Resources

I fear fainting so much that I don’t leave my house even though I have never fainted. It’s on my mind 24/7. My dysautonomia has gotten so much worse and now I’m scared that if I do start to do things again I will faint due to deconditioning. My blood pressure gets really high when my heart races. Any positive words?

Anyone have any tips or tricks for increasing heart rate variability? Thanks!

I am not asking for a diagnosis or treatment advice. Doc pretty much told me my options are to bundle up, wear a mask, invest in heat packs, the usual stuff.

I already have to wear winter gloves, a mask, a beanie to cover my ears, and an extra pair of socks just to leave my house when the temp gets below 50°f. It helps for the most part, but my hands and feet still suffer. I can push through the tingling in my feet but my hands HURT. This is mostly about them. They stay stiff, the tingling creeps all the way down to the joints before my palms, and touching them at all will burn for at least an hour even after warming them back up, and I just don't know what else to try and help. I already have issues with nerve pain and dystonia in my hands that interfere with my work enough, I can't spend the first hour of every shift struggling to touch anything. I'm just at a loss, honestly. Does anyone have any products or weird tricks that helped them? Any advice helps. Not that anyone would, but please keep responses civil, I'm really tired of people being rude for no reason

Does anyone have any tips for keeping a steady temperature while sleeping? I have been really struggling lately. Usually what happens is when I lay down, I start to get very cold and have a hard time warming back up. Things will usually steady once I can get warm, but then I can't find the right balance between covers and no covers. Sometimes I wake up just absolutely covered in sweat, and it makes me feel gross and uncomfortable. Also, shortly after waking up, I will suddenly get flushed and extremely warm all over.

I tried a cooling mattress and pillow cover, but they seem to trap heat even worse. I also can't use microfiber sheets because they trap heat - I can only use cotton. I do usually have a fan going as well, but sometimes I am too cold when I first lay down that I have to shut it off, and I usually regret it in the morning.

Please send recs, I just want to be able to sleep without constantly waking up to adjust something 🫠

I’m not slandering doctors but I kind of am. Yes a lot help. But the majority don’t seem to care. I don’t know if this is a Scotland thing but they are so gaslighting, ignorant, highly uninformed and just out right uncaring people.

No matter how much I explain. Articulate what I’m going through explain why certain things don’t help they always know better. Matter a fact and example is I’ve been given duloxetine by a cardiologist for POTS. and I asked a few people who have had experience with this drug on here. All said they didn’t have good experience with it. And I used to be on fluoxetine due to anxiety a few years back and don’t react well with antidepressants.

So I say why haven’t I heard much people with pots on this? And I explained I’m not sure about this tablet. Not in a cheeky tone I was generally concerned. And without explaining what I’m about to put in body was told. “You are not the POTS expert” and “I’m the doctor you are the patient” as if I’m not in control of my body. And would like to know why I’m taking antidepressants that barely anybody agrees with for a non mental issue.

And for the last two days I hadn’t slept for 45 hours and I flared up so bad so phoned NHS 24 for advice. Which is for anybody not in the Uk a phone helpline for medical advice. And was basically told even though I explained I can’t sleep for palpitation gagging struggling to breathe so much. And feeling so unwell. And begging for help. That I need to wake up at the same time and have good sleep hygiene. And that I am not a magic case and my body isn’t any different. And if I wake up at the same time I will be able to sleep.

Even though I can’t sleep for symptoms not because my wake time. And was also told to do stuff in my day. Basically was called lazy for being fatigued and unable to stand for long. I’m so sick of it. I’m not doing this for fun. I’m not doing the for enjoyment or because I’m lazy. I’m suffering and need help. And they never do. I hate doctors so much I’ve been switching for months and there all the same.

That doctor on the phone really really upset me though. Basically said I need to fix my sleep and stop sleeping like an idiot and do something productive and get a life. As if I’m choosing to lose everything in my life.

I've been taking metoprolol 50mg twice daily and need to come off it in preperation for a holter monitor test. I've been struggling with the medical system sending me around to different cardiologists who either don't believe in dysautonomia/POTS or don't believe in diagnosis. I was first told that it's my lifestyle/age/anxiety and that I'll grow out of it. I was put on beta blockers by that same cardiologist who refused to do any testing like the tilt table or holter after they confirmed nothing is physically wrong with my heart. Only now, after over a year of being on them have I gotten a referral from a different specialist for the holter (this cardio doesn't "believe" in the tilt table) but I need to come off my meds to get accurate results.

I'm not even sure I can get a diagnosis out of this as the specialist doesn't like to give out the POTS diagnosis due to it being untreatable and "a diagnosis is for life" - I'm incredibly frustrated.
This cardiologist was going to ask me to go cold turkey until she understood what my dosage actually was and told me it would be fine to split them for 2 days, then alternating between days of nothing and taking less again until stopping. They also asked me to do this roughly 5 days before the holter monitor test. This all seems wrong to me based on everything I've been reading and was wondering if anyone else had experience safely tapering off Metoprolol 50mg twice daily.

I'm autistic and living in Australia without advocacy and fighting for someone to believe my symptoms has been really difficult. I'm also dealing with seeking a hypermobile Ehlers-Danlos syndrome diagnosis.
Honestly any advice is welcome, I'm tired of being medically gaslit and feeling like I have no control or help.

I am in the diagnosis process as I have had pre syncope largely when hiking in hot weather for years. Over the last few years it has increased to other situations and is now at the point I can't stand for long without becoming symptomatic. In these situations it was identified my blood pressure was low. Today I had complete syncope for the first time.

I saw a cardiologist who suspects vasovagal syncope and had a tilt table test. I couldn't finish the test because I freaked out when I couldn't see and hear any more. They said it's not valid unless I fully faint even though I could hear the low bp alarms going off and I was symptomatic with no meds to prompt it.

I'm getting married in a few weeks and I'm stressed about how I'm going to make it through my wedding. Any tips on how to manage?

my tongue will sometimes get really dry and turn white; wondering if this is a normal thing for those with dysautonomia/pots ?

I am having horrific issues at night. It has become unbearable and I do not sleep anymore.

Almost as soon as I get into bed, I get a weird, shaky sensation in chest, like palpitations, internal vibrations, et cetera. Then I close my eyes and the horror starts almost immediately (mind you, I am still very awake, just eyes closed). I get brain shakes. Brain zaps. Brain drops. Electrical currents in head. Vibrations. Feelings, like a black hole is underneath me and it sucked me in. Like i fell 3000 ft into the canyon. When I turn in bed, it feels like i will fall down, I open my eyes and sometimes feel like someone is pushing me around. I sometimes don't know where I am or what is happening. It feels like dying. I get movement and sloshing sensations in brain, shaky and nauseous in chest and body, it is impossible to fall asleep. And so horrific. Also, passes if I open my eyes!

In the last two days my heart rate was higher than usual, around 85 resting. Tonight I woke up after one hour of sleep with a racing heart (around 100), and it is been like this for 8 hours. Nothing that usually helps helped. I also get hot flashes, episodes of shaking. Even when I feel like I calmed down I check my HR and it is 96-100. I never had such a long episode. Can someone please share what might help to bring down my Hr? I am really scared because I am abroad :(

How is it physically possible that in 3 months my dysautonomia got so much worse? I was talking to my grandma who took me in at 16 so she’s like my mother and was saying it blows my mind that in February I moved out to live on my own and start a new chapter but it all got stripped away from me. I still live on my own with my roommate but it makes me so sad. I was also saying that when I think back over the course of this year, I can remember every time I realized I couldn’t do something anymore. I remember mopping at work and being dizzy and hot but blaming it on night shift and being tired, I remember the last time I was able to do my makeup while standing and getting hot and needing to sit down and take breaks so eventually I started doing my makeup in my room instead, I remember when cooking became difficult, I remember when dishes became difficult, etc. I was prescribed Vyvanse in December of 2023 so I didn’t truly accept anything was going on until I was taken off of it in August of this year and realized there in fact was a problem and I think I hurt my body by doing that because I constantly pushed myself thinking I had tachycardia from my Vyvanse.

From August until now the change is crazy. Stairs didn’t bother me until September, if my heart rate got high I just sat down and was good to go after that but now if it gets to 140 I’m stuck in bed, I didn’t think twice about social interactions, fainting was a fear but I didn’t let the fear consume me like I do now where I do absolutely nothing to get my heart rate elevated if I can help it including leaving my house, I knew if I did too much I’d feel flu like symptoms but they were mostly manageable and I’d still go out and do things. I’m not quite sure what’s happened to my body since. I started getting adrenaline dumps at night, food didn’t start bothering me until this past month, I gained 30 pounds and I have developed new symptoms. I became basically bed ridden in September and this past week it’s been rough again so now I’m on 20mg of propranolol 3 times a day which helps with the heart rate but even today, my roommate and I got A&W and my heart rate was resting in the 90’s when it’s usually in the 70’s-80’s with propranolol and I felt awful and had taken my midday propranolol but my blood pressure was fine which was weird because usually it’s elevated when that happens. Grief with this is hard. I have a hard time accepting this is my life and it’s even scarier not knowing if I’ll ever be able to be on my feet longer than 5-10 minutes again or if I’ll get my symptoms under control.

I am 80% sure my dysautonomia was caused by COVID because I had 3 covid infections in a year, but a year ago today I had my second covid infection and January will be a year since I had my last covid infection, so I’m unsure why I’ve gotten worse over the past year.

does anyone understand this feeling?

at the beginning, i was more involved in what i loved. a top singer of mine announced a new album. I knew it was ridiculous, but I prayed to stay alive (i didn’t know what was going on back then) until the album came out because I was SURE I’d be better and could then take care of myself..

On release night, I stayed up to 4am to listen with my sister (avg. sleep time was 9pm , so it was unusual) and that night I just got sent into a huge panic attack, because at this point, when I was holding on to anything, I was convinced God would just kill me then since I wasn’t better & the album was out 😭

I know how ridiculous it sounds now but I was desperate, and I thought the panic attack was symptoms of this mystery illness - because it was an incredible doom sensation (obviously?? I convinced myself I’d be OBLITERATED that night), derealization, tachycardia.. Heart went to like 180 or something (first time going that high) so we called the ambulance. DR was very dismissive, outright rude, .. I don’t even want to remember any of it. Absolutely awful. The following week was dreadful too. (was when my dizziness started becoming so intense that I started to miss school.)

the songs were all over TikTok, and now that it’s grammy season , of course people are posting those songs again . & tonight, I immediately got sent back to an extreme flashback.. pretty sure it’s some form of very mild ptsd. i mean i can confidently say all of this has been traumatic - i don’t mean to downplay and i most certainly know it’s less than going to war, but i just think back on all of the sudden everything changing. i know im always going to remember this year as the year i felt like i almost died.

But yes, hearing one of the songs again, I became weak & tingly in my legs & back, heart shot up, head felt full, short of breath. I have no clue if it was triggering a pots episode but I just started sobbing . Trust me, I’m aware that I’m sensitive, but im sure we all only know ourselves how horrific the journey was. Especially when I haven’t seen many changes from that day to now. It was a time I was trying to ignore this al. I was going out, I would hang with friends sometimes, I was hopeful.

In 26 days it will have been one year and I just can’t believe it. it’s really taking its punches on me. I didn’t need this tonight

Is anyone who’s lost weight willing to share tips? I find I am hungry a lot so I snack but I can’t be on my feet longer than 5-10 minutes on good days. I’ve gained 30 pounds since July ):

Today I went to school as usual no problems or anything during the morning , and in the middle of the national anthem I started having this weird feeling I never felt before. I tried thinking of what it could be and second's later it felt as if my body was literally shutting down like all I can remember is feeling super weak and just losing consciousness STANDING UP i fell into the desk were the computers are and then I woke back up but this time I couldnt really feel anything , my ears were ringing super loud , I started wobbling all over into people next to me and they caught me before I fell and sat me down on the ground , asking if Im ok but I could barely hear OR see as my vision was blurry and I was fading in and out of consciousness. This has never happend to me before and it was a super , super weird thing to experience , adding in the fact that some of it felt like I was dreaming , I didn't even get knocked out for longer then like 20 seconds before feeling alright and back to "normal" ig but yea that was not a fun experience espessically in the middle of a classroom.... has anyone else had the same experience before>> lmk I wanna here some stories

I thought it was supposed to go up but it consistently goes down whenever I drink something. Water is the worst, but it does it with electrolyte drinks too, it just takes more for it to happen. I’m on a feeding tube and formula is fine. But if I try to add anything my BP just drops.

Because why does liquid iv only last 10 minutes for me 😭 Im wondering if lmnt would work better or if there’s anything I can do to get more focused because im so tired all the time

Ok wait so when I stand, I’m fine for about 5 seconds. Then I get this tidal wave of pressure which originates in my spine and enters up in my head, making my ears pound. It lasts for about 10 seconds and then subsides. If I stretch my spine when I feel it coming, or take a deep breath, it is much less intense.

I’m asking around because I’d like to know if anyone else has this, and what diagnoses cause it!

Hi, I recently was diagnosed with POTS. It all started when I almost passed out while driving. I’ve been perfectly fine for 20+ years, and since that incident I continued to have horrible dizziness and started to get lightheaded. It just got progressively worse to where I couldn’t work anymore. Spent a week in the hospital; was lightheaded and dizzy and they diagnosed me with pots. They did all the heart tests and tilt table test. But I’m still hoping it’s something treatable. I have my first follow up appointment soon, so has anyone been misdiagnosed with pots and it turned out to be something treatable?

Newly ‘diagnosed’ (it was more of a “maybe it’s dysautonomia, just pretend like it is”) and looking for a way to track what’s going on with my heart. How many of you use smartwatches or fitbits or the like? Do you have one you recommend?

I know that GI pain is a part of dysautonomia but how do you deal with it?, what do you take to help with it?. It's getting too much for me right now, it's like it's flared up and I can't deal with it. I've lost sleep due to it

Basically the title. I'm laying on the couch with a heated blanket because I can't regulate my temp after doing a gentle workout at the gym earlier. My fingers and toes have been cold and numb for hours. My whole body started shaking and I have no energy. I started getting curious how other people manage it or what it looks like. What foods do you try to eat? Even more water than normal? Activities (if any)? Set up? Extra medication? Just curious what the days after over exerting look like for other folks.

Hey all!

So, I have no thyroid, but since dysautonomia has entered my life officially, it's been messing with my thyroid meds and my levels. Once when things were steady and I didn't have to switch med doses, now my TSH is suddenly high or too low :/. Dr is damn good at her job and I trust her when she tells me I'm okay with a little bit of a higher TSH level as long as the T3 and T4 are normal, but I suppose it's more frustrating. Yet another thing to be semi concerned about.

Does anyone else get muscle tightness during an episode? That’s my biggest indication that my heart rate is high. The legs in my muscles get tight and I get brain fog and irritable then panic. My heart rate has been resting in high 80’s-90’s tonight (I’m assuming due to my period) and propranolol usually has it in the 70’s but the muscle tightness is there along with fatigue.

I know it's a long shot posting in here but I've had a lot of odd things happen since COVID.

I was diagnosed with portal hypertension without cirrhosis. Additionally, some small gastric varices.

My physician said the portal hypertension is not that bad and that there's a chance I may have never known had I not got a CT. l'm scared of bleeding but they said the varices are small and have a good chance of not. I'm doing things to help and try heal, but I don't even know the cause. I haven't drank in years and my CT 8 months ago didn't show signs.

I first started developing symptoms of LC a month after COVID in winter of 2021. Neurological, gastrointestinal, list goes on. My doctor thinks I have post viral dysautonomia, leaning toward POTS.

I've taken a lot of supplements over time. I've done elimination diets and a string of probiotics to battle SIBO a year ago. SIBO was the only thing we could ever find on paper, until this scan a few days ago.

I'm wondering, has anyone else developed liver issues? I would love to hear your story and how you've approached it.

What is with the symptom of pre-syncope? I get it so often and it scares me but I almost never fully faint (often grab or lean on something though) and I rarely even have my vision go for more than like a second. Is this super bad or just sort of average whatever pots stuff? I have MCAS diagnosis and not sure if I need to seek official POTS diagnosis rapidly or if my current treatment plan will also address the POTS. If that is one of my biggest symptoms do I even have it very bad anyway? Idk. I’m struggling and not sure how intensely I need to put my energy into pursuing POTS specialists and diagnosis versus just put my energy into pursuing MCAS treatment.

I was recently diagnosed with disautonomia. I'm day 4 doing a holter test, and absolutely pounding down salt. My doc recommended I get 8-12 grams a day to increase BP. I'm struggling to get above 4 between diet and supplements. (I'm working on it.) I'm on track for 6 grams today. I'm drinking 3 liters of water a day, closer to 4 yesterday. I am unceasingly thirsty.

My joints HURT. I feel like a crusty sausage mummy. I'm so bloated and stiff. My hands ache and my hips burn. My knees feel like there's glass in them. My eyes feel pickled. My tongue feels swollen. It honestly feels like I got heavily glutened (celiac) or ate some other super inflammatory food, but I definitely have not. I've only eaten at home. It's 100% the salt.

Is this normal?? Is the trade off dizziness for joint pain? Because anything is better than this. Please tell me this gets better??

I'm jot sure if this is a question, me venting, but most likely both.

I've only been dealing with this since late May or early June, but every day feels like a century.

I've had lightheadedness since 2021. Lucky me, I had covid in 2020, then became pregnant, had preeclampsia, induced labor, postpartum preeclampsia, then my sweet baby and I covid (second time for me). I've been (mostly) active military (national guard) for about 16 years years. Have always been heavily into fitness and nutrition. Then came May 2024. The exhaustion came. Then came this absurd heart rate of 130-180 doing nothing more than laying in bed. Cardiologist said "gravity is simply working against you, so drink 80-100 oz of gatorade and wear compression leggings". He put me on a 30 day heart monitor, and put me on Metoprolol. Then I began passing out. Then came every other symptom of dysautonomia. I seen a neurologist, who labeled it as dysautonomia. This brought some (emotional) relief.

But then came the convulsions. The neurologist decided thst depokote should help with thoae and migtaines. But then its less and less answers, and tilt table test with "almost" abnormal reaults.. but I passed out getting ON to table, and twice walking into the hospital, eventually needing a wheel chair.. but test didn't show enough for a diagnosis.

I feel stuck because, one, I'm an awful advocate for myself, and two, it's can't begin to explain how I feel.

Tired.. yeah, but this isn't a tired that can be explained. I can't sleep, but I can't get up.

Nausea and vomiting, yep, but not like any other nausea I've I've ever felt..

When i looked up dysautonomia, I literally have every symptom but maybe two..

It takes me 20 minutes to walk from one end of my 1,500 sq ft house, to the other. My husband (who supports me like no other) asks what are you feeling, why is it so hard to walk.. I have no clue, but it's so hard.

I don't have the energy to even make phone calls anymore. I feel like I've given up on hounding the doctors toc"fix" this. How do they fix something that I can't explain, and every test they've done comes back normal? They've literally done them all, and are talking about starting them all over.. the MRI's, CT scans, blood work, heart monitoring, EEG's, tilt table test.. orcthey say just follow back up with them in 2 or 3 months.

Every day I look for something new I can try, something else to ask the doctors about. I finally swallowed my pride and talked to my PCP, who has now put q referral in for home health care. Initially, medical leave was enough. But now I struggle to even take care of myself, make a plate of food, I can't manage any household tasks. When I pass out at home alone, or things get really bad (3-5 times a day at least) i call my husband. The Emergency room just keeps me for 6+ hours, they see normal HR, normal BP, normal EKG, and discharge me. After the second time, i refused to go anymore. Two weeks ago, I fell so hard I supposedly got a mild concussion (according to my physical therapist).

I know something is SEVERELY wrong. This is not me. The "me" I know enjoys waking up at 4AM and immediately start my day, whether it be working out, taking care of my soldiers, or playing with my baby girl. And now, I'm in bed, 20--22 hrs a day every day.

How do you explain these symptoms that seem generic but feel so unreal. How do you cope with this forebears on end? I'm fighting to hold onto hope with every fiber of my being, but I'm quickly feeling hopeless.

Thank you for taking the time to read, and I appreciate any feedback on guidance if you have it!!!

I (22f) am preparing for my first appointment with a new primary care doctor. I have previously been officially diagnosed with orthostatic hypotension, hEDS, CPTSD, ADHD, and GAD, with a tentative diagnosis of MCAS. Despite being on medication for blood pressure, ADHD, and anxiety, a regimen which worked for several years, I have been dealing with a cycle of anxiety leading to panic attack-like symptoms including chest pressure followed by exhaustion, dizziness, and tension headaches. I don't think this is purely psychological, though it seems to be triggered by anxiety, because I don't have the level of distress that accompanied the panic attacks I had as a teenager. A 2 week holter monitor, echocardiogram, and blood pressure checks during episodes didn’t reveal any cardiac abnormalities beyond my typical low blood pressure. I am working with my psychiatrist and therapist to address the anxiety triggering these symptoms, but I want to know if there is anything else I should be looking into, since it is now happening almost daily. How can I bring this up without it being written off as a mental health issue? If you have experienced something similar, what specialists and testing did you start with or find most useful?

I've been having symptoms resembling dysautonomia for a couple years, primarily getting very dizzy upon standing up too quickly. It seems to me that they started around the time of a running injury I sustained following a fall, when I landed full-force on my right knee and injured my sciatic nerve, but I can't be sure of the connection.

Anyway, a few weeks ago, the dizziness started getting worse and happening more frequently. Then I started feeling heart palpitations throughout the day. Around the same time I began experiencing pulsatile tinnitus in my right ear, first when I would lie down in bed, but lately it's almost constant, and audible even when there's background noise.

A couple days ago the heart symptoms started getting worse. At one point I stood up too quickly to walk inside from my porch and ended up passing out about five or six steps later.

I don't have a reliable BP monitor, but I went to an urgent care and they got a reading of 157/80. The (kinda unreliable) small digital monitor I have started showing readings well within the range of hypertensive crisis. I recently experienced one night where I was sweating, heart definitely beating irregularly, general feeling of dread, etc.

The thing is, all of this came out of nowhere. Until two months ago I ran (fairly long distances) and worked out regularly, but due to some changes in my life situation I've had to give up those habits for the time being. My BP was excellent for years during this time.

I am a 39yo male. I've been sober for eight years, but was formerly a heavy smoker and an amphetamine addict. I didn't plan on living this long, but with the clarity I've had for most of the last decade, I would prefer to spare my loved ones a preventable tragedy. I have an appointment with a GP on Monday, but it will be the first one for a long time.

Does anyone have experience with symptoms like these? Any advice, or suggestions on how to handle it with my doctor?

Thank you all for your time here. I appreciate it.

I’m suffering with bad POTs and other probably undiagnosed stuff. I’m not well and haven’t been for a few years. But only this year have I got so bad that my sleep gets affected severely. So for months I’ve been unable to sleep until like 8am and got up at like 3pm now that’s not good but I was okay with it eventually. And I got comfortable with it to a degree. But over the last two weeks I’ve started to progressively struggle to sleep to about 12pm and get up at 4pm so about 4 hours sleep.

Now this has been scaring me and today I’ve been unable to sleep fully. I went into my bed at 2am and tried to sleep from then to 8pm got up cause I couldn’t sleep for two hours then tried again. And no matter how hard I tried I could not sleep. Usually it’s air hunger keeping me up and it did for most of the night but now it’s slowly becoming I just can’t switch off no matter how tired.

I have been up for 26 hours. And I’m exhausted it’s 17:49 and hoping to go to bed at 10 so I can get up early tommorow. But seen as I’ve not been used to that in months. I still believe I won’t sleep. Doctors won’t help they just say keep taking melatonin which I don’t agree with. What do I do? This is making me flare horrifically cause I’m unable to sleep. I’m seriously and I don’t mean this lightly terrified of this. I can not sleep ever now and it makes my symptoms x10000 worse. What do I do. Cause if I don’t sleep tonight I seriously feel I will die.

Like I am tired but I just won’t switch off. I am absaloutely tired and exhausted but never fall asleep.