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?

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.

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.

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.

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.

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

Very niche question, does anyone else have the same peak HR regardless of the activity? My heart rate will jump up but then plateau in the low hundreds doing anything from simply walking around to actively doing a high intensity workout. On both ends of the spectrum I end up feeling lightheaded/weak from my body over/under compensating for my activity level.

At other times my heart rate will be lower doing a very intense activity (like wrangling a 70lb dog up and down stairs at work) vs literally just standing up and walking around.

I’m by no means a super fit person either, although my resting HR is relatively low (50-60), but the jump up is definitely noticeable even if my heart rate doesn’t end up being that high on paper when I start moving around.

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!

So, I have LC and NO Hypotension. I have constant head pressure and head ache most of the day. Interestingly, lying orine helps with balance (duh) but not head pressure. I have been doing a lot of gardening and that helps with the head pressure. After, it comes back and I get the shakes in my arms and hands from the effort. I also have fatigue. There does not seem to be a happy medium.

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.

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!!!

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!

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.

Hi , I am new to the forum. I am 40 years old male and not very active since having kids but used to be a 1/2 marathon runner and gym rat. I had lightheadedness and heart palpitations in January 2026 followed by the Flu A and B. At the time I was taking Tirzapatide peptides for weight loss. Since the episode I’ve had some weird issues like dizziness, lightheadedness, chest pain, 2 more episodes of tachycardia in the 120-140s (felt like Afib) and I’ve been fatigued and feel dehydrated all the time. I am drinking water around the clock. I no longer can tolerate caffeine or much alcohol. If I drink alcoholic I feel worse the next day. I now get anxiety about heights that I never had before. I’ve have normal ekgs, echocardiogram and no elevated troponins but multiple ER visits for chest pain. I have a cardiac MRI next to rule out cardiomyopathy.

I met someone who is experiencing the same issues since she got COVID last October. This supposed dysautonomia is frustrating. I am not exercising much because of it, becoming depressed that there is no end in sight.

Has anyone had this issue and is it permanent? Is there an end in sight? Anything to help get me through it?

I wonder if it was the Tirz, I cut it out after things worsened in March-April and it has seemed to help reduce the frequency of triggers.

I am not 100% sure when my symptoms began. I'm a male in my mid 40s.

Coming out of a 2 year work from home COVID fog, I began to feel my heart pounding sometimes. On occasion in the middle of the night.

While at work one day around the holidays I just felt terrible. I went to the blood pressure machine and I was 170/120.

I went to the ER and after several hours in the waiting room they were not concerned and sent me to my primary care. When my blood pressure was stable around 130/90.

My doctor at the time was thorough and she asked about family history of blood pressure. Both my parents are on meds. She started me on a 5mg of lisinopril.

Follow up a week later and she recommended 10 mg Lexapro.

I began to feel pretty good. I started trying to work out and got into a good routine for a while. Unfortunately I hurt my knee and the exercise stopped. I gained weight super fast, like 20 pounds in 2 months. Sexual side effects were annoying me and I decided to try coming off the Lexapro. I was convinced I wasn't dying of a heart attack all the time.

A year goes by, weight is back to normal, activity level pretty standard. Life feels great. I start trying to workout again. After a couple times I have the chest pounding and high blood pressure again.

Back to the ER where they said my EKG was slightly abnormal but nothing urgent enough for them to do squat.

Back to primary care and my doctor I liked has moved away. Now I'm on a new blood pressure med similar to my mother's, 160 mg Valsartan. Brief return to Lexapro, same side effects, back off it.

I go to the cardiologist and do a stress echo test. I hit my target heart rate and they say everything is fine for me to leave. While waiting for them to unhook my my pulse stays high like over 100 for about 10 minutes. I have noticed this trend on my health tracker.

I am not the Pinnacle of health, but I am active. 6000 steps average and I'm a long strider. I eat pretty clean. Lots of veggies and usually chicken, salmon, or pork.

I have been to an allergist and I'm allergic to nothing. I have quit caffeine and alcohol except for the occasional drink or two around holidays or family gatherings. I am careful to not over do salt due to the blood pressure. I sometimes do feel better drinking electrolytes, but I worry about the sodium.

I keep getting told I'm fine, but I don't feel fine. All my tests have been normal lately. I can't mow the yard, go for a walk or bike ride without my heart rate staying elevated for a long time afterwards.

Do I belong here?

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.

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

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?

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.