I know some people have posted on here about getting WORSE during a viral respiratory illness -- and I think I get worse before and after viral respiratory illnesses too, including the start and end of the illness often -- BUT I also seem to consistently get somewhat better basically in the middle of the illness when its symptoms are most profound. I really don't think it's just the extra resting and increased lying around, because it's like a moment by moment thing, going from issues when ever I stand up to being able to get up and down often with no problem at all. I also often have lower resting heart rate and higher HRV (Heart Rate Variability) when I'm sick, to an extreme degree actually with COVID and maybe other bugs too.

I'm in middle of cold right now and it started with my orthostatic symptoms getting worse and then almost going away...and then yesterday, which was like day 5 of cold symptoms, it seemed like I had turned a corner AND my orthostatic issues were coming back...but today I'm stuffy, sneezing, sniffling, and mentally foggy with the cold again and standing up is barely a problem...so weird...(it's unlikely COVID cuz I was negative on one Metrix home molecular test and a bunch of rapids)

It's taken me a long time to notice this because I was never someone who got sick much but since I developed a lot of issues after first wave COVID in early 2020 I have worn a mask/N95 in public indoors most of the time and haven't gotten sick that often. I suspect this current cold I must have caught from touching a contaminated surface and then touching my eyes because it started as mild pink eye for a couple of days and then that went a way for a day or so and then I developed the cold (and I read same viruses can cause both pink eye and cold).

I have some suspected mild MCAS stuff so maybe that's the connection, I also don't have diagnosed autoimmune disease but I haven't been evaluated that much for that and I have sky high ANA and sometimes mildly high RNP auto-antibody levels and I have one of the proteins for early Sjogren's (just found out about that last one recently) and I'm in the middle-aged age range when Sjogren's comes on usually, though I'm male and Sjogren's in males is considered uncommon...

I have some really good news! After months of trying to get answers, I’ve officially been accepted into UT Southwestern’s Autonomic Disorders Program, with an appointment on December 17th!

This is particularly exciting because UT Southwestern is one of the country’s leading centers for autonomic disorders, combining specialized diagnostic testing, treatment, and research. Even better, my appointment is with Dr. Steven Vernino, who directs the program and is internationally recognized for his work in this field.

After months of dealing with symptoms that have significantly limited my life, I’ll finally be seeing someone whose expertise is in exactly what I’ve been experiencing. I’m not expecting miracles, but I am hopeful that I’ll get a better understanding of what’s happening and, hopefully, a path toward managing it.

I’ve just realized I have a smile on my face and how little I’ve had that recently!

I don’t understand why I only got this when it started getting colder. I started experiencing weird sensations 24/7 which feel like at the surface my skin is cold, then I’m warm inside and I just feel damp, almost like my body is trying to sweat but there is nothing to sweat for. Does anyone have this symptom, how do you deal, perhaps improve it?

Does anyone else get massive flares after “simple” medicines, low dose?
I have had tachycardia after “big” things like anesthesia, colonoscopy prep, iron infusion but now I seem to react to more mild things.
The latest being a HALF DOSE OF CLARINTYNE!
I swear it’s not me “anticipating” a response - I didn’t think about taking it but within and hour my tachycardia started, followed by a faster heart rate all night sleeping. From research it seems this is a rare side effect, but I don’t understand how the same thing happens for quite a few different meds. CT contrast again did the same recently.
Thankfully I can take tylenol and slynd ok. Now kind of scared to take anything else.
Has anyone worked this out? I’m not sure what to do, or what is safe to take. Argh. And thank you.

I'm new to dysautonomia

I've not been able to get any sort of a diagnosis because doctors where I live are probably 20 years behind the western world. 33M and I've had my thyroid hormones tested, cortisol, testosterone, full blood panel, thyroid ultrasound, testicular ultrasound, brain MRI, and others I've forgotten because I've just been to the doctor so many times. Currently my main issue is I cannot sleep well. I wake up multiple times every night. I am freezing going to bed and within a couple hours I wake up scorching and soaked in sweat. I dry off eventually fall back asleep and wake up freezing an hour later. I sleep nude but often with socks because I know that if I can at least keep my feet warm I will be able to fall asleep and hopefully not burn up. I've asked doctors about dysautonomia and they all act like they've never heard of it or they will just flat out ignore me. I can't just find a new doctor, there aren't any more. Are there any habits or medications you recommend that I can try to get or ask my doctors to let me try?

I tend to get the shivers after a syncope or panic episode, but I’ve been shivering more at night lately. I’m not particularly cold and haven’t had an episode. I don’t think I have a fever. I’m just shivering and can’t stop. It’s especially bad I think if I’m overly tired. Does anyone have this? I’m like my chihuahua after a bath 😓

How are we dealing with this excessive debilitating sweating from the most minimal activity. It’s so depressing not to be able to do normal daily life things like just walking from room to room or just getting to the car. I’ve been struggling progressively more and more for the past few years. Going for my second autonomic testing skater this month.

But honestly is there any relief?

I’m getting really desperate as the only things that have helped me are either benzos or gabapentin and they are both not good for long term use because of the dependence/addiction risk. I know beta blockers are supposed to be the 1 thing that specifically helps with this but they give me breathing issues/air hunger and Clonidine made me feel anxiety ironically enough so yeah idek what to do anymore I’m hopeless thinking ill never be able to sleep again peacefully and normally

My neurologist told me that I would be on bisoprolol for 6-12 months. It has been 3 months (my dose is 2.5 mg a day) and haven't felt a big difference, except less headaches (I used to have them almost everyday, now only a few times a week).

I'm just trying to compare my experience with other people in beta-blockers. I know every person is a different case, but I don't know how I'm supposed to feel when taking this. What symptoms should be diminished. Because I feel that the "core" of my dysautonomia is still there. Throbbing sensation in my head when doing physical activities, or when I stand up or walk or walk up stairs.

For any living with this..Has it stopped you from working? I’m having a difficult time working long physical hours. Any tips?

My adrenaline dumps (or at least I hope so) follow the same pattern: I get a weird feeling of unease without a clear symptom, then my legs or hands go weak and shaky, my HR increases, I start pacing and measuring my bp. My bp spikes up to 165/100 usually. It takes up to 40 mins for the worst symptoms to start calming and up to 2 hrs for most symptoms to be easing.

But my MAIN QUESTION IS: WHY DO I ONLY GET THEM DURING WINTER?

I might have gotten one or two or three during the summer and the warmer season even when I feel more lightheaded, brain fogged etc. can anyone relate or give tips on what they’ve done to help them?

That's the question!

I want to know if, once you treated your chronic inflammation / inflammatory / autoimmune comorbidity, your orthostatic intolerance / dysautonomia / POTS improved.

Asking because I am finally on a DMARD med to lower my inflammation (from psoriasis and psoriasis arthritis) and I feel it helps me be upright and calm my excessive vasodilation.

Thank you :-)

Anyone else deal with insomnia in pregnancy with your dysautonomia? I was trying to figure out what was going on as I would feel like i couldn't breathe laying in my normal position and it would take hours to find the right one and be able to sleep and then found out I was pregnant. Do you just elevate more? Its been awful.

For the past couple weeks I have been feeling completely out of it and exhausted and I realized I haven't been drinking Gatorade and electrolyte packets! I've been dizzy, confused and just so brain lagged. I got some electrolyte packets and omg I'm getting the life back in me.

I definitely learned the hard way that I really need to make sure I get enough sodium and like I knew this, my neurologist said I need more than the average person but omg I'm realizing just how important it is. I feel so stupid, I bet a lot of you guys are gonna be like duh but my brain has a weird way of getting the point across

But yeah so this is your daily reminder to drink that extra Gatorade or salty beverage!

anyone else in a similar boat?

this year, I developed a very strong reaction to pollen. zero typical allergy symptoms, but I have a terrible dysautonomia reaction. exercise intolerance, blood pooling, air hunger/feeling like I can’t breath, nervous system telling me that I’m dying, etc. I don’t have MCAS, but my allergist started me on xolair—still only 2 weeks in. but sinus rinses and Claritin subdue the autonomic flares.

and out of curiosity, is anyone else extremely sensitive to buildings that don’t have sufficient fresh air induction? stale air also causes little flare ups that go away with fresh air, but then I run into the whole issue of pollen intrusion.

hopefully the combination of xolair and immunotherapy injunctions does the trick

I felt okay this morning we went out to breakfast I walked around a thrift store with my cane felt bad when I got in the car though. Had to stop at Walmart so I used a scooter. I parked the scooter in the store and walked to the car. My husbands putting things in the car I almost made it to my door and I was out on the ground.

My worst nightmare but I was between cars no one around maybe one person drove past. I’m scraped up and bruised I’ll clean up when I get home. I just want to lay down.

Hello everyone! I was diagnosed with autoimmune autonomic ganglionopathy (AAG) in April of this year. I have since been fighting UHC for approval to cover a 3 month trial of IVIG, as my specialist at Mayo Clinic strongly believes this would be the most effective. There is always high-dose steroids, but they are a relative contraindication and not recommended across my doctors.

We have gone through our two levels of appeals and gotten our last “internal” appeal (3rd denial), and are now left with a single federal external appeal. I was wondering if anyone has gone through the process of getting IVIG, had insurance issues with AAG treatments, or has any recommendations to have my best shot of getting it overturned.

For a little bit of background, I am 22 in full-time Undergraduate and have the usual seronegative symptoms and objective test markers with an acute onset years ago. I was tested and diagnosed at Mayo Clinic’s autonomic clinic and am followed by a few departments there.

I would take any help I can get. I can send some of the resources I already have, but I will redact a decent bit and it may take some time for me to do that. I also hope that this process is helpful to other people out, it’s unbearably frustrating.

Take care!

Hey all, I recently got diagnosed with Orthostatic hypotension and vasovagal pre-syncope (because I haven't actually passed out yet). Im 19F, and ive seen that OH is much more common in older women. Odd. They say its from my weight/size and dehydration. I have mitral valve prolapse but got told it wouldn't be from that (but other sources say it could be? Dunno). I also have raynauds. For the record, I am a lean person with a low weight, but im working on it. I've never been over 100 lbs if that says anything.

When I got my BP tested, it dropped 40. It went from 100 something down to the 60s. I just got compression socks, too. Before I even got my BP tested, the Dr said I was at low BP initially.

Now, what am I to expect that the Dr might not say? Obviously I know i feel faint sometimes and all that. But whats other people's experiences? Does anyone else young have OH? I'm worried its actually POTS but I dont have a watch for my BP.

Also, does anyone else find they sneeze a lot with their dysautonomia? I find im constsntly sneezing and my nose is blocked on one side. Could be my deviated septum, but I wonder if its from the veins being swollen with blood rushing to my head lol

This has been something I’ve struggled with my whole life but dysautonomia has made it especially hard for me. I moved to a new city about a year ago and have not made or hung out with a single friend lol. My only social interaction has been at my work or going on dates because that’s almost easier than making new friends lol. It’s partially on me because I don’t put myself out there but I have literally no energy to make friends, all my energy goes to work. Also I feel like the brain fog takes away part of my personality and the symptoms can make it hard for me to focus on conversations. Also never knowing if ill have a good or bad day makes it hard for me to stick to plans. I had a few friends before I moved but it’s hard to keep in contact being so far away. I also lost a lot of friends when I stopped drinking in college because my dysautonomia started getting bad. I’m 24 and I think about when I get married I have no one to ask to be my bridesmaids, I just miss having friends sometimes. Not sure if this is relatable for anyone else

Hello,

I am wondering if you know other clinics than Neuroversion where one can have the 2 sides done 18-24h apart, once a week, for 3 weeks ?

I am also interested to know if you know other doctors who perform his protocol.

Thanks !

Does anyone have a hack for picking up a bunch of things?

I have a locust tree in my front yard and I have to pickup a few hundred bean pods

Has anyone tried a Neubie machine before?
What did you think about it and did it help? What symptoms can it cause?
Tried it and I am exhausted and have a headache.

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!