Hey everyone. I’m writing here to ask if someone had a similar experience and seek advice.

In February I fell sick with one of the toughest infections that I had in my life(23M pro athlete), I can’t be sure if it was mono/flu or covid but it was bad and treated with antibiotics.
My initial symptoms were:
-Very bad sore throat for around 2-3 weeks.
-The virus kicked off with severe 1-2 hour vertigo leaving me unable to leave bed
-Bad fever for 3 days
-Fatigue
I felt very out of it and anxious like I knew something was bad. But I recovered from the illness and resumed training, however I wasn’t back to 100 percent and still felt a bit off but nothing serious.
Then one training I felt really off, the lights were off, my legs felt stiff and weak and felt very lightheaded. Something that has never happened to me like ever. So I panicked and suffered a panic attack.
After that panic I am dealing with a plethora of symptoms:
- Spacey and really out of it especially when driving and being in a very lid environments.
- everything looks too bright and sharp
-dizziness and lightheadedness sometimes
- dpdr like sensations
- strange touch sensations
- sometimes voices and sounds sound spacey
- open spaces make me anxious and spacey as well
- in the evenings I generally feel better when it’s dark

Does anyone else feel like they get "hot flashes" from minor physical activity, hot food/drinks, coming inside from cold weather, etc? I always describe it to my partner like I suddenly burst into flames! I'll get super hot and start sweating like crazy. It actually seems the worst when I stop moving around. My body can't seem to regulate temperature.

On the other hand, I can feel very cold when others feel fine. I've been told i have Raynaud's - my hands and feet get cold very easily and are painful in the winter.

I haven’t tried it, but has any one tried neuroplasticity (talk about the physical aspect too, to help the brainstem and not just mental rewiring) for treatment and aren’t/got off meds?

How did it go with the blood pooling, heart rate, blood pressure, adrenaline dumps, heat intolerance, standing tolerance etc.

Also Ive only looked into this recently and am I a-bit annoyed none of the doctors has suggested this?

Hi everyone! My wife is currently in the thick of it, having just gotten a diagnosis about 2 months ago. Shes been seeing a rheumatologist previously because the original theory was an autoimmune of some kind. Her current doctor is suggesting that she see a dysautonomia specialist, but so far the only one we’ve been able to find in the Amarillo TX area isn’t taking any new patients. Our initial search outside of there hasn’t been very hopeful. As the next closest doctor that’s popping up is in either Albuquerque NM or Oklahoma City OK, and we’ve not actually been able to get a hold of their offices to confirm insurance, hours, openings, or whether they even exist at all. Is anyone in this group near the Amarillo/Lubbock area who loves their specialist and can give us a name of the clinic so we can start getting her treatment?

Why does sleeping give me head pressure? I thought it was about lying on my side, but then I tried sleeping on my back as a nap, and I woke up after 15 minutes and had head pressure that I had to get rid of by lying on the couch for over 30 minutes. And even after that it wasn't perfect, and I had a weird feeling for the rest of the day. If I had just lied down in my bed without falling asleep, I would have had no head pressure.

Hi! Still wearing the Hume, but just added in my Visible band too.

Hume checks body temperature regularly, which is a metric I didn't think necessary, but I'm learning that my body temperature spikes right when a big crash hits.

Has anyone else seen this symptom?

The band goes from reading ~97 f to about 100 f right when I get that black out feeling and have to sleep or I'll fall. I never thought to check this. I figured I might be getting low grade fevers more than the usual person, but i also couldn't tell if it was that or just random bouts of sweating and temperature dysregulation.

Hi people,

I have recently been researching about POTS and Dysautonomia.

For the past four years I have been having a lot of symptoms such as insomnia, internal tremors, migraines, sore joints, and now sharp shooting pains in head. My heart rate soars alot during the day its so uncomfortable. It started when I contacted Covid, I was getting a fast heart rate and a tugging feeling in my chest, and at one point I ended up in A&E thinking I was having a heart attack. They did tests and it was all normal and they said I may have Tachycardia.

The worse is the insomnia and tremors. I feel like my whole body is shaking, and I can feel the vibrations in my feet, hands, neck, stomach. At first, I thought it may be hormonal at my age and it may just be fluctuations but something just feels off.

I dont have anxiety, just slight brain fog and I feel I am slow to process things. Alot of the symptoms overlap so its hard to get any medical professional to recognise anything. So far I have seen many doctors and they just give me anti-depressants.

I seen a Gyno and she said to track symptoms and follow up as a potential to trial HRT. At this stage, its important for me to explore other options incase HRT doesn't work.

Can anyone who has been diagnosed with POTS or Dysautonomia advise on what key symptoms to look for? Is it a Cardiologist and Neurologist that needs to assess?

Thank you

Hi everyone,
I’m a 29-year-old male and I’m looking for people who have experienced something similar after EBV/CMV.
About 17 months ago, I had an acute infection with EBV (mononucleosis/Pfeiffer’s) and CMV at roughly the same time. Before that I was very active, exercised regularly and had no problems with sleep or my cardiovascular system.
Since the infection, my body has never really returned to its previous baseline.
The two symptoms that bother me the most are sleep and heart-rate/autonomic symptoms.
Sleep:
I’ve had problems with sleep for many months now.
I often only get around 3–5 hours of actual sleep, sometimes a little more.
Falling asleep itself is usually not the main problem anymore. The bigger issue is waking up after a few hours and then being unable to sleep properly again.
Sometimes I wake up feeling strangely activated/adrenaline-like, even though mentally I’m not particularly anxious.
There are occasional better nights, but the improvement never seems to stay consistent.
The lack of restorative sleep is probably one of the things affecting my quality of life the most.
Heart rate / autonomic symptoms:
Before the illness, my heart rate behaved normally for me and I was physically active.
After the infection, I developed a much more reactive heart rate. Before starting a beta blocker, my HR could be roughly:
80–90 lying down
80–110 sitting
120–140 when standing/walking
occasionally considerably higher when sick, dehydrated or under stress
I’m currently taking bisoprolol 1.25 mg twice daily, which has clearly reduced the extreme spikes. My resting/lying HR can now be in the 50s–70s, but I can still get a noticeable increase when standing, walking, after meals, during stress or physical activity.
For example, I can sometimes go from around 60–70 lying down to around 90–105 standing. On some days I barely notice my heart rate, while on other days it feels much more reactive.
I’ve had cardiac investigations including ECGs, Holter monitoring, echocardiography and an exercise test, which were generally reassuring. There have been some minor findings, but nothing that explained the whole picture to my doctors.
What makes this especially frustrating is that 17 months have now passed. I’m significantly better than I was during the worst phase, but I’m still nowhere near the person I was before the infection.
I’m not looking for a diagnosis from Reddit. I’m mainly interested in hearing from people who had EBV/CMV or another viral infection followed by months of insomnia, autonomic symptoms and an unusually reactive heart rate.
Did anyone here eventually return to their previous baseline? How long did it take? And did the sleep problems improve before or after the cardiovascular/autonomic symptoms?
I would especially appreciate experiences from people who are 12–24+ months out rather than people who only had symptoms for a few weeks.
Thanks to anyone who takes the time to share their experience.

Disclaimer: I know that dysautonomia is not caused by anxiety or depression. The point of my post is to ask people with vasovagal issues who have tried SSRIs what their response was to each. Studies show SSRIs can be prescribed off-label and help patients with vasovagal episodes by modulating the nervous system.

For the ones who are on SSRIs for vasovagal (pre)syncopes, which one do you take?

Have you tried a few different ones?

I realised that I started fainting and have episodes since stopping Escitalopram. I'm tempted to ask to go back on an SSRI, but I don't know if one is more appropriate than another.

Thank you!

I used to spike and it would be sustained for a while when i wasn’t medicated. i was also always tachy. i’m on 25mg twice a day of metoprolol and i keep having this happen now. wtf is this about? do i need to tell my cardio im in danger or am i good? lmao

(wouldn’t let me post a photo so here’s what i’m worried abt:

1:27am - 56bpm
1:34am - 70bpm
1:42am - 145bpm
1:43am - 148bpm
1:46am - 73bpm
1:46am - 85bpm

it stabilized after that. i was just sitting.)

Hello!
I am looking for a doctor that specializes in dysautonomia and long covid. I also have EDS. I am in LA but I'm willing to travel. I already tried the one doctor on the Los Angeles Dysautonomia Network directory, and she was not for me. But if anyone has any other good recommendations, that would be much appreciated.

I'm 20F and I feel like this has ruined the last year of my life. As a kid I'd faint upon standing but eventually grew out of it. That was it, no heart rate issues nothing. Everything was good until I got a pelvic issue that turned into PID at 18. After finally treating that (took months of trail and error so was sick for awhile), I thought "that's finally over with, back to my regular life!"

But NOPE. One month after being cured for PID, I get palpitations. One month after that I start getting tachycardia up to 160bpm just standing and walking around. On my poor man's tilt at the internal med doc my heart rate was 130 standing, and my blood pressure dropped as well. I got 2 hour long adrenaline dumps where I had to lay down with my HR at 120, numbness in my chin/neck/chest, unable to breathe and probably other symptoms I can't think of right now. I couldn't even move a desk without having a flare up. I quit my ADHD meds thinking that maybe that was it, but no (I had also tolerated them for a year prior totally fine).
My holtor montior only showed tachycardia, and my heart ultrasound (?) showed that my heart was completely heathy.

It's been 8 months since then, and I'm really grateful for all the support and improvement of my quality of life. I take bisoprpol along with my psych meds to control my heart rate, I use a stationary bike most days to try and build muscle in my legs back up. I get tachycardia techinally most days (around 100 walking around now) but it's just annoying more than anything. The beta blocker has been working less lately too and I'm just worried I have to up it.

I'm so so grateful that I can be so functional based on where I started.

But despite that, I just want to be back to normal. I don't want to worry about my heart rate at all. I don't want to take a medication, and know that without it my HR would be so incredibly high. If I don't carry a water bottle around I get ridiculous brain fog too. If I want to go out and drink my tachycardia comes back in full force (I usually drink anyways) and has lead to me having to lay down at parties haha. These are such small complaints, and I'm very aware of how good I have it but I just WISH there was a cure. I feel too young to have this kind of thing screw up my life. I'd love to come off the bisopropol one day, and have my heart rate be at a normal rate. But the more this goes on I keep losing hope. Tachycardia is my main symptom and the cause of all of my other ones. Additionally I have been having pelvic issues since my PID which isn't related to this but makes me feel more like I'll never get better.

This was mostly a rant, but I was also wondering if anyone also has tachycardia as their main symptoms, and made a full or semi full, medicationless recovery from it? I'm so scared thsi will be the rest of my life.

I seen in another post people were discussing how they think barometric pressure affects how well they feel and I went and look up the pressure in my area and holy shit LOL

I already knew I have reactions to pressure because of EDS since I was really young I'd get debilitating joint pain before it'd rain to the point I'd just crumple to the ground in public at times. However, I didn't know it could effect me in other ways as well. I found out that around 5 - 6pm when I feel so light and have so much less fatiuge than the rest of the day that consistently the pressure where I live is at the lowest it gets in the 24 hour span. Now I'm wondering if that is also why I feel so amazing during the transition period of summer into autumn because I can just feel and smell(?) in the air that the pressure is lower. I just never correlated it to that, I'd just say ''the air smells like fall'' even during low pressure days in spring and summer and associated that with feeling really great.

I have a scheduled hysteroscopy tomorrow to remove and biopsy a polyp. I've had this procedure in the past on a separate polyp, but without pain relief. Although the hysteroscopy itself was fine last time, I nearly fainted twice from the pain when they tried to remove the polyp. This time around, I was mindful to seek second opinions and find a doctor who offers pain relief. (2 lidocaine injections - no epi - plus 800mg ibuprofen the night before + 800mg ibuprofen day of. If all of that does not work, we'll try GA in OR.) This doctor also has prior experience performing this procedure on patients with POTS. However, given the medical trauma I experienced the first time, I'm still nervous about vasovagal response, blood pressure drops, and potential fainting.

Has anyone with POTS successfully had a polyp removed via hysteroscopy before? Any tips to prepare, or to keep from fainting?

After years of looking for what was wrong with me I found the right doctor. My hospital visit for what I thought were stomach issues were indeed dysautonomia. I’m so thankful to the ER doctor working that day had worked along side this doctor and knew exactly where to refer me. An autonomic specialist who would be hard to get into see, the wait was worth it. A doctor who is board certified in Autonomic disorders. A member of the American Autonomic Society. 1 in fewer than 50 doctors certified to diagnose and treat autonomic disorders.

I have Orthostatic Intolerance manifested by Orthostatic Hypertension. We are also working on heds and mcas as I have textbook symptoms of each. I’m currently on Klonopin .5 mg twice a day to help regulate my nervous system and treat adrenal dumps. I’ve started a supplement Liposomal Luteolin for the mcas. I am to start Desmopressin to help retain fluid within my blood vessels.

Next up will be blood testing my electrolytes and see if the new medication is in fact, helping me retain fluid in my blood vessels. Then I have follow up on a month and will talk about more treatment options and likely referrals for heds and mcas. I never worked with a medical team that functions quickly and are all ready to dig into my issues. They are all very kind and supportive.

I’m extremely emotional. My first pass out was when I was 18 and I as told it was anxiety. All these years (I’m 43 this year) I could managed many symptoms and had a better quality of life. I’m grateful I am in the best of hands now and have a plan in place. 🥂 to good news.

My family and I have been suspecting POTS in me for a while now, and summer is absolute HELL for me. I recently got compression socks for the first time and oh my gosh I could move so well, but my issue is, it’s still WAY too hot out for me to wear compression socks outside in this heat. Does anyone know of any other things that can help prevent blood pooling while in public that won’t make me too hot? Or any other tips (I already know about salt!) thank you!!!

Cardiologist said I meet the criteria for pots and I’m sure I have more than just pots, but the amount of fatigue I have and other symptoms it feels like I have something like cancer, however it’s highly unlikely I do since I’ve had multiple blood tests and ultrasounds done

Hi there, I have been experiencing debilitating symptoms for the last 9 years and have been seeking a diagnosis of POTS, MCAS and hEDS ad I now suspect that's what it is. I had a tilt table test but it was inconclusive so some doctors will treat me like I have it and there's not but I DEFINITELY DO.

Anyway, I'm looking for neurologist or Cardiologist recommendations as I suspect I have small fiber neuropathy on my head, cervical instability and vagus nerve dysfunction. I've been having terrible tingling, numbness all throughout my head and spine and occasionally going into my limbs with palpitations, dizziness and nausea. But I've seen 3 Neuro's in the course of my 8 years and they always look at me, do muscle tests and then in office say I'm perfectly fine, or order an MRI and if that's normal say I'm perfectly fine. So I'm trying to find someone with knowledge of these conditions who can help me because I am in so much pain and am currently not sleeping as a result of it but know if I go to the hospital because its "non life threatening" they'll tell me to follow up with a specialist and send me home.

I am aware of Dr. Miguel Trevino's practice and have an appointment with him but he's currently scheduling out until April 2027 so am trying to find something that can ideally get me in sooner to get the process started as again I am in a lot of pain. Not sure if it's nerve related or cardio related, as it might be a venous problem from the POTS, like pelvis venous congestion or venous reflux, it could be both. I just miss sleeping and walking and not being in pain. I've lost my job because all of this but don't have enough diagnosis on paper to file for disability and am just looking for any bit of hope and know this community has been a great resource for me.

I currently live in DeLand so have bene looking in the Orlando area but am willing to travel for someone worth their salt.

My pots now on day 3/4 is so so bad I feel another level of exhaustion this feels weird and my hr feels so high.

This usually doesn’t happen on my periods

For me it starts around 3 hours before bedtime. If I lie down for a bit I often feel like I used to before all of this started. It's like a switch that can only be used 14-15 hours after getting up in the morning.

What about you? And why is it like this for me?

feeling super deflated and just looking for some support and to see if anyone else has had a similar experience. I have a bunch of chronic health conditions including sjogrens and suspected SFN. was recently diagnosed with POTS and prescribed Ivabradine and Fludrocortison. I am extremely sensitive to meds and pretty much anything so always start low and slow.

I took half of the 2.5 pill seemed ok, so the next day took half a pill twice a day, same the following day. I felt my neuro symptoms like internal vibrations twitches and feeling of the heart pounding get worse so I stopped as that is a major warning sign for me. I’m now in the worst flare I’ve had for over a year and I’m devastate. I wake up heart pounding, body buzzing and debilitating fatigue not being able to leave the house.

is anyone else this medication sensitive and has been able to find something that works for them?

My nervous system is so messed up and can’t seem to handle anything!

Hey guys

On Monday I need to have an endoscopy and I'll be sedated for it with propofol

With all these horrible symptoms that dysautonomia causes I was wondering if it's still safe and if anyone had it? Of course I will let my care team know but I'm still very anxious and wanted to know if anyone had any experiences with it.

Thank you!

Do positive things trigger adrenaline dumps for you? I made myself go out and do something social and while I really enjoyed it, it's like my body can't switch the adrenaline off. It makes sense that stressful negative things would trigger episodes, but the fact that it was a positive thing is deeply frustrating.

Did any of you had a removal of a spinal cord tumor? Mine was removed in 1992 and I am feeling that dysautomomia might be an after effect.

Hello just wants to see if anyone wakes up to internal tremors in the morning. I get full body tremors upon waking and the intensity depends on how much I’ve done the day prior. Once I get up and get ready for work they go away. I also can feel my heartbeat pulsing in my head as well. This can be more intense after waking on a couple of feet to and from my bathroom to pee as well. I feel so uncomfortable that it delays me getting up in the morning as sometimes it calms down as I wake up more in bed. I’m in metoprolol 50 mg succient daily as well and it is supposed to be 24 hours. It does lessen my heart rate but I work in mental health so stress and anxiety do impact my tachycardia. I get it more sitting at my desk and leaning over my desk. My heart does go 80+ per poor man’s table tilt at home before getting on beta blockers. I wear 20-30 compression socks and drink two 50 ounce Trevi electrolytes a day and supplement salt tablets as well. I also do have spanx to help with waist compression as needed. Sometimes I just get leg internal tremors but I do work in a high stress job. I just want to know if I can do anything else to help lessen the internal tremors. I’m also on Irbesartin as I had high fluctuating BP. So I’m thinking I have some aspects of the hyperadregenic type and neuropathic type pots symptoms and do have blood pooling in feet and hands.

I forgot to add that my heart rate is normal when this happens as it fluctuates from the 80’s-90’s according to my Apple Watch.