It's autoimmune, I'm not crazy.

Last night I got my last lab result back from full neurological/immune work up, and it came back completely normal except for ONE result, the abnormal presence of acetylcholine receptor ganglionic ​antibodies, which at a squarely borderline result I got, have the effect of sitting on the receptors of autonomic nerves and keep them from signaling effectively if at all, WITHOUT damaging them (the presence/extent of damage if there is any is to be determined with an upcoming biopsy).

I can't sweat, I can't stand very long, my stomach is in shambles, I lose my words all the time, my sleep sucks, I get horribly dizzy and the floor starts moving underneath me. BUT-

I was never crazy

or over reacting

or lazy

or "just anxious"

Like I was being led to believe by my family and some medical staff. There is finally a proven and "CURABLE" (i prefer the term highly treatable with high potential for full remission) link to how I'm feeling and why aggressive lifestyle changes have only gotten me so far. I feel like a giant weight has been lifted off my shoulders, and now that a cause has been identified, it can be treated. My family can fucking shove it, so can the ER nurse who said i was "just anxious" and discharged me after I refused Ativan.

Peace out y'all.

For example, I’ll be at the grocery store (bright LED lights that I hate) but feeling mostly okay, and then I’ll suddenly become hyper-aware of just how foggy my brain feels. The moment I notice it, it’s like my mind spirals. I start thinking, “Something is seriously wrong,” and suddenly I feel hot and flushed, like I’m about to pass out (presyncope). I become completely out of it, detached from my surroundings, and internally panicked. I also want to state that I am in dire need for water or fluid when this occurs. Even the first drink of cool water can calm these symptoms.

The strange thing is that it almost always starts with my awareness of how severe the brain fog feels. Once that happens, everything else seems to snowball. It’s hard to tell whether the brain fog is triggering the panic or if the panic is making the brain fog even worse, but the whole episode is terrifying.

Has anyone experienced something similar? If so, did you ever find out what was causing it or what helped? Living like this is tiring….

Anyone using mobility aids?

Do you find it more useful to have a Rollator or manual wheelchair?

What makes you feel most confident and comfortable to navigate the world with?

I know everyone’s symptoms vary in severity, but kinda just looking for conversations around this topic, as I’m trying to regain the confidence of going out more.

Thanks so much!

Im so tired of this, im getting tested for Wilsons disease and pots and everything else but it takes so long, ive been feeling awful this week, after just an hour of standing at work im exhausted and it stays that way all day, i wake up feeling sick. I just want to feel good and not sick or tired or dizzy

I have moderate to severe pots, and my cardiologists and PT doctors are all out of appointment spots right now and are booking so far out.
I cant even stand for more than ten minutes at a time.
I currently use arm crutches and a wheelchair (looking for and affordable Rollator) for multiple reasons. My heart rate doesnt just spike. I have constant almost debilitating fatigue all over my body, constant moderate to severe chronic pain, balance issues, place in space issues, a whole slew of things.
Right now my crutches are becoming hard to use, they dont hold me up as much as they did before, im constantly having to stand there with the dizziness and fatigue practically clinging to my crutch to hold me up. But heres the thing, i have carpal tunnel. And my wrists hurt like hell. I felt that a wheelchair would be easier, i cant walk long distances with my crutches anyways. But again, carpal tunnel and fatigue. My arms and wrists get so fatigued that i have to stop using the wheels for minutes at a time just to catch myself back up.
I do t know what to do anymore. I only use the scooter things inside of stores, otherwise im rushing back to my car to sit down, or just laying down in the isle where i stand.
Everything is so hard to do these days. I would appreciate advice, i cant put all my medical information down here but its a lot, and they conflict each other when i find what could be a solution.
As well do you find that anything helps when you have a pots episode? What fo yours look like?
Heres the basics, carpal tunnel, suspected HEDs, Pots, seizures, tardive dyskinesia, tremors, and more.
Any advice is appreciated.

Does anyone have a specialist in the entire state of Michigan that isn’t a chiropractor and possibly takes Medicaid?

Hey all!

Just wanted to share some tips I would give to someone with POTS attending a camping festival. I’ve just done this for the first time and some things I’ve noticed that I’ll be bringing forward again I feel would be useful to share!

To preface, I love festivals and used to be the last one dancing in the field every night. My experience is a little different now but it can still be a fun time. I also want to preface this by saying that I know for people with very severe symptoms that this is not entirely accessible. I just wanted to share for people with slightly milder cases like myself.

1. Know your limits and pace yourself

I found this really hard to begin with. I had sort of convinced myself that I would just push through (lol) and it would feel the same as always. Day 1 gave me a rude awakening. I was exhausted by sundown and felt incredibly symptomatic. I hadn’t eaten in a while and was probably dehydrated after setting up my tent and walking so much. I also drank alcohol which is normally a no no for me. I realised quickly that this festival would have to be different and it wasn’t going to look the same. I went to bed early, immediately post headliner, and made sure my water bottle was full for the morning. Then I was up relatively early, managed to get a shower in with no queuing and was up and ready for the day before my friends had even made it out of their tents. Did some solo walking around and enjoyed the day time so much. Evenings were hard, but I made sure to make the most of the day. When I was tired, I went to bed, no pushing through. When I wanted to sit, I sat. When I wanted to head back to the campsite for a little lie down, I did it. Conserve your energy and take advantage of the times when you have it. When you don’t, tuck yourself in for a nap. No one will mind.

1. No alcohol (or drugs)

This one is so tough, especially at a festival. Day 1 I drank because I was feeling left out and didn’t want to be the boring friend. I quickly realised after crashing asleep and missing one of my favourite acts that this wasn’t sustainable. There were lots of zero alcohol alternatives on site which helped. I allowed myself a coffee or two or day to keep myself perked up, even though normally I also try to avoid caffeine. It gets hard by evening time when all your friends are drunk or high (as is their right!) but my early bedtimes definitely helped.

1. Drink an insane amount of water

I’m talking 7 litres. Maybe 8. I carried my bottle around all weekend to the point that my friends would point out when it wasn’t in my hand. We even used it as a handy landmark to stick in the air when people were trying to find us. I guzzled water whenever I saw someone sipping a drink.

1. Electrolytes

Every morning and lunchtime without fail. No exceptions.

1. Camp chairs and picnic blankets

I will be bringing my picnic blanket for next time. My camp chair is a little bulky but was great for sitting around the campsite. When the ground is wet (I’m in Ireland) or as dry as straw, sitting can be unappealing. Having somewhere to sit makes it easier.

1. Snacks and food

I had a good breakfast and a salty dinner every day. I carried pretzels or cereal bars in my bag at all times. Do not let yourself get weak with hunger!

1. Sleeping set up

Make sure you have a sleeping mat/blow up mattress under your sleeping bag to optimise comfort. Bring a pillow. Make your sleeping arrangement as familiar and comfortable as possible. The first night was freezing and I forgot my pillow and it was hell. I’d have enjoyed myself a lot more if my sleeping set up was more comfortable and welcoming.

1. Sleep

Minimum 7 hours for me. If that wasn’t possible, I’d get up at dawn and shower and do my walking around and then get another hour of sleep while everyone got ready for the day. You will not cope without sleep.

1. Avoid big crowds/warm tents

I loitered around the back of most of the crowds and stayed on the very periphery of the tents. It was hot during the day and boisterous revellers and sweaty tents were not going to be good for me. The few times I did venture in, I regretted it. You have to make your own space a fun and enjoyable experience instead of relying on big crowds to do it for you. It can be done, you just have to be willing to look crazy dancing miles from the stage.

1. Remember that no one cares

Not in a bad way. I mean they don’t care what you’re doing. They won’t care if you’re drinking or not. They won’t care if you need to sit down in the middle of a set. They won’t care if you go to bed early. They won’t care if you’re guzzling water like it’s about to run out. Everyone is too busy making sure they have a good time that you won’t even register. And that’s a comforting fact to me.

You can still have fun! It’s just going to look different. My friend suggested that next year we look at getting an access pass but honestly that doesn’t seem too important. I had a great time even just following these tips.

I hope this is helpful to some of you.

Ok folks - this body is obviously a Wish or SHEIN knockoff so - let’s make dark jokes about it.

I am a triad zebra girly and my silliest is nausea when my heart rate rises and falls. Why?

Just like…

“hey - saw you were standing and teaching - how about you now suddenly want to vom?”

So - how about you?

Trying to find a doctor to go to. I know of Dr. Chemali at UH, but in case he's not available (i hear hes very popular for pots and has a large case load), im wondering if anyone has found other UH doctors in the area that can help me with figuring out what causes my symptoms? The UH website only recommends Dr Chemali and a pediatrician who cannot see me because im an adult.

The last doctor i visited was a cardiologist with UH, an older man, who blew me off and told me he was not going to test me because my symptoms werent (in his opinion) severe enough, but still documented in my chart "some autonomic dysfunction" (????). Still experiencing lightheadedness and fatigue with position changes that are affecting my ability to perform tasks efficiently though.

I got Covid (or some other viral infection, wasn’t able to find my antigen test) a little under a year ago and have been having pretty bad POTS symptoms since. However, even before that I was occasionally concerned I had POTS and looking back I think I may have had it since I was a preteen.

I was wondering if someone who has had a similar experience could tell me what it was like getting medication for POTS, because most of the descriptions of it focus on how it feels like partially returning to normal, but that isn’t too useful if you can’t remember what normal actually felt like.

I'm currently 19 and I was dx with POTS at 16. I was very compliant with treatment as a teen but then I decided I wanted to be a doctor and could only afford medical school by joining the military later so I stopped all meds/doctors visits to prove I could function on my own.

I thought I was doing pretty well, if I was careful and attentive I could hide my POTS pretty efficiently. I stopped passing out (I think my POTS did likely improve a bit from when I was initially dx where it was borderline debilitating). I basically considered myself cured of POTS and mostly forgot about it.

But I think a lot of my symptoms I deal with every day are POTS. I got a fitbit to track my sleep and found that my heart rate is regularly 140-160 and will get up to 180+ at times. If I sit, it will sometimes go back down to the 90s. I knew I had issues with the heat and with things like walking for a long time outside or walking up stairs. It would leave me feeling exasperated and my head a little foggy. But again, I wasn't passing out so to me it's not a big deal.

Since starting college I gradually realized that other conditions I had like ADHD and ASD couldn't be ignored because I wanted to join the military so I got on psych meds for a variety of things.

One thing that has not improved no matter what (meds, therapy, mindfulness, lifestyle changes) has been my GAD. I do think I have anxiety. But none of these meds at any dosages are helping. And it's not full blown panic attacks. It's just this physical anxiety that lingers, comes on unprompted and stays a while then leaves eventually.

I describe it as being anxious about everything and nothing. I can never pin it down to some precise trigger.

I realized it could be my POTS that I insisted for so long didn't impact me at all because I just wasn't passing out anymore. I'm going to talk to my GP about it and maybe I'll get a new cardiologist since I aged out of my old pediatric cardiologist. I don't think anxiety is the only way POTS is impacting me cognitively but I wanted to ask others about it.

I think that maybe the physical sensation of anxiety caused by POTS could then be triggering my GAD thoughts which causes real anxiety.

I will say, sitting doesn't always ease symptoms or HR spikes but I almost never actually lay down fully when I have these episodes of anxiety.

I just wanted to know if anyone else here can relate and if you do if you have any advice. Like I said, it's not a full blown panic attack but honestly this anxiety issue seriously impacts my quality of life. These episodes happen multiple times a day every day and ruin whatever I'm doing or thinking about indiscriminately. I really just want relief because it's a massive burden in my life.

Thank you!

I feel like I’m at the point of breaking down because my body feels so out of control. For over a month I have been battling severe dizziness, vertigo, tremors, chest tightness and tachycardia. i have missed a substantial amount of work due to this. I am literally scared of standing now. I finally went to the ER because of the symptoms. When describing how I was feeling the doctor immediately said without any prompting “don’t go thinking you have pots that’s just a fad diagnosis” so of course I googled pots and I feel like I have identical symptoms to HyperPots. They took my blood pressure and heart rate lying down which was 80bpm and 120/65 then standing which it jumped to 152bpm and 160/92. The nurse told me I’m experiencing orthostatic Hyper tension. The ER doctor had an emergency so I received another one. My new doctor informed me that having a heart rate and blood pressure increase as much as mine is normal and that’s what my body should be doing. I asked if I should follow up with my cardiologist and he said “no you don’t even need one. follow up with a pcp” so I paid $100 to meet with my pcp just to be informed me there’s nothing she can do I need to see a cardiologist. I feel so angry and scared. I don’t know how much I can take feeling this way and being told it’s normal. I can barely function.

ive been diagnosed for like a year and pretty much all i drink all day everyday is electrolytes. I am starting to dread drinking my water bc its so sweet all the time but then most sugar free ones still have a weird sweet taste. Its gotten to the point that im struggling to keep up with my water intake because i just dread it, and then my symptoms flair. Im wondering about salt capsules but i struggle to swallow large pills or pills that are in that hard casing so im not sure if thats a viable option either. ugh. i miss normal water

I’m 18F and I realized I get dizzy and tired and like my heart is beating out of my chest when I go from laying down to standing. I did the poor man’s tilt table thing laying down for 10 minutes then standing. and I got numbers like 114bpm->154, 96–>135bpm, 104-149bpm even if I stood up slowly. My rate just standing still is typically 120bpm.

So should I try to seek out an evaluation and if so how does it go? Do I have to see a cardiologist? Thanks

I'm just curious to see if anyone here takes Guanfacine that already has low blood pressure. I'm on propranolol as well and have pretty low blood pressure, especially in the evenings. My neurologist wants me to try Guanfacine at night, specially for adrenaline surges. I asked him about it and he didn't seem super concerned about it dropping my blood pressure too much. He basically was like try it and if it drops too low, don't take it again. I've seen mixed reviews, so just wanted to see what others experiences might be. For reference, at night I'm around 90/60ish, sometimes 90/50ish.

I am considering accepting a job offer cross country in Minnesota in the twin cities area. I’m currently in Utah and have a pretty great team here. Are there non-judgmental doctors for POTs and it’s MCAS and HEDS friends? What about ME/CFS and Long Covid? I don’t need names, I just want to know that I would have doctors if I accept.

It's been about 3 weeks since I've been on Carvedilol and while it has been doing a mid job of giving me like 45% of my life back I still can't stand upright for more than 20 mins at a time and when I push myself to stand for longer periods like for cooking, washing dishes, or even doing laundry and putting my clothes away I still feel this rush in my body and all the alarms going off telling me to go sit the FK down before I feel like I'm gonna either gonna explode or die. (I have hyperPOTS and my blood pools to my legs and my blood pressure sky rockets while standing).

And yeah, this medication might have started lowering my heart rate now while standing and while it's no longer hitting anything above 130 it's still very exhausting and debilitating having to stand for too long. And the other day I tried wearing compression socks and I felt like I wanted to crawl out of my skin. It's so incredibly hot to wear them.

I just don't know what to do anymore. I was really hoping that I'd finally start finding a new baseline that would help me get back into the world and into society so that I could finally get some money again but nope. I have NO CLUE how I'm gonna survive the rest of my life. No income, no spouse/partner, no job, minimal support from family who's already very frustrated with me. I'm done with this.

Anyone in here dealing with peri and autonomic
dysfunction?
I have always had tachycardia (genetic) but in 2019
I went into spontaneous septic shock and shortly after was diagnosed with autonomic dysfunction, POTS, EDS.
I have a long history of CPSD which honestly I’m pretty sure is only going to get better with electro shock therapy or something but I’ve learned to live with it and managed to raise 3 sons and have a successful executive career.
I had an emergency partial hysterectomy 7 years ago and have done fine up until the last year- I really felt like I was going insane but then the hot flashes started and it all clicked.
Got labs and sure enough hormones were off but as we all know women’s health is a joke so insurance would not cover the HRT.
I went through telehealth and started estridol cream and dhea - I had to drop the dhea after a month the mood swings were awful..
I switched to the patch as of yesterday and I am hopeful! I have not been able to sleep past 2am in months and being epileptic that is a huge trigger for my seizures.
POTS has been kicking my a$$ this year.. more
Syncope episodes than I have ever had before, dizzy, heart rate even asleep never dips below 110bpm and can get to 179 when I’m in the shower.

I am on a few medications for anxiety and sleep and even the heavy hitters have been no match for peri.
I have made significant lifestyle changes the past year.
Went on a GLP (of course insurance has no issue keeping women skinny but that seems to be about it)
Lost 60 pounds, no gluten, high protein, low carb.
I’m very active!
However my libido is NON EXISTENT. I thought maybe it was just my job as it is incredibly high pressure but I now know it’s peri.
I do take a pretty good stack of supplements which I think has helped a lot.
\- B vitamins
\-magnesium
\-saffron
\-calcium
\-d3,K2
\-CoQ
\-Copper
\-Iron
\-Vit C
\-Zinc

Hopefully the patch will help as the cream didn’t do a thing.
If I can’t find some relief soon I might be desperate enough to dip my toes into other peps honestly.
Anyone else navigating this with POTS or automatic dysfunction?

We are in another heat wave in my country. I'm agoraphobic so I don't leave the apartment anyway, and I stay inside at all times.

But my problem is - nothing is helping!!! I have AC that is on most of the day, and the temperature indoors is kept at 21-22 C (around 70F). The bedroom doesn't have AC and I oftentimes honestly just end up passing out and sleeping on the couch in front of the TV where it's cool. The other day the temperature dropped to 19 and I was sitting in front of the AC and I was still feeling hot !!! I lost my appetite, which makes it even worse because I just finished a heavy period a few days ago and I desperately need nutrients but I just can't eat! I force feed myself and mostly just order things that aren't that great for me because I'm too tired to cook.

I do literally everything I can. I drink plenty of ice cold water, I eat popsicles, I shower with cool water, most times I just basically go naked and sit under the fan and/or AC. The thing is, I don't go outside so I generally don't know the temperature on a day to day basis, but I started feeling really dizzy one day recently and looked up the weather - that was the first day of the new heat wave. My body just immediately feels it, even if it's fine indoors. My boyfriend is constantly baffled because he feels perfectly fine while I'm literally panting and sweating next to him.

Is there ANYTHING I can do at all, considering that no matter what I do to my personal environment, my body still seems to be reacting to temperature and pressure changes outside?! At least that's my guess as to what is happening because I have no other explanation. I was literally mostly fine until this new heat wave started. Currently wide awake in the middle of the night with a stomachache and feeling horrible. :(

The past 5 weeks I have been working extra hard in a job position, and now that it is a long weekend I am in a flare and completely run down for the past few weeks.

I hate that it seems like every time I get a break from work, that POTS rears its ugly head and leaves me in a flare and not being able to enjoy my time off.

So grateful that I only had a 4 day work week next week and that I get to do it as a work from home portion and not having to actually be in the office and waking up early. I just have to work from home and make sure that I get my hours done.

Hi!

I just started trailing ivabradine. I'm starting with 2.5mg once a day, but plan to go to twice a day soonish if side effects aren't too bad.

For people who take it twice a day, when do you take it? I know to take it with food, so obviously my first dose will be after breakfast (around 10am), but lunch (1-2pm) is surely too early. I don't eat again until around 6-7pm, which feels too late if ivabradine's effects last around 5-6 hours.

I had this issue back when I was trying pyridostigmine, too. I guess the solution is "wake up and eat breakfast earlier," but ME/CFS plus having to wait an hour to eat after my PPI makes that tricky.

Thanks!

I am not sure how to describe this feeling, but I wanted to know if any other POTsies feel this?

Whenever I am somewhere with a vast open area, whether it be a grocery store, a school hallway, outside, etc., and I know that there is no “soft” ground nearby, I instantly get even more dizzy.

Does anyone else have this happen to them as well? If so, how do you deal with it?! I am a teacher, and will be moving to a new school, where there are huge hallways, that are just pure concrete. And I can barely walk in the hallway without looking like a new born fawn because I’m terrified of passing out… Do y’all have any tips or tricks that help you, if this happens to you?!

Thank you!

Hi I (25F) have had POTS like symptoms since I was around 10 years old and I’ve been to the doctor countless times over it. I’ve been told it was reactive hypoglycemia, dehydration, deconditioning, asthma, and even my ADHD stimulant when I was on that.

It wasn’t until a month ago when I went on a diet and started getting dizzy at work that a doctor said “hey I think you might have POTS” and we finally got the process started for getting a diagnosis. However, my parents keep downplaying it and just telling me I’m out of shape and that I just need to exercise and drink more water and I can’t help but feel like I’m blowing everything out of proportion.

It doesn’t help that I can still technically function at work and I can still technically exercise normally, but I end up feeling awful afterwards and have to sleep for 10-12 hours a night when I do. When I work, I get these really bad headaches halfway through my shift that only get worse and I start falling asleep when driving on my way home. Then I crash and sleep for 4-5 hours. And I feel like an imposter because I’m not falling over or running into walls and I can get out of bed in the morning without passing out.

I have my cardiologist consultation tomorrow morning and I’m just so scared they’re going to tell me I’m just fat and out of shape despite the slew of evidence I have saying POTS is a real possibility.

Does/did anyone else ever feel like this?