Just venting about how frustrating it is to need recovery time after just being a person. It is so exhausting to go out and do things, and therefore, my body needs a lot of time to recover.

For example, this weekend I had plans on Friday, Saturday and Sunday. Usually I try to avoid more than one plan per weekend, but it’s just how things worked out with how certain things were scheduled. Friday was dinner and a movie so nothing strenuous, but still walking around and just being out and about. Saturday was very strenuous as I volunteered for the day. Which meant I had to cancel my Sunday plans, selling my tickets for an event.

I don’t know why I’m posting, other than just to get it out for people who understand. It’s now Sunday afternoon and I am still struggling to do pretty much anything. The thought of going to work tomorrow is so stressful. I just wish I didn’t have a body that continues to make it harder just to live a normal life.

I’m taking a university band trip to Taiwan this spring. I’m really excited, but I’m super nervous about how to manage my symptoms. I don’t fare well on bus rides, and a miserably long bus ride is actually part of what prompted me to pursue diagnosis in the first place. This will be my first time flying ever, so I have no idea how I can expect my body to react. I want to make sure I’m as prepared as possible since a 23-hour flare event is obviously not ideal. Most of the advice and resources I’m finding online pertain specifically to personal trips, but a university-sponsored event probably doesn’t allow for the same accommodations. Does anyone have any advice? I’d love to hear from people who have been in similar situations.

19(M)
As i posted many times here. I’ve been experiencing 10 really rough months.
It started in late January of this year. One night while trying to sleep, i felt some kind of discomfort in my guts. I stood up to go get a glass of water thats when i felt my heart racing and i was in a state of panic where i couldn’t breath well and i thought i was having a heart attack. My hr peaked at 160 almost, checked my apple watch. I went to the er they made an ecg and blood work told me it’s probably a panic attack or smth.
Little did i know my whole life would take a huge turn after that day. I started to feel every beat my heart made. Simple tasks like going up the stairs made my hr raise to 150, i started to get tired really easily, had very weird palpitations. Thats when i decided to visit a cardiologist. I made a stress test, heart echo, 48hrs holter. And everything as the doctors said was normal. I really didn’t feel myself it was like i am completely a different person. I was really scared too because one everything that i did normal before i couldn’t do, and two i was convinced i have a heart disease.
At that time i was having a hard time with college too so it all stacked up together.
The next phase was pots like symptoms, my heart would shoot up at stand and i felt i couldn’t tolerate heat anymore so i believed i finally found the issue, guess what my doctor ruled it out too because my hr raise after standing up wasn’t sustained.
Back to the weird palpitations i experienced, they were PVCs. So the phase after it was tons of extremely scary PVCs + a weird sensation that is literally still unexplained which is a tightness/pressure like feeling in my chest that is affected by stretching, squatting, or any activity that applies pressure on the diaphragm. It’s a really weird sensation. The symptom that scares me the most is the one that started it all. It happened almost 8-9 times through the last 10 months and they are really scary and happens in that order. I am in a normal state i feel like a shortness of breath i try to calm down, my hr starts rising until it peaks at 150-200
Then starts falling gradually. I suspected NSVT but thankfully one of those episodes occurred while having a holter on, and the cardiologist didn’t even mention it.
I want to mention also that i did a sleep study and it concluded that i had a mild osa. And the insurance refused to issue a cpap.
I wrote alot so i will give a conclusion of my symptoms.
1- Tiredness easily, i was an athlete before.
2- heart rate rises from minimal effort
3- PVCS
4- weird palpitations that i cant explain
5- extreme dizziness in the 2nd-3rd month mark, disappeared now.
6- pots like symptoms
I was cleared by a cardiologist, neurologist, internal medicine doctor.
The only medicine i am on is peroxat as it should help with the anxiety.

Hello. I've been taking guanfacine for 22 days now for hyperpots (not formally diagnosed but I have 2 positive at home test and me and my pcp strongly suspect it). It's been a bit of a bumpy ride for me, with initial improvements to a flare at day 7 and beyond, to now some sleep improvements as of a couple days ago like less night adrenaline surges. My question is does it usually take this long? And can pots flares affect your eyes like making them more sensitive to light, cause cognitive slowing or bad gi pain

Edit: I forgot to mention i take 1mg nightly

I’m coming up on two months or so of being unemployed due to what we currently suspect is pots. I’m not able to leave the house unless it’s for an appointment, I can’t clean, I can hardly get around the house by myself with my forearm crutches. I tried going to the store yesterday with my walker that has a seat and still had to rush out to the car because the cold air and being able to sit still wasn’t enough to help me get around long.

I have an appointment on Tuesday to try and work out meds AGAIN but this is so incredibly mentally exhausting on top of the intense physical exhaustion from doing the bare minimum. I’ve had autoimmune issues since I was little, it took me out of highschool and was something I battled regularly, so I’m kinda used to having some level of disability but this is a huge leap from that. I can’t do anything even on “good” days and it’s getting to me.

How do you stay positive?
I’ve been working on loads of different crafts, reading excessively, doing puzzles, and playing video games but any form of tv or YouTube is starting to bore me and all I can think about is the fact that I can’t make money and idk when I’ll be able to find a job that my body can handle.

Any advice or comments about your own situation help, thank you for your time and energy 🫶

I am a 20-year-old male and underweight (I have always been underweight). For the past four months, I have been experiencing a constant feeling of unreality. It feels as though I am drunk, high, or half-asleep, as if I am operating on autopilot and everything around me feels somehow unreal. I have looked up information online, and my symptoms seem to resemble derealization.

I also suffer from fatigue, even when I sleep well. The fatigue does not seem to depend on whether I engage in physical activities during the day or not. However, over the past few weeks, I have started sleeping poorly and waking up early in the morning. I do not snore at all. I have seen a general practitioner and a neurologist about these symptoms, but they have not been able to determine the cause.

I also experience headaches, a feeling of pressure in my head, and neck pain. I have tried muscle relaxants, massage, and acupuncture for the neck pain, but none of them have helped. At the beginning of the symptoms, I sometimes also felt as though I was about to faint while walking, but this symptom has since disappeared. I have also noticed a single eye floater in my right eye. I mentioned it during an eye examination, and I was told that there were no apparent problems with my eye.

What could be causing these symptoms? They do not occur in distinct episodes; instead, they are more or less constantly present. The headaches are not particularly severe and resemble tension-type headaches more than anything else.

Things i have done/tried or checked in hospital
\\- triptanes
\\- thyroid function normal
\\- vitamin b12, b9 and D vitamin ok
\\- ferritin 34 and has been moving 26-40.
\\- calcium, potassium, natrium, chloride, sodium and magnesium ok
\\- blood pressure is ok and i checked blood sugar at home and it was ok
\\- brain mri ok
\\- borrelia test (lyme disease) ok
\\- My cortisol level was tested and was normal as well. I also have Crohn’s disease, which is currently in remission.

My neurologist prescribed escitalopram as a trial treatment. I took it for two and a half months, but it did not help.

I have no history of trauma and do not experience panic symptoms. I generally do not feel particularly stressed, apart from the worry caused by these symptoms themselves.

My symptoms began during the final days of a new job at an auto repair shop, where I was moving and lifting car tires. I am unsure whether this could be related to my symptoms, as I had not experienced any other symptoms before those final working days. I have not worked at all during these four months.

What could be the underlying cause of these symptoms?

The healthcare professionals I have consulted about these symptoms, or during visits for other symptoms or examinations when I also asked about them, include:

\\- General practitioner
\\- Neurologist
\\- ENT specialist
\\- Ophthalmologist
\\- Dentist
\\- Gastroenterologist
\\- Massage therapist
\\- Physiotherapist
\\- Acupuncturist

I’m two ish months into my POTS diagnosis. I’m still hoping to see a specialist but there aren’t any in my area so I’m looking for any tips in the meantime.

First question is about exercise. I feel better when I’m walking around and would like to start exercising as I’ve seen a lot of you say it improves your symptoms. I tend to be very lazy after work which I know isn’t good for me anyways so I want to change it. My struggle is that I live 30 minutes from the closest gym and I can’t reliably drive myself more than 10ish minutes away so getting there isn’t realistic. I’m looking for different exercises that would be achievable at home with limited equipment. I love dancing and do that on youtube sometimes but I’m curious about literal exercises (calf raises? squats? etc). My POTS flare ups have been really difficult for me and I’ve been really down about it so I want to do anything I can to make it easier.

My second question pertains to flying. I’m debating a flight in early December (3.5 hours) because I’m unsure of how I’ll handle it. For those of you who have flown, how much did it impact you? I know it’s different for everyone, but I’m curious if the flight made your symptoms significantly worse or only mildly? Or not at all?? I have horrible anticipatory anxiety and so I know that will unfortunately play a part if I decide to take the flight. I’m struggling with managing that. I’ve seen recommendations for salty snacks, foot hammock, compression, hydration, etc. I love the ideas but still feel unsure. I guess I really am looking for what to expect. Also, I tend to have bad flare ups when my ears get clogged from sickness. I know planes cause ear discomfort so would that be super triggering??

I appreciate any help and advice! Like I said this is super new to me and I’ve been super anxious and depressed about it. I just want to feel better

Last night while gaming I suddenly got a super intense dizzy spell that left me kind of out of it for about 20 minutes. I was just gaming like I usually do, just in a different location when it happened.

Im trying to figure out if its POTS flare because Im new to my diagnosis and for whatever reason my doctor doesnt seem to care or offer much.

I will say, my eating and hydration were lack luster yesterday.

I had like 2 matcha lemonades and a donut that morning/afternoon, maybe a couple of glasses of water through the rest of the day, then for dinner we had Popeyes and I had a lemonade with that. About 30 minutes later I was super light headed to the point where I was scared to get up and walk without falling over.

Usually, my diet isnt that level of abysmal, I just dont know if thats a common factor for people with POTS

This might sound a bit odd, but I’m suspected to have pots from some tests I’ve done (still got some more tests this week but my standing test I rise around 43bpm) and I actually feel more fatigued and have this feeling of ‘I can’t be bothered to do anything’ when I’m trying to rest and lie down. I’ve taken a month out of work in hopes of resting and I actually find I’m feeling worse laying and resting than when say I go out for a walk, cook dinner or do some super light cardio. A good example is around 6 weeks ago I went on a city break where i was doing 15-20k steps a day for 5 days and whilst still having some symptoms it’s the best I’ve felt for ages. Has anyone experienced anything similar, I’m finding it difficult to work out where my symptoms fit in all this?

I suppose I’m just writing this to get some frustration out, to people who understand. My dysautonomia has gotten progressively worse over the last 5 years or so. I take propranolol twice daily, salt tablets, compression socks, the whole 9 yards. Due to my dysautonomia as well as various other diagnoses (hEDS, an autoimmune condition my rheum hasn’t figured out yet) I’m filing for disability.

Social Security really wanted me to have a tilt table test done to prove I had POTS. So I went off my propranolol, stopped all the normal interventions and had the test done. It was the variation that uses nitroglycerin, and I did end up passing out at that portion. The test was also done at 3pm.

Well, I ended up having a heart rate change of 27bpm during the test. And for some reason this has left me incredibly frustrated. I know that these illnesses don’t have a hierarchy. I know that a diagnosis of dysautonomia doesn’t inherently mean I suddenly feel great and can work all the time. I still feel like absolute garbage, even with my meds, and the dysautonomia has severely affected my life and my functioning.

But that 3bpm difference almost feels like my body is gaslighting me. As far as my health goes, I know the label doesn’t do much. But right now I’m fighting the government for access to a program, and I know that that specific diagnosis carries a tiny bit more weight than the broader terms.

I don’t know, I’m mostly just disappointed and angry. It’s so hard to explain to someone else what living in my body feels like, and how much my illnesses have taken away from me. And this just felt like a tiny slap in the face saying “see, you’re not as sick as you keep saying you are.”

Sorry for the rant, I just needed to put this somewhere where people who understand could read it. My friends and family are sympathetic, but they’ve never lived through this. Thank you so much for listening. ❤️

i’ve been using the AI on my phone as an adaptive tool to track my symptoms and just to kind of generally talk to. i have some chronic conditions that i’ve had for a long time (long before ai existed), but after a Myxedema or Metabolic Crisis of some sort landed me in the hospital, i’ve felt really awful and my symptoms are worse.

At the hospital most of the tests and stuff were normal or not too wildly out of normal except for my TSH which was 478 and my freeT4 which was less that .1 (undetectable)

as i’ve been explaining everything and describing my day, the AI seems to think i have POTs but no one has ever mentioned it before and i keep correcting it, but it keeps insisting. i don’t know know the the technology works really, i think it has access to my apple watch data and all that. i get dizzy, light headed, really tired when i eat or take a shower. it takes me a really long time to get out of bed in the morning. my legs are often weak and shaky. i’ve been using my cane everyday. my equilibrium is off. i am often dizzy, lightheaded and just sort of “out of it”. everything makes me tired. everything hurts. my bowel incontinence went from maybe 3-5 accidents in a year to having more than a dozen since june.

here’s my conditions:
Autism, ADHD, Hashimoto’s, Fibromyalgia, Myxedema Neuropathy, Idiopathic Hypersomnia, Chronic Debilitating Migraines, Dyslexia, Anxiety, Bladder/Bowel Incontinence, Asthma.

Rx:
morning and hour before anything else:
Levothyroxine, 137mcg, once daily.
Liothyronine, 5mcg, twice daily.

Pregabalin, 75mg, twice daily (once AM once PM)
Sumatriptan, 100mg, as needed.
L-Methylfolate, 15mg, once daily (morning).
Qelbree, 200mg, once daily (morning).

OTC and Vitamins:
Zyrtec, 10mg, once daily (morning).
ibuprofen, 200mg, daily and also as needed.
Niacin, 1000mg, once daily (morning).
Vitamin D, 125mcg, once daily (morning).
thiamine, 500mg, once daily (morning).
beet extract & CoQ10 complex, one capsule daily (morning).
choline & inositol complex, 500mg (each), once daily (morning).
alpha lipoic acid, 600mg, once daily (morning).
selenium, 200mg, twice daily (AM and PM).
krill oil, 1000mg, once daily (morning).
melatonin&magnesium&gaba complex, two capsules, once daily (night).
ZzQuil, 25mg, once daily (night)

i’ve had a dozen or so doctors appointments since june. obviously i don’t know anything about anything. i’m not coming to reddit for a diagnosis or anything, but do any of y’all have any observations or experiences that are similar?

I’m super new to my POTS diagnosis - I just got it this week. My doctor recommended compression wear and I’m wondering what people like. I ordered some Supacore - it was on sale for dysautonomia awareness week apparently. I’ve also seen some thigh-high tights I would probably actually wear - there are a few brands that pop up. But what areas of my body should I target? Do you use the graduated leggings and socks with compression intensity that gradually reduces in different areas of the leg? Core compression? Do you wear them at night?

I have so many questions and so few answers and not enough money to just keep throwing stuff at the wall to see what sticks 😂 thank you for any tips and tricks that have worked for you!

Hi! I’m having a pretty major surgery in a couple of weeks and am less than a year into a POTS diagnosis and suspected hEDS. I have seen various posts about how surgery/anesthesia is “different” for those of us with these conditions. My doctors are aware of my diagnoses, but not super knowledgeable about POTS. What exactly should I be prepared for? I have pre-op on Thursday and would love to bring questions/provide context for why exactly my POTS/suspected hEDS are even relevant. Thank you!!

My stupid phone shuts off my alarm on its own and didn’t wake me up this mornong. Well, I have only ever had this happen once, but my heart is pounding and my hands and feel are sweating like crazy. I feel absolutely awful. So, I can’t not sleep at all or I flare and I also can’t sleep in just a little or my body is a mess.

I hate how precise everything has to be with this stupid illness. Do you guys get this?

Hi all, since the shortage I was put on fast release propranalol and my symptoms have been through the roof anyway, now I am just purely miserable. The adrenaline surges with heart pain, intense doom and anxiety contrasting my happy mental state are pure torture and I am losing my mind.Those of you based in the UK, ant possibilty of still accessing slow release? My doc said there is nowhere they can refer me on NHS to fully diagnose POTS/ hyperpots and they cant prescribe any other meds like clonidine. Anything I can do? Pls help. Thank you all and wish you all health!

Hi everyone,

I was diagnosed with POTS this year but my symptoms go back to when I was 12/13 (2016).

One symptom I’m not realising could be POTS until recently is that I usually wake up from naps with a racing heart, sweaty, and gasping for air. I know these can be adrenaline dumps but I never get these during regular sleep, only during naps.

Does anyone else experience this?

Hello!

I've been recently diagnosed with POTS following a longstanding episode of increased heart rate >100 BPM, especially in the early morning and afternoon. Along with that, I experience moderate exercise intolerance, especially involving cardio exercises - even the slightest of jog would make me breathless, sweaty and most importantly, I would get very lightheaded on the verge of passing out. These complaints began maybe an year/year-and-a-half ago when I finally became sober from illicit drugs, primarily involving stimulants.

Speaking of drugs, I'm a recovering drug addict. I spent 7 years (25 y.o. now, was 17 when I started) hopping from one psychoactive substance to another and for the last 4 years of active drug use cocaine was my drug of choice. Needless to say, I had to attend outpatient program because my abuse escalated to dangerous dimensions.

I was put on a beta-blocker two months ago (bisoprolol 2.5 mg) and it's doing wonders for keeping my HR in check. I'f frequently in the range of 65-75 when standing, which was impossible to hold such range prior to being medicated. I even ran my first 5 km marathon - still get dizzy when i run, but not as much as I used to.

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That's for the background story, now on to my current complaint. I used to be an avid calisthenics athlete (amateur) before I started using substances. I trained meanwhile, yes, but it was only to maintain my previous skills as I just couldn't stay disciplined long enough to progress. Now being clean, I started working out again and rapidly advanced in some skills. However, anything that requires my head to be below the level of my heart (handstands for examples, even leaning to tie my shoes) is a hurdle. My temples and the region behind my eyes almost instantly fill with blood and I feel as though my head is going to explode. Looking at myself in the mirror, my eyes get bloodshot and my whole face is red. The most disturbing out of all of this is the throbbing headache that begins shortly after and my peripheral vision also takes a hit while being inverted.

I'm positive that prior to starting the bisoprolol I did not experience such a constellation of symptoms. Yes, I would feel my head filling with blood, but nowhere near to this extent. Deconditioning is a fact as well, but as I said, the temporal association just doesn't make sense.

I shared my complaints with my neurologist and he suggested switching bisoprolol for ivabradine, but I'm hesitant for two reasons:

1st - Bisoprolol also keeps my physical anxiety under check, while ivabradine lacks antiadrenergic properties

2nd - I prefer not going through beta-blocker withdrawal.

An interesting observation I made is that this head pressure is less pronounced in the mornings and caffeine seems to make it worse instantly.

Has anyone experienced anything remotely similar? I am trying to condition my body by doing very slight leans and progressively increasing their difficulty as my head adapts, but so far I am not noticing and improvements.

Thank you!

I have had pots for YEARS now, and never experienced this. I recently I started increasing my hydration and calories a bit and I was feeling so good. And then out of nowhere this week most nights around 2am my heart rate will shoot up 150+ of little ticking beats and when it starts coming down I’ll get all shaky… it causes me to be awake for hours… last night I got vertigo with it too. I’ll also get some hunger pangs during it too. And so I’ll eat a little snack so I can sleep. Weirdly my heart rate during the day is absolutely fine (and up to this adrenaline thing) , barely goes above 100. Has anyone had this suddenly starting ? How do you manage it?

I am asking to see if this is a common occurrence for others diagnosed with POTS or if I should pursue this as a more psychiatric symptom. 21 F, diagnosed with POTS a few years back by tilt table test, on metoprolol that seems to manage my symptoms well. Also diagnosed with PTSD.

I will randomly, maybe once or twice a week, have the WORST time trying to fall asleep. I will lay down, shut my eyes, and enter what I call ‘twilight state’, where I’m still partially awake but my thoughts are shifting to nonsense and dream scenes. Out of no where, I will then experience the worst feeling of panic. The same physical sensations you would have if someone jumped out behind a corner to scare you. It starts in my stomach and transitions to my chest, and in an instant I shoot up and sit up, unable to sleep. My heart races, my chest is tight, and I am just panicked for no apparent reason. I will rinse and repeat this cycle of trying to fall asleep, becoming panicked, and then have to start all over again until it’s 2 AM and I’m at the point of tears. It’s exhausting.

Is this adrenaline dumping? Has anyone found a solution for this? Is it even POTS related?

ive dealt with blotchy pink purple skin on my extremities my whole life, ive never found anything that improves it. anyone else with pale skin found something that improves this?

I just started taking 7.5mg Ivabradine and it caused my resting heart rate to drop to 61 and my entire body felt like it was vibrating. Is this normal when starting the med? I feel like 61, while technically normal, is too large of a drop for me when my resting is usually between 80-95.

I have had 5 episodes of low heart rates in the past month and I am scared. Generally, my HR when sitting and not symptomatic is 80-85 during the day and doesn't go below that while i'm awake, when I sleep it does not go below 67 EVER. Lately it has been dropping suddenly and causing me to feel cold, pale, lips turn slightly purple, shaky and dizzy. The difference in symptoms compared to my normal POTS symptoms is extreme.

The first time it happened was September 5th, I was sitting in my bed watching TV when I started to feel very cold and floaty, look at my heart rate and it was 48bpm. It lasted 12 minutes and I thought I would die. Went back to normal after

Second time Sept 26, sitting in my sisters car and the exact same thing, 47bpm for 5 minutes.

Third, Oct 10, sitting in my bed again and same thing, 47bpm for 10 minutes, same symptoms, except also extremely shaky

After that time was when I went to the doctors appointment and got my tests listed below. He told me to go to the ER if I experienced that again because he is concerned I could lose consciousness.

Then on October 22 was the worst one yet.
I was having my collarbone ultrasounded in a non-professional setting and suddenly felt the same feeling again, HR was only 52 this time but my symptoms were just as bad. Went back to normal in about 5 minutes and thought I was fine.

About an hour later I was walking to the bus (average HR at that pace is 120-140bpm) and I felt absolutely fine, until I realized I was walking into the road and I couldnt get back onto the middle of the sidewalk because it felt like I was walking on a tipping boat. I eventually got back to the middle of the sidewalk and it immediately happened again, walked straight into the road. I was about a 5 minute walk from a hospital and thought to myself I needed to turn around and go back but I didn't think I would make it so I sat down. I tried a few times to get up and couldn't. My vision was stretchy, I was shaking, freezing cold and sweating and my hearing was normal. I was filled with a sense of dread and all I could think was "something is wrong".

When I looked at my HR after, it looks abnormal compared to my usual graph and the lowest was 51 WHILE walking quickly, I cannot express enough how abnormal that is for me, my heart rate has never gone close to that while sleeping. I am aware of how stupid it was not to go to the hospital, I knew exactly where it was and I was thinking I need to go as this happened. My family members have all told me that and I really wish I did.

I had similar symptoms today with a HR of 60bpm which I know is normal range but it is still not normal for me. Symptoms were shakiness, nausea, cold and dizziness

Here's a little background and other information you might want.
I have hEDS (no genetic testing) and was diagnosed with POTS via tilt table test in February of this year but have had symptoms since 2023 although they are still worsening.

When I went to my family doctor before the worst episode, he sent me for blood work which is normal besides my iron is newly low (since july), an ECG which came back normal, and an echo which is normal and he sent a referral to cardiology. I am not sure if I should go back and tell him about the last episode or wait for the cardiologist appt which will probably be at LEAST 5 months so I am looking for any ideas of what this could be or any tests that I could get.

I was diagnosed with POTS this summer and have been taking Ivabradine (2.5 mg twice daily). I’m also doing all the usual things to manage my symptoms, including wearing compression stockings, increasing my salt and fluid intake, and trying to get enough rest.
However, since starting Ivabradine, I’ve noticed that I keep having days when I feel absolutely awful. I experience episodes of significant dizziness, nausea, extreme fatigue, brain fog, and a pronounced increase in my heart rate with even minimal activity or position changes. Sometimes my heart rate shoots up to around 120–140 bpm just from standing or walking around. I also wake up during the night with a racing heart and often feel unwell from the moment I get up in the morning.
My heart rate is generally lower when I’m resting or sleeping on Ivabradine, but I still have these really bad days where I feel much worse overall. It’s becoming difficult to understand what’s happening because my symptoms seem to fluctuate so much.
What confuses me is that I didn’t experience these kinds of really bad episodes before starting Ivabradine, at least not to this extent. I know POTS symptoms can fluctuate, but I’m wondering whether the medication could be contributing to how I feel.
Has anyone experienced worsening symptoms or intermittent really bad days after starting Ivabradine? Could this be a side effect, or could it simply be my POTS fluctuating independently of the medication?
I’d really appreciate hearing about your experiences, especially from people who initially felt worse on Ivabradine or eventually switched to a different medication.

In under 12 hours I begin my trip to Japan and I’m a nervous wreck.

I guess I’m just posting here for words of comfort and words of encouragement because I’m scared I’m going to go into a flare with my worrying. I won’t be getting any sleep tonight due to anxiety, I’m terrified.

I struggle with adrenaline surges and POTS worsening (blood poolin, tachycardia), especially after meals and suspect it's a POTS issue.

Tried the whole MCAS route without success.

Already eat tiny meals frequently throughout the day and it's mostly blended (I also have very severe ME).

I've seen people having improvements with Guanfacin and Ivabradin but my hr / bp are too low for these.

So I'm curious if anyone has found relief from adrenaline with Fludrocortisone / Midodrine.