Hi! I’m newly diagnosed with autonomic dysfunction (dysautonomia). I’ve had some symptoms since a kid, but it wasn’t until I got the flu in January of this year that it became so noticeable I had to start using mobility aids and went to see a cardiologist. I mean I nearly fainted taking a shower. At that point, it’s not something I can shove off as being out of shape. Now I know my aversion to exercise is actually because it makes me winded within 5 min due to dysautonomia and not because I’m lazy.

Did anyone else have this same issue?

I’m wondering if having the flu, taking Tamiflu and already having moderate dysautonomia undiagnosed was just a bad soup of a combo or if the flu medication alone did it or what. Did anyone else face a similar issue with worsened symptoms after the flu, especially strain A.

I appreciate it. It’s been a life altering experience and I’m still processing it all.

I mean, how can you prevent this from happening if you do get severely ill? What did you do afterwards? Does it go back to “normal” after a while? I need some answers and my current cardiologist is very limited in his knowledge.

Isn't one of the main causes of dysautonomia ( high heart rate when standing, dizziness etc etc) come down to an overactive sympathetic nervous system?

They need someone who can work 40 hours a week and come into the office three days a week, neither of which I can do right now; my doctors have explicitly said it isn't a good idea anyway, and I won't argue with them at this point. I don't really disagree, I'm exhausted. It wouldn't be good for me to be behind the wheel anymore, and even if I could I can't really get through an 8 hour workday.

I don't know how to feel about this.

On the one hand, this is a huge blow to me and my husband's financial stability - we both make about the same, so now half of our income is about to be gone. Unless something changes quickly, we'll need to move in with my parents - they're already aware of that possibility and have told us we are welcome, though it's still humiliating. I'm likely going to have to apply for disability or unemployment or something, just so we can keep going. It's going to be rough for a while.

On the other hand, it's so relieving to know I don't have to worry about work anymore and I can just focus on going to physical and aqua therapy, taking my meds, doing my exercises, and sleeping when I need to. I feel horrifically guilty about this, because it puts so much on my husband, but I think at this point we have no other choice.

I'm so tired, guys. I just got diagnosed with vagal dysautonomia and possible EDS last week and already I feel like my life is just falling apart. I cried so much last night. I don't know what to do. I'll just keep taking my meds and doing my therapy and stuff, and hope the rest of it works out I guess.

I'm so tired.

So I’m currently in the diagnostic process of being confirmed whether or not I have POTS, CFS and some migraine disorder. This is not the first time I’ve officially fainted, but today I fainted at home upon trying to walk to my kitchen from my room. Woke up in my living room and had to take about 15 minutes before I could stand up and not fall again. I managed to get back to my room and I’ve been resting since, with a killer migraine. I didn’t hit my head on anything.

I’ve been dealing with worse full body tremors these past few days but once I fainted, I’m noticing it’s a bit worse. If I move my hands they shake, my legs shake, and I get spasms in my chest muscles.

Since I’m new to the pots life, does anyone else feel similar after fainting? I’m currently resting and laying down.

Hello! I am at the start of my research for dysautonomia and I keep running into a lot of stuff I don’t know, like acronyms for things. Some I have been able to figure out and some not so much. What are the top 5 resources that you found helpful when starting out? They don’t have to be about acronyms or initials for medical conditions but those would also help. LOL! Thank you if you have the energy and inclination to post!

So I had something terrifying happen today. I felt off last night, I had to fast for 8 hours for a blood test. I struggle with low blood sugar feelings and symptoms, so even 4 hours in I was struggling, I was getting pins and needles feeling, etc. It leveled out at the end. After the blood draw I came home and had a kolache and a granola bar.

I laid down, I woke up 90 minutes later with acid reflux coming into my throat and burning my throat, it set off my hiatal hernia, I sat up for a bit let it settle and laid back down. I woke up 2 hours later, felt ok for the first 15 seconds, then I suddenly had the worst pukey feeling I've had in my life, I jumped up for the bathroom, but then I started going numb all over, by the time I got to my parents room I basically had to throw myself onto their bed and grab it, the feeling like I was gonna lose consciousness lasted 60-90 seconds. I felt strange laying down for several minutes after, sick, head tension pain, very very weak, skin felt weird, pains all around my body.

Its been 4 hours now, I still feel very weak, very..off..like my head is off, I feel very queasy. I just left the urgent care, he saw nothing concerning, said my vitals felt good, nothing that worried him, he said its most likely the effects of the fast on my body, not eating quite enough after and some type vasovagal thing when waking up, but I dont know..I dont know what caused that pukey feeling. I dont think it was vertigo.

During a POTS or ME flare, I can barely speak from air hunger, or struggle to simply compute a sentence. Yet, there will be people who try to ask me about what's happening to me, or the validity of my symptoms, meanwhile I am suffering. They will be confused and frustrated that I'm seemingly "refusing" to be responsive.

I need an easy way to shut these questions and comments down, for the sake of my body, as my heart palpitations worsen from getting amped up trying to figure out how to respond. A quick explaination that gets to the point.

Are there any you use?

Has anyone in here taken propranolol and had a noticeable increase in blood pressure instead of a decrease? I’ve told my PCP, psychiatrist, and another doctor that this was my experience taking propranolol and they all said that isn’t a normal reaction to the medication as it normally lowers blood pressure. I’m just curious if anyone in here has had a similar reaction and if so, what you are taking now? It did help with some symptoms, but made other symptoms worse, so I had to stop taking it. I’ve done some research and came up with some ideas on why my body reacted like that, but I’m wondering if there might be some people in here that have experienced the same problem.

22F. Diagnosed with IST and POTS for nearly a decade. Woke up today to find out the DMV thinks I’m unfit to drive!? SO incredibly confused as to why I’m even receiving this notice, but it states that the department is concerned about a neurological condition. I can’t even pinpoint who would’ve filed a report as my specialists have been happy with my progress, my condition is stable, and I’ve only been steadily improving. The only thing I could think of is that I’ve gotten a temporary parking placard 3 consecutive times and my doctor has noted POTS on that? I sent the paperwork over to my doctor, but has anyone dealt with this before? Any advice? What should I expect? Should I get an attorney?

Edit: spelling.

Hi Guys,

Has anyone found a dysautonomia specialist in the UK who is good?

I’m looking for someone who takes private patients as the NHS waiting times are dire

Any advice would be really appreciated as I’m very new to this medical sphere! Thanks 😊

Are low blood sugar sensations common with this? I've dealt with low blood sugar sensations daily for 7 years, starting usually around 3 hours after I eat, no matter how much I eat. (Well, sooner if it was something small, 3-4 hours if it was a moderate to large meal). I've tested my blood sugar over 200 times, it has always been in the normal range which has puzzled me, made me wonder if its something either to do with POTS or hiatal hernia.

I am currently around 4 hours and 30 minutes into an 8 hour fast for a blood test and im already struggling with feeling very sick, having skin feeling tingly/numb or like its falling asleep easy, usually this happens a little later in the fast, and the numb/tingles are a little more intense than usual which really bugs me.

I started taking Clonidine twice a day about a week ago. (I strongly suspect hyper POTS.) So far it has not made a difference in my heart rate. I was hoping it would help with my tachycardia. How long does it take to see improvement with Clonidine? Would it be working by now or do I need to give it more time?

I know POTS is always associated with tachycardia but what about bradychardia?

Almost every afternoon or evening, or both afternoon and evening, I feel heart palpitations and my hear rate drops to about 35 and then will remain in the 40s for up to two hours. Then other times, I will be sitting in church pretty relaxed and my heart rate will be in the 110s-130s. My typical blood pressure is about 80/50 and even as low as 70/50 or 40. I am getting a tilt table test at the end of May but I am not sure if this is characteristic POTS?

If you were able to do so, what helped? How long did it take?

I realize it may not be possible but it doesn’t hurt to ask.

Hi- I haven’t officially been diagnosed but I’m pretty sure I have this but I’m in some type of flare and I can’t tell if this is what’s causing it or if it may be something else.

I’ve been to the ER twice now & everything comes back “normal” but I literally feel like I have some type of infection or dying. Idk how else to describe it.

last thursday I had really bad right shoulder and neck pain - i thought maybe i slept wrong or had a pinched nerve so I applied a lidocaine patch and although the pain lessened I suddenly started to feel ill.

Here are my symptoms: - nauseous, off, weak, very fatigue, chills, right side neck pain, head feels warm to touch, feel hot and uncomfortable when i lie down, sweating when sleeping, low grade fever, metallic taste in mouth, cold hands and feet

Just got another test back (I do frequent blood tests due to dysautonomia messing with ALL levels) and I have a question:

Anyone else notice that their Absolute lymphs continue to elevate? Mine went from 2.9 to 3.9 over the course of one year, as have my EOS (different numeric) (test name for blood cells). My Dr said she wants to keep an eye on that. But my total white blood cell count is perfectly normal.

Lymphs are what appear to protect against infection, be it bacterial or viral and certain types of cancer....but I have no infections,nor do I have any discernable or detectable cancer that I am aware of.

I'm just curious if anyone else has also been having blood tests where they notice this?

Please let me know if I'm not allowed to post this but this was my experience at the cardiologist today being tested for POTS and other dysautonomia symptoms.

I went in for my stress test that they told me involved the treadmill test, ekg, ultrasound, and another test that they didn't give me the name.

The tech takes me to the treadmill room and the front desk lady decides to join and say she's going to pretend to be a patient, never did she introduce herself to me just sat there watching.

I didn't make it past 5 minutes on the treadmill because my hr was past my maximum hr of 164 for a consistent period. I get off feeling extremely faint and the tech does the bp and hr rate thing for 6 minutes. After that he starts talking to the front desk lady about the test saying I had leg pain and that's one of the reasons we had to stop testing, which I never stated and not once talks to me about what was going on.

They send me to another room where they told me to take off my socks and shoes for the other test. The tech leaves and tells the front desk lady to call if she needed any help. She turns to me and says that she's never done this before and doesn't know what's she's doing. I'm thinking HUH why is no one helping her but I don't say anything because I just felt helpless. She then proceeds to tell me she hates feet and doesn't want to do this but was told to.... she puts the blood pressure cuffs on both my ankles and arms and pads on the bottom of my feet. I now know it was an ABI test which I believe doesn't test for pots but I could be wrong.

During one part of the test she says I need to do a deep inhale and exhale for 30 seconds but that she's not going to tell me to do that because 30 seconds is too long and she doesn't want me to die? From exhaling for 30 seconds? Anyways an ABI test usual uses an ultrasound to look at blood flow of the arteries during it but she doesn't do that either. Nothing about this visit was professional and I'm just here 3 hours later sitting dumbfounded at all the things that happened that I didn't even mention. I'm trying to see if I could see a neurologist sooner for a table tilt test. I just needed to rant/vent whatever.

Hello,

On march 31 i had tonsillectomy. Had general inhalation anesthesia. Left hospital the same day at evening. While i was in hospital, i had like 3 packs of IV fluids + diclophenac.

Funny thing is that i used to take about 23 mg of metoprolol, and now after surgery i reduced it to 11,5 mg. Because of my pain from tonsillectomy, i take 2x nimesulide a day. I dont even wear compression socks. And i feel completely fine? My blood pressure is stable, my heart rate isnt jumping, no migraines. Yeah i feel kinda weak, but thats normal from surgery? Its just so weird. Not to mention, march 30 was the last day i smoked cigs, and i dont feel bad? The last time i quit cold turkey i was like zombie.

I read that anesthesia can make worse or better. Questioning myself if its anesthesia, IV or painkillers? Anyone experienced the same thing?

Hi I’ve got orthostatic hypotension and have issues with fatigue presumable related to heart rate, low blood pressure, and as of the last few months possibly low SpO2 issues.

My heart rate shoots up when my blood pressure drops, so an elevated heart rate for me is a good indicator that my blood pressure is dropping and I need to take action. I take midodrine to help with low BP but it doesn’t seem to consistently work.

I need some sort of way to monitor my BP and maybe send me alerts if it is becoming excessively elevated so I can do something about it before it gets worse and hopefully keep more steady.

I get overwhelmed when trying to figure out what smart watch to get to help monitor my vitals!

Recently I did get a Fitbit 6 and have been wearing the past two days but I didn’t know you had to pay an additional $80 to get some premium subscription for certain things (still not even sure what those certain things are!). And I do not think it can send me alerts about my heart rate.

I’ve got a long list of chronic conditions and medications to manage - and really could use something to help monitor. But I don’t want to pay for additional services or subscriptions. Does a reliable wearable like this exist?!?

Thank you in advance for any advice!

National Dysautonomia Research Foundation

American Autonomic Society

On second site, scroll to bottom to find where it says “Patient Organizations” AND “Professional Societies” because both have listed doctors on their sites, or lists of other resources on their sites as well aka RABBIT HOLE to find doctors all over the world.

Just be forewarned that some these sites’ info may not be up to date but I always think it’s worth the call, you never know who has an answer to your question.

I pray it’s useful to someone who needs it 🙏

(This sub doesn’t allow pics or post the graph!)

This won’t surprise any of you, but it really helped me describe the symptoms to my husband and parents.

I’m currently in a “flare up”. Mild, but still here. I have TachyMon on my Apple Watch (turns HR monitor on workout mode) and captured my 20 minute shower at 130-150+ bpm. I pulled it up in the app chart and took a screen shot. And texted this:

“Wanna see something crazy. So I have an automatic system flare up today. (Inserted graph)

This 20 min window is where my heart rate was 130+. This was a shower. That’s it. Hot water reaction lol and the weirdest thing is I’m not like breathing hard! I breathe regular but my autonomic system is telling my heart to beat fast. It was the perfect data capture lol so this doesn’t happen every shower. Just on a sensitive autonomic day. My body feels like I just ran sprints at the gym so now I need to rest my body for a while - even though it was only a shower”

I hope this gives someone another idea of how to convince others that this shit is real in a way they may understand - HR elevation data.

I am very familiar with POTS treatment as I have it. I however just did a poor man’s TTT on my friend and her heart rate jumped the 30+ for pots etc… I told her to drink electrolytes and eat salty snacks and she mentioned salt makes her BP skyrocket so what’s the best treatment options until we can find her an actual specialist

(title) I wanted to know. I recently had 2 readings. 1 was 93 oxygen and 135 bpm after a shower and the other one was 91 oxygen and 125 bpm. I know my ox was low and my heart beat was high.

*I will speak to my docter!

*I am not looking for Medical Advice. I am just CURIOUS. :)

I can't play any video games I enjoy anymore without my symptoms acting up. I'm honestly sad as this is one of the only hobbies I can do without having to physically strain myself and causing a flareup.

Have any of you found a way around this? FYI, I haven't gotten a diagnosis yet, but I am working on that right now.

I had my tilt table test today. I was diagnosed with POTS and NMH (neurally mediated hypotension). I knew about the POTS but I hadn’t even heard of the other one. The tilt test really made me feel face to face with disability. I’ve had fibromyalgia and hyper mobility for years, I’ve even been looked at for lupus. But this really made me feel vulnerable in a new way. I’m only 5 hours from passing out in that test and I’m still trying to process how intense that was. I experienced full syncope within 15 mins of them tilting me up and that just feels crazy, 15 minutes of standing could put me down so severely.

I don’t know what will make me better because I have so many diagnosis’s and I feel a little hopeless. I always keep my head up but today has shaken me to my core. I still feel unwell, light headed,nauseous, and my legs still haven’t recovered proper circulation. I feel even more desperately attached to my remote job because there is no way I can work anywhere else. I am shook.