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Desperate with heart pounding my cardiologist not issuing monitor bc of insurance prescribed propanol day 21 low dose. At first I thought I was having a reaction to Lexapro which I took for 5 to 7 days but it is wagee out now and propanolol is not. I need to stop palpitations but BP is low and I need to lose anxiety bc of the temp dysregulation and utter disaster that is my body. Please sieskngi tis topic and experiences. Also on 21 days did anyone lower this drug ..hypersensitive to change and how slowly. Tremors are so severe I can't function at all during the day and any future out why tremors less at night or just a lil better at night .but I've lost most of my life and lost .y family who thinks I made up dysautonomia. I dint want to lose the idea of ever being a womsn again. It's. It estrigen loss m weeks ago I was still able to feel and bc hospital did t keep monitor on ik screwed plus getting more traumatized daily by chills hypothermia literal mass confusion and brain damage post TBI but that only hit severe cognitively when I lost control of ans months later during an infection. Hell me please I have no wetness despite having had it prior and just completely numb etuvtioe dysfunction female

I drink over 8 bottles of salt water per day . Take 1/8 remeron bc I can't eat at all . When dysautonomia started I was not nearly as dry and it's three months and my entire body is drying out .

I just had a Zio monitor. And it seems like none of the doctors take me seriously. I have been told it’s just anxiety and I’m currently in the process of getting a diagnosis. I got a cardiology appointment in a couple days. I’m 16 and I can’t even stand/walk without being nauseous, throwing up, having racing heart, and extremely short of breath. I don’t know what to do anymore and I feel like giving up on trying to get help.

I'm writing a research paper on POTS/dysautonomia for my English class and I'm required to do an interview of someone who has it and am looking for people to just answer some of the questions. You don't have to answer all of them but any input would help. Just answer to the best of your ability

1. What Values are important for people who have illness

2. How has having this illness contributed to your daily life and in public

3. What is something you want people to understand or know about this illness

4. How has having this illness effected your relationships with friends, family, and romantic interests

5. What symptoms have impacted your life the most

Anybody have experience with duloxetine for POTS and Dysautonomia.

Doctor says it’s a “miracle drug for pots” and it apparently helps peoples symptoms a lot. And basically refuses to tell me how and that they will not help me unless I try it.

But I’m scared to try it as I haven’t heard it ever being prescribed for pots and it’s an antidepressant I don’t want to risk this tablet making me worse. But I’m being refused to get any further help unless I try it. He isn’t giving it to me for anxiety he did say it’s for pots this is my cardiologist by the way prescribing me this.

I just wanted to ask if ivabradine slowly stopped working for some of you guys. I have IST and possibly POTS and recently I got a nasty cold and during it my hr flared like crazy and the ivabradine barely keeps my hr down anymore after working very well the past year. I even went from 5mg to 7.5 mg. So im just asking if anyone has experienced something similar. I even developed this very visible pulse in my neck/throat when my hr stars going up.

I 20f, have been battling these odd episodes since April of 2022, when i was about 35 weeks pregnant with my son. I have been so drained and exhausted not being able to find a reason or a cause or even an explanation to why I'm feeling like I do.

I had my gallbladder removed in April of 2024 (this year) and it got a bit worse.

Everyday i go through the same process with the same symptoms and no matter what I do they won't go away.. I have, shortness of breath, dizziness, Vision blurriness, lightheadedness, tiredness/fatigue, my hands and arms will shake, chills, hotflashes, odd bodily sensations like numbness, blood pooling in the legs, pre syncope on occasions, and moments where my heart rate will jump sky high (140s)

I've been to the ER several times over this stuff, and I've had every test imaginable done, including things like CAT Scans and MRIS, x-rays, ekgs, blood work, and so on, and they were ALL normal. I've been sent home the 10+ times I've went and was given a pamphlet that said anxiety on it. So I went to my routine doc and they prescribed me anxiety medicines, and I have taken, prozac, lexapro, and zoloft, and celexa, and none of then have subsided the symptoms..

I went into the health center one day as a walk in for the high heart rate episode I was having, and then they were like were going to refer you to a cardiologist. So the appointment finally arrives and when I go I'm given a Holter moniter, amd was told I was going to have an echo scheduled (never heard back from them) was asked like one or two questions and I basically get shooed out. I was pretty bummed because they did NOT seem to care/be concerned. I was prescribed metoprolol 25 mgs (but take half a pill daily) and it seems to do okay but I still get the high rate episodes on occasions. My heart rate is in the 80s on metoprolol but is usually in the high 90s/100s.

The past few days I feel a fear that my heart is going to stop. And I've developed some sort of cardiophobia. I just feel like somethings not right even though every blood test and everything I've had was normal. I'm not sure what I'm looking for here, I just don't want to be alone because I am so so drained...

I have been getting sick constantly for most of my life with every virus going. Im always tired and am getting more and more sensitive to having presyncope incidents particularly when standing, going up stairs or in hot weather. Ive had it occasionally all my life but it has significantly worsened and is making me nervous to stand or exercise.

Bloods and heart ecg and echo are fine. I miss a lot of work because of constantly being rundown. I'm also diabetic and have anxiety so that doesn't help.

I'm seeing a cardiologist and they're suspecting vasovagal syncope but no diagnosis yet. I had a TTT but couldn't finish it because they wanted me to faint and I was too unwell to continue the test. I was in presyncope quite quickly once placed standing. Low BP (not sure of the number) has been identified on several occasions including during that test.

I guess I'm just a bit lost and unsure if this is me being a lazy person or if there's something actually wrong. Has anyone had treatment for vasovagal and had it improve their overall health and energy?

i drink 80-120 ounces a day but it doesn’t help my orthostatic hypotension much. also eating a ton of salt and it doesn’t do much either lol

I’ve been drinking tons of water, sugar free liquid iv, added Himalayan salt every day and my skin turgor is not good and my blood vessels are tiny. My GI dr said well that’s because you have EDS. Does anyone else have issues getting hydrated?

Long story short, I started a low dose of an anti-seizure medication (Lacosamide) about two weeks ago while I wait to get tested for epilepsy and I’ve had a noticeable decrease in dysautonomia symptoms (specifically related to IST and POTS), which I find quite suspicious. I’ve been keeping better track of my symptoms since I started a new medication, and I’m starting to realize that my dysautonomia symptoms seem to come around the same time I have auras or feel like I might have a seizure. It’s making me doubt the dysautonomia diagnoses because honestly, Lacosamide seems to be treating my symptoms better than Florinef ever did. I’ve been able to go up the stairs without feeling like I’m gonna die and it’s incredibly freeing.

Has anyone else been on anti-seizure medication and noticed a decrease in their symptoms, or does anyone here have dysautonomia along with epilepsy and feel the two interact?

Hi all. I just got my diagnosis and my doctor suggested fludrocortisone. I am typically sensitive to medications. I’m curious if anyone has tried this one. How did it work for you and were there side effects?

Does anyone wear a helmet when they are in a flare and more likely to faint?

How do you guys deal with the anxiety of having these symptoms. Mine feel no joke JUST like I’m having a heart attack or angina. Like the chest pain, sharp throbbing jaw, shoulder, neck, back and arm pain, impending doom, severe SOB, stomach pain, nausea, dizziness, the whole 9 yards. I have done so many tests, seen a bunch of cardiologists. They all say I’m ok. I didn’t believe them because I just knew something was wrong. I’m beginning to believe them that I’m ok, especially after reading a lot of people have the similar symptoms as me with dysautonomia. But when I’m in the midst of it and all the symptoms come on, I can’t help but feel I’m ignoring my health by doing nothing and feel a lot of guilt and anxiety. On one hand I understand with the extensive testing I’ve done I should be trusting my heart is ok. But on the other it is just every single symptom matches the exact description of a serious cardiac event and it’s so hard to convince myself I’m ok. And I don’t really get any of the other “normal” POTS/dysautonomia symptoms like fatigue, headaches, etc, mostly just the cardiac-like ones. I do get adreneline rushes and sweating though. Just so tired of fighting my mind at this point.

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