If so did you have palpitations after, or any symptoms? I want to donate but I don’t want to make myself ill.

Hello Whenever I have a flare (mostly gi stuff) I get major adrenalin dumps from waking up from sleep. Racing heart rate, sweaty, nausea, etc.

What do you do to overcome this? Does anyone else have the same thing? If so how often?

Mine comes every few months and lasts anywhere between 1-2 weeks. I've had all the tests under the moon.

For those of you taking midodrine, what were your blood pressures BEFORE you were prescribed it? What symptoms has it helped with?

Hello, everyone. For the past six months, I've been experiencing unexplained dizziness, specifically only on my right side. To clarify, if you imagine dividing my body vertically down the center, only the right half experiences dizziness.

Initially, dizziness occurred in specific situations, such as during my first bite when eating, when straining in the bathroom, or when pausing after active movement. It's particularly intense when resting after exercise, almost as if I'm about to faint. Two months into these symptoms, I began experiencing strange eye tension and migraines when looking at computer screens. However, dizziness came first.

Interestingly, the dizziness improves when I'm actively moving around, busy with tasks, or when I'm exposed to colder temperatures. Because I became unable to ride buses or subways, I started commuting by bicycle. Remarkably, no matter how dizzy I was, pedaling my bicycle immediately made the dizziness subside.

As symptoms progressed, they became constant rather than situational. I started experiencing intense heat sensations exclusively on the right side of my face, an unnatural feeling in my right eye, and mild but continuous faint-like dizziness. In triggering situations mentioned above, the symptoms intensified to the point where I felt I might actually pass out. Migraines initially triggered by computer usage became constant, accompanied by neuralgic sensations.

On one occasion, after working non-stop through a weekend, I experienced a severe incident. After work one evening, I felt a strange heaviness in the right side of my brain multiple times, eventually becoming so dizzy I couldn't stand. I was rushed to the ER, struggling even to breathe. During the trip, I held my right face, eyes closed in pain. Upon arrival, when I opened my eyes, I noticed double vision in my right eye, as if I'd developed sudden strabismus. Thankfully, after a few hours' rest, my vision normalized. However, since this incident, I consistently feel an uncomfortable heaviness in the right side of my brain and had to take leave from work. Working literally became impossible for me. As mentioned earlier, my symptoms eased only in colder environments, but they eventually became so severe that even the office temperature was unbearable.

I underwent numerous tests at neurology, all normal except for a tilt-table test, which showed elevated heart rates and reduced autonomic function (without clear sympathetic or parasympathetic dominance). Interestingly, aside from dizziness and migraines on my right side, I don't show other typical autonomic symptoms.

Given the situations that exacerbate my symptoms, I suspect vagus nerve involvement, but standard treatments seem unclear. Peculiarly, symptoms worsen immediately or within 5 minutes of using a computer, causing tension behind my right eye, migraines, dizziness, and that strange brain sensation. On days I use computers, vagus nerve symptoms worsen significantly for half a day or more. I thought it might be photosensitivity, so I'm now testing FL-41 lenses, which seem to slightly help. However, since symptoms occur exclusively on the right side, I'm unsure if it's true photosensitivity. I've also looked into PWA sensitivity, but my IPS monitor has no flicker issue. Eye muscle strain was another guess, but a strabismus test returned normal. I'm genuinely baffled and distressed.

Currently, while on leave, several treatments have brought some improvement, though symptoms persist:

1. Prolotherapy: Reduced facial heat sensations but didn't fix dizziness or brain heaviness.
2. Chiropractic & Stretching: Helps temporarily, especially around neck, shoulders, and spine.
3. Jogging: Improves blood circulation, reducing symptoms significantly.
4. Avoiding Screens: Feels fundamental to recovery but impractical once I return to work.

Doctors generally dismiss it as nerves making me overly sensitive to stimuli. After visiting over ten hospitals without significant improvement, I'm exploring self-treatment methods. Has anyone experienced something similar or found an effective treatment?

Thank you for taking the time to read my long post.

TL;DR:

1. I've had vagus nerve-related dizziness and facial heat sensation exclusively on my right side for 6 months.
2. Autonomic tests showed issues, but no other typical autonomic symptoms aside from dizziness and migraines.
3. Computer use triggers severe right-side eye strain, migraines, and dizziness.
4. Looking for insight from anyone with similar experiences or successful treatments.

When you started increasing your salt intake, how long did it take for you notice positive benefits in feeling improved energy and less likely to pass out? Feeling discouraged I haven’t noticed positive benefits yet.

Hey everyone, I’ve been tracking my sleep with my Apple Watch and noticed my breathing rate ranges from 7.5 to 33 breaths per minute, and my O2 levels drop to 90% at times. I’m extremely fatigued, a very light sleeper, and it often feels like I’m forgetting to breathe or gasping for air while being both awake and asleep. My mom has even said it looks like I’m hyperventilating while I’m sleeping.

I have major POTS (my heart rate jumps 20+ bpm just from drinking water), and I had obstructive sleep apnea as a kid, but we thought it was resolved after my tonsils were removed. Now I’m wondering if I might have central sleep apnea or something else affecting my breathing at night.

I asked for a sleep study, but my primary doesn’t want to order one since I already have about 10 specialists. I think she’s overwhelmed with my health issues. I have a new primary appointment for later this month. Has anyone else experienced something like this—especially with POTS or autonomic issues?

Hello, I want to go in for autonomic nervous system testing and i read i should stop my antidepressants and similar meds for 5 days. The thing is I've been taking the antidepressant for only 4 days and i was wondering if i should wait the full 5 days given I haven't taken it long enough for it to affect me? I just feel very bad without the other meds, it's urgent to go get tested and I'm not sure i can make it till the full 5 days. Thanks in advance!

I was an athlete most of my life. Prior to covid I was an avid gym goer and was in pretty good shape. But once I stopped going to the gym I developed severe depression and basically ate my feelings. A few years ago I started therapy and meds and am in a much better place now. I started developing dysautonomia about two years ago and am now at a point where I feel defeated trying to lose weight. My PCP essentially bullies me about my weight but provides absolutely no practical advice about how to manage it when my HR is up (it tends to flucuate with how my body is doing - its extremely high when I'm sick, low(ish) when ive had several days of rest and am feeling well, etc.) Ive also dealt with a lot of pelvic pain issues that are likely related to PCOS. I'm seeing my gyn soon to talk about PCOS management, but as someone who monitors their food intake to keep from overeating and who consistently burns 3,000+ calories a day just because my HR is always elevated with absolutely no weight loss, I'm not convinced that it will help. Has anyone else experienced this and had success in managing their weight? I've been trying to lift weights some and start going for short walks, but by the time I finish I'm absolutely worn out - and three months into diet and lifestyle changes I've gained 4lbs!

I have been diagnosed with IST since 2018. Besides the occasional flare-up, it's been well under control with daily metoprolol ER. The past week or so, I've had an odd flare-up? Idk. It started a few weeks ago, I got a cold and had vertigo with it. Thought things were fine, but then started to notice my sleeping heart rate was getting low. (48 was the lowest I saw it.) But I was feeling fine throughout the day, so I didn't really think about it.

Fast forward to this past week or so, I've noticed that I've just felt so off. Shortness of breath, anxiety, and just like this feeling that my heart is beating weakly? I don't know how else to describe it. I have not taken my metoprolol for 2 or 3 days now, and I'm still feeling these symptoms and this odd feeling of low heart rate and weakness. I've also had the vertigo come back or maybe just straight up dizziness? Things just don't feel right but my vitals are technically okay???

Now that I am on day 2 of no metoprolol, I've noticed more symptoms with orthostatic intolorance but when I'm in bed my vitals seem normal? I've done my bp and it's been normal or only slightly elevated. Heart rate has ranged from 60s to 100ish. Oxygen is fine. I've done ekgs on both my apple watch and my kardia device and they've all come back fine. So why do I feel so off?

I thought about going to urgent care or something but if all of my vitals are fine I'm sure it won't go anywhere. My anxiety is bad and my vitals barely even reflect that. I know I should communicate what is happening with a doctor and see what they say. Because something is wrong. I don't know what, but this is so unlike what I usually deal with and I don't know why I'm feeling like this.

I know ibogaine can be a hot topic and there is some evidence that shows great results for TBI’s. Which a TBI is what led to me dysautonomia. I don’t deal with POTS, but my nervous system does struggle a bit and I’ve had vestibular issues for 5 years.

Has anyone used Ibogaine, researched it, know anyone that has done it for TBI and know their results?

Or even share your thoughts!

TIA

Does anyone else get very hot extremities? My hands and feet feel like they're burning sometimes, especially when I'm doing something that makes me warm, like exercise, or in hot weather, or cooking, it even happens when I'm checking bathwater for my daughter sometimes if it's hot. It makes me think it's due to vasodilation and where the blood is pooling as I get that worst in my feet and that's where the heat is usually worst? They physically visibly go red too. Is this part of dyasutonomia or a separate thing maybe?

This was almost two whole years ago and I thought I was over it, ends up I hold grunges and I'm still mad about it.

Through my whole life my resting/usual heartbeat was around 60bpm (around 30-40 bpm at night, but happens that sometimes it was lower due in the day too), while some people found that insane I was told it was totally normal and harmless and that I just had a "athletic heart" that beats slowly to spare energy for when it needs it like during sports, etc. I was fine with it, really, I never cared that much and it never bothered me.

But ever since I developed dysautonomia from I think covid, my usual heartbeat is always 90-110bpm. It only drops lower around 70-60 when I'm asleep or laying down lazily (often after waking up).

I also have sudden spikes of tachycardia and heart palpitations when it feels like it skipped a beat or is just irregular. Also sometimes its not necessary fast but it's beating really HARD, like it's about to burst out, even while I'm resting.

Yet, during my 3 appointments it NEVER occurs 🤦‍♂️ nothing unusal other than my 90-110 bpm. I told them the whole story— how I used to have a really slow and calm heart and that now it's constantly beating fast. C'mom it's kind of a drastic change??? YET THEY STILL TOLD ME I WAS TOTALLY FINE!!!!

I really insisted that no, I KNEW this wasn't normal for my body, and that even though it didn't happen during the appointments I still had recurring heart palpitations and tachycardia. They "almost" refused to let me use a monitor to check, they made it clear that they didn't think I needed one or needed to get my heart checked again and that a monitor probably wouldn't beneficiate me in my situation as my heart was really strong and healthy!!! That if this kept happening and bothering me then we could try monitor it for a few days, but that for now they wouldn't give it to me yet.

It's clear that after 3 appointments they just weren't planning on letting me get monitored, and honestly? I was so pissed of and hurt with the whole situation I didn't even care anymore. I was getting WAY better after a flare up that got me bedridden for weeks so I didn't want unnecessary stress to mess up my progression. I just stopped getting checked and contacting them.

I still get the sudden spikes of tachycardia but they've been better, I have constant palpitations that come and go through the day, and my heart rate is still at 90-110bpm through the whole day. I just accepted that this will be my new "normal" heart rate from now on.

But I'm still really hurt and frustrated that they failed to acknowledge my worries and struggles. I REFUSE to believe such a dramatic change in my heart rate/beat is normal.

It really pisses me off that some doctors just don't care about their patients if they fall into the "harmless" category, even if there's clearly something wrong. They said it TO MY FACE that "if it was like 120-150bpm through the whole day, we'd understand there's something wrong. But 90-110 is still considered normal and harmless. Maybe your tachycardia could be linked to stress or physical activity? (After I repeated again and again that it happened even when calm and laying down.) We can't do anything else as you medically seem just normal and fine.for They could be AWESOME doctors or surgeons etc, but I've lost all respect I had for them after this. A doctor should listen to their patients and get them checked even if everything seems medically "normal", if you can't do that then don't be a doctor. I'm sick and tired of meeting incompetent medical staff.

(Just as an example, once I was a few 0.1% away from being considered deficiency yet the doctor didn't show me the blood test results and told me everything was fine and I wasn't lacking anything. There are amazing doctors out there and if you're one of them thank you SO MUCH for your hard work and for existing, HUGE respect. But I've meet so many stupid ones I'm losing fate in all of them.)

I’ve been off work now for the past two weeks after I went to the ER for symptoms and got a neurologist telling me it’s most likely POTS, CFS and a migraine disorder. Since then, I’ve been stuck at home for the most part resting and im going thru the short term disability process through my work.

I was just finally starting to calm down about being home and needing to be off for my health when upon talking to one of my coworkers today, she told me that one of our other coworkers who I thought I was close to, has been talking about me behind my back. I thought he understood my situation. But clearly not and he’s been complaining how I’ve “Already used all my sick days and vacation days this year.” And how “If I can be online on PlayStation, (cuz I added him on there), I can come to work. He also stated I played at like 4am which I only can play for about three hours from 6-9:30pm due to my eyes having issues. So he’s trying to make it sound like I’m just home for no reason when really, I’m sick.

Just hurts knowing it’s someone who you regularly talk to and hang out with suddenly not taking you seriously. I know I’m only 28, I know I seem like I’m “always sick”.

It’s because I am.

Heya I’ve been experiencing on and off dizziness, lightheadedness, palpitations, nausea as well as worsening hyperhidrosis and temperature dysregulation, amongst other things (fatigue is awful, chronic pain is more noticeable) since going into septic shock a few years back. My GP was questioning POTS, so referred me to a cardiologist. I ended up getting referred to another cardiologist (my first referral expired whilst I was on the wait list) and they did a 24hr holster monitor and a heart ultrasound. Apparently my heart rate is nothing to be concerned about, got diagnosed with a leaky mitral valve, got booked in for a 24hr ambulatory blood pressure. Got called in to see the cardiologist once those results were back. I’ve always had low BP, or lower end of normal. The 24hr BP showed my BP drops too low when I’m sleeping, and doesn’t increase too much throughout the day. The cardiologist recommended to increase my salt intake, increase water intake (already drink a fair bit due to kidney stones, also don’t add salt to food from advice from renal dieticians), and to wear compression stockings to try help increase or stabilise my BP. Also to try and move slower when going from laying or sitting to standing. Also to exercise more - which is one of the reasons the dizziness etc is so frustrating as they happen when and after I exercise. I used to do a lot of yoga, but that causes a lot of head spins, so I do more Yin Yoga and slow flow with moderations

So I didn’t really get given a diagnosis or name for what’s going on, just a whole bunch of things to do

I’m also waiting for a waitlist to open to see a GP who specialises in rare/invisible illnesses, as I also finally got a diagnosis of joint hypermobility

So I finally saw a specialist, I’ve been suspecting dysautonomia, pots specifically. I had already done a tilt table which was poorly assessed and I went undiagnosed. The specialist said it appeared to be more my blood pressure than heart rate that was the issue, and said it’s more likely neurogenic syncope. Now the thing is I’ve never fainted before, I’ve only felt like I might when episodes hit. I also have symptoms more on the constant side than episodically I think? I get lightheadedness, nausea, hot flashes, blood pooling, and sweating upon standing. As well as worsened stomach issues, problems sleeping, headaches, and adrenaline dumps. Does anyone with neurogenic syncope experience this? I’m going to be taking mitodrine to narrow a more specific diagnosis.

To start off, chronic illness runs in my family. My mom has gastroperesis, hypothyroidism, candida, fibromyalgia, and many other mental disorders. I get sick a lot, wether that be a virus, or i just feel really really sick for no reason some day im bed ridden.

About 5 weeks ago, i had an incident where i woke up in the morning to get ready for school and i guess i was standing too long whike doing my makeup and that was the closest i had gotten to passing out, right before throwing up. This has happened a few times in the past but i thought it was anxiety. It doesnt happen anymore.

I went to he doctor for nausea, rapid heart rate and heart palpitations as well as dizziness. She did a poor mans tilt table test since it was just my GP. My heart rate went up 32.

I did another one at home since i didnt think the one at the doctors was accurate. I used my omran blood pressure cuff. My resting heart rate was 89 resting and got to 149 standing up. Which is 60. But normally itll only get up to 125 or less.

I just feel like maybe my blood pressure cuff was wrong or something, and that im just overreacting. Cause i see other people who pass out once they stand up, and they just seem so much sicker than i am and im scared im just gaslighting myself because all i want is answers.

Hi guys I hope this is the right place to post this. If not could someone point me in the right direction.

So I don’t have any diagnosis I’m just looking for advice. I will be calling my doctors on Monday.

Lately I’ve been experiencing extreme lightheadedness upon standing up (from either lying or sitting) or sitting up from lying down and also from bending over to pick something off the floor.

My blood pressure is usually on the lower end of normal 110/60-120/80 but it’s never caused me any issues until recently where the lightheadedness has become so intense I’m stumbling and unable to walk straight for a moment or two.

I’ve also been experiencing increased heart rate while at rest (iwatch notifying when I’ve been inactive for over 10 mins and heart rate is over 100bpm) it also happens more often after I’ve been eating but can happen on its own.

Has anyone had any experience with this or have any idea what it could be ? Like I said I will be calling my doctor Monday just looking for advice/reassurance in the meantime.

Thanks.

I've had dysautonomia for 20 years. My endocrinologist asked me if I had ever checked my blood sugar to see if that was the cause. I said no, so she called me in a meter and the whole monty crew.

That shit hurts. My poor lil fingers are so damn mad.

New respect for those who are diabetic.

Total side note: level has been 78, 84, and 124 (after eating)

21/F. I have been on beta blockers (Bisoprolol) for almost a week which have been amazing for my heart rate and has gone back to normal almost already, the issue is in day 4 I had two episodes of chest pain, palpitations and pre-syncope but also experienced a tight throat feeling. My heart rate stayed normal this time too. I’m wondering if I have the right diagnosis as my understanding is that the pain associated with Inappropriate Sinus Tachycardia should go away with a reduced heart rate? I wake up in the morning feeling perfectly okay, but then by 4pm I start to go downhill and if i don’t have an epsiode I’m stuck with pinching and sharp chest pains left and right, and pain in my lower ribs. I’ve still been light headed and also experiencing vertigo, the colours I was experiencing with migraines have settled but I keep getting sharp pains in my head…

I was really happy thinking I’d got to the bottom of this but really unsure as to what’s going on.

Im not sure how to get this under control but it's probably going to kill me one day. When I encounter a highly stressful situation, my heart rate will SKYROCKET and I will just about faint, my muscles will be tense and I can't walk. It takes hours, sometimes days to recover from even a short episode. For example the other night, I thought someone was breaking into my house. My heart rate shot up to nearly 200 in the matter of seconds. I was asleep and my heart rate is a healthy 50-60 when asleep. It only lasted about 15 seconds before going back down to 150 then 120 and hovered around 100 for the next several hours. Does anyone else experience this?

You’re awake but exhausted. Adrenaline surging out of nowhere every time you are about to fall asleep. You’re nauseous, sweaty, shivering/vibrating. Heart beating hard, maybe even doing some palpitations. You’ve done good sleep hygiene and routine, you’re cozy, yet your body won’t let you go into actual sleep.

What do you do? I’m 6mo post partum and usually get like this the second night after a bad night of sleep when I’m up with the baby. My only solution has been benzo (Ativan) which works every time, but I’m out and don’t necessarily want to get dependent on them.

What else works? Or do you just ride it out? I did that one time and legit didn’t get any sleep at all….

Hi all - first time reddit poster, long time Internet lurker. This is a resource I've come to often to see stories like mine and I just need a quiet place to check-in about my own journey.

I'm 33 years old and living in Brooklyn. Since about 2018, I've had on-and-off issues with fainting, fatigue, chronic pelvic and neurological pain, tremor in my legs, back and hands, and other things. I'd have these flare ups once or twice a year, sometimes landing me in the hospital, with no answers. Always told to follow up with my gynecologist about endometriosis, who always told me she didn't think that was the case. It was all infrequent and manageable enough that I just continued on.

In October of 2024 it happened again - woke up with severe pain in my left side and pelvis, wondered if I had a cyst rupture or something. ER visit showed nothing serious and told me to follow up with gynecology. But this time, my symptoms didn't subside on their own. It all just got worse. I started having debilitating tremors and heart palpitations, frequent fainting episodes, chest pain in addition to the now daily pain in my side, waist and legs. I hardly have the energy to climb the stairs to my apartment, let alone go to the laundromat, grocery store, or the gym.

The stress of not knowing has been agonizing as someone who has lived with OCD all my life and generally manages it well after years of practice and learning. And doctors love to just call out stress and anxiety and send you home. I've had my mental health condition my entire life. I've worked my ass off to understand it, manage it. I've gone through highly stressful times in my life without these physical symptoms. I know what is happening to my body now is not simply stress.

After more specialists than I can count and embarrassing ER visits where I'm told I'm fine when I can barely stand, I'm now waiting on two critical appointments: a gynecological surgeon to discuss a laparoscopy to diagnose endometriosis (my mother and both grandmothers had it), and a cardiologist to discuss POTS, which wasn't something I knew about until an ER doctor mentioned it to me.

But now I see all these stories of doctors thinking these are "trendy" conditions that people are diagnosing themselves with and I just don't know what to think or feel. All I have is that in the last six months, my body has felt like it's gone completely haywire. I was a strong, active woman who worked out, had a happy social life, and successful career. Now, if I can shower and answer my emails, it's a successful day. I ask myself if Long Covid is at play, since I had the virus about a month before this all started, though I thought I had recovered fine.

My biggest fear is dying (which should be obvious, but it took me a while to learn I actually was genuinely scared of this). My second biggest fear is never finding out what is wrong with me and it completely ruining the life I've built for myself. I now see things about the combination of POTS and endo being brutal and I just want to believe it'll be possible for me to have a semi-normal, independent life again. I just want to be better. I just want to not live in fear of what new symptoms every day will be, feeling like my body is a ticking time-bomb. Like if I don't find the answer - know what wire to cut - then I'm going to lose everything.

If you read, thank you. I don't know what I want out of this other than some hope that things can possibly get better.

okay, please tell me I'm not the only one who pushes under their left abdomen and feels a pop or click.

I've had this for years. It tends to happen when I've eaten or I'm backed up and bloated.

Keeping a long story short, we had black mold all throughout my old house (moved out 10 months ago) unbeknownst to us (due to negligence of a family member) and were exposed for nearly 4 years.

My symptoms started 4-5 months after the initial mold exposure and got worse over time. The research I’ve seen says that mold exposure typically is more respiratory, according to “conventional medicine.” There have been new developments in the role of mold exposure and the subsequent biotoxins and physiological changes to the immune system though, but have not been widely accepted by larger medical institutes yet.

So, my question to Reddit is, does anyone have any anecdotal stories regarding this type etiology of dysautonomia?

Hi all. So I have had (assumed) dysautonomia all my life. (But I didn’t know what was likely wrong with me until I did my own research) I began feeling sick in elementary school. All the weird symptoms came and went. And over time they have gotten worse I am now 34 with 4 kids of my own. And I struggle with every issue (I know you all understand) My main issues this last few months have been weakness anytime I exert myself in the slightest. (I don’t lay around) but if I do just a little more or extra- I feel my heart rate increase just like running up my stairs I go from 80bpm to 150. It drops right away again but the sick feelings I get from that- the weakness and tremors. Hello legs. It’s awful.! I can’t do anything without feeling unwell. I’m always nauseous and have over 50 other strange symptoms that just cycle. I get stuck in fight or flight a lot so I lean towards wondering if I have hyper-pots.

But I can’t get a dang diagnosis! My PCP referred me to cardiology as I do have PSVT (can be 250 bpm) as well. And haven’t seen a cardiologist outside of the ER.

Well the whole cardiology office DENIED me. Said that since my referral said possible POTS. They do NOT see POTS patients AT ALL. And that my symtoms can be managed at home. WHAT!!! I don’t even have a diagnosis I haven’t ever had a TTT.!

I called to ask them why they won’t see me being that I don’t have any diagnosis. And they said since my 2 day holter monitor was relatively normal and indicated dysautonomia (heart rate fluctuated from 40 bpm to 190 bpm) and I never exercised at all. They said they can’t see me.

I wanted to cry. I did cry. I was so angry. I told the MA on the phone that I guess I’ll just end up in the hospital because they won’t even give me 10 minutes to have a consult!

Has this happened to anyone ???