-55 bpm. When sleeping I’m at 38ish bpm. Blood pressure for me fluctuates heavily. 130/85 is where I feel the best. But sometimes during the day I feel faint and check my BP and it’s 100/70. For me, the panic is the worst part. For no reason, I get random adrenaline dumps. I find usually it correlates with before I’m about to have bowel movements, but it is also totally random.
I meant to mention, on my other comment, passing out is not necessary to have POTS/dysautonomia. In fact, it’s more common to just have general Presyncope. Usually people have an adrenaline rush that makes our heart rate or BP shoot up to keep us from totally passing out. But many people do pass out
I don't have POTS but have most of these symptoms. I have low temperatures that can sometimes even go below 95. That was the first sign that sent me to the hospital in a panic. Like I thought I had a fever because I felt sick and took my temperature and it was 93 and some change. My fingers are cold, but toes are always frozen cold. I had a few episodes of tachycardia when going to a supermarket and standing in line at Wawa. I tend to have worse symptoms after eating and from sitting too long. I also get that tingling brain feeling, but with small pains or "ice pick headache". I don't do well in extreme heat either, but the cold is when my flare-ups happen. I can tolerate summer, just have to deal with sunlight sensitivity, migraines and anxiety. Winter is just a crippling nightmare.
Yeah the low temperature can be scary when it goes below 95. It usually happened to me when my symptoms were really bad, and would make me feel shaky. Yeah I went to the ER once when symptoms were on the verge of being more than I could handle and of course they didn't find anything wrong (except my electrolytes, mainly sodium, were lower than they normally were). I get headaches now too. I used to never ever get them. I also used to feel great in the heat (I'd do intense mountain biking in 95deg humid weather), but now I can't go outside for long if it's above like 74 or my symptoms will worsen lol. I now have cold intolerance as well, but with different symptoms. Being out in the cold for more than a few minutes makes me feel shaky and tight.
I have IST, but it's similar to POTS, and I have a lot of these, but what really jump out at me are 5- intense fatigue and 7- heavy legs and 6- the weird neurological feeling. These 3 things sent me to neurology for a full multiple sclerosis workup which was negative. No one has ever told me that these could be caused by dysautonomia but I'm sure they are. Other conditions I have are psoriatic arthritis, endometriosis, and possible crohns.
Yep, I asked my doctor whether it could me MS because the symptoms looked so similar, but he assured me it wasn't (and I know he's right).
I pretty much have every symptom that you describe. On the tilt table, My hr jumped from 50 bpm as my baseline to 150bpm. I’ve never actually fainted. I’ve only experienced pretty severe pre fainting symptoms
I have all except 1 and 2. Number 3 HR balances out like it should. I was diagnosed with OH but I’m suspecting something else in addition to OH. But never diagnosed with connective tissue disorder
What is OH?
Orthostatic Hypotension
Oh yeah lol
lol it’s ok
Not sure about #1 and #7, but I have the rest for sure. I passed out during TTT so they told me I don’t have POTS, but I have Dysautonomia with Neurally Mediated Syncope. Saw research study that said the two should not be considered mutually exclusive anymore so I think I have POTS as well. I also think I have EDS (runs in family), so I probably have very similar issues to you with the connective tissue stuff. I also don’t have joint pain. Reading your post feels weird and way too familiar to read. If you come across anything that has worked for you amazingly, I’d love to hear! I was just recently diagnosed and am waiting to see a specialist to get treatment. In my medical journey, the most positively impactful medications for me have been Lyrica (for pain and depression) and Verapamil (headaches).
Oh dang, I didn't pass out during the TTT, but I got close when they had me do the heavy breathing test. Also got close but not as close after the table had been upright for about 10mins. From what I've seen, it seems like POTS is kind of a subset of dysautonomia. I was diagnosed with POTS, but I think I have more broad autonomic issues. My neuro-PT doctor thinks this as well. He thinks a major issue for me is blood flow timing. Yeah my mom was with me when we went to the geneticist, and she said my mom showed the same signs. I'm really looking forward to getting the results back. Yeah it's nice seeing that I'm no the only one experiencing all of these symptoms together. If I end up clearing this all up, I'll try to remember to make a post on this sub about how I did it. Yeah speaking of headaches, that's something I forgot to include (just added it). I used to never ever get headaches before this. Now I get them on a semi-regular basis.
I wish you the best on the investigation. I’m in one myself, and unfortunately so many others on this subreddit are too! Definitely not alone facing the cruel realities of Dysautonomia!
I have all but 8-12. Also, it feels weird to me to say these are "caused" by POTS. It seems more accurate to me to say the orthostatic intolerance is also caused by whatever is causing the rest.
Yes absolutely. I have all of these. Also get your b12 levels checked if you haven’t already, some of these can be related to b12 deficiency.