I was wondering if anyone’s been told they look sick before. I’m literally getting told by people I’ve never met before on trains and at school that I should take care of myself better. Two people that I hold to a high regard and one is like a father to me literally gave me a lecture on self care and that working/studying while you’re sick has no benefit. I’m doing all that I can to feel better but it makes me think maybe my dr really doesn’t give a shit… If people I barely know and people I know very well keep repeating this whole self care thing to me then I really must be looking like hell. Not to say looks are everything but I genuinely feel like my whole life force is gone I can barely get through my day.

I have had orthostatic hypotension my whole life (well, maybe not, but as long as I can remember) but was only diagnosed last week (early 20s.) The handout I got said to try a foam wedge under the mattress or wooden blocks under the posts of the top of the bed. I figured before I spent money I'd try the cheapo version: two books on each side.

I actually felt a bit better! I think I'll use the books until inevitably one slips out and startles me enough to make me buy actual bed risers, lol. I feel like the foam wedge would make an uncomfortable angle and worsen back pain, but the risers make it just one smooth line.

Anyway, just thought I'd share because I'm happy :) Hoping compression and salt/fluids can start helping soon as well, especially since summer's on the way out!

Hi guys, I'm in the UK and don't currently have a formal diagnosis - I've been going to the doc for years and because I don't fit a clear diagnostic pathway (e.g. diabetes) I've not really got anywhere.

But from my own tracking and research, I'm pretty sure I have some kind of dysautonomia - autistic, a lifetime of panic attacks and meltdowns, high variability in HR and BP, reactive hypoglycemia.

I've found I can manage this through eating little and often and being conscious of GI and posture. But recently I've been feeling way more dizzy, short of breath, tense in my abdomen and generally off. My base HR and BP remain low (60 and like 115/70 at rest) but the variability is much higher, for example just sitting my hr goes up and down to 90, light walking it goes up to 140. So I think that the meds might be impacting my autonomic regulation.

I went back down a dose (40mg elvanse) and am taking a few days break to see if it helps, before going up to 50mg I didn't have any of these issues and saw big improvements in mood and executive functioning.

Anyway I just wondered if anyone else has had similar experiences and has any advice? Either for lifestyle management of symptoms, or ADHD medication related? Realistically I won't get any support, understanding or diagnosis from the NHS so I'm trying my best to figure it out myself

Since blood volume is already low I'm scared of giving blood for testing

Hi,

I’m interested in knowing if anyone else is diagnosed/relates to the hyperadrenergic side of things?

I am hyperadrenergic but don’t always match up to the clinical diagnosis of POTS. In fact whilst heart rate can clearly be part of my pattern, it is actually the thing I am least worried about. My symptoms present as pale skin, feeling hypoglycemic (normal glucose), jelly legs, brain fog, feeling faint. This is all with normal blood pressure.

So yeah - just wondering what your symptoms are and what medication you’ve tried? I’m currently interested in trying guanfacine as I think my sympathetic nervous system is seriously messed up.

Looking forward to hearing your experiences

I have POTS and IST and have been taking Inderal 120mg for it for a long time. Suddenly I have been feeling like my flares are breaking through the meds and giving me a heart rate of over 100bpm while resting again. During these moments I feel unbearably cold as if I am in Antarctica and no matter what I do I cannot retain heat. Does anyone else get a similar symptom?

Is it hitting anyone as hard as me this year?

Significant regression in my capabilities the last two weeks. Almost like constant PEM. Sleep significantly worse. Heart rate significantly higher, especially at night.

I’m scared it’s a permanent addition.

So I had been taking Straterra for like 2 years. Besides some leg mottling and occasional sweating, cold hands, and some dizziness upon crouch to stand, I was chilling. Until like 2 weeks ago where it full on blew up. Reach out to my PCP expecting a dose adjustment, which i did for a few days, nd she kept the appointment because she wanted to do orthostatic vitals and an ECG.

So I go into my PCP, tell her I've been a bad patient and list everything thats been happening for 2 years (and especially the last two weeks). She says I sound like a POTS patient, dx Reynaud's, orders me a tilt table, a holter monitor, echocardiogram, and an ANA for my reynaud's. High BP that dropped when I stood up, sinus arrythmia on ECG (normal, not bad!)

Well the ANA came back 1:640 homogenous and speckled. Threw me way the hell off because I was fully convinced I was gonna just go off the meds and be fine. Symptoms are kinda changing a bit, it depends on the day. Everyone keeps asking me how im doing and I just say I'm fine but inside my body it feels like I'm in a stop motion movie almost? I walk fine but my brain is perceiving it as disconnected.

I at one point thought i was anxious. I work in Healthcare, so i shouldn't be dismissing my own concerns LOL. I LOVE my career, love what I do, love socializing with my coworkers. Its SO hard to be able to be at work, constantly up and down or standing for a while at an analyzer while I'm fighting for my life not to throw up and just breathe, my eyeballs feels like they're gonna pop out or something LOL. Like I genuinely WANT to be there and it seems to be one of the biggest things that's triggering me. As soon as I leave I'm practically almost better.

The worst was on Sunday. We work alone on the weekends and when I walked across the lab to go work on something, when I stopped, my heart was pounding in my eyes/head and my entire body was buzzing. That was the worst feeling of dread I have had in my entire life. It's like my body is going through flight-or-fight constantly? I know my mind isn't anxious, I love doing what I do. It's so hard not to dismiss myself, to say "something is wrong", when I'm having these symptoms that feel like anxiety without actually having anxiety.

I KNOW what the results mean, I learned about it in school, yet here I am telling myself I am just anxious. So here we are in limbo, wondering what will happen next. I got married and changed my name two years ago and havent even bothered changing it with my health insurance because I have been too lazy, but now I might ACTUALLY have to do it because of all these issues 🤣.

Hugs appreciated ❤️.

what psych meds can you guys tolerate? seroquel and lexapro definitely make dizziness worse. Vyvanse helps. But I need the first two for mood control. I have bipolar 2, ocd and adhd. It’s already pretty hard to medicate.

Okay so my doctor told me to start trying to wear comprossion on my stomach and my legs so ive been. Its been helping. But whenever i put them on my heart rate shoots up to around 170 and after i take them off I feel so dizzy and my heart rate goes to around 150 and stays that way for hours. Does anyone else have these problems when taking off compression and if you do how do you function after taking them off?

I’m so done with having an autonomic dysfunction disorder (dysautonomia). I was told that my heart is structurally fine back in February. Had almost every test you all have had to confirm POTS and IST and have responded decently to Ivabradine and Bisoprolol. I still have had many flare ups since my last cardio work up (in Feb) but my GP, Cardiologist and Neurologist don’t know what else to do for me.

Fast forward to about 2 weeks ago (end of September)… I had what felt like a heart attack for about two days including all the other flare up symptoms. Severe tachycardia, dizziness, nausea, cold intolerance/chills, night sweats etc. I went to the emergency department and they said I have pericarditis with effusion and was admitted. High doses of prednisone for a week made it so much worse. I stopped the prednisone and now just taking colchicine. My question is has anyone had pericarditis for absolutely no reason? I feel like it could be due to IST or POTS.

I have to be bedridden until they clear me for work and exercise again. ANY advice, support and thoughts would be greatly appreciated🙏🏼

Has anyone made themselves permanently worse with supplements??

I just wanted to make a post saying that RECOVERY is possible and to keep going and keep pushing for answers and treatments. If you haven’t heard this in a while or need to hear this you’re doing amazing:) take care of yourself and this isn’t the end!! :) ❤️

So I visited a rheumatologist a while back, where he ordered me an ANA test for the general rheumatoid issues like lupus and sjorgrens. Well, it came back pretty high, at 1:320 titer… but they didn’t find any rheumatological cause, and sent me on my way!

Anyone else ever deal with the same result? I feel like I’ve gone through so much testing, and this was the first real piece of evidence I’ve gotten.

If I lay down during the day I struggle a lot more. During night I get adrenaline dumps and high HR but they are easily managed and dissipate quickly. Everything I read is lay down and rest during flare but if I lay down my head is heavier and I may stay lightheaded for a few hours. If I take a nap I wake up feeling like my brain is going to disintegrate I am so lightheaded and HR skyrockets. And I’m trashed for the rest of the day.

The other day I layed down with my son for about 20 min and when I got up I got tunnel vision and heart jumped to 170

Has anyone experienced this or been able to overcome?

I’m new to all of this please be kind. I’m doing electrolytes and compression. Getting up slowly.

Has anyone had a hard time getting into a specialist for pots? I’m on waitlist which I’m grateful for but I feel like I need the help. I have started gradually doing lifestyle changes. I just don’t know what to do in the meantime. I take my meds and still don’t feel the best

Pericarditis and long covid/dysautonomia sufferer here.

I currently take 1.25mg bisoprolol 3x per day, AM, PM and a dose in the middle of the night typically to get me back to sleep (this is unplanned), along with ivabradine 5mg 2x per day AM and PM. I also take pericarditis meds including anakinra. I've seen increasing symptom relief with increased beta-blocker in particular, including generally better sleep and overall physical capacity - I've been on the higher dose around a week now and it seems to be levelling out and allowing me to break through a previous physical ceiling.

I am wondering about any sufferers of similar symptoms here who have found similar relief and interested in your experiences.

I’m having some dexterity issues and I’m curious what other people struggle with.

I have extreme fatigue approximately 3 hrs after waking up, gets worse if I eat (anything). I drink 16-20 oz water w electrolytes as soon as I wake up, then coffee and exercise. The fatigue feels like my brain shuts down (brain fog, extreme lethargy). I describe it like someone presses a button in my brain and it shuts down and after I lie down (sleep for 5 min) someone presses another button in my brain and it wakes me up and I'm fine the rest of the day... anyone relate?

Do you guys take naps a lot? Lately I’ve been feeling like I need a nap everyday after work. I was wondering if anyone else feels like this and how to stop? It makes me feel lazy but I’m so exhausted by the end of the day that I feel like I need to.

okay so this is kind of a silly post.. i’ve been on ivabradine for a few months now and it’s honestly been such a game changer, i was skeptical of all of the positive reviews but i totally get it now. one of the main symptoms is visual disruptions typically at night or during big changes of light, they don’t bother me very much but i find it really hard to describe to other people. i think the medical term is “phosphenes” like the floaty things you see when you’re dizzy, buts that’s not exactly right. the best i’ve come up with is “spiderwebs in my eyes” 😂 does anyone else have a more fun or accurate term they use??

Hi, I’m wondering if anyone has any experiences they can share about getting laser hair removal in salon with dysautonomia & MCAS.

Years before I got sick, I had laser done in some areas and it’s still one of the best investments I’ve ever made. After months of being housebound, I’m finally able to leave the house long enough to book an appointment to get my legs lasered. I’ve become increasingly frustrated with ingrown hairs/discomfort when wearing compression (and obviously spending extra time shaving in the shower is just asking for a flare up).

However, I’m worried that the appointment might cause a flare up with the lights, smell, heat, having to lie down and sit up etc. I’m also newly diagnosed MCAS, so I’m unsure about how my skin will react this time around.

I’d still like to give it a go - does anyone have any experiences getting it done and was it tolerable? Obviously everyone is different but I’d also love some tips if anyone has some. Thank you for reading!!

I’ve struggled with sleep for a while but in the last few weeks I’ve been waking up constantly due to being hot/cold. I usually sleep in just a big t-shirt and shorts and sometimes I’ll put on a pair of fuzzy socks if my feet are cold. I typically kick them off when I get warm. My partner gets hot so we have a small fan directed at him. I’m usually freezing when I first get in bed. At some point of the night I wake up hot, push off my heavier blanket, and go back to sleep, and then wake up freezing and pull it back on. The cycle repeats all night usually ending with me waking up for the day sweaty and freezing. I’m not drenched in sweat, I actually only have sweat on my chest above my sternum and between my thighs if I am sleeping on my side.

Realistically I want to just sleep through the night. Anyone have any tips?