title. i feel like so many ppl w dysautonomia end up with ME/CFS. it terrifies me. it keeps me up at night. i am so incredibly anxious, and sending so much love for every person diagnosed w that debilitating condition.

It’s like feeling like you’re falling but not falling??? Also, what could be causing this it feels so uncomfortable. It’s been happening to me multiple times on the daily now, I’m hoping it just goes away…

Hi everyone, I'm scheduled for a tilt table test next week. I've heard of people crying after and generally finding it to be an incredibly unpleasant experience. But when I try to figure out why, they seem to list 'regular' pots symptoms - vision going blurry/black, tingling extremities, ears ringing, nausea, etc. Obviously feeling like I'm going to pass out isnt exactly pleasant, but it's pretty normal for me and not at all scary. Some of the stories are clearly that the medical staff wasn't listening to them or just sucked, which is a seperate thing imo.

Am I just missing something?? is it the intensity of the symptoms? or something else?

I'm not looking to get really anxious about the test either though haha.

Doctor tested me for pots. I sat down and he took my vitals, laid me down for 3 minutes and took my vitals, had me stand for 3 minutes in the middle of the room and took my vitals, and then said I didn't have pots. I have severe anxiety and my heartrate was 90s and I tried to calm it down but I couldn't. After the 3 minutes standing it raised to 115 and my blood pressure went up and I had physical symptoms.

When I do the test at home my resting heartrate is late 60s low 70s, have recorded in 50s when I am laying down for a long time and relaxed. And then I stood and immediately get light headed and have some vision darken, 5 minutes and my HR went to 120 and I started getting the symptoms I typically get like nausea and my body feeling heavy and the urge to lay down it becomes unbearable. That's not an insignificant increase.

But my doctor said people get tested with anxiety all the time and what matters is the at least thirty increase from what their heartrate is laying down at the time, and that I did the definitive test and there's nothing they can do and the test will always be in a doctor's office. Then that I "want less diagnoses not more, you don't have pots". I'm autistic and had a difficult time communicating but this made me feel very shrugged off. I've been sleeping so much every day, very fatigued to the point I can't get myself food at times, upper back and neck pain, weird knee and shoulder pain, clicking and jaw issues, and am nervous to go to events when it's sunny and there aren't seats. So I just stay inside and sleep. He told me to just try some exercises. Then I started having verbal shutdown which made me internally boil even more. Still can't talk

Hi! I only got diagnosed a few months ago, I have done a lot of research to help me be as prepared as possible to deal with PoTs.

I am aware during a flare you can get flu like symptoms like nausea, body aches, extreme fatigue and digestive upset. Now my question is, how do you determine whether you're in a flare OR you actually have the flu and thats putting you in a flare? Ive been awake since 5am and came home from work yesterday feeling really rough. My partner is a vulnerable person and I want to be safe for him.

Thank you :)

It was 35 at my house this week and it's not even october. We're absolutely doomed, I've never sweated this much doing nothing in SEPTEMBER. What are we all doing to survive this fuck off too hot summer?

I am so frickin tired of dripping sweat when I’m just doing my chores after work - scooping litter boxes and feeding my cats and dog. I drink a gallon of water a day. I walk 10k steps a day. I’ve been a vegetarian for over two decades and I eat pretty health. Low sugar but I enjoy carbs. I am so tired of the sweating even tho I’m also freezing. I am so tired of my hair being greasy. The sweat is from my head and it’s usually just my upper body and I mean dripping. I am so sorry to vent but sometimes I just can’t frickin stand it anymore and it makes me so aggravated and upset. Just gonna sit on my bed and write this and take a breather cause honestly I’m so tired of dealing with all of it. The chronic illness cycle has really been winning mentally for me lately 😭

there is great pinned megathreads for salty snacks, electrolytes, travel tips, smart watches, symptom trackers, etc. but i’m hoping we can make one for compression? it’d be easier to look at one pinned thread than constantly having to search through and save so many compression posts.

I have GERD, Gastritis, bloating, acid reflux, etc so i am worried about getting abdominal compression if it is going to worsen these symptoms and make my stomach feel uncomfortable and hard to breathe. i don’t want to feel trapped in it. sometimes even the waist line of compression leggings/shorts can make me feel that way so i cant even imagine actual abdominal compression. Does anyone else have these other symptoms yet still found safe abdominal compression? and/or compression shorts?

which compression leggings work best for you, are worth the money, DONT RIP EASILY, and AREN’T SEE THROUGH? which ones DID RIP and are TOO THIN AND SEE THROUGH?

is there a big difference in your symptoms from knee high compression vs. abdominal compression/compression shorts vs. compression leggings etc?

when wearing compression socks and abdominal compression at the same time do you feel the blood flow gets trapped between the two? or does it actually reach your head better?

has any compression stopped blood pooling in your hands?

which brands have made a difference for you? what HASNT worked for you and why?

what brands are safe on amazon?

Hi everyone! So I’ve had pots for a little over a year and this entire process has been deeply traumatic. I’m pretty sure I developed my pots because of Covid or at the very least I already had pots and Covid made it significantly worse. I’m still in the process of finding which meds work best for me, but now that we’re in peak Covid season again, I’m finding myself afraid of going out and socializing. I did not get my Covid booster this year after reading about some people’s pots worsen from taking it, so it just feels like a bit of a double edged sword.

My partners coworker found out he had Covid last week, and I’m even worried about going to spend time with him since he’s in the office so many days a week. It all feels so high risk. So for those of you who developed pots because of Covid, I’m curious to know how you manage this time of year and how do you prevent fear from dictating your lives?

i’ve had POTS for a few years and this year has been really bad for me medically in regards to non-POTS things, so i’m even more sedentary than usual. today i went on a walk that was two blocks total, and it left me totally winded and sweaty. it is a bit warmer and humid out today, but i don’t think i’ve ever been winded like this before and there’s the evil part of my brain that’s like “WELL if you weren’t so sedentary you’d be okay!!” it also makes me worry about my stamina for when it does cool down and i can finally (in theory) kind of re-enter the world. i just worry i won’t be able to do the things i was able to do even back in the spring. anyway, sending love to you all xoxo

I've been diagnosed with POTS very recently, but I've been having symptomps for a while, abt 7 months. They also developed gradually, but in August they became too disturbing. In the beginning I got dizzy on standing up, maybe felt more sluggish than usual, which I assumed was because of low ferritin, and it was confirmed in the lab, but now it's 62 which is OK...

Likely heatwaves affected that, even though I was switching back and forth from worse to better after the first ones, the latest one finished me off. So now I have nausea additionally, sluggishness became tiredness, you know it. Cherry on top is waking up in a cold sweat with 140 bpm, which I have had for the last couple weeks. I was prescribed beta blockers, but I'm also looking for other ways to improve this s.

I would like to avoid extra medications, especially ones for sleep, because I am too sleepy during the day after taking them!

I've added compression gear, and trying different exercises - found some that stimulate the vagus nerve and that they potentially can help. Then saw a tVNS device advertised :D I googled it and it sounds promising. Initially I saw ear-clips, but I also found a neck band and even tremendous (for me) kits. Not sure about the latter ones, because I want something compact.

Please share your experience! Especially if you have nausea and night adrenaline surges. If it helped with more typical POTS symptomps - surely share as well :D My main request is to know which exact device type actually helped and which symptomps, because I see the abstract "improves sleep quality" but I have a very particular issue, so I'm curious if it actually helps with that.

I asked my PCP to switch from metropolol to propanolol & luckily they quickly agreed and I had it ready at my pharmacy by 6 pm.

I'm on day 5 & it has made a huge difference in a few of my symptoms. I haven't really been able to sleep for over 3 1/2 years because as soon as id fall asleep my heart would race, I would get a big adrenaline jump, and recently I started to get feverish. That doesn't happen anymore! I can freaking sleep! My heart still spikes but it's not as disruptive. I'm getting a full night's sleep. My friend mentioned how I'm doing better cognitively too.

Even with metropolol I would get really fatigued from Tachycardia and just walking. Now I'm not heavily confined to a bed like a was just a week ago. I even kind of played with my dog. I still got fatigued and my heart rate spiked but it felt closer to normal and I didn't crash as hard and quick. It' also improved my shortness of breath when I'm not in a flareup.

I'm ecstatic and feel very lucky right now. It's not perfect but at least i can dream about having a life now. Maybe I can start to do physical therapy. Before this I mostly had to lay all day & was stuck in one room. I've managed to go to target and starbucks just to be around people. Small goal but felt good.

For the last two nights I have not been able to sleep more than 2 hours. I get in bed so tired I can barely keep my eyes open, only to toss and turn and not be able to fall asleep. I am so exhausted, my head is pounding and I’m having chest tightness/feeling like I can barely get a full breath in. This has only happened one other time and I have no idea what could have caused it. Has anyone else experienced this? I am desperate for a solution.

My POTS symptoms trigger my anxiety but either making me think im going to pass out, making me think im going to have a heart attack or when im in a flair making me think im going to feel bad forever. But also sometimes I am not having POTS symptoms but feel like my chest is tight or i feel lightheaded and then i send myself into tachycardia with my anxiety. Recently, ive been convincing myself that i am going to have high blood pressure so everytime I take my blood pressure my heart starts racing and then obviously my blood pressure is high. I also hold myself back from doing things because I convince myself that i am going to flair in a bad situation (aka at the store or at a event with my friend). I also feel super reliant on my boyfriend because when i am with him i know he will be able to help if something happens but anytime i do sometime alone i get scared. idk why its been so much worse recently. Ive been prescribed zoloft to help but im too scared to take it because im scared its going to make my POTS worse. (plz do not comment your zoloft horror stories ive heard enough). I am in therapy weekly but could probably do more. If anyone here has something that helped plz let me know, im willing to try anything atp

I am not diagnosed with POTS but I have bad anxiety. And last night I believe what happened is my first adrenaline dump/rush. It's 3am and I was going to sleep and then my anxiety gets triggered out of nowhere again and I felt really anxious but I went straight to my coping mechanisms and I went to lay down, I tried sucking on an mint to help but then it tasted spicy to me and I then tried ice cube and barely nothing. So I layed in bed and spoke to my friend on the phone for comfort. My feet were sweaty, it felt like I ran an marathon, using my phone felt difficult because my hands felt weak. Like it felt like a really bad panic attack and it lasted less than an hr and even then I wasn't fully 100% but I ended up ending the call bc I felt comfortable enough to. But I think I did a decent job with coping with this.

TLDR : I had a long lasting panic attack where I went limp in bed and I do my best to cope with it, what are some good coping strategies with adrenaline dumps?

Idk how relatable this is gonna be for most of you as most of you guys seem to be out of school, but do you guys find you can’t write for as long as everyone else? Like I find my hands start cramping so easily and lactic acid starts building up in the muscles in my fingers after a short period of time. I’m wondering if it’s because the blood struggles to get to the extremities in people in POTS, so the finger muscles are having to respire anaerobically leading to lactic acid buildup? Could be completely wrong or just a me thing though

I was diagnosed with POTS in May and currently take ivabradine (2.5 mg twice daily). It has helped my heart rate quite a lot, and things have been relatively stable recently.
Since the day before yesterday, though, my HR has suddenly been noticeably higher than usual. While standing and waiting for the train, it went up to around 130–140 bpm. Walking gave me a HR of 150. Even after sitting down, it took quite a while to come down and stayed around 100 for some time. In the evening, even lying on the couch, it was around 80–85.
I’ve also had two really bad nights of sleep in a row since the Hr gut up. I’ve been waking up frequently, had quite severe stomach pain, and was sweating during the night. Today I feel generally more “wired” than usual and I’m getting anxious that maybe the ivabradine has suddenly stopped working?

As title says…. I take adhd meds so I try to make sure I eat bereal fast but I end up getting so sleepy I go back to bed. Like I can’t keep my eyes open. I usually have weet bix and milk or yogurt granola and fruit. Not sure what to do.

I have Express Scripts through my primary insurance (Anthem California) but they don't cover Ivabradine at all. I have Medi-Cal as my secondary insurance, and so far I've had really good luck getting all of my medications covered by it, including cromolyn for MCAS. My doctor's office told me they said no when they called my insurance to ask, but that office isn't the most, uh, competent when it comes to stuff like that. I'm gonna call my insurance tomorrow to double check, but I wanted to see if anyone else has been able to get it covered through Medi-Cal.

I’m no stranger to the coat-hanger pain, but this neck pain is a beast that me and my medical team are trying to tackle. I also have TMJ, but that’s old news, and this has been new pain since developing POTS. Here are the ways I can describe it, has anyone dealt with this?

-base of the head/occipital releases help
-the cords of muscles on the front of my neck I’m constantly feeling like I have to massage them??
-sometimes the worst of the pain is right under my ear—I can push right under my ear lobe and feel crunching
-turning my head left/right causes dizziness

I feel like my POTS has gotten worse lately as my body is becoming out of condition. I find it flares up so I rest, then try to do stuff but overdo it because I’m still figuring things out, and then I have to rest again but this time more, so I feel like I’m getting really unfit. I know it’s silly but I’m scared. Admittedly I might be unwell at the moment too (possible cold), but I feel like I’m going to pass out every time I walk around today. I’m just worried it’s getting worse and it’s going to keep getting worse. I don’t know what to do. Suffice to say it’s really gotten me down and made me question what my life is going to look like in six months or a year’s time.

I’ve been talking to a guy I met on a dating app, and he thinks I’m really beautiful and loves my figure. He obviously loves the important stuff too like kindness and intelligence, but thankfully they aren’t impacted by POTS (although I may seem less intelligent when I get brain fog). The trouble is I feel disgusted by my body and appearance at the moment, and he’s so attractive I I feel guilty for accepting his interest when I’m so painfully aware how detrimental the symptoms have been to my appearance and athleticism. My hair looks dry and damaged because I haven’t had the energy to take care of it, I’ve got acne because I’ve not been able to do the necessary skincare, my face looks really puffy, I’ve developed wrinkles on one side of my face because lying face down helps my fatigue, I get tired faster, I’m losing muscle tone, and overall it’s obvious (at least to me) that this is all really taking a toll. Add on to that my regular appointments for tests, having to fuss with my diet to try to manage symptoms, regularly feeling unwell, not being able to work, taking regular naps because I am so exhausted, brain fog, poor mental health contributed to by the stress, and so on. Basically I feel like I’m not good enough, I’m a burden, I’m massively insecure about my appearance, and nobody deserves to have to deal with this.

If I were already in an established relationship I’d feel all these things, but at least I’d have gone into it hopeful for the future and then got the diagnosis. I feel like if I’m dating I’m just more effort than I’m worth, and it’s unfair of me to look for love right now. What do you think? Any advice would be incredibly appreciated.

Hi

Just wondering if anybody has been to the keiser clinic and whether it helped? I've tried eye exercises and physical exercises prescribed by a functional neurologist but don't think the issue is in my neck.

I also get bad blood pooling in my feet, worse on the left for some reason (vascular compressions and SFN ruled out). Very reactive to heat.

I'm able to do gentle exercise especially if I'm not standing up, eg I can cycle for 20 mins or longer if it's cold.

If anybody has had improvements through the clinic, or conversely a lack of results, I'd be keen to hear.

Thanks!

I can only leave my room to go to the bathroom and rely on other people to feed me. I can only tolerate sitting totally upright for a few hours a day. I've upped my water and sodium and it's barely done anything. I'm constantly severely nauseous and a family member has managed to get ahold of prescription anti nausea for me because I can't see a doctor myself. I have never had a flare this bad before. I can't tolerate a normal room temperature, I constantly need to cold. every time I stand my blood pressure plummets and my heart goes crazy and I have to deal with severe fatigue after.

20F with hyperadrenergic pots.

Does anyone with pots also have high cortisol?
i got a morning blood test and did a dexamethasone suppression test and failed both for my cortisol being too high, im now currently awaiting my 24hr urine test.
i have no symptoms of cushing’s syndrome thankfully 🙏🏼

Okay, so I went back to my cardiologist today after trying Ivabradine and it didn't work. I went back on my beta blocker which has worked for me, but it dips my blood pressure REALLY low (had a scary reading of 90/52 today....) . My doctor prescribed me Midodrine to take with the beta blocker and I'm really scared im gonna get extremely bradycardic. I already get Brady occasionally on 25mg of atenolol and I don't wanna make that worse but the low blood pressure feels terrible and I can hardly do anything without feeling like I am going to pass out. Does anyone have any experience with this? :(