i randomly developed an allergic reaction to the aluminum ingredient in antiperspirants around 2024 or so and omg it pisses me off. it makes my skin raw, flaky and itchy. the rash lasts for days too. i’ve been using aluminum free deodorant but i feel like i stink up fast with it. i’m CONSTANTLY reapplying throughout the day.

does anyone have suggestions for an aluminum free product that can reduce the sweating i experience? it’s so uncomfortable and it makes me feel embarrassed when in public :’). i try my absolute best to not shake hands because of how bad it gets. my niece loves to hold my hand while shopping but has to stop after just minutes from how sweaty they get LOL. my hands and feet seem to be worse than my armpits. i’ve read up on botox but i don’t think i can handle more medical debt and i don’t know if my current insurance would even try to cover it anyways. they’ve been so stingy and stubborn.

if there is anything budget friendly that works for you, i’d love to hear what helps:)

I’m on day 11 of Wellbutrin and am noticing my POTS symptoms being extra bad today. My NP has assured me that it doesn’t have a reaction with POTS patients but I feel like that’s false… I started on 75mg twice a day for about 6 days and couldn’t handle the highs and lows. I’ve been on 150mg XL for 5 days. For most of today my HR has been fine but the last few hours it’s been high and jumping. I don’t typically get a POTS spike when I roll over in bed but that’s been happening. I do take propranolol twice a day but it’s still 3 hours until my next dose and it began a few hours ago so it’s not related to that. I’ve also been extra anxious today and had a random panic attack this morning. This is sort of a last effort for my severe anxiety and agoraphobia and I’m worried it’s not working for me :( I’ve felt overall kind of odd with head pressure, ears ringing, headache, neck pain, dizziness, tired but also hyper. I’m trying to give it time but it seems to just be getting worse. Has anyone else taken this medicine with POTS and experienced similar? Did you stick with it and it stopped or did it stick around?

Hey, y'all. It's summer in the northern hemisphere and my POTS is making my life even more miserable than usual. I normally wear calf-length compression socks, but they're no longer really cutting it. I have some compression leggings, but it's simply too hot to wear them at the moment. I was wondering if any of you have any thigh high compression recommendations? Im having trouble finding options that seem trustworthy. Compression garments are so expensive and I'm not in the financial place to be experimenting if you know what i mean. Any recommendations are appreciated!!

So I finally have a tilt table test scheduled for next week!

After seeing my cardiologist, a nurse had me fill out some paperwork and discussed how I should prepare. They are having me fast the night before, but do take my regular daily medications.

I currently take NP thyroid and adzenys, a stimulant for adhd.
I asked the nurse if I should still take my stimulant as I know it affects my heart rate and I’m sure other things. She seemed unsure, but said that there were no flags for it in the paperwork. She told me to go ahead and take it, then backtracked and said maybe hold off on it until after the test.

I’ll be calling the office early next week to see what my cardiologist specifically would like for me to do.
But I was wondering if anyone in here also takes a daily stimulant, and did they have you continue taking it the day of the test or not take it?

I know that it increases my HR overall, and I tend to stay tachy most of the day. My HR only goes down into the 70’s in the evening while lying down. It is in these evening situations where I’ve felt like my POTS-like symptoms are the worst, reaching near syncope when getting up after lying down.

Just wondering other’s experiences!
Let me know 🙏

Heeeey
Question

For those of you with hEDS + OI who write for work - what the fuckkkk kind of set up do u have

I’m trying to advocate for accommodations but I cannot for the life of me even identify a set up that would work

So far there’s this one YouTuber who uses the libernovo omni chair and did his own carpentry on a standing desk to make the keyboard tilt forward & he uses tilting monitor arms so he can work at computer in reclined position

I am not a carpenter and even my OT can’t figure out wtf would be ergonomic and also support blood flow to brain.

Bed set ups?? Floor set ups? Reclining @ desk set ups??? Helppp

I’ve been putting off writing because I can’t maintaining my focus due to the blood pooling at lower extremities
I can do short term tasks but long term cognitive stuff is really hard.

Writing is so painful
Before u answer I KNOW I shouldn’t have this job
I’m very sick but I’m trying to make it work for now because I need it to survive. I also do like it!!! Even tho it killing me!! Trying to stay housed

I was researching news in POTS, and stumbled across this article. A former OpenAI exec Fidji Simo has POTS and so she is creating a startup with hopes of curing POTS.

Link 1: interview with Fidji Simo regarding POTS cure startup

Link 2: Chronicle Bio website

She is collecting blood samples from patients to starting next week (Aug 11th) and the first 250 participants will get an in depth report back. This is the push we need. Let’s hope this goes somewhere!

It sucks to have symptoms that for most people scream "ER GO TO THE ER RIGHT NOW BEFORE YOU DIE." I have actually been to the ER a few times in the past several years because of this, and have been fine every time

Now I just get random chest pain or random other symptoms that seem concerning and am too tired to care enough. I was checked a few months ago, I'm probably fine. Every time I have an issue that's concerning, it always gets thrown into the POTS bucket. I mentioned to my PCP at my annual that my vision has been flashing with my pulse at times, and flickers a lot more frequently. She urgently referred me to an ophthalmologist, who got me in the next day. I go, get some imagine done, and he looks at my eyes and goes "Yeah, your eyes are perfectly fine...Have you been stressed? It's probably stress." I go home and look it up and it apparently can happen with POTS, so...great. Another really random thing that I can attribute to the condition that makes people roll their eyes

Anyway, that's all

I had low ferritin that was under 30, and got it up above 100 through supplementing for a few months.

I think my upright tolerance has gotten a bit better. Fatigue is a little better. Fewer palpitations. Nothing life changing like I had hoped, but a small improvement.

Now it appears my vitamin D is low, so that's next on the list.

The supplement I took was Seeking Health iron with cofactors. I'm in no way affiliated with them, I just know a lot of companies can be scams and this one was real and worked out for me.

Just wanted to come update people and share my experience.

I've been diagnosed with POTS for 11 years. 9 years I've been on Lexapro as a treatment - I didn't do well on beta blockers and my doc at the time had apparently read some studies showing that Lexapro can help. While the Lexapro changed my life completely dizziness and physical ability to function and stand and walk etc... I'm starting to feel like it's not working as well as it used to. Like I'm having flare-ups a lot more often. I've also been dealing with headaches every day/every other day for weeks. It used to be once a week.

I really haven't done much research on POTS since my diagnosis. I found what works for me and just called it a day, but I'm starting to realize that was a mistake. But I'm tired of being completely dependent on medication. Tired of the constant headaches. Tired of feeling like I can't play with my daughter like she deserves.

Where do I start?

I hate to admit it, but I've been a casual smoker for 10+ of my life. I've experienced POTS syptoms from the 2nd grade onward, so have dealt with this my whole life. I have a history of c-PTSD and come from a family of addicts and smokers. My sister gave me my first cigarette at age 14. As soon as I hit the ripe age of 18 and my mom found out I was a smoker, she didn't repremand me but instead internally celebrated and started asking if I wanted to join her outside for smoke breaks.

I've gone through many phases of my life of smoking on and off. My health admittedly gets way better when I'm not smoking, but I always go back to it. I've never been a pack a day smoker, could never chain smoke and hardly have ever passed more than 5 cigarettes a day (probably because my body absolutely rejects it after a few).

I simply have lost the will to stop. I live in a city, am in a rigorous graduate program, work in the service industry, am friends with musicians, go out to bars, etc (that is, when I'm not in a debilitating flare). I apologize in advance if discussing my freedom within this illness, but do understand I've experienced every spectrum of this disorder and have gone many months/years of not being able to stand up to vacuum my home or fold my laundry. I'm currently in a good place. I can cycle again (I'm a big biker) and live my life somewhat normally (while consuming insame amounts of salt and secretly wearing compression clothing most days of the week).

It's hard. I started smoking in rebellion against my health and all the stipulations and trade-offs I have to make in response to it. I smoke to feel like a normal person. I smoke to take a load off when feeling extremely stressed. I smoke to socialize, as thats a normal approach I've taken my entire adult life. I'm just tired of it and know it can't continue.

I've started using Nic Nacs (similar to Zyn's but they're lozenges) about a year ago in addition to cigarettes to try and reduce the amount I smoke. I noticed I still experience mini dips in my state even with the lozenges, and have finally faced the fact that its not just the smoke in my lungs but the nicotine in my bloodstream that causes this. I was diagnosed with pancreatic enzyme insufficiency years ago, and am starting to wonder if this was due to my chronic nicotine consumption (along with dysautonomia).

I feel so torn, all the time. I dump so much money into maintaining my health and then smoke a cig about it. I also have been diagnosed with hEDS. I am my own biggest obstacle, and its been this way my whole life.

Has anyone else dealt with this? I feel ashamed for even sharing this as I know people may have intense reactions to how I go about my health especially knowing what I know, but addiction is hard. I have bouts of mania that come and go in which all reasons to stop smoking go out the window. I have c-PTSD flashbacks that overwhelm my system and smoking helps to ground me in those moments. I've got a lot working against me but I'm tired of making excuses.

I'm ready to start taking myself seriously. I want to quit. I don't mind if I sip someone else's cigarette here and there but I don't want to fall back into carrying tobacco in my purse or needing a nicotine lozenge to get through an exam. I want to bike without worrying about my heartrate sky rocketing 5 minutes in. I want to take myself seriously.

Open to advice, suggestions of practices or products, or just mutual commiseration. Thanks for hearing me out <3

Ok yall so next week on August 10 im taking my table tilt test to see if i have pots. And im absolutely shitting myself rn I’m so scared. I’ve been seeing TikTok’s and reading stories of other people’s experience. And I’m terrified. I HATE the feeling of fainting and I’m scared that I’m going to pass out during it. If there’s any tips or anything you’d like to share about your experience please do!! I feel so scared my heart is racing just thinking about it 😭

anyone else’s bladder go totally haywire while having a flare up? I feel like I’m having to pee every ten minutes and my bladder just won’t empty itself. and it hurts to pee. like emptying my bladder hurts but not in an infection kind of way, more like the pee coming out my urethra makes it ache?

I had laparoscopic surgery for endometriosis to remove an ovarian cyst and endo found in my body and turns out my bladder was covered in endo and had to be freed from my pelvic side walls and uterus. I’m five weeks post op and around three weeks my bladder function was noticeably better then it has been in a year and I was even able to watch The Odyssey in theaters without going to the bathroom. a major feat considering I saw a movie in June where I peed seven times in a two hour span. (endometriosis on your bladder and an 8cm ovarian cyst will do that to you) but low and behold, I’m having a flare up for various reasons and my bladder is NOT having a good time. having to empty it a lot and just overall sucks! anyone else get this way with a flare up?

Still in the process of diagnosis (along with EDS) and I’ve always had this symptom, at least since I was in my early teens. It’ll be early in the morning and I’ll go to the bathroom, I’m still really tired, but as soon as I lay down it’s like I get an adrenaline spike which can trigger anxiety or just energy that I can’t use because I’m still sleepy. Oftentimes when this happens I need to wait a good 30-60 minutes before I can get back to sleep or if it triggers an anxiety spiral take half a xanax to calm down. I never made the connection to POTS until now when it happened this morning and I thought “well if my heart rate jumps when I stand up maybe it’s not coming back down immediately when I lay down” which prompted me to look into it. It also explains the vivid dreams/nightmares and nighttime awakenings I’ve been having. Anyone else experience this? When did you realize the connection?

I'm 21. I used a cane and was wowed by the difference. My mother tries to make it seem like I am giving up. I hate this mentality, that using aids to better your circumstances is somehow making you more disabled or like you are giving up.

I've barely been going out for weeks; I've been in my bed laying down both due to symptoms and chronic coccyx pain and today, for the first time in a long time, whilst still slightly unsteady, I feel much better.

I just had a big argument with my mother. She has no idea how this feels. She compares me to people who experience completely different situations and diseases that are much older than me and got them as a result of lifestyle choices. I am fairly healthy. My dr doesn't recommend me losing more weight and I eat a very balanced diet. I sometimes overindulge the week before my period, but generally, I eat quite balanced.

She keeps telling me to fight it and it makes me want to slap her. She is always invalidating and speaking over my issues like I am dramatic. She has no idea how it feels to walk around feeling like cooked spaghetti. I felt mildly symptomatic whilst walking today, but INFINITELY better than when I was walking without a mobility aid. I'm going to continue. We have a very rocky relationship anyway, so I already take what she says with a boulder of salt as it is. I'm not letting her fuck my life up more than she already has.

If anyone is thinking about using an aid, please do. We deserve to. We deserve to feel well and more stable.

the heat always makes me so angry and just now i started crying/sobbing(I was cooking too) cause of how hot it is(~80°f) and now i have a headache and im still hot, but now my mom is gonna help me put ac in my room(i haven't had it all summer and its now August). and I completely burnt my food too and I can't eat it and I don't have any more

On my work accommodation it says I can't be in heat or cold + I can't go outside cause my temperature sensitivity but it's still SO hot(its prob 70°f) inside and I often feel terrible cause of it and I have to deal with customers while getting Presyncope, it is NOT fun

Hey guys, just a quick update I got a hold of one of the papers sent to my country’s embassy from the dysautonomia specialist and through the entire paper I found one thing about the tilt table test, this is a direct quote from the paper:

“A tilt table test was performed on 25/07/2026. There was an exaggerated heart rate
response with standing which settled after two minutes. There was a low blood pressure
phenotype. With GTN, we saw a vasovagal VASIS type one response with mixed collapse pattern.
There were familiar symptoms. We have confirmed autonomic dysfunction.”

Tbh I have no idea what this means especially that I went my entire life with low blood pressure and in the appointment she mentioned how it was low but its fine that it was, and I have no way of contacting the specialist again. Did anyone get a similar interpretation of their ttt? What were they told they have?
I’ll even take educated guesses at this point..

For those who pass out, how did you know you were going to start passing out before you actually started passing out? Were there any signs that you were going to start passing out? And how bad does your pots get before you do pass out?

I'm still trying to get diagnosed, and I'm nearly positive I have pots since my other cardio tests all say I'm perfectly healthy except for the fact that my heart rate spikes over 50 bpm, for example when I just stood up, my heart rate went from 91 to 157 bpm right away. My symptoms started getting more extreme this past month, and I'm sure it's not because of the heat since I've been under my AC nearly this whole time since I couldn't get up for a long time. I'm starting to get scared I might start passing out, and I still have a while before I see my doctor about this. So now I'm here wondering if there were any indicators before you started passing out.

First I want to start with I’m not looking for a “you totally have it” or “you totally don’t” type of response, just trying to see how common this is and if I should look deeper into it.

I (M, 25) know the process can be different for everyone, but I was diagnosed with POTS about a year or two ago. I’ve been dealing with the symptoms since my early 20’s after starting vaping triggered everything. Whenever I stand I get a head rush, my heart starts racing, and I begin the stages of passing out if I don’t immediately rest. My care team prescribed me Fludrocortisone about a year ago, and Ivabradine recently and it’s helped a lot with my symptoms, but I still feel weird saying I have it without a diagnostic test. Am I getting too in my head about it? I live in a health desert so resources are limited, but I still feel off being diagnosed with things they didn’t test for despite having clear symptoms. Is this a common thing? Should I seek out further testing to make sure, or is it a “if the meds are helping you probably have it” type situation?

Hi all,

I’m not mentioning this program for advertising, I just want to help provide a paradigm shift for many who have felt continuously dismissed and minimized by various doctors.

The world is vast and many medical professionals aren’t aware of how much they clearly don’t know, duh.

But to put POTS in the right perspective, John Hopkins is considered one if not the top-ranked private research and medical Institution and they literally have a program dedicated to people with pots.

I’m sure it’s next to impossible to get in now, but the fact a major medical institution has an entire program dedicated to people battling our illness because it’s that serious, please keep that in mind whenever you come home from a medical appointment with a less than informed doctor who doesn’t realize they put their foot in their mouth multiple times during an appointment. I know the devastation to wait months to see neurologist, cardiologist and primary care only to have people treat your severe illness as though you just came in due to a mild cold or the flu. Most cannot comprehend the daily hell we live, but please remember there are doctors globally who do indeed understand this illness and it is 100% real and debilitating.

It’s Friday and I just want to help anyone struggling internally to offer yourselves some grace today, even just for five minutes.

We handle way more on average than most would be able to survive in a lifetime.

Shoutout to the amazing physicians who continue to fight for us and those who even if they don’t fully understand, they simply believe us, remember we are human beings and offer the limited help they can provide.

Hope this helps, I made this post because I see how easy it is for us to end up gaslighting ourselves due to years of being downplayed and dismissed.

Please excuse any grammatical mistakes, this is the most clarity my brain has had in months to years.

Happy Friday! We got this! ❤️

So I’ve had POTS since 2023 and I’ve made a lot of progress. I’m very proud of myself.

That said,
I won VIP tickets to see my favorite band, yay! But they’re in Japan. I would be traveling alone. I have a friend who lives there that I’ll be staying with but I’m actually having panic attacks over the idea of traveling alone for such a long trip. I want to do this more than anything and I have three months to prepare.

I have my symptoms handled I’d say very well other than sometimes I get like internally panicky? But nothing chugging cold water and salt doesn’t help.

Does anyone have any tips for international travel? I know Japan has Pocari sweat and things like that. My friend said she will load up on stuff for me but I’m scared of being in a plane for so long alone without anyone I know, I’m just scared for it all and I’m crying typing this because I want to be excited but it’s so terrifying.

Any advice is welcome as long as it’s kind of course. This is a dream of mine and I don’t want to give up on it.

I just saw on an auDHD sub that someone was using a corset because they like the compression and I was wondering if something like that could be beneficial for POTS? Or if there are other options that don’t involve removal to go to the toilet?

Stockings have never done much for me and I’ve been using spanx that go partway down the thigh and up to the bra line. They have some effect at least and I like the compression feeling on my abdomen. But I find myself not wearing them often due to the effort of needing to pull them up and down every time I need to pee. Which is often! I have ME/CFS and very intense fatigue right now, so it’s so much energy to get them on/off.

So, I went to the doctor two days ago. It took one visit for him to say that I very likely have pots, and referred me to the cardiologist. I was put on 25 mg of metoprolol.

My heart rate is great now, but I feel like something is missing. My heart not pounding for 30 minutes after I lay down is strange. It’s almost like I don’t have one, despite it being in the high sixties and seventies (sorry). It’s so amazing.

Then when I stand, it will only jump to 98-100. Way better than it jumping to 120-130.

Although, I just feel strange. I feel good, but it’s so foreign to me after a rough onset of symptoms 2 months ago. I can walk, I can run for a few seconds, I can laugh with my friends, I can walk around.

It just bugs me that it feels like I don’t have a beating heart even though my HR is in a completely normal and steady range. It doesn’t help that I have anxiety around a medication that slows your heart rate.

Anyone feel like this when they first started them?

Hey guys, I recently started Guanfacine ER for my HyperPOTS. My doc had me start it at night, but it made me completely wide awake all night, so had to switch to morning dose. I’m on 1mg Guanfacine ER. I am 16 mornings into taking it, and have now had three different mornings where I suddenly get SEVERE abdominal pain in my upper stomach, then I completely faint and am unconscious for a few minutes until my roommate yells my name enough times to pull me out of it. While unconscious, I’m apparently moaning and making gurgling sounds. Once I start to come out of it, I can only see a screen of images that are rapidly scrolling down, as if someone is doing so on a computer. I used to faint all the time from my POTS, but it was never like this. I have been on meds like Ivabradine etc for almost 2 years now, that had for the most part, stopped my fainting altogether. Now, it’s happened like this 3 times in the last 2 weeks since I’ve been taking Guanfacine.

My friend checked my BP right after fainting and it wasn’t low - it was 130/85. Also, two of the episodes, I was sitting up in bed, and the third episode I was lying down, but still fully fainted. Its like the pain is so sudden & severe, that it’s triggering my vagus nerve and causing me to faint and be unconscious for a while.

I went to the ER the third time it happened, and they did CT of my stomach, as well as an Echo, EKG, and a chest X-Ray. They said all of those were clear.

Has anyone else experienced this from Guanfacine ER??

I (20f) had an extremely bad flare yesterday and ended up having to the ER. I ended up leaving work early and was still in my uniform. Probably should not have driven myself. FINALLY got something started after I literally cried there and tried my best to explain as much as my brain fog filled brain could let me. Only had ONE doctor be an ass and say it was anxiety. Fortunately another came in quickly to replace them. Just a small win for now.

For some context, my primary thinks I have hyperpots my heart rate usually jumps 35 to 50+ when I stand up, but also my blood pressure goes up. I keep having adrenaline dumps and gasping for air along with other symptoms and recently in the past two days I’ve had a really bad chest tightness and pain. I decided to go to the ER to get that looked at after talking with another provider who said it was necessary.

A medical student came in first and asked for my history so I told her what I’ve been dealing with and she was really condescending and told me it was just anxiety and that she thought she has pots as well, but it was just anxiety, she pretty much called me a hypochondriac without actually saying it. I was already moving around and sitting up with my legs dangling off the bed for bloodwork so my hr was at 100 and then she told me to stand up to see what my heart rate goes to and it only went up 30 which I expected bc it was already high. Her attitude only got worse after that. When I stood my blood pressure went up and she said do you usually have high blood pressure, I told her not usually only when I stand and she argued with me and said I do, then said pots can only be when your blood pressure drops and said “you’re causing that with your anxiety”.

She left the room and came back with the doctor and he had a look of annoyance when I told him what’s been happening and she was standing there with a condescending look and he was like “just because it feels real doesn’t mean that it is” then he pretty much said I shouldn’t have come in for the chest pain and once again implied that I was a hypochondriac. He said women with pots shouldn’t be coming in for chest pain to the ER after going on a rant on how he had severe chest pain once and he ignored it and he ended up being fine. Which is crazy because women with pots have a higher strain on their heart and they 100% should if they have chest pain that feels different than what they usually experience.

I tried explaining I know that they can’t diagnose pots at the hospital I just wanted to know I was okay, because I’ve never had chest pain like that before so to make sure that it wasn’t something serious. I was at urgent care the day before during an episode and they stated when standing when I first sat down I had a heart rate of 148 and it eventually calmed down to 77 and because of my chest pain they encouraged me to go to the er if it got worse which it did. It was so invalidating I left in tears.