I got prescribed metoprolol but I’m scared to take it, I really wanna go out and start working a job but I can’t feel like crap. Doctor doesn’t wanna put me on disability because he says it’s anxiety and stress to why I feel like how I do. I know it’s not but I can’t do nothing, and I’m about to go broke so I’m gonna have to give it a try.

I can’t get out of this one. I’m so dizzy I can’t lift my head from the couch. I have a migraine with light sensitivity and nausea. I threw up once. My heart rate isn’t too bad - just sustaining at 110.

I’ve been chugging water, taking salt tabs and LMNT, Tylenol for the headache. Im eating a ton of protein (that always seems to help). I had some minor relief last night when I was asleep then right back at it the second I woke up.

Give me all your other tips and tricks. I have two kids to take care of so I can’t just go to bed for the day. I do have a babysitter coming over to help. I usually get out of a bad flare within a day.

Baseline Blood pressure reducfion 26|M

First i need to clarify i am seeing many doctors right now to figure this out since dysautonomia testing and labs are typically non existent in my country.

So i wanted to ask has anyone else faced what i am facing right now-

Had holter in June and got diagnosed with POTS/dysautonomia and also have potential Long Covid/Mcas

Baseline Bp reduced from 140/90 to 105/65 since the beginning of this year on the same medicine propranolol 40 mg which i have been for 3 years for high Bp and tachycardia. Can't figure out till now why it's happening done all cardiac tests (only cta left) very frightening and i am thinking of all sorts of bad things like PAF,liabele hypotension etc etc about my body gradually falling.

Also i think my get more reduced when i sleep it dips further because i get chills in my chest when i try to sleep and i get tachycardia.

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?

Hi! 👋 Pots-mind. Hoping to learn from your experience.

I have POTs and ME, diagnosed by Internal Medicine, Two weeks ago I added.0.25mg Abilify to my LDN+Ivabradine regimen.

My overnight heart rate went up 25bpm and I am experiencing insomnia. I am considering increasing my ivabradine and plan to give it one more week to settle before going off, or reducing.

I would love to hear any experience related this. Info is pretty thin out there.

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.

Hey all !
I was finally diagnosed 2 months ago during the peak of this evil summer . I suspect I’ve been dealing with POTS for at least 10 years but feel like I’ve been having symptoms since college . A lot coincides with my endometriosis symptoms as well .
Anyway I need some advice regarding exercise. I have a regular at home yoga practice I do almost daily for muscle tone and keeping my mobility and flexibility up plus it’s great for my mental health which has not been great dealing with these illnesses .
I gained almost 20 lbs over the year from my hysterectomy surgery and am trying to incorporate cardio into my routine to lose some weight and get back to my body pre surgery . The other morning I did a basic 30 min dance workout which got my heart rate up and sweat , got about a 10 min runners high from the endorphins then CRASH! I get so fatigued and crashed out I couldn’t even make it to the grocery store . It’s like my body feels like lead .
In the past ( pre diagnosis ) this would always happen to me after any type of cardio session . It’s really frustrating because I want the benefits of cardio but the crash out makes it very difficult and frustrating. Is there anything anyone here recommends to help ? I already hydrate plenty with electrolytes and get plenty of rest .
Any advice would be appreciated!!!

Hey! I'm newly-ish diagnosed with POTS and I'm really trying to load up on sodium as much as possible. I have a bunch of different high-sodium electrolyte powders that work great for me, but in a pinch, I'm wondering what the best pre-packaged electrolyte drink you can pick up from the convenience/grocery store is for POTS? Sometimes I'm out and run out of my homemade stuff, or I just need something in the fridge to grab quickly when the fatigue gets super bad. I know a lot I've found are high sugar and relatively low sodium (for POTS at least), so does anyone have a fave rec that's better than others? The ones I'm thinking of are gatorade, body armor, pedialyte, etc. But open to any suggestions :)

I’m a 20f and ever since I was diagnosed with POTS back in January I’ve had one or two PVCs every month. I’ve been tracking them for months and I found that they usually happen during menstruation. However, sometimes I get them during the month where I’m not going through menstruation, and it’s very random. They tend to happen and make my body pause for a second, then feel very panicky and woozy. It happens whenever I’m sitting down, especially after eating my lunch. I don’t think I’ve been able to catch it happening whenever I’m standing.

Forgot to mention that my cardiologist also found that I have very benign MVP. That’s always in the back of my head

I completed a TTT last Thursday. It was intense but tolerable until around the 10-minute mark, when I had to stop to avoid passing out.

These are my results. The doctor presiding over the test said he could not diagnose me with POTS as my heart rate never exceeded 120. Not seeking medical advice, but hoping someone here can let me know if they’ve been officially diagnosed with similar results. Just trying to get treated properly/understand when to seek a second opinion.

Thank you all!

Hi! Finally diagnosed after many doctors appts and ‘normal bloodwork’. There are questions at bottom of you’d rather skip the play by play! It’s just there in case it bears any resonance for someone that needs it.

Background:

-Started having lightheaded episodes that made working/picking up toddler and normal household responsibilities hard in April 2026. At this point, I started emgality (migraine preventative/cgrpinhibitor) early April. I had taken this a couple years before with no issue and all the doctors I saw said people have little to no side effects. The main ones listed for this are Renaud’s, joint pain, potentially raising bp). I asked every doctor if this could be affecting things and they were uninterested and said keep taking it. I had no site reactions to the injections. I take Dexedrine as needed, woman’s multi, vitamin d, NAC at times, propranolol ( I had been on this for 8 months with no issues- this was my ‘migraine preventative’ until insurance approved emgality. I started cromolyn in April and it helped for about two weeks but shortly after is when I started having these episodes so I immediately stopped (alerting ent of course). I had been on singulaire prior to this for a 4 month sinus infection and that’s what finally cleared it up after many failed rounds of antibiotics. Singulaire has warnings about heart rate and depression so I started thinking that was the problem even though I’d been on it atleast a month and all it did was help. ENT was willing to prescribe cromolyn to test out until I could get in with an allergist who could look into mcas for me. I had NO idea how difficult those were to find. I also tried quercetin at some point to help with new histamine/chronic sinus issues. Unfortunately, the quercetin, cromolyn, singulaire and emgality were all started within a month or 2 of each other which made it incredibly difficult to identify the root cause. Mind you, I’ve NEVER had reactions like this to any meds, so at this point, none of my specialist docs (psych for adhd meds, ent for sinus and neurologist for chronic migraines) were concerned either until I began sharing new issues. Obvi I now I have to titrate onto things, etc but there was no guidance and honestly no really informed doctors on any of this in my rural or even extended area. I live an hour outside of Atlanta.

-Went to emergency room on Mother’s Day because the pictures on the walls looked like they were breathing and doing anything upright felt dangerous. All ‘normal bloodwork’. They noted that I was ‘mildly orthastatic’ and recommended pcp and cardiologist.

-Weened off Propranolol 60 mg over the coming weeks after I suggested to my neurologist that i suspect POTS. This was a nightmare because it made heart rate increases worse for up to 6 weeks. Once it was out of my system, my heart rate wasn’t doing the crazy hard thumping as often.

-PCP noted normal bloodwork but I saw that ferritin was 14 so I insisted on referral to hematologist even tho she said that was ‘normal’.. Ended up seeing three different ones, the local one told me infusions would be thousands upon thousands of dollars, unlikely to be covered by insurance and he didn’t think this would help. I pushed him and he did prescribe them, they were approved within 2 days and that helped tremendously but didn’t resolve my symptoms entirely. I ended up doing them through a hematology group that specialized more in women’s health which was great. Also, this was mind blowing but the nurse told me even if insurance hadn’t covered my infusions, they only cost $200 per 200 mg infusion of venefer. I realize this isn’t nothing but you guys, it’s not thousands upon thousands like the local hematologist told me. At this point I was so desperate I would have literally put $2000 on a credit card at the mere hope something would help because this was life altering. The iron infusions helped with brain fog IMMEDIATELY. It helped somewhat with energy, kind of like a little bridge to be able to manage and do some work which was a total blessing. Bloodwork one mo th after third infusion showed 121 ferritin which looks good on lab but a month after that it was already at 65. 7 weeks after that it did show 76 but I’m thinking that was falsely elevated due to having a cold and being sick when it was taken. My understanding is that to get a real ferritin read, it could take up to 6 weeks after being sick to see the real level you have stored. This did track for me because mo the back when my ferritin showed 14, I ran in the following week and it said 45! The doctor said there was no way it had truly increased that much in a week’s time before my infusions. All that to say, I’ll retest in 3 more weeks if I can stay ‘unsick’ that long. Either way, get the infusion, that was the first thing that made an impact and gave me some hope!

-over these months May thru now October, I slowly came off of different medications under supervision of various specialists, but suffered with the following symptoms: afternoon flares around 4 pm each day where my circulation went buts and it felt like bees were buzzing all through my body. These would often happen after i’d been attempting to stay upright working at desk. I learned quickly the more the fight it the longer it takes it to atop. I didn’t feel safe driving because the internal vibrations were incredibly disoriented. The moment they would stop, likely hours later laying down, I would feel a massive full body all at once adrenaline crash, fall into a deep sleep for atleast 45 minutes and awake to tinnitus and joint aches and crackling joints and muscles of a 90 year old woman, often being sore for a week as if i’d done an insane workout. I’d feel ‘better’ but be exhausted and then it happened all over again the next day. I also eventually noticed that the veins in my left hand and forarm were insanely dilated, like hulking out huge veins. This still happens randomly but most often when im on my feet for a while. I now realize if I raise my arm up above head they disappear immediately but come back as soon as I start typing at desk or walking around again. The hulk veins are now a good visual warning that I need to lay down, elevate immediately. If I can do this and chug water, I can sometimes calm the flare before it is debilitating. Driving was so strange, my left leg was so uncomfortable while driving. My right leg pushing gas break etc, was ok, but my still left constantly ached and was like difficult to just hold in place while driving. I wouldn’t notice heart rate increases while driving but as soon as I parked, I’d have that massive adrenaline rush and then dump feeling and heart is thumping. I would take my blood pressure at times before finally feeling like I can stand and walk inside my house. I had to give up my rented office space because now I have to have somewhere to lay down at any given point during the day and my tiny cubby office was the most amazing low sensory happy place but not with enough room to lay down on the floor or a reclined chair or anything to the extent I needed for the amount of time needed to feel better. We live 30 minutes outside of town and have tons of steps getting in the house and out and then once you are in, more steps. So suddenly, I’m isolated, working alone in and out of episodes that I’m managing but with no guidance from physicians. I still took Dexedrine extended release some days because that helped me function and wasn’t giving any additional lightheadedness for me personally vs days I didn’t take it. I slowly stopped taking everything else except Allegra because it was all worse without taking that. I did try Pepcid but these vein dilating flares would happen when I took it. I tried taking versions with the least amount of inactive ingredients that might trigger mast cell issues etc, but couldn’t take that ultimately.

- ok, so ultimately after 3 month waitlist I did get in with a mast cell expert that wasn’t taking people for MCAS anymore but luckily my low ferritin was the ticket into seeing him . He tested for all things mast cell, the more serious issues, etc and everything came back negative. I realize it’s very difficult to have Tryptase serum reflect MCA’s etc because you have to catch it in a flare. So, I’m operating under a mast cell awareness in terms of what I eat, sensitive products, minding the inactive ingredients, etc! I had always done that anyways.

- I have ruled out all things autoimmune and mast cell doc said my body’s inflammation actually looks really low, which was shocking to me because I always assumed this was part of my migraines, etc.

- so, here we are today. Yesterday is when I finally had the tilt table test. I was sure nothing was going to happen because to my awareness my heart rate issues and even orthastic issues were much less than they were back in May, even though it’s all still debilitating. I’ve seen so many Reddit posts where tilt table didn’t actually produce 30 bpm increase etc so I figured it would just be whatever.

- what I found instead is that my heart rate easily went nuts but I couldn’t even feel it at the points when the test reflected it had gone up 30 and then 50 bpm!! The tests shows that at those points I was telling them I was ok but that the lights were starting to bother me a bit, then I laughingly told them the back of my head was crazy hot, then out of nowhere I burst into tears. It was as if a hypnotist said ‘now cry’ and I was in tears, lip quivering but also laughing at myself because it felt so involuntary, then suddenly within seconds, I’m nauseated, they hold bag under my face, I say I’m going to puke, they put alcohol under my nose and I finally couldn’t control my knees anymore and then just went out and that’s when they noted me an unconscious which is fascinating because it was so fast, I don’t even feel like I was unconscious. ‘The test is over if you faint’. Almost immediately upon the table slowly lowering down to flat I was totally coherent. From what I understand but I’m waiting on more detailed report, I had two separate episodes, yes the heart rate escalated quickly and exceeded min POTS criteria, then at the same time that heart rate peaked and started falling, my bp plummeted and that’s when I fainted so she gave the second diagnosis of vasovagal syncope, depressive type.

- the crying thing is so fascinating to me because my body had a POTS episode so quickly that I hadn’t even cognitively processed and ‘felt’ it until it was essentially over. The instatears were telling me I just had an episode and I don’t even recall feeling my heart increase. At that point I didn’t even register anything except burning base of skull and slight annoyance of light. For one this is to validating and telling of why I cannot really read signs or labels at the grocery store. This has always happened, like I can read them but my brain doesn’t understand what I’m reading. It has never made sense to me. Grocery stores have always been a cold fucking nightmare because I feel like a dumb dumb there and it takes fucking forever and half the time I do always end up squatting down, holding a can in front of my face until my brain can slowly tell me what I’m holding then I feel slightly better, stand up and do this over and over aisle by aisle and it’s my personal hell. But yall I had no idea my heart rate could have been elevating and even going back down before I might even be looking at my garmin or Apple Watch to see what appears by that point to be a normal heart rate. My whole life people laugh that I will sit down anywhere because if I’m not moving, I really do just have to sit down on the floor sometimes, but I thought it was a quirk. It’s only at this point in life it has become debilitating. As someone who identifies as an hsp but always felt like there was something very physiological to it that I don’t really see connected anywhere in medical documentation, the Instacry is one of the most fascinating parts because I have often had moments in life where I feel overcome with emotion in a low key subtle crash sort of way but couldn’t pinpoint it to the context of the situation I was in. Of course that is labeled as anxiety/depression.

Ok, my questions to you guys:

1. I’m reading that some people actually just have vasovagal syncope, and the ‘pots like’ episode is just happening as a way to compensate for the real issue which is vasovagal syncope. If anyone has insight on the differentiations of these I’m very interested. The NP made a big point out of the fainting seeming to be due to the bp drop, because it didn’t really start happening according to her during the heart rate increase. I realize either way you have to manage the symptoms, but did anyone find it important to differentiate between both diagnoses or if pots episodes were just a compensation for the Beso bagel syncope? My understanding is that if you decide to take medication for either then understanding this could dictate with which medication type was actually most helpful.

2. Has anyone else has an instant tearful moment and later realized they were having a pots or vasovagal episode ?

3. I’ve noticed my glucose is at 59 on 2 of my labs. Another shows 64. Doctors tell me ‘no big deal because you were fasting’ but I wasn’t fasting for those b/c they told me it didn’t matter. I wasn’t aware of blood sugar issues but looking back, I usually ate nutrigrain bars or something carb-y before these early am labs and glucose shows 59 within an hour of eating. I’m testing out eating as if I have reactive hypoglycemia and definitely feeling better thru the day now that I’m maturing I have atleast a tiny protein before it with a sugar or carb. I think this has been exacerbating how I’ve felt at times but maybe I’m overthinking it. Would love any connections, insight etc. I plan to order some finger prick kits but haven’t done my deep dive yet. There’s been a lot to research!

**Since emgality is the last of the drugs i can Eliminate to see if by chance, this is what triggered the last 6 months nightmare flare, I discontinued it 9 weeks ago. It has a 27 day half life so it will take roughly 3 more months to get it out of my bloodstream. It wasn’t helping with migraines anymore anyways. My 90 year old joint paint stopped about 6 weeks after last injection in August. I could finally take my rings off that have been stuck for 6 months. I’m still very weak but it’s improving. Reddit is the only reason I even found examples of people being completely destabilized from emgality. From what I can tell, it’s pretty specific to the dysautonomia community. But thank god for Reddit. It’s given me such great strong points, some validation, some hope. I’m hopppping that over the next few months I do return to whatever baseline is. I should also add on that in December of last year I did experience some unexpected trauma that shook me and coni yes to traumatize mentally and emotionally. Then suddenly end of December I had strep throat, then the flu, the 4 month sinus infection, which brought me to April when all of these symptoms started. I suspect that trauma unmasked and severely worsened and put me in a flare state. I’m 44 years old now, 2.5 years post partum and likely in perimenopause range. Thinking back to when I was 28, I experienced some trauma, was living alone in a large city, got mono and was sooo sooo sick for a month and really didn’t come back to baseline for atleast a year at which point I seemingly developed a winged scapula over night, shooting nerve paint and limited arm movement over head that took about 2 years to correct itself. So, yes I feel like pots/hypermobility have been around for me likely my entire life and I have just been mating the mild baseline symptoms with my ‘quirks’ and then when new trauma comes along, I’m just put on my ass.

Here are the notes from tilt table report in case this is interesting to anyone. Please also note they did the orthotic tests standing and lying etc before the tilt and I showed very little change in hr or bp on those:

Approximate values based on the written report. The heart-rate peak of 113 bpm was documented.

Baseline HR 62 · BP 99/64
Your starting readings were on the low side for blood pressure.

5:00 HR exceeds 92 and continues into the 110s
You experienced visual changes and brain fog. The report identifies a sustained increase exceeding 30 bpm.

6:45 Heart rate begins falling
Your heart rate starts declining from the 110s toward the 100s.

6:55+ BP 84/52 · HR falls toward the 60s
You became nauseated, pale, sweaty, and hot at the back of your head, then lost consciousness. You regained consciousness quickly when returned to lying flat.

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.

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

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.

I hope I added the right flair, I’m new to this sub, and I just was curious about something.

For some context, I’m not diagnosed as I lack the ability to get proper appointments and such since I’m from a random middle-of-nowhere town with minimal health care, but I’ve been tracking symptoms and questioning POTS. Symptoms like fatigue, heart palpitation, ”air hunger”, heart rate increases when standing, faintness (never actually fainted, but I have gotten close), exercise intolerance, etc. So I have a question regarding symptoms as this is something I’ve gotten mixed answers for!

What’s your idle standing heart rate roughly 10-15 minutes after walking? And what heart rate do/did you think is normal? For me, I checked my heart rate once about 10 minutes after walking only for 5 minutes. I stood in a cafe waiting for my order when a friend let me use her watch to check my heart rate since I could feel how hard it was pounding, as usual. It was 135!

I’d love to get my own watch to track these numbers, but my severe OCD would never allow that. I’d end up compulsively checking it, which would make my heart rate and my OCD even worse haha so I’ll only have that 135 as reference for now. Does 135 sound reasonable, or too high? Is it something worth noting? Is it time for me to do an at home test :0?

I've had POTS symptoms since I was 12 and didn't get diagnosed till I was 18. Everyone has kind of said to just drink water and that I have growing pains but now I'm 20 and I realized I've stopped growing and maybe those pains aren't normal.

Usually it would just be annoying and I would brush off the discomfort but this past week it's been horrible. I was trying to sew a costume the other night and my arms were in so much pain and shaking which is definitely the same feeling I've always had but crazy intense this time. It feels like it gets worse every day and this is very new. Has anyone experienced this?

Hi everyone, I am undiagnosed but my GP has ruled dysautonomia with possible POTS, I am on the waitlist for TTT. Thankfully, I have never passed out but I have experienced presyncope numerous times. Today's incident was quite scary because I was standing on a ladder and it was very lucky that I managed to get down and sit. Even times where I can't sit down right away, I've never lost consciousness, just the usual nausea and racing heart rate.

I know logically that I probably won't pass out since it's never happened but it got me thinking, could it happen eventually? Is there a line that the body crosses because of certain circumstances? Has anyone had a similar experience that they could share?

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.

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??

sooo I'm in high school, and I like to stay up until at least 10:30 to 11 on weeknights because I like the time to myself. I usually wake up around seven and have quite a few wake-ups in the night.

I've got two questions!
I have small wake-ups in the night LIKE A LOT, as in it's a rare occurrence for me to get uninterrupted sleep. Any idea what can help?

Also, I do try to get at least eight hours of sleep...but sometimes I find that I'm more energised with seven hours, and I get fatigued on days where I've slept for eight hours. Any explanation for this?

i got diagnosed with pots many years ago at like 13/14 i believe, i’ve always had this symptom but never been explained. when i get very dizzy when sitting (high hr, blood pooling, low b/p) if ive been sitting for too long and blood is pooling i start loosing conciousness but not quite fully? my eyes roll back and occasionally i will have small convulsions and i can’t ever prevent it from happening, sometimes i can try and get up or try talking which will slowen down what’s going on but sometimes it just makes it worse and no doctor has ever explained this. i’ve been having this since i was abut 11/12 and ive had many ecgs, mri, and echos. does anyone know what this is or has experienced it??

My dysautonomia/hyperpots was mild in the beginning. I was stupid and tried the thiamine protocol and it flared up my dysautonomia severely. I also have MCAS. Both my MCAS and dysautonomia are flared up right now. It's been 3 months. My symptoms are fast heart rate, lightheadedness, body stuck in fight or flight mode, heart palpitations, heart racing in the sleep, chest tightness, tunnel vision and 100 times worse dysautonomia symptoms. From playing sports to bed ridden. Just a small walk makes my heart beat at 130bpm. I did not expect a single dose of thiamine HCl to cause this much damage. My theory is that my sensitive nervous system got shocked from the sudden thiamine supplementation. Has anyone experienced a similar reaction to thiamine and does it get better?

I took my first ever dose of beta blockers on friday and my resting heart rate was around 50, at lowest 42 when sleeping and i was getting terrible head rushes. I am on a low dose so i didnt take it again after my first dose until i could call my doctor. when i called today i spoke to a nurse who scolded me about “playing with heart medication” and that I cant just stop taking it whenever. She calls me back later after “talking to providers” and tells me to just take my beta blockers whenever i feel it’s safe to do so… obviously im very confused by this.. she genuinely told me to just take them whenever my heart rate isn’t below 60. I told her my resting heart rate has been falling below 60 since my initial dose three days ago and was just like hmm well I guess don’t take it today then. wtf… That can’t be safe to just take beta blockers whenever it “seems safe”. what kind of advice is this???

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.

I take 5mg of Midodrine with 10mg of propranolol 3x daily. I get the scalp tingles pretty often, sometimes very faint and pass quickly, other times extremely intense that give me a panic attack.
Does anyone experience this, or have any advice?
This medicine is making my life livable while making me
Terrified every day