r/dysautonomia

I’ve been bumped around to different cardiologists several times from my doctors office. They finally sent me for a tilt table where they told me i have orthostatic intolerance and likely a Heat intolerance. When I returned to the cardio office I had a New doctor (older male) who said nothing was wrong with me and he’ll see me in a year. He was very quick to dismiss me and say it was just a freak accident when i passed out in the shower. I’ve had symptoms my whole life and explained that to him. I think I need a new doctor but I’m not sure. I’m at a loss of what to do.

Since my (35F) formal diagnosis (TTT) last year I’ve had 3 drs immediately dismiss the diagnosis and say no it’s not and 3 who didn’t doubt it at all. You might be shocked to know, the 3 who don’t believe it, all men. and the 3 who did believe it, all women. Curious of others experiences, what’s it been like with other doctors for you since your diagnosis?

Hoping for any insight/advice

I have been having fairly regular ‘panic attacks’ for the last four years. I have had panic attacks since childhood which I could always relate to a thought process and also could always control through breathwork/distraction. These episodes feel entirely different…

They’re often triggered by large meals, overheating, post-exercise, not when I’m having anxious thoughts. Commonly I’ll have a racing heart, sweating, shakiness and an indescribable sense of impending doom, which I never felt when I had panic attacks as a kid. One of the scariest parts of this is these attacks often wake me from a nap or 1-2 hours into sleep with these symptoms and I feel absolutely awful even once the symptoms pass.

For the last four years these symptoms have been put down to anxiety/panic attacks and I have been on multiple SSRIs and SNRIs with little to no impact. The best result I’ve had was from beta blockers as required but it’s very difficult to predict these episodes and take the medication beforehand.

My question is, is it possible that these episodes are actually an adrenaline dump/surge and if anyone has a similar experience or have been able to improve these sorts of symptoms?

Thanks!

I don’t know for sure if I have Dysautonomia or not. All I know is I got sick a year ago with a cold type virus, and after that started having all kinds of issues.

Severe debilitating nausea, dizziness, tremors/spasms, overall feeling like I was going to die.

This lasted MONTHS, I’m talking like 6+ months I lost tons of weight and spent A LOT of time at the ER.

Things got slightly better, but I never went back to my baseline. No one was ever able to find anything wrong with me despite seeing countless specialists.

Now here I am again. I got influenza A a couple weeks ago, and since I recovered I have been once again having severe debilitating nausea. I can’t take it anymore. I feel like I am going to die, and no anti nausea meds work.

I also have some dizziness and weird heart feelings and overall just feeling not right, but the biggest thing is the nausea.

I threw up once, sometimes I dry heave, but I constantly feel like I am about to throw up and I am so uncomfortable.

Has anyone else experienced these symptoms?

I’m scared and with how bad I am I don’t know if I can take it for months and months and months again.

I am going absolutely insane, crying most days, I can’t even describe how intense the nausea is.

Hi everyone,

I’ve been dealing with a frightening squeezing, crushing pain behind my breastbone. I do not have the typical burning or “heartburn” sensation at all — it feels much more like pressure, tightness, or an angina-type squeezing pain. Sometimes it honestly feels cardiac, which has been very anxiety-provoking.

The pain is highly unpredictable and can happen both at rest (sitting or lying down) and during exertion, even something as simple as walking. I also sometimes get a dull aching pain in my jaw and teeth along with the chest tightness, which makes the whole thing feel even more concerning.

Because of the squeezing nature of the pain, I underwent a very extensive cardiac workup. I had 3 resting ECGs, all completely normal, a normal echocardiogram, and an excellent stress test result reaching 12.4 METS at 18% incline with a peak heart rate of 185 bpm (117% of predicted maximum heart rate), without abnormalities. My cardiologist has fully cleared my heart, but mentally it’s still difficult because the pain can feel so convincing.

To investigate a digestive cause, I recently had an endoscopy (FOGD) with biopsies. I translated the reports from French to English below, and I’d really appreciate hearing from anyone who has experienced something similar.

Endoscopy Report (FOGD)
Reason for exam: Retrosternal chest pain.

Esophagus:

• The lower third of the esophagus was very red and inflamed (erythematous), without ulcers.
• The Z-line was irregular.

Stomach:

• Grade 1 hiatal hernia (Hill classification).
• Diffuse redness/inflammation throughout the stomach (pangastritis).
• Biopsies were taken.
• No ulcers or tumors seen.

Duodenum:

• Completely normal.

Conclusion:
Marked inflammation/redness in the lower esophagus, Grade 1 hiatal hernia, and erythematous pangastritis.

Biopsy / Pathology Report

• Four small stomach tissue samples analyzed.
• Mild chronic inflammation with congestion/swelling.
• No precancerous changes (no metaplasia or dysplasia).
• No cancer.
• Positive for Helicobacter pylori (H. pylori).

Biopsy conclusion:
Mild chronic inactive gastritis associated with H. pylori infection, without malignancy.

My concern is that despite the reassuring cardiac tests, I still struggle mentally with the squeezing “angina-like” sensation because it can feel so intense and convincing, especially when walking or during physical activity. My doctors believe the inflamed esophagus and small hiatal hernia may be causing esophageal spasms or pressure sensations rather than classic burning reflux symptoms.

Has anyone else had H. pylori, gastritis, reflux, or a hiatal hernia cause severe squeezing chest pain without actual heartburn — especially pain triggered by walking or movement? Did anyone also experience dull jaw or tooth pain from it?

And for those treated for H. pylori, how long did it take after antibiotics and acid-reducing treatment for the chest tightness/spasm sensations to improve?

Thanks a lot for any insight or shared experiences.

Does any else use a smart scale that tracks body water percentage? I struggle with staying hydrated and I just noticed that I'm only at 20% 😅 I didn't even know it tracked that but it's supposed to be around at least 45%

I was diagnosed with anxiety since 2014.

Since then i've done almost every year cardiologist appointments because of anxiety ( even with beta-blockers ) , ER visits, etc.

I've done holters 3 times. And it wasn't until 3 months ago that they told me about IST. But... i don't know if I want to have that at all or maybe I dont have ut at all?

My heart rate while sleeping average was 77, with the lowest being 58. but i have spikes to 120. ( but I did the test while I was going trough a difficult time with " anxiety " )

I was off bisoprolol for quite a time and didn't felt bad at all, but I did have a relapse and after that I started taking it again.

I've noticed that my HR increases everytime i think somethings wrong and viceversa too.

My Dr. Told me i won't die from this... but idk if this IST diagnosis is due to anxiety or an actual dysautonomia , and i was thinking it was anxiety all this time...

( I can even calm my symptoms if I distract myself , or when I feel somewhere safe, I feel better too )

EDIT : They did an ECHO, stress test, EKG, and Holter .. everything came back normal except of course the holter​

For the last 5 years I've had symptoms such as palpitations (diagnosed as ectopic beats by Cardiologist), dizziness, shortness of breath, & excessive sweating when standing up & moving around. These have become progressively worse.

My heart rate swings between 60 bpm at rest to 121 when just walking slowly upstairs, even whilst being on beta blockers. Trying to have a shower or do anything even mild activity levels, leaves me needing to cool down & the sweating is awful. Leaves my hair wringing wet & just runs off my face & chest.

Neurology refused point blank to see me. So was sent to Cardiology again, had 24 hour ecg, & echocardiogram which showed nothing. Got told I'm fairly young & have no risk factors for heart disease etc, so I asked about something such as POTS.

Had tilt table test about a month ago. Couldn't see my BP or BPM as monitors were behind me but I had symptoms such as dizziness, sweating, shortness of breath, & palpitations when raised for the 45 mins. So glad when it was over. Afterwards my mum who was in the room said that my heart rate was spiking just as I reported the symptoms.

Received letter of 2 lines today: test was normal & you are discharged from the Cardiology department. Not even a "it's not PoTS but something isn't right". Apparently the symptoms above are all normal for someone just standing?! Neurology won't see me, my beta blockers can't be increased as they drop my BP too low, so now I'm left with these symptoms & my GP will be telling me nothing is showing as wrong but something isn't right. What can I do?

I'm honestly so lost. I've been having low heart rate (mostly 40s and 50s but occasionally into the 30s as well) and blood pressure (lowest I've recorded was 78/42).

I'm 24 and have had POTS since I was 16. This whole new low heart rate and blood pressure feels very weird, it's new after I had 2 surgeries in less than 1 month.

I'm used to being on the higher side of things my resting heart rate being about 90-100bpm. Monitors have said there are no rhythm irregularities, however, an X ray during an ER trip showed vascular congestion. I've passed out a few times (I think 5 in the past 2 weeks). I guess I'm just scared and tired of not having this under control. Has anyone gone through anything similar at some point?

My dad burps (??) more than 300 times a day. Each round lasts a couple of minutes (up till 20 times when it gets bad), and theres multiple rounds of this each day, each of those rounds takes from 50 to 150 burps. We went to ENT, GI, did Endoscopy, did Colonoscopy, brain MRI, and EKG. Nothing showed up, everything says he's healthy. We're not sure what the issues are with my dad, but hoping if someone has encountered this, what the diagnosis is, and how to help.

When my dad was in United States, he keeps burping more than 300 times a day, but the moment he goes to India, it stops. We're not sure if it's the food, the weather...or anything at this point. Feeling pretty lost.

video is in comments

My primary is willing to sign my disability paper work to protect my job until I get the help I need.

Anything in particular your doctors wrote that got you approved?

Hi all. 30/F. I recently was diagnosed with orthostatic hypotension and was wondering what has worked for you if you have also been diagnosed. My doctor recommended I wear “groin high compression stockings” so I did order some but have yet to wear them as I’m a little intimidated. I also think I need to order a shower chair because I’ve been struggling with standing in the shower for any length of time, I always end up almost passing out so I end up on the floor of the shower sitting down most of the time. And does anyone else deal with super cold hands and feet? I can’t never warm them up. I also have several other chronic illnesses, Lyme disease, MCAS, PCOS, chronic gastritis, elongated qt, and a variety of mental health diagnoses. Is there any specific medication you take? I guess i am just looking for any help or advice at all. Thank you

Anyone experience taking a deep breath thru the mouth and hold it then you feel really bad like your gonna pass out this happens when I usey inhaler a lot but it also happens without it it definitely feels like a vasovogal response but I'm not certain feel like my hands go numb and my head feels heavy and my hearing gets muffled

Hi! This is my first post🙈
So it’s kind of random but in early April I had a tingling sensation in my right arm and leg for a couple of days that dissipated. But now the back of my right leg is incredibly sensitive, it feels like it’s sunburnt almost and everything irritates it. And then I hav random burning along my spine and neck.
My chiropractor took X-rays showing my spine and neck are misaligned, thus he says it’s because of subluxation, and dysautonomia. Has anyone had this experience?
If so how long did it take to recover? I’ve been getting regular chiropractic adjustments three times a week. Per the chiro, it’s a problem that took time to develop so it’ll take time to fix. But I’m in pain😭 and it’s definitely not helping my depression

Hi!

I’ve happily been on Metoprolol 25mg twice a day for years for my palpitations etc. But this winter I started having very low blood pressure esp when standing (systolic in the 70’s) with pre-syncope symptoms. So my cardiologist recommended decreasing my metoprolol dose. I decided to start slow, as my body is very sensitive to changes in my meds. I decreased my PM dose by half, that helped my BP a bit the past month. But I’m still having low BP, so I just decreased my AM dose by half too. The plan is to switch to Ivabradine. But I’m very nervous about the side effects, I really liked the beta blocker. I’m also nervous about just stopping the Metoprolol cold turkey and switching to the Ivabradine, without weaning. For those that have also made the switch from a long term beta blocker to Ivabradine, how did you do it? Did you wean? Did you have withdrawal symptoms from stopping the metoprolol ? Doctors never think of weaning off any meds except the dangerous ones, but I always do because when I don’t I feel awful. Thank you for the advice!

Last night I decided to take a hit of weed with my girlfriend. She smokes often because she says it helps her de-stress. I haven’t smoked in almost 2 years but I figured maybe it would help me too. I go on short 15-20 minute walks around my neighborhood when symptoms are manageable so I decided I’d try smoking while we were out on the walk. I took one hit and soon after started feeling very uncomfortable. We walked back to the house and I sat down to check my heart rate and it was at 200!! Highest I’ve ever seen it. Obviously was dizzy, presyncope, all the symptoms. My girlfriend was worried that we might have to take me to the ER but I was weary to go because I’ve gone multiple times and they usually never help. I saw a cardiologist 6 months ago and they did 2 week heart monitor, echo, multiple EKG’s, and told me I was fine. The high heart rate scared me really bad though. I decided to just lay down and drink water and distract myself. Even laying down on my back and doing nothing my resting heart rate was at like 120-130 for an hour. Started calming down a bit later in the night and finally went back below 100 after a couple hours, but everytime I would get up and move around or do anything it would easily go up over 100. This morning I feel fine, just on edge. It’s obvious that weed doesn’t help me lol. I’m still pretty shook up about the 200 heart rate. I legitimately have never seen it go that high. The highest I’ve seen it during bad flair ups has been like 150-160ish.

I have dysautonomia, EDS, and endometriosis. Honestly, I struggle with a lot of things in general, but lately this issue has become especially difficult, among others. A few days ago I completely stopped being able to urinate and had to be catheterized. This has happened to me before, years ago. I’ve always struggled to urinate properly, I go little by little, have to push/strain, or depend on certain positions, but I never really empty my bladder normally.

About a year ago (when we finally reached the dysautonomia diagnosis as many of you probably know, it can take forever because so many doctors lack information about these conditions), I had already started developing urinary issues. I’ve had episodes where I simply cannot urinate at all.

A year ago my neurologist told me I needed to get a urodynamic study done, but I was too scared and avoided it. I know that was a mistake, but the problem isn’t just the test itself, even when they try to catheterize me, it can take them hours because everything down there seems to completely close up, and they end up hurting me a lot. That fear made me avoid dealing with it until now, after another retention episode. They’re now scheduling the urodynamic study.

I would really like to hear your experiences. Do any of you also deal with urinary symptoms like this? My doctors have told me that dysautonomia and EDS can cause bladder and urinary tract dysfunction, but I honestly don’t know how far this could progress. Given how severe my health issues already are, I’m aware I could potentially end up needing a urostomy someday.

The worst part is that my intestines are also a huge problem. Thankfully I have a great gastroenterologist helping me with that. I suffer from horrible constipation, truly awful, A NIGHTMARE, and sometimes not even medication helps, but I’m getting off topic...

Could you please share your experiences with urinary problems? How do you live with it? Have you gotten answers about what part of the urinary system is malfunctioning? Have you found anything that helps? And even if you haven’t found solutions, I’d still really appreciate hearing from you. I feel very alone and hopeless right now.

Also, if any of you have had a urodynamic study done, I would be extremely grateful if you could tell me about your experience with it.

Living with this is so difficult. Thank you for reading.

Googling my symptoms keeps leading me to this sub and the syncope sub, but I don't feel like it quite fits. It's also not food poisoning. Please help, I feel like I'm dying.

About 2 years ago, i had 3 medical episodes where I suddenly, without warning, started uncontrollably vomiting and having diarrhea in the evening. The 3rd of these episodes led to me fainting in the bathroom and vomiting and shitting all over myself, and an ambulance was called. All the tests they ran looked normal and they just kept me until I felt better, and then discharged me.

A couple months after that I had my first identfiable gallbladder attack and had emergency surgery to get my gallbladder removed. I didn't have another one of those episodes, so I chalked it up to wonky gallbladder things.

However, it's happened again. It's nearly 7am; around 10pm last night i started vomiting and having diarrhea after feeling a little off all day. I nearly fainted in the bathroom again and was incredibly pale. I laid on the bathroom floor for a while and my blood pressure (i have an at-home cuff that's prescribed to me) was concerningly high when my husband checked it immediately after the dizzy spell. A couple minutes later, my blood pressure was normal. Checking it through the night it keeps both spiking high and going fairly low, coinciding with more bouts of dizziness ot vomiting.

I have been vomiting and having diarrhea all night. I feel unusually cold, and then I have a sudden hot flash, vomit, and sweat profusely all over. I do not have a fever.

All of my joints ache and I am havinging intermittent abdominal pain across my entire torso, at the level of my lower ribs. Probably from the vomiting?

My muscles are weak and I can't take care of myself, and I'm dizzy when I'm upright. My husband has been having to take care of me.

**I havent gone to the ER yet because last time I went, they couldnt find anything wrong and couldn't help me. If this continues for a few more hours I plan to go in, though.

Does this sound at all familiar to anyone? Please help. I'm terrified of these episodes and need to figure out what it is so I can avoid triggering them.

Ive been experiencing numb hands, pins and needles and heaviness in my legs, dizziness, needing the toilet and just general brain fog since lunch time today (~4 hrs ago)

At lunch, i accidentally inhaled some rice and had a coughing fit and wasnt sure i got all of it out of my airways so went down a bit of an anxiety spiral. I do have low iron (ferritin is 6), however it’s been this way for years so i don’t really see a big impact day to day. I also have some histamine issue, i developed a load of anaphalaxis allergies in the last 18 months and do react to things randomly so it could be that too

Whenever i stand up it feels like I’m wading through mud and making me more anxious, does anyone have any advice or suggestions of which of the above could be causing the issue? I’ve not taken antihistamines today as I’ve not felt other issues such as mouth numbness and an itchy throat but have used a flonase nasal spray