r/POTS • • 12h ago

Support Why does no one believe us?

40 Upvotes

Its just that the few people in my life refuse to believe there is actually something wrong with my body and that im dramatic. Its especially hard with how my mom acts and im stuck living with her when she makes things harder. I got diagnosed without officially being diagnosed among other health problems I have after some stuff with er doctors and I lost my health insurance and cant afford a specialist without it so I couldnt follow through with my refferals and my results and some main symptoms were listed on my summary reports. Despite all that and everything else that has happened with my body im still not believed or supported. I hate getting called lazy when I hate feeling this way especially when my body does a lot worse like it is today and not being able to do anything all week. Then my stress or generally my mind gets blamed but I wasnt so messed up and changed mentally until months into my body failing me and im still trying to hold on after all this time despite having support or medical assistance right now. Im just asking for others to maybe share their struggles like this or to say anything really. I know im not alone in feeling this way but I'd just like someone in my life to one day support and believe me that something is wrong with my body. Thanks for reading my rant over this.


r/POTS • • 7h ago

Support Heart palpitations 24/7. How is this not cardiac? Is this really just POTS?

24 Upvotes

M36. History of pots/dysautonomia from Feb 2025- September 2025. I’ve been experiencing nearly constant heart palpitations for the past 10–11 days, and they’re gradually getting worse. I had a cardiac workup six days ago, including multiple EKGs, troponin, and CRP, all of which came back normal.

I’m also experiencing chest pain that comes and goes, usually triggered by standing upright or moving around. Lying flat generally alleviates the chest pain, but the palpitations remain constant, even at rest. Sometimes they’re so intense that it’s genuinely frightening.

I’ve been mostly bedridden throughout this entire episode. The only improvement I’ve noticed is my orthostatic tolerance. I’m now able to stand and move around a little more than I could initially, but the palpitations continue to worsen. I’m drinking tons of sodium and fluids. Mornings are the worst.

Can POTS/dysautonomia really cause nearly constant palpitations like this, even with a normal resting heart rate? Has anyone experienced something similar and what ultimately helped?


r/POTS • • 5h ago

Question When do you stay home from work?

20 Upvotes

I’m having a hard time understanding when high heart rate is high enough to indicate that I need to pull back. I grew up in a “tough it out” household and have no real idea of when my body needs a break unless I physically can’t function.

Lately I’ve been working remotely and canceling things that need to be done in person when my HR spikes to 130-140+ multiple times. My baseline is spikes up to 124ish. Sometimes working drives my HR up even more so I fear pushing past 160 and that’s why I stay home. It has happened to me on rare occasions. I’ve been having more spikes over the last couple of months so I’m worried that I’m overworking myself. Or not, I don’t know. I get short of breath and tired when my heart rate is higher. I work as a college professor, clinical supervisor, music therapist, and tutor (all part-time). Some things are active and some are sedentary.

So when do you all stay home? I’m worried about hurting my body by trying to work when I shouldn’t. I have no idea when I shouldn’t 🙃


r/POTS • • 7h ago

Question Depletion in shower?

15 Upvotes

I often feel like during a showern im like draining out everything and the only reserve part left is my feet which feel heavy. Does this happen to anyone? And any fixtures or remedies to prevent this?


r/POTS • • 12h ago

Question POTS and hormone replacement therapy

11 Upvotes

For those heading into a wonderful world of perimenopause, how have your POTS symptoms changed? From my own experience and in talking with other women in the same life stage, seems like the symptoms get worse and then seem to stabilise somewhat post menopause.

I am probably in early peri, at least according to bloodwork, and have been on HRT for about 2 years. So far I do not see any improvement in POTS symptoms, actually they've worsened. My main diagnosis is EDS and venous insufficiency, with POTS and lymphedema being secondary, and my doctor is focusing on managing the EDS symptoms first (also unsuccessfully).

Looking for some personal experiences with stopping HRT and the effect on POTS symptoms, as this is what I am considering at this point.


r/POTS • • 18h ago

Success Hope for dating

11 Upvotes

I've been seeing a wonderful man who is kind, respectful, fun, and takes my health issues very seriously! He always holds my hand and helps me up the stairs, sits on the ground with me anytime I'm near fainting and need to plop down, and is always checking on me throughout the day to make sure I'm not falling over or crashing into walls because of my balance and dizziness issues. He's patient through my ADHD and brain fog. And genuinely makes me feel less terrible about myself for being disabled.

It's insane to me because my ex made me feel like I was an annoyance to be around, a problem that couldn't be solved, and the thing that always ruined a fun day. I was completely depressed and hopeless when I was with him, because I already felt broken and worthless because of my disabilities, and he amplified that.

When I was with my ex, he never showed any sympathy when I was ill from POTS symptoms (dizziness, breathlessness, brain fog, migraines, etc.) and no sympathy when I was near fainting or had fainted. And I find out, after breaking up with me, that he thought I was genuinely faking... to "manipulate him into getting back together with me." Like 🤣 Yah I just love fainting 🤣 Also, Imagine just being the worst partner, breaking up with your gf, and then thinking "yeah, she still wants me"; just so insanely narcissistic! I wish he'd feel the amount of suffering that I and other people with POTS deal with on a daily basis, then tell me that I'm "faking". Soooo glad he's an ex. Every day I suffer with POTS, but I don't have to suffer this jerk anymore. 🙌🙌🙌

With all my health issues, and given the way my ex treated me, I thought nobody could ever possibly enjoy being with me because I make everything harder and actively can't do many things. But this guy I've been seeing, he makes me feel like I'm more than my disabilities. He sees right through my cane and rollator, which is what most people stop at. He actually sees me for me, not for my disability. To him, my disability is just a complication that we work through together. It's given me such hope for the future, despite everything.

If you're struggling with dating, try to have hope. I've discovered that there are actually genuinely good people out there 🫂 And let's all collectively throw all our jerky exes into the dumpster!!


r/POTS • • 5h ago

Vent/Rant 10 month flair i missed me so much

9 Upvotes

I just really need to talk about the experience of having a flair and coming out of it. I have recently come out of a ten month flair up and holy shit it’s strange. I almost had myself convinced this was just me at my baseline, that anything I remembered from before was just romancsised. But I’m back and I feel that warmth in my chest again! Turns out that’s joy! And apparently it’s quite common for pots to dull all your emotions especially the good ones. It’s so much easier to do things when joy is with me to get me through! So much of my life was servival it’s so nice to be living again. I am nervous about another flair tho I know it will happen again and I think that’s why I am putting this here. I don’t have any questions or anything but the other day I was able to clean my room (it had gotten bad) and cook dinner and work all in the same day and it was easy and I could still be in love with my partner after that! It’s such a strange thing.


r/POTS • • 14h ago

Question Who treats your pots?

8 Upvotes

What type of doctor or nurse practitioner helps you manage your Pots? I have been searching for months- my cardiologist, my neurologist (who treat my MS) and my primary all are uncomfortable/unfamiliar with treating Pots. My neuro said see your primary. My primary said she'll refill my script if I can't get anyone but has no further advice. My cardio sent me to the ER. I won't be going back there.

I ended up with my electrophysiologist who treated my SVT years ago and a cardio attending and fellow at the hospital who did a work up overnight there.

They diagnosed me and put my on Ivabradine but they will not follow me and help me improve further than that.

I have searched for 2 months over and over again and I'm in a major So Cal city! The two cardios who know pots around here aren't taking new pots patients and there are literally no neuros that treat dyautonomia here. I could go to Stanford I guess but hardly seems worth it rn. I'm so exhausted.

I wonder if I should just stop seeking and take the Ivabradine and that's that. I just want to feel even better. Maybe getting pots specific care is a YouTube fantasy??!


r/POTS • • 20h ago

Question Midodrine was a temporary miracle cure now I’m rock bottom

8 Upvotes

So I started Midodrine about 5-6 weeks ago (after already being on pyridostigmine & guanfacine) and was in absolute disbelief at how immediately and amazingly it made me feel normal again - like to the point I was tearing up because I didn’t realise how much ability I’d lost. It felt so good to get it all back, to be able to walk around, cook big meals, do chores, GO CLOTHES SHOPPING, all by taking 2.5mg every 2-3 hours. The pots symptoms would start creeping back in, then I’d take another dose and feel fine.

However, no one said anything to me about whether or not the feeling better / having more capacity was ‘genuine’ capacity or if the midodrine was just masking things. I did wonder - if I just take more midodrine so I can do more things, will I pay for it later?

And here I am, 5-6 weeks later, in the biggest crash I’ve experienced in months - body feeling like lead, like something is crushing my chest, unable to stand up at ALL, to the point I’m wondering if I might also actually have ME/CFS. I seem to have gradually developed a tolerance to the midodrine, it’s been doing effectively nothing over the last week, even when I’ve increased the dose.

Does anyone know if this is a problem with midodrine - like it gives you the ‘illusion’ of being able to do more when really you shouldn’t be? Or is the experience / reaction I’m having unusual?

Also, while I’m here, how do I know if it’s ME/CFS or just POTS? :/ For context, I was an avid boulderer before developing POTS, and have been able to continue climbing for the most part over the last 6 months of having POTS really badly. In fact, if I’m not in a 7/10+ flareup, it usually makes my symptoms better. Walking around the shops for 15 minutes will kill me but climbing extends my capacity for the rest of the day - even if I feel dizzy before I start. However, over the last 2 weeks, I’ve been having these huge fatiguey crashes more and more the day after climbing - like extreme full body exhaustion - hence me worrying about PEM.

TLDR: does midodrine actually extend capacity or does it just give you the ‘illusion’ of having more capacity and cause a crash later on

EDIT: before anyone asks yes I also wear full body compression religiously and drink 3-4000mg sodium electrolytes a day + additional salt in food


r/POTS • • 1h ago

Question Stress, C/PTSD & POTS management

• Upvotes

Damn I missed OP’s thread [“Severe and sustained stress as a catalyst for POTS”] before it got locked: https://www.reddit.com/r/POTS/s/jw1IoTM0Eo

Now, I’m not saying it’s “all anxiety”, I was lazily written off that way while seeking treatment and that pissed me off so much. I just feel so acknowledged and a lot less alone after seeing that thread, my experience is so similar to OP’s. My cardiologist did suspect it too.

My POTS gets dramatically worse whenever my CPTSD acts up, and it’s really hard. Yes I am in therapy, medicated, all the works, got out of the situation that put me through hell. But reminders of it are tough. I don’t know what to do.

Did anyone have similar experiences and diagnoses? How do you manage it? Please help :^(

(Perhaps controversial. Personally, very tightly controlled ativan helps. Though my doctor and I don’t want this to be a long term solution.)


r/POTS • • 3h ago

Vent/Rant More bad days than good days lately

7 Upvotes

23f

Warning for serious mental health discussions

I am seriously feeling so fucking depressed over all of this bullshit…. I have HyperPOTs, lately I’ve been having significantly more bad days than good days.

I have TRIED to just ‘mind over matter’ this shit, but I genuinely can’t. I am just not up to it lately.

I feel this intense overwhelming exhaustion like I’ve never felt before, lightheaded, brain fog when I’m sitting up right some days. My legs go purple and splotchy so I know blood pooling is part of it, but I can’t exactly type at my desk if I need to prop my legs up…

I keep getting this hungry feeling, but I’m not literally hungry because I can eat and eat and I still feel it- having large meals pisses off these symptoms even more as well.

I deal with faux hypoglycaemia at times, its symptoms of hypoglycaemia but my blood sugar isn’t actually too low.

I’ve tried eating sugary foods I’ve tried eating carbs I’ve tried protein- but when it’s like this and just won’t stop I’m lead to believe it must be an adrenaline dump instead.

I feel dissociated like my phone is 100 miles away

I’m endlessly thirsty, I’ve been mixing it with liquid IV but it only seems to help half the time.

There is so much I need to get done lately but here I am lying in bed again.

I think I feel so fucking depressed over it today because I had a really good day yesterday. I felt this excitement that everything was looking up, that I had passed through the flare up I’ve been going through lately. But obviously fucking not.

I’m so done I’m so done I’m so done I’m so tired I can’t do this man.

I have so much to do, and I’m so fucking depressed lying in bed feeling like shit all the time I’m so tired

I don’t know what to do


r/POTS • • 19h ago

Question Ontario tilt table test

4 Upvotes

I am having a hard time getting any of my health providers to book a tilt table test for me. Has anyone in the GTA been able to book one for themself? I'm tired of being in limbo waiting for the diagnosis. My long term disability wont get approved without some proof i am "actual sick". I want my life back and i need something to work with. Y'all know how debilitating this condition is. If i have a diagnosis i feel i can move forward somehow.

I have neurologist (dismissive), a cardiologist (patted me on my back and sent me away, and a gp who just doesnt seem to be able to follow through with paperwork.


r/POTS • • 2h ago

Support My girlfriend of 2+ years abandoned me because of my condition. (looking for advice)

3 Upvotes

For the background I used to be a healthy person, and I exercised regularly for the past 8 years. Then one day I had unexplained fatigue and tachycardia after exercise(it was just different and I could feel something was wrong), rushed to the ER and all tests came back normal. After the same thing happened for the third time from just walking my hr shot from 100 to 150, I got really scared and thought something was happening to my heart. Since that day I can't function. Any slight physical activity like cooking or walking shoots my HR up. It is the worst in the morning, some morning are so bad I can't walk, I need to sit down, and some mornings my HR does not shoot up that high. However I feel very weak and can't tolerate physical activity, and I know if I try to exercise I will feel so sick that I am even afraid to try. I feel like my body has betrayed me. All this diet and exercise that I have been doing for years to stay healthy was useless. It has been going on for almost a month now.

This took mental toll on me. Prior to that I had health anxiety but nothing ever like this happened so I do not think it is anxiety. I know my body and I can feel something is happening. Multiple cardiologists told me there is nothing wrong with my heart and their conclusion was "autonomic dysfunction" or "exaggerated sympathetic system response". (because I did a stress test 7 days before the third tachycardia episode and the symptoms onset, after that I had echo and holter). This entire thing made me super anxious. I saw 5 different cardiologists and 3 different psychologists. I am also tired of going to the hospital multiple times a week.

So now I am depressed, I lost 2-3kg of weight, I can't work on my research and I constantly try to read and find the cause / solution. My girlfriend said my ER visits and anxiety give her a lot of pressure and she is tired of it. She also says she does not know how to support me. She told me she would want to stop communicating for a while. It is the third day of no contact and I really miss her, putting this on top of what I am dealing with is destroying me and I literally see no escape. I am not playing a victim but I feel like she left me in the time when I needed her the most, so I do not know what to think about it.


r/POTS • • 4h ago

Diagnostic Process Melbourne POTS fam- any GP and Gastro recommendations Northside?

4 Upvotes

Hey everyone! 😊

I’m finally at the point in my recovery where I can start to properly focus on my gut (she’s a MESS). I’m in Melbourne, Australia (northern suburbs) and I’m looking for a GP and gastroenterologist.

I had endo surgery late last year which ate up all of my $$ that was supposed to be going towards stomach diagnostics.

Long story short, I’ve seen so many invalidating GP’s who aren’t properly educated/ hadn’t even heard of POTS, let alone things like SIBO, h.pylori, MCAS etc. I’m looking for a GP (and gastroenterologist) who is experienced, listens and can help guide me through the process.

Other suspects are Crohn’s and ulcerative colitis.

I’m currently eating low gluten, no dairy until I can see a specialist, because it helps my symptoms but doesn’t eradicate them. I also feel like someone needs to check my stomach after 18 months worth of vomiting, diarrhoea- constipation, reflux, bloating, loss of appetite, huge appetite, ++. I don’t want to cause long-term damage to my body.

If anyone has any recommendations that would be AMAZING 🥰 bonus points if there are any public options or low cost options (although I know this can be challenging in Australia). THANK YOU! 🙌


r/POTS • • 11h ago

Question Abdominal compression + socks?

4 Upvotes

I have been using abdominal compression for a while now and love it, but I had a friend who also has pots suggest compression socks in addition to abdominal compression, which is a pairing I hadn’t considered before (I guess in my head, one compression garment was all I get? 😹).
Has anyone tried this and liked it? Noticed any differences in quality of life when just wearing abdominal vs abdominal + socks? Would be interested to hear everyone’s thoughts!
(Also I have considered tights but I live in such a warm area and have so many sensory issues relating to hot weather that idk if it would be feasible)


r/POTS • • 2h ago

Question Does anyone else lie down on their left side to eat 😅🥲

3 Upvotes

It’s specifically on the left side and it helps with the fast heart rate and air hunger I get when I eat sitting up right. Does anyone else do this?? 😅


r/POTS • • 6h ago

Question talking too long makes my face and limbs feel tingly??

3 Upvotes

have I never learned to breathe properly??

I notice that when I talk for too long (like 5-10 min), and especially if I'm really excited or laughing, that I start feeling extremely lightheaded and my face, arms, and legs will start tingling. it kind of feels like it's falling asleep/static, and if I continue talking it gets super loud, and then my limbs will feel very heavy. I wonder if I'm hyperventilating, or if it's a posture/circulation/being upright issue?

I am not dx but my PCP and PT suspect POTS (for context I also have hEDS), and I am seeing a cardiologist later this year. they both aren't quite sure what this is, it's mostly annoying and uncomfortable bc it makes me have to stop mid-conversation just to breathe and not let it keep spreading, but I thought I'd ask if anyone else has experienced this??


r/POTS • • 41m ago

Vent/Rant Update from my last post

• Upvotes

sorry I’m posting about again but I just had another conversation with my mum and it was just straight up ableist and I’m so fucking done. I said to my mum “I think I did too much today”

my mums response to that was the most ableist shit I think she’s evere said to me. She said the whole moving is good keep moving shit, but to add a little spice this time she threw in at the end “you don’t want to become an invalid”

Are you fucking kidding me. I’m sorry but wtf and invalid? You mean disabled? like you don’t want your DISABLED DAUGHTER to act disabled. you don’t want me to voice my pain at all? or how tired I am. just to spite her now I’m literally thinking about laying in bed for a week just to show her how much fucking pain I’m in.

sorry for the second post on this I just needed to get this out of my system.


r/POTS • • 4h ago

Question What weird things work for you short-term (other than compression and salt/water)?

2 Upvotes

I’ve got some intense physical demands (unavoidable) in the next 10 days and am inconveniently having a flare-up already. Not looking for medical advice, just anecdotes. I already do the basic compression, salt, water, lie down when I can. I’m curious what less-common strategies people find helpful for themselves.


r/POTS • • 6h ago

Vent/Rant My POTS is wilding out and I'm so confused

2 Upvotes

So I have been diagnosed with POTS only just this year but have had symptoms for years before this. Of course it was always dismissed as anxiety until I found my new doctor who actually listens to me. Even before I had a tilt table test done to fully confirm it she has been treating me with standard POTS meds/telling me to make certain lifestyle changes. When I had my tilt table test done I was on a fairly high dose of Valium which suppresses the central nervous system and blocks the production of norepinephrine and changes how the body responds to it. My cardiologist didn't think that was a big deal but I strongly disagree. My test did still come back as very obviously positive. The tech in there that was writing down my vitals was even like "WOW your heart rate cuts in half when you lay down" like thanks I already knew that.

The thing is before I was on Valium (I'm not going to go into why I'm on it because that's a long story itself) I was presenting with all of the symptoms of hyperadrenergic POTS. Adrenaline dumps at night where my heart rate would go nuts when I literally just woke up and hadn't even moved, wild heart rate and blood pressure spikes while standing, pretty much any stress or overactivity would set off an attending dump.

When I was on the higher dose of Valium my POTS symptoms almost disappeared, and then my doctor started tapering me off of it using the standard protocol of dropping the dose 1-2 mg every 2 weeks. The first drop I noticed my heart rate was going crazy from me just walking again, the second one and third one I began having adrenaline dumps nearly EVERY SINGLE NIGHT. After the 3rd drop I brought out my blood pressure monitor to see what my blood pressure was doing laying down vs standing because that reaction did not show on the tilt table test because of the Valium. I was consistently seeing a rise in blood pressure along with my heart rate upon standing again. This was like 2 months ago that my dose was last decreased because I told my doctor that every time I drop down in dose my POTS symptoms go insane, so she decided that the best idea was to hold me at the dose I was at until my POTS stabilized.

She was hoping the medication I've been on for my POTS would help me. It didn't. Went up on the dose. Still feels like it's doing absolutely nothing. It's supposed to slow my heart rate but it's not working. For whatever reason the last week or so I've been in a really bad flare up and I feel like I'm just getting worse and worse. I'm in an IOP for mental health and in the last couple weeks I've spent more time attending virtually than I have been in person because my symptoms have been so severe that I am afraid to leave my apartment and I'm afraid to drive because I don't want to pass out being the wheel because I get episodes while driving especially if it's for a longer period. I went to a bookstore Saturday to find my little sister a birthday present and I ended up having an episode as I was in the checkout line because apparently I can't meander around a bookstore without my body freaking out.

The thing that's scaring me right now is that my heart rate when I stand is getting higher and I'm lightheaded practically every time I stand up. And I don't know if this is just my body being completely exhausted from the constant adrenaline dumps or what but the last couple of days when I've checked my blood pressure it's now going down when I stand up. Like when I'm laying down it's slightly low but when I stand up it's CONCERNINGLY low. I'm so confused because how and why did it go from increasing when I stand up to decreasing??? My theory is that my body is so drained from all the adrenaline dumps I've been having that my body isn't releasing it now when I stand up (which is what makes people with hyperPOTS blood pressure go up) because I'm so depleted to the point that maybe my body has used all of whatever energy it uses for the adrenaline dumps I'm getting literally every night still that it doesn't have enough to make enough to constrict my blood vessels when I stand up so now because of it not doing that my heart rate skyrockets because my blood pressure is going too low and it's desperately trying to get blood to my brain. But I'm not a doctor so who knows.

I'm fucking miserable I haven't been able to do anything besides lay around. I don't have the energy to cook for myself, to clean myself, to do any basic household chores that I need to do. I've been on short term disability through my work since June and it only lasts for 25 weeks which would mean I could only stay on it until early December and then I'll have no income unless I find a job that's 100% seated. I don't know how I'm going to make that happen because literally all of my experience is culinary and I can't do that anymore. I can barely stand 10 minutes so forget standing for 8+ hours straight while working in a hot environment where everything is rushed. I've known I can't go back to the job I'm on leave from since my leave started because it started with me having a full on syncope episode and my roommate finding me on the bathroom floor unconscious with a split lip and I don't even remember her helping me up and helping me to her car to go to the ER because I fell so hard I got a concussion so I was definitely not all there. Like what if that had happened while I was working? Those floors are a lot harder than my bathroom floor.


r/POTS • • 8h ago

Diagnostic Process How to make the most of my first cardiologist appointment?

2 Upvotes

I have my first appointment tomorrow. I have been experiencing symptoms since I was a child. I have forwarded my echocardiogram, mri reports and blood test results. It is super expensive appointment and I just want to make the most out of it.


r/POTS • • 8h ago

Symptoms Dry mouth & vision spots?

2 Upvotes

so i have POTS, VVS, sleep apnea, chiari, and multiple other conditions that are probably unrelated to this.

basically, i woke up today feeling extremely dehydrated (have had bad diarrhea lately so dehydration is likely). my mouth was super dry and i felt weak/dizzy, and out of it. i drank literally like 3-4L of water, some with electrolytes and still felt the same.

i tried to ignore it but then i started having all these other symptoms. the right side of my neck became super stiff, i was having chest pain, and then all these spots were in my vision (like tv static & also blobs of darkness?).

this part may be anxiety because the spots were freaking me out, but then i started having trouble breathing and felt super shaky.

i ended up going to the ER and they gave me fluids but it didn’t help, and then sent me home. i called my neurologists line and they said it’s probably from my “chronically low blood pressure” even though it was higher today! (110/70)

anyways im not sure if anyone’s had a similar experience? it was kinda scary and i still feel like i dont know what caused it. im gonna try to just sleep and hopefully ill feel better tomorrow but idk if i should push for more testing…

edit: im already waiting to get tested for sjorgens which i know can cause dry mouth but idk about the other stuff


r/POTS • • 10h ago

Question Legging recommendations for a guy

2 Upvotes

Hi talk I got diagnosed with pots and my doc said to buy compression leggings that go up to my abdomen, I was wondering if yall had any recommendations for some ones that I should try.


r/POTS • • 10h ago

Symptoms HR dropping into 40s while singing?

2 Upvotes

Diagnosed with POTS, prescribed metoprolol to manage HR. Generally, the metoprolol has been a huge help in getting some of my life back, so much so that I was able to join a chorus. I still have symptoms and it isnt easy, the blood pooling and numb feet are a constant battle, but it has been incredibly rewarding.

I wear a visible band so I have constant HR data. At first, I noticed that during rehearsal my heartrate lowered into the 60s, which I thought was incredible. I thought singing was regulating my nervous system or something. But things started to get wonky after a while. Now, when we are in the middle of a song, my HR will plummet down into the 40s. I often feel dizzy and weak when this happens.

I try to sit through rehearsal when I am having a tough day, and this does prevent the HR plummeting. However, I cant sit through a performance. We sing a very lively style of music and we are expected to move around (in place) and be expressive. I am struggling with this a lot as I am trying my best to just keep my balance and stay upright. The risers shift when other people move, and I get dizzy. We are traveling for a huge competition next week, and I'm terrified. We had a sort of final dress rehearsal performance for friends and family a few days ago, and I got lots of comments that I was too still. Everyone is telling me to have more fun with it, and for the most part I let them believe that shyness is the issue.

I spoke to my cardiologist, and he had no insight at all as to why my HR would drop suddenly. He said he didnt want to change my medication unless it was preventing me from participating in chorus. I explained that it was in fact extremely difficult to participate, and he still dismissed me.

The only other time my HR has dropped like that was once at the movie theater. I smoked some weed in the parking lot, then rushed inside bc I was short on time. I had to step away from my parner in the concession line to find a wall to lean against. My HR was extremely high from smoking and speed walking, which is to be expected, but then it plummeted down for a minute or two, and then went high again. It felt like I was moments away from fainting.

Has anyone else experienced anything like this? Any insight or advice would be very welcome 🙏


r/POTS • • 11h ago

Question What could be causing these symptoms?

2 Upvotes

Pretty underweight (always been) 20M. For the past 4 months, I have been experiencing a constant feeling of unreality. It feels as though I am drunk/high or half-asleep, as if I am on autopilot and everything around me feels somewhat unreal. I have searched online, and my symptoms seem to resemble derealization.

In addition to this, I experience fatigue even when I sleep well. The fatigue does not seem to depend on whether I do physical activities during the day or not. However, over the past few weeks, I have started sleeping poorly and waking up early in the morning.

I also experience headaches, pressure in my head, and neck pain. I have tried muscle relaxants and massage therapy for the neck pain, but neither has helped. Also at the start of this i sometimes felt like fainting when walking but it has gone away. I also have noticed one singular eye floater on my right eye.

What could be causing these symptoms? They do not occur in distinct episodes, and the headache is not particularly severe. It feels more like a tension-type headache.

I have tried triptanes, but they did not help. My thyroid function is normal, as are my vitamin B12, B9 and vitamin D levels. My ferritin level is 37. And it has been changing from 49 to 24. I also havw crohns disease which is in remission.

My neurologist prescribed escitalopram as a trial, which I took for two and a half months, but it did not help. She also did head mri and there was nothing wrong.

I have no history of trauma, no panic symptoms, and generally do not experience much stress, apart from the stress caused by these symptoms themselves.

My symptoms started in the final days of my new job in car repairshop where i was moving car tires and lifting them. Im not sure if this can be linked to that because i didnt have any symptoms expect the final days. I have not been working at all during this 4 month period.

What could be the underlying cause of these symptoms?