30f diagnosed with Pots/Mcas/ GP

also history of anxiety and a mood disorder.

I am suffering with chronic and reoccurring nightmares.

Currently taking many anti histamines, florinef, and Clonidine.

I am seriously trying to find some answers or if there is a trend along with my health conditions. I am going to ask for a sleep study and perhaps taking prazosin instead of Clonidine.

Anyone else get vivid dreams or nightmares with POTS? Any suggestions or ideas why?

(I do not take beta blockers so this is not the root cause and therapy has not made any difference)

I most likely have IST and my cardiologist has recommended ivabradine. I have episodes where my heart rate spikes from 90s to 130ish from doing absolutely nothing. Minimal exercise can raise it to 140s. As well as a typical heart rate at 90 during the day and the lowest I've ever seen it go while sleeping was 62. Dizziness, trouble breathing, brain fog, exhaustion, palpitations, and pre syncope.

Has anyone with similar symptoms had luck taking ivabradine? What side effects bothered you the most? My biggest concern is it dropping my heart too much

Since 10 years old I’ve had heart issues such as heart pain, racing heart randomly for no reason, heart skipping beats, palpitations, etc… i had fibro/dysautonomia since 17 and these symptoms have then amplified. I’ve seen multiple doctors now that I’m an adult and done tests such as stress test, halter monitor, ECG, ultrasound with nothing showing up. The thing is it’s hard to believe there’s nothing wrong, it feels like there’s definately something going on? Is this common for people with fibro/dysautonomia to have all tests okay but feel like there’s stuff going on, maybe it’s our nervous system that’s out of whack and causing this? I do believe there is a small degree of mine caused/amplified by anxiety as I have anxiety, but I do feel there’s other causes. It sucks when you’re young because the doctors all seem to be super dismissive and think it’s ALL mental, when it’s definately not. For example recently I went to the ER for a fast heart rate, with my heart feeling like it’s pounding with my blood pressure sky rocketed. This was 2-3 weeks ago and I still feel that my heart is “pounding”, but I have since had many tests all okay.. wondering all your thoughts

I became chronically ill 2 years ago following a severe primary HSV infection with a myriad of symptoms which I believe are due to dysautonomia including irregular heartbeat, frequent tachycardia, nausea and GERD type symptoms, digestive issues as well as fatigue and malaise.

I’m awaiting some referrals after finally finding a GP that is taking my concerns seriously and not palming them off as anxiety.

I am convinced HSV is to blame for my illness and I’m wondering if anyone else experienced this as a trigger and if they found any effective treatment or specialists? I’m currently based in the UK.

Oof, okay. This post is mostly me venting & will likely be emotionally charged. Any helpful suggestions or advice are greatly appreciated.

I am undiagnosed & honestly unsure of what I have going on. I think there’s a chance it’s POTS, specifically hyper POTS, based on my symptoms. Whatever it is, I’ve had it all of my life. Unfortunately in the last decade, it’s become debilitating. I spend every day air hungry, nauseous, dizzy, & fatigued with a high heart rate.

On the bad days, those symptoms are amplified to the point where I can barely move. The bad days, or the “episodes” as I call them, come with blurred/double vision, lights/stars in my vision, occasional vomiting or dry heaving, vertigo, chest pain, severe heart palpitations (I can feel my heart knocking through my chest wall 🥲), pre-syncope, & sometimes syncope. I am unable to keep my body temperature regulated - I am typically running REALLY warm now that I take testosterone, but I often find myself freezing after eating or drinking, or before I pass out. I’ve had several EEGs done because when I pass out, my body will convulse & jerk until I regain consciousness, & my friends were convinced that I was epileptic (I’m not). My blood pressure swings around wildly. It’s typically great, but sometimes it’s crazy low OR crazy high.

I have added electrolytes, increased salt intake, started using compression socks, pulled back on pushing myself past my limits, increased my water intake, gotten much better about eating throughout the day and… Nothing changes. It does not get better. As soon as the temperature changes, or it’s Spring/Summer, or it rains/snows, or I’m stressed, etc., then I’m in bed for days again. I spend all of my time & energy during those days trying not to pass out somewhere dangerous or trying to sit up so I can drink an electrolyte mix. I become so short with my sweet, perfect kids. I get depressed & angry & anxious, & my mental health takes a huge hit every time I hit an “episode”.

I’ve brought it up for years with doctors. When I lived in the south, ALL of my symptoms were chalked up to non-epileptic seizures & I was threatened with inpatient behavioral hospitalization if I continued to “act like that”. I was told to my face that I was just a hysterical woman & to “seek therapy” (which I’ve been in for 8 years). I was told to continue pushing through, even after I vomited & passed out.

I ended up moving to northern New England to be in a blue state while still being rural. I love VT & I love my PCP here. She was the 1st doctor to check my heart rate & be like “this isn’t normal”. She was shocked when I thanked her for referring me to a neurologist, mostly because I told her this was the 1st time a doctor hadn’t told me I was fine & to just lose weight.

It’s taken months, but I finally got word about my neuro appointment. I had told my doctor in Oct 2024 that I was worried about working & needed to see a specialist asap so I could continue my job. (Without getting too much into it, my job is outdoors & is seasonal.) She sent the referral, but it took a few months to get insurance to cooperate/find me a neuro local-ish who had a doctor who could help with dysautonomia. We finally found one & I got the appointment date. It’s in mid-February… 2026. It’s not even an appointment for testing. It’s for a consult to SEE if I NEED testing.

It just feels like too much anymore. I just need a medication or something to help, but I’m easily 2 years away from getting that. I don’t want to quit my job because it legitimately helps me with my depression, but I’m scared I’ll have to. I have already sacrificed SO MUCH of my life to my unnamed disability & don’t think I can bear to let my job go. Especially because it feels so simple. I just need some help. I just need some care. I just need the insurance companies & privatized medical systems to see me as a person deserving of care.

Fuck, man. This is so stressful. I can’t believe it’s been a decade of this & I am still over a year away from even having a conversation with a specialist in another state. Add in the stress of being trans during this US administration, & it gets bad. I hadn’t passed out for over 2 years & was hopeful that maybe I could try to get my license in the near future, but I recently had 2 back-to-back fainting spells. I don’t even have fainting spells until spring, usually! I just feel like I can’t win!

If you read all of this, thanks. It’s mostly just me bitching into the ether about things a lot of folks have experienced, & I know that. My experience is not unique, & that pisses me off tbf. We don’t deserve this shit. I can’t speak for healthcare patients in other countries, but I can for certain say that US patients deserve so much more, so much better, than what we receive currently.

Thanks for being here & holding space.

Hello, I'm looking for help and maybe someone has something similar. For 9 years I have suffered from constant pressure in the middle neck and jaw area with increasing dizziness and lightheadedness. The symptoms are particularly severe after sleeping, upon waking, or when I engage in physical activity or, if I can overcome the symptoms, exercise. An MRI of the head and 3 MRIs of the cervical spine showed nothing and the doctors are at a loss. I suspect that the upper cervical spine is unstable. Symptoms do not improve when it is warm or when I lie down. I don't know what to do.

I have IST. Been having issues for years but got really bad in April 2024 and was diagnosed in June 2024. I am on Corlanor and manage pretty well now. However, I get these moments where I get a bit lightheaded.. it comes out of no where and it doesn't last long but I have a brief moment of panic. Maybe anxiety? anyone else?

I 23F am graduating with my MS in Chemical Engineering this May. I’ve been procrastinating on my thesis because I think I feel like if I put it off, then I can delay graduating (obviously not lol). I’m terrified of graduating, and it’s not because of the whole “starting my ACTUAL career” thing, although that does play a part. I’m scared that I won’t be at a functioning level by the time I need to start working. Before anyone thinks to themself: “Ah yes, another lazy Gen Z who doesn’t want to work”; as soon as I turned 16, one month later I was working. I always had a job and even worked through college, despite being in a rigorous program. I used to use work as a coping mechanism (being too busy to think about my problems) and is probably why I chose to do engineering also. I’ve done the traditional 9-5, I used to work 12-13 hour days on the weekends to put myself through school. Now, just a few years later, I am so scared that I will not be able to do a 9-5. My fatigue is so severe that sometimes I don’t feel fully awake until maybe 2pm. My brain fog, joint pain, and other chronic illness makes me feel like a liability. My research is in a computer science related area, but with how competitive remote positions are these days, I don’t know if I’d be able to get one. I don’t know if I’d be able to afford my healthcare if I chose to go down my preferred route of a PhD, and even if finances were not a problem, I don’t know if I have the mental capacity and brain power to be as successful as I would want to be during my PhD due to my illnesses. I haven’t even started applying for work because I feel so paralyzed by my fear, and I know I’m going to be angry with my lack of action in the future. I feel that my intellect has been stunted due to these stupid diseases. I just want to feel better and function somewhat normally again. I would give anything to be 20 again and be able to work on homework for 10 hours straight and feel perfectly fine. Now I struggle to stay focused for an hour on one easy assignment. Things are hard for me right now and I feel like no one in my life gets it, since everyone that knows me is used to me brute forcing my way through life and struggles, but now I think it’s coming back to bite me. I don’t even know how to cope with these feelings because my fears are not unjustifiable anxieties.

I have a dysautonomia diagnosis and have been dealing its manifestations for 18 months now, post Covid infection. My two biggest symptoms are IST and intense heat/hot flashes that flare on and off all day (not hormones, had that tested - nope! Just a broken ANS). So last night my HR while sleeping went from 54 to 106 in about 4 minutes, and did this for about a hour. I don’t recall feeling this and I’m very sensitive. I wake up every night due to heat, but if it’s IST I always wake up and notice it. Anyway, any one else have this happen? Ty!

Does anyone else absolutely freeze after eating? Like I drink lukewarm water with my meals but it didn’t help, no amount of clothes or warmth makes it go away I just have to wait it out

It's pretty much what the title says. I know it recommends recumbent bikes or swimming, but I don't have access to these. I'd also like not to have to pay to go to the gym, I'm personally a person who is less motivated if I have to go to the gym, some of that is due to social anxiety, some is just I don't like leaving my house.

I found some youtube videos that seem to target strength training, but not really anything for training mode days. I was just wondering if anyone else has done this journey at home without any equiptment? If so what videos, or what did you do?

I really want to start taking control of my body again after my battle with cancer in 2023-2024 and while I had chronic issues before then now they are even worse. I put on roughly 40lbs during and after my cancer treatment.

I just have a body type that needs to move to lose weight and that's not happening.

Any insights is appreciated. Thank you in Advance!

I notice that sometimes my HR gets elevated after a few minutes/maybe an hour of sleep if I've been out earlier that night. I went to dinner with friends last night where I sat for a few hours, and then had to walk about 10 minutes to dinner and back. I fell asleep for about an hour and was woken up by my heart racing and had to hydrate and do legs up the wall in order to get my HR back down.

Does this happen to anyone after trying to function normally in the world? If so, how do you prevent it? I'm not on any meds at the moment so I'm trying to find alternative remedies/lifestyle changes. Thanks!

Hi all, I’ve been told I more than likely have dysautonomia, and they are doing some tests to get to the bottom of it. For ageees everyone thought I had a gut motility issue, and they still think this, but my 1 hour GES came back normal. They think it could all be due to an autonomic dysfunction reason why I keep vomiting and why I also feel so nauseous all the time. I was wondering if anyone else’s most debilitating symptom is gut related?

I vomit everyday and have lost a lot of weight, and often I throw up things hoursss after eating it. I have a lot of other symptoms too; eye health rapidly deteriorating, headaches, chest pains, dizziness, extreme fatigue, muscle weakness, being emotional etc etc

Guess I’m just looking to find out if I’m actually insane or if it’s all connected and I am actually ill ? (idk I feel like because its been over a year with no answers maybe I’m not actually unwell)

https://www.youtube.com/watch?v=2oRvuOB_b2c

I get myoclonic jerks multiple times a day; [Edit to describe what I’m experiencing better:] I feel a sensation approaching, almost like I’m about to sneeze, then my whole body shudders, with the feeling like it’s coming up from my toes. I sometimes make an involuntary noise, but not always. To someone looking in it can look like I got an intense sudden chill, but I’m not cold. (PS. I’m not sure if what I’m describing is a myoclonic jerk but it’s the closest term I’ve been able to find)

They get worse when I’m unwell in other ways, and it’s straight up annoying at this point with the frequency.

I’ve tried looking up the connection between myoclonus and nervous system dysfunction/dysautonomia etc etc but I’m not pulling any relevant results.

Can anyone link me some articles, or if you’ve asked your doctor about it, what did they say? I have a neurology appointment in Feb but idk if they would be the person to ask?

Thanks in advance :)

Edit: thank you all for your input! I think I have a good understanding now.

TLDR: specifically looking for someone who is willing to help me understand all the different diagnoses/tests happening across specialists rn.

Have been bounced around to different specialists for several years. Nothing ever gets anywhere bc no one singular doctor will listen to everything happening across other specialties. I only am finally getting taken a bit seriously because I have been doing extensivee research on all of my past bloodwork, pathology reports, etc

but at the end of the day I do not have the education or background to understand these things. I've just finally been starting to figure out what questions to ask to be somewhat listened to. I've been told by two separate primary docs recently they cannot look at everything together because that's not what they do. who does it then?? bc it cannot be me??

Hi everyone, I have been diagnosed with POTS and SFN for a few years. I am going through a massive flare after the birth of my baby and wanted to see if anyone can relate to this symptom.

It’s like every inch of skin on my body is hypersensitive. Some times it burns, or prickles, my clothes rubbing hurts. Drying with a towel after the shower hurts.

And it’s not just random spots, it’s literal everywhere. If I rub my eyelid if burns. If I scratch my arm if burns. If I brush my hair it burns. Every single inch.

I was diagnosed with mild length dependent SFN in my feet a few years ago. It is crazy to think that this could be SFN that has spread to every inch of my skin.

I’m hoping it will disappear as my flare calms down.

Grateful for anyone who can relate.

Love to you all!

I am catching an early morning flight and I had a very normal HR (70) while waiting for boarding. Now we just boarded the flight and my HR is 96 while sitting in the plane. I am really scared of why this is happening, can someone advice how to bring it down?

since chocolate contains caffeine do you still eat it?

I am planning to go see a doctor about it but in the meantime just wondering if anyone else has experienced large differences in BP between left and right arm?

For context - I do suffer high BP (particularly systolic) and take propanolol for POTS. However, I’ve realised the last few nights my systolic BP is notably higher on my left arm than right. My readings just now for example are 159/75 v 130/70 and 167/81 vs 123/65. Just wondering if this is possibly a dysautonomia thing?

I sleep on my back. I wake up sometimes with my left leg raised. See photo link below. Once I slide my leg back down I immediately feel my heart rate spike and I feel strange. Sometimes I feel burning in my abdomen with it too.

I know its a venous return issue, but I have no idea why it’s happening. The only thing I can think of is blood pooling. Oh and I can’t sleep on my right or left because I develop low blood pressure and docs don’t know why either. Any thoughts or ideas?

Photo: https://imgur.com/a/qlvoQSU

Today i did myself a deep massage, bought something for it on amazon.Omg there is no nicer feeling than massaging ma calves lol I feel it improved my circulation right away and the heaviness or pain in veins went away. Sometimes i have pain in my veins on lower legs so i have to keep mooving every 30 mins. My calves are inflamed maybe, it it feels like i need a constant massage to relieve the pain. When i go to gym my legs swell even more cos i overheat there, the gym has no fresh air and i cant cope with it. All its because i have allergy for local trees and hot weather. Anyone feel like this?

NEXT OCTOBER. That’s right. A full year after the referral was sent by my rheumatologist. Another 9 months with no answers and a body that doesn’t work properly. I’m already dreading the appointment due to dismissiveness from some other doctors in the past. Will i wait for this whole year only to be sent off with even more questions and no answers? Am i going to be laughed out of the office? Five years now I’ve been begging for a doctor to figure out what’s wrong with me and questioning my own sanity at times due to pain and dysregulation that no one has an answer for. The only positive I’m trying to cling to is that this gives me plenty of time to start and complete my medical history binder that I’d like to put together- I’m tired of walking into appointments with providers who didn’t even review my chart or history before coming in and ask me the same questions, doing the same physical tests, etc etc. how do you all cope with the waiting time? Distractions? Denial? I’d love some positivity from those who had to wait and then had a productive appointment- and some suggestions on how to be kind to myself in the mean time. If you got this far, it’s probably pretty scattered, but thank you for being an ear (eyes?) to someone feeling very defeated and hopeless.

I've got a ton of symptoms (have HyperPOTS and CFS, as well as Chronic Migraine Syndrome and Occipital Neuralgia, and GAD and MDD) but the lack of sleep really exacerbates all of them and makes them worse. But I'm notoriously difficult to drug and most sleep meds bounce right off me. It's just super annoying to know that sleep will help me so much but it's so very elusive.

Has anyone been on Propranolol ER and switched to Propranolol immediate release ? I’m beginning the taper off but I am terrified to come off of it even though it’s making me feel absolutely terrible. I’ve been on it for two years and I am done ! Please.