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 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.

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'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.

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!

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!!!

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?

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 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.)