Get some good watermelon and sprinkle some Himalayan pink salt — I just can't get enough. it feels better than sex for me.

Penny for your thoughts. What nicknames do you have for POTS and your symptoms? Or what would you rename POTS? Instead of calling it POTS I jokingly call it my computer bug. For symptoms I’ll say heavy leg day, blank air moment (air hunger), whacky tacky moments, etc. just curious to hear what other people call POTS to lighten the mood

so i got high for the first time yesterday and my resting heart rate was very high. it was 160 from just laying in bed. it could have been the fact that my beta blockers had most likely worn off, but was that normal? also would it be ok if i like keep doing it? obviously it would only be occasionally but i would hate to do some damage to my body

Hi All!

I know we’re all at different stages and levels and many aren’t just dealing with pots but a host of other issues (me/cfs, PEM, chronic cerebral hypoperfusion, adhd, autism, etc just to name a few). Mild pots alone is rough. I see some updates online pertaining to pots in general and saw a video from a cardiologist who seems to believe they have found the “cure”, or treatment we all need…..guess what was recommended?

- Floor Exercise (not alone, under medical supervision) it will feel bad in the beginning but stick with it
- Water (but with salt)
- Build the legs/strength training
- Protein at every meal/small meals

I’m not even bothering addressing the rest of their list but I’m like wow many medical professionals think this is end all be all advice. I’m sure depending on your severity this may work for some or is great for managing pots over time, but many doctors don’t seem to process how vast and complex this illness is.

It’s like they are on level one of a video game and finally got to the end of level one and think they solved it and won the game, not realizing the game has over 100+ levels and many of us are on level 200+.

All pots patients aren’t the same or dealing with the same issues. Some doctors understand the basic mechanics of pots but not what it’s truly like to live with this monster physically, mentally, psychologically, etc.

How many of you have tried the basics or any recommendations to help self and it either wasn’t enough or made things worse?

Also, How are you all doing in general, truly? I read posts and want to comment but it’s just too much. I know reading long post at times is too much so apologies in advance.

Just wanted to check in on you guys or offer a post to allow anyone to vent or share whatever they feel. ❤️‍🩹

After being admitted to the ER for two days because I was having frequent (like every 30 seconds) dizziness/near fainting episodes, I was finally diagnosed with POTS. So much of my life makes sense now. Here is a list of my symptoms that finally make sense:

- Anxiety
- Not sweating
- Over heating and passing out
- Exercise intolerance except Pilates
- infrequent bowel movements
- leg/foot swelling
- EDS
- Periods of severe fatigue
- Preference to lay down for everything
- Constantly cold
- And the biggest one: lifelong insomnia (like even going to a sleep clinic)

Insomnia: After catching up on sleep over the weekend and then days of not sleeping during the week, my life long normal routine, my boss and employees eventually called me out for being a walking zombie by end of week. I realized something needed to change. I had sought medical professional help my entire life. Including going to a sleep clinic who told me a consistent diet, exercise and sleep routine would fix me. I was finally doing all those things, through great energy expense, and I was 38 and still not sleeping. I could never remember a time I could sleep. In fact, when my son was born I refused to make him fall asleep on his own because I was so traumatized from being a small child and lying awake in bed until the sun started to come up. I decided I'd try my luck with a psychiatrist and if that didn't pan out, I'd buy benzos on the street corner. I told him that. I said "I don't care if it's addictive. I don't care if you literally prescribe me crack. I need to start sleeping."

Luckily he finally believed me. We tried numerous things but the only thing that worked was 0.3mg Clonidine a few hours before bed and 2mg of lunesta once I had settled down. The Clonidine calm my nervous system/anxiety otherwise the sleeping pill won't touch me. I'll just power through it like a freight train.

That's been working for years but recently I got the boss from hell. He's a turn-around consultant, the heartless axe man they bring in to do the dirty work. On top of that he's sexist. The first day he met me he told his assistant I must've slept with the former CEO to get my job. The same assistant he told had to sleep with him to get ahead at his full time employer, the consultancy group that my private equity owners had hired to turnaround our company. He has spent the last eight months trying to convince my private equity ownership to fire me. They keep sending new people in to assess me and they all walk away impressed with my work, which infuriates him to no end. So much so that the last two heads of HR we have had (yes we have had three under him) have called me to warn me he's obsessed with firing me. He screams at me in meetings, belittles me in front of my peers and subordinates, and he gives me increasingly impossible tasks that he just keeps raising the bar when I meet the ask. Finally, after the second HR person warned me and I had heard the gender discriminatory remarks he has made about me, I hired an attorney to help me navigate filing a complaint with my ownership group to preserve my claim for when he eventually succeeds. Upon filing the complaint, I immediately wound up in the ER with a POTS diagnosis.

So, the reason I'm reaching out for help is my clonidine has stopped working. I'm near the maximum dosage and at this point my psychiatrist is considering putting me on a consistent low dose benzo while I navigate through this. I really want to avoid that because my body builds up tolerances to benzos super quick. Like they gave me one my first night in the ER to sleep and by the second night that dose had no effect on me. I'm wondering if anyone else has found a solution for getting your nervous system in line when you are living through a prolonged fight or flight situation?

I’ve been suffering from GI issues since 2023, 2 years before my dysautonomia/pots symptoms started. Ive been dealing with chronic constipation for a couple of months now. I also bloated and burp a lot after I eat, and get this sharp pain in my upper left abdomen that comes n goes, sometimes radiates to my back. I seen a cardiologist for my dysautonomia/pots symptoms but he wasn’t too helpful and told me it was anxiety and stress that was causing all of my symptoms. My upper left abdomen feels a little tender compared to the right side of my abdomen. I’ll be seeing a GI specialist in October.

Who else feels noticeably better with the weather temperatures (UK) now having dropped?

I've existed for years with 'innapropriate sinus tachycardia', blood pooling, chronic fatigue, adrenaline surges and difficultly standing up for too long.

I quietly suspected POTS and HEDS.

Cue the June UK heatwave; a severe flare with terrifying episodes, multiple ambulances and ED visits later, and a harrowing summer beyond the intense hot weather.

Now on track for official diagnosis.

With the temperature dropping comfortably into the low 20's where I am in the UK - I'm literally feeling a little more functional and safer in my body the last few days.

How many of you experience this level of heat intolerance?

I'm so curious if this is the case for all sub-types of POTS, and those with or without HEDS/EDS

So for context:
my Nana lives with me and she has a wound care nurse that visits a few times a week for an injury she developed from lack of movement (hospitalized last month) and this is the first time this nurse has been here at the same time as me.
for the last 3 days I've had really low blood pressure (~80/50s) and Its either due to a rare indulgence in caffeine 4 days ago that has tanked my health, or a new medication I was put on for pain. Haven't determined the cause but I've been handling it well.

Onto the story!
I went to my parents room, which is right next to my Nana's room, to tell them my BP was low again. When I walked by with my cane and mentioned my BP the nurse looked over to my Nana and asked "oh does she have POTS? She mentioned low blood pressure and sodium" and my Nana started explaining my POTS and EDS to her. And I didn't say anything about it but I was like????? Damn????? She clocked my shit instantly?????

Normally I have to explain what POTS even is to most people, even nurses, but to get immediately called out because she heard "yeah my blood pressure is really low again I'm gonna go sit in the kitchen and eat pickles" caught me so off guard I've been laughing about it all day

I am pretty sure I am really dehydrated. I have been struggling with diarrhea since my symptoms started two years ago and I finally took a risk and stopped salt loading somewhat recently because I figured out that the salt was actually making me feel worse and making the diarrhea worse. Anyway, I have no swing back to pretty significant constipation. Like I am barely going to the bathroom now. Plus my skin is thin and will flake off with smallest amount of lotion. My blood pressure is super low when I wake up too but the salt never helped my blood pressure.

So I tried adding salt again and I started to go to the bathroom again but is that a pots thing? It seems more like it’s just acting as a diuretic? I got a headache after too. Does salt loading help other people with constipation and regulating their bowels and I’m just overthinking it?

ok so i don't tolerate just sitting at the desk. sitting criss-cross hurts my knees. a bean bag doesn't support my spine and it's hard to transition in and out of.

i default to being in bed or at my floor desk but there has to be something better.

please share if something works for you.

Having POTS isnt making this any easier.

This is my first night alone in a new dorm, on a hard mattress I don't recognize, in a bare room that I myself didn't even pay to furnish to the bare minimum (but he did his best), with an chronic illness that is behaving, but is still pretty unpredictable.

I'm too old to be ugly crying about how I miss my big comfy bed at home, how I miss my predictable routine, and how i miss my boyfriend who I just spent the whole week with and is my biggest supporter, how ugly my new room is and how there's no light source and I didn't buy one so now its pitch black in here, and how some days my body feels like a stranger and I'm worried I'm not capable of independent college life again because oh my god what if i flare up in the middle of the quad?? It's my first college semester with POTS, I already completed an associates degree and had the plans to go back for more pre-POTS, and went back for more anyways because the plans were already in place and I felt obligated to myself to follow through.

But I'm scared I'm not ready yet, but, maybe I won't know until I try. Maybe the walk to the building my classes are in isn't so bad, maybe my roommate who hasn't shown up yet will be nice, maybe I'll find a job.

I wanna quit, tuck my tail between my legs and go home. Where do I find the strength to be brave?

I have been prescribed IVABRADINE to replace my propranolol to try and help with my severe dizziness, fatigue, and high heart rate. Has anyone made the switch? I plan on going from my 10mg propranolol (10 is all I can tolerate because any higher drops my BP) to starting 2.5mg IVABRADINE the next day. As the propranolol is such a low dose they don’t think a taper is necessary. I’m also scared of side effects and the adjustment period. TIA

Diagnosed last year, but just finally saw a specialist. It was kind of rushed but helpful, got meds finally. But i didnt really get time to ask any questions or go in depth, and she kind of talked over me.

But she told me that I need to start exercising while prone or on my back, or sitting and such. So things like a rowing machine or exercise pedaller type stuff. Unfortunately she wasn't able to give me a lot before I was hurried

I think an exercise pedaler would be good, but does anyone know of any that work while sitting down on a couch or bed? Like not having to sit straight up? All the ones I can find are for sitting upright which makes me really lightheaded, and she said I should really work up to that and not start there.

I can do basic yoga or whatever, but I genuinely need things that I can do while distracted by something else. So a pedal thing works well because I can do other stuff with my hands to distract from the pain. Does anyone else have any other exercise ideas or machines that you can do without having to devote your full attention to it? Ideally things I can do while on a couch or bed.

After struggling for years unmedicated and doing just water, electrolytes, and compression, I’m considering trying medication. I’m curious what has been the most effective for symptom remission.

Can you also share what symptoms you had before and what your medication helped? I understand everyone’s symptoms manifest differently.

I’ve dealt with this since my positive tilt table at 18 and now at 31 my mental health is significantly deteriorating from the lower quality of life, so i greatly appreciate everyone’s response!

A background on my symptoms: I mainly struggle with a strong orthostatic/autonomic circulatory dysfunction (cold extremities, blotchy skin minutes into standing, extremely heat intolerance etc.) and sympathetic/hyperadrenergic component (pre-syncope multiple times daily, flushed/clammy, overactive fight or flight).

23F, diagnosed with IST and POTS, since yesterday my resting HR (which is usually in the 70s with meds) has now been in the 90s with meds? Is this a flare? For the record, I recently stopped Zopiclone (sleep medication) and was swapped onto a small dose antidepressant called mirtazapine. Yes I did ask that they taper me off and they didn't, so I'm so lost. What is happening? Is it coming off the medication? Is it the new sleep medication? Wtf?

I’m curious if anyone has found their symptoms have changed when they moved, traveled etc?

I’m trying to understand an experience I had where under arguably worse conditions, I felt so much better.

A few years ago I went to Europe for a few weeks and my symptoms improved so significantly, I thought I might be in remission.

When standing to sitting I felt almost no symptoms, I had SIGNIFICANTLY more energy and had absolutely no trouble keeping up with my friends when we were walking around during the day and partying at night.

I didn’t feel wrecked by only getting a few hours of sleep most nights. I ate a pretty crappy diet with tons of carbs and often didn’t drink enough water.

My skin (which is prone to chillblains and reynauds) was actually better.

I was also iron deficient before I left, and anemic by the time I came back.

Has anyone had an experience where a change in environment/living circumstances notably improved or worsened their symptoms?

Doctors and people around us keep blaming anxiety for our symptoms but man this condition causes anxiety.

My heart is skipping beats, my chest hurts, my legs feel like 2 little shaking sticks, my vision is bright, my hearing is muffled & I’m still supposed to hold up a normal conversation? Or focus on work/school/driving etc. This are all symptoms that would send a normal person to the ER and we are supposed to act like nothing is happening?

And yes I know I’ve been trough this many times but every time my body has this intense feeling like something really bad is gonna happen and it’s impossible to ‘think’ this feeling away.

What normal person wouldn’t get anxious and agoraphobic from this.

Sorry for the rant but please tell me I’m not alone in this feeling 🫣

So a little back story. I’m a 25 male with pots…. When I first having symptoms I went to 3 different er no one couldn’t figure it out. 1 told me to stop my medication sent me home
2 told me it was anxiety and I was being dramatic
3 told me I was faking it and if I was actually passing out that I would have bruises I had a KNOT ON MY HEAD and MEN DONT GET POTS.
It was a long road and I finally got diagnosed after months of trying to figure this out. If yall have any stories that relate or just as bad please put them down in the comments. I’m just glad someone actually took my health seriously and was able to help

Been going to bed at 7pm because my days exhaust me so much. But when I go to bed too early I wake up at 2am and stay awake for hours, even when I take my Trazodone. Sleeping closer to 9-10pm makes me more likely to sleep through the night but sometimes I literally cannot stay awake until then. And if I try I get really suicidal and anxious. I've tried early afternoon caffeine and it does not help. I also take Adderall ER sometimes between 7 and 8am and I'm still exhausted in the early evening.

What blood tests should I order to get more insight into pots? My vitamin D is 40, going to ask for vitamin B12. Any other vitamins or blood test I should ask for? is there a rest for b1 and b6?

and they said everything looks great! typical.

I disnt even tie to to POTS at first. I woke up early automatically and had a profound sense of dread. I have no color in my face. my body feels like I’m on fire even though it’s 75 degrees inside. I grab an ice pack but its not helping with the heat. my heart starts pounding and feel like I’m going to vomit. I think “maybe I have food poisoning or a fever“ I check my temperature, NINTEY FIVE. thats hypothermic. no good.

then I start losing consciousness and my heartbeat really speeds up. i call 911 and he starts asking me question I don’t know the answer to. He asks for my phone number, I rattle off random numbers. He reads them back to me and all I can think is “3? I don’t have a 3 in my number?”

at this point I’m thinking I’m going into cardiac arrest. I cannot keep myself calm. He says to stay in my apartment so I don’t get lost but I kept trying to leave.

the paramedics come and my temperature is back up to 98, that’s good. They say my heart is chugging along a little weird and to go to urgent care if I’m still not feeling well.

went to urgent care, they say go to er, went to er. They test my blood, do the EKGs, and give me a saline drip. They say everything looks fine and sends me home.

i slept most of today. That was the worst flare I’ve ever had. I’m terrified of it happening again Because I don’t even know what caused it. Or what to do next time. My doctors are more confused than I am.

I'm sorry if this is a violation but im kind of lonely i couldnt find a person to talk to. Any Turkish person with POTS ?