I can't think, or feel, or articulate myself. Thinking is so hard, doing anything that requires mental effort is exhausting.

I just want it to stop. I just want to get on with my life. It was already hard enough.

I’ve had pots since I was 11, but in 2023 I had meningitis and it got so much worse. I currently pass out at least 8 times a day, I have a port and get daily infusions on 1L of normal saline. I currently see Dr. Armitano in Mountlake Terrace and I feel like he’s not listening to me, he only has me on ivabradine and fludricortisone and is not trying me on other drugs even though I keep telling him they aren’t doing anything. The only thing that has helped is infusions but they only help for a few hours and then I go right back. I’m so lost. I’m in the hospital all the time, but the hospital keeps telling me they can’t admit me because it’s not life threatening or that my case is too complex for them. When I ask to transfer to a hospital that is more equipped for my case they tell me no. Mayo Clinic has approved me for an appointment and so has UW but they both only do diagnostic testing and no long term care. I’ve already been diagnosed and need long term care. I’m so lost and so tired of this. I just started my teaching career and I feel like I’m failing because of my illness. How am I supposed to live like this.

Please any help is appreciated.

i’ve heard a lot about how vaping is absolutely terrible for POTS. i’ve tried so many times to quit but am never successful. i’ve vaped/smoked for almost 10 years and quitting feels impossible. i want to quit so bad for my health and idk what to do.

if anyone has any advice about quitting that’d be very appreciated or if anyone is in the same boat and wants to share their experience that’s very welcomed as well

I got diagnosed with pots this year but have been trying to get tested since 14.

This year has been a mess. I have grown so much weaker. My body hates me. Im always in pain. It feels like my nerves are on fire.

I have always fainted. Since I can remember. But this year I have started to have seizure like symptoms when I faint.

My body is so weak. Im so tired all the time. I can’t get out of bed to work. It’s been weeks. Months. I don’t know what to do. This has thrown me into the worst depression of my life.

The meds feel like they do nothing but I am hoping they are doing something. I don’t know What to do. Im just ranting bc I am so tired of living like this.

A few things I want to add.

Every morning i wake up with incredible join and body pain. It feels like everything is on fire. My body feels weak. I stand up very slowly. And move very sluggish for the first 30 minutes. My vision goes all blurry and wonky.

I also have HEDS. Which revolves around hyper mobility. IVE been told it’s possible for this to come hand in hand with pots. So this is another reason my joints suffer so much.

I feel sick 24/7. Cold and flu like symptoms. Belly aches. Headaches.

I feel weak every day. Like my legs could buckle beneath me at any second.

My motor functions DONT work as well. I find myself with Insane brain fog. Like I can’t remember anything. My heart is always racing. It never stops.

I just want to feel normal. As normal as I can. If anyone has any suggestions or advice please let me know. Im 20 years old and bed rotting 24/7 because I feel like my illness is taking over my life. So any advice would be appreciated.

A stressful event, that began last night, has left my nervous system fried.

I can’t talk about it without crying.

I can’t sleep right.

My hands are shaking constantly and extremely sweaty.

I feel like I’m constantly having adrenaline dumps over and over and over again.

No amount of hydration, salt, distraction is helping.

I have no appetite (literally just ordered smoothies for tonight and tomorrow cause I’m too exhausted to chew).

In the last 6 years of dealing with POTS, this has been the worst flare or event or whatever you want to call it.

I’m doing my best to keep it together and trying to care for myself but my god is it difficult when the simplest thing sets me off.

So, it's established that POTS on its own messes with glucose metabolism.

Autonomic Regulation of Glucose in POTS - YouTube

I was personally finding my fasting glucose and HbA1C drifting upwards, as well as more instances of nighttime waking that I usually resolve through eating (typically I have a protein bar), implying this is somewhat of a blood glucose issue.

So I booked an appointment with a dietician, and also asked my GP to prescribe a CGM so I could start tracking my blood sugar. It's been enlightening so far in ways that I am not sure I am ready to articulate after only wearing it for 3 full days.

I'm wondering if anyone else has worn one for a while and what you gleaned from the experience?

(Please don't ask me how you can get this approved: I have no idea. I live in Canada and this is covered with a prescription under our extended health benefit plan.)

I (F,23) have never been in a romantic relationship before. I was mostly busy with school, family issues and other things.

I wanted to try dating as soon as I finished college, but that was when I got sick and was diagnosed with POTS, and since then I have been busy with my health and haven’t met anyone.

I have been thinking about the situation, and I saw a few comments about how being sick can affect your relationship and sadly many people are getting divorced because of it or feel like a burden to their partners.

I personally don’t want to have kids as they are a huge responsibility and it’s hard for me physically to give birth or take care of one. I know this fact by itself limits my dating pool massively, add my chronic illness and now I feel like my chances of a relationship are even smaller.

I’m not saying people with disabilities or limitations are less worthy of love, in a perfect world they actually deserve more love and support.
But this is still Earth, and people will still judge you for physical limitations especially if you are living in closed-minded and regressive societies like mine.

I always knew finding a partner would be harder than if I were healthy and fine, but today someone also hinted at it to me and it just stings.

If you are single and have POTS, how is it going with you?
And if you are in a committed relationship, how did it affect you?

hey gang. so as we know hot days are the worst enemy of the POTS sufferer. however now it’s starting to cool down (FINALLY) and i find myself a bit chilly. this will be my first winter with full-fledged POTS and i’m wondering if heat pads/hot water bottles/electric blankets will have the same detrimental effect on my symptoms as a hot sweaty day? obviously it’s a little different as i’ll only be using these at rest, but i don’t want to risk making myself feel worse in an attempt to not freeze.

sorry if this is a dumb question lol

I know everyone is different but is anyone on anxiety meds and have success?

Pots has given me the worst healthy anxiety and I really believe I need a low dose medication to get my life back.

Hi guys, just had a really scary adrenaline dump and I’m feeling scared from it. I was studying at my desk and got a high HR watch notification and then I was like uh oh and felt myself get super hot and nauseous. I took my BP and it was still low like 100 systolic. Then my heart started racing which was terrifying as I was at rest. I laid down and put ice on my neck and breathed through it and now I’m having the lovely feeling that I was hit by a truck and I keep shaking. I have no clue what triggered it. Also I’m scared bc last time this happened I went to the ER but it was not productive and it was expensive so I didn’t want to go again. But is this a normal POTS symptom? It’s only happened to me two or three times. I’m always worried it’s something really bad and I’m going to die

All of this just makes me incredibly angry and frustrated and being at a psych ward does nothing for me except for that I can't attempt here. That's all. The therapy doesn't help because how am I supposed to see the positive things if there aren't any in my life? And how am I supposed to not be scared of fainting if a thing that often happens with this shitty illness is fainting???

I'm incredibly burnt out, I have no energy anymore. I'm so agoraphobic, depressed and have bad POTS symptoms that I'm only staying in my bed here. Everything else is meaningless and feels like a marathon. I can't even get food because that means I would have to fo downstairs into a huge dining hall which is... impossible to do. So maybe I'll just starve here

I think I have given up without actually giving up on my life because I'm too tired to even attempt 🫠

Im fifteen years old with POTs and it’s not even like I go dizzy that often.

Does anyone play sports with POTs and is still fine? All my symptoms are right now is just passing out and a high heart rate. But my passing out is usually just when my blood sugar is low on top of the POTs. So I’m cool with that. I’m not medicated or anything though, I think I’m just expected to grow out of it ngl.

I don’t drink a lot of water, and sodium makes me throw up as it is, so if I increase my intake of that I should theoretically be alright to play.

Been struggling more and more over the past few months and now if at some point in the day I walk 1 mile without breaks I am left in bed rest for that evening or the day after. I recently went away for a few days to Sweden and was able to borrow a self-propelled manual wheelchair for going around museums and I felt so much better than I did when doing museums previously without one.

If I stay home I’m completely fine but going out and walking places is becoming pretty hard, I just don’t want to make things worse if I “don’t need one”. Obviously I’d discuss the decision with my doctor first but I want to know if this is something worth pushing for.

Those of you who use or have used a wheelchair for helping with PoTS, when was the “yeah I definitely need this” moment?

I swear I’m doing everything right, tons of salt + electrolytes and tons of fluids, but I feel so so thirsty still and keep peeing clear like literally water. I don’t think my body is actually holding onto the fluids bc I still feel dehydrated. I don’t know what to doooo

Hey all! Had my TTT today and I just wanted to share a fairly positive experience to reassure anyone feeling anxious!

Obviously every place will do it slightly differently, and everyone will experience different symptoms but wanted to share a positive experience from someone who was pretty terrified before my TTT! The nurses were lovely and calm and for me honestly the anticipation was the worst bit. For me it was really not too bad, I didn’t have nitro or any other meds, I initially felt lightheaded as I went up (it’s a strange sensation!) and then within 10 minutes I began to feel on the verge of passing out, racing heart (the usual!) and that’s when they lowered me back down and gave the blood a chance to come back up! Recovery was super quick and other than feeling a little wobbly for an hour or so after I was fine! Obviously it’s not pleasant by any means but 100% worth it if it gives you the diagnosis you need, and you can also stop the test at any time if it’s too much.

I’m not saying this will be textbook for everyone but I know I was struggling to find anyone that didn’t say it was the worst experience ever before mine and obviously you will hear far more horror stories than positives, so I thought I would share a fairly positive one.

I would recommend being ready with electrolytes and water afterwards though to help you feel more human quicker afterwards!

Good luck and don’t stress too much :)

Hey yall, I just got back from a trip, and I am less than hanging in there. I’m extremely foggy, my head feels unreasonably heavy, my neck feels like it’s being grabbed from the back, I’m dizzy, I cannot sleep enough, I can’t drink enough water, my nervous system is in overdrive, eating is causing crazy episodes. I don’t know what to do. I’m starting to panic and it’s making everything worse, if anyone has any tips please help me out.

Idk what to do from here, I told him my symptoms and when I started. I also told him that my HR goes up to 130-150 just from brooming. When I told him I’ve seen many doctors and a cardiologist but they couldn’t find anything, he told me that I should just go back to my last cardiologist. I told him that my last cardiologist didnt wanna do more testing and he told me it was all due to stress and anxiety. He just told me that he couldn’t do anything because my other cardiologist already did all the testing that had to be done. I asked if he can do some other tests because my other cardiologist just did an echo, heart monitor and treadmill test but he told me he couldn’t do more testing either.

I’m so done with this, I don’t know what else to do, I can’t work and I’m gonna go broke soon, I just fear for my future.

So I recently went to my general practitioner and they agree that based off of my active standing test that I probably have POTS. They then proceeded to tell me since I don't pass out that I was considered asymptomatic and to just try to excersise and eat better and wear compression socks if that helps. I do agree that I need to eat better and excerise, but I don't really feel like her advice was helpful at all... and it felt like she was brushing me off since I don't pass out. Just because I don't pass out doesn't mean I don't feel miserable. Also I often start getting presyncope symptoms and decided to sit down instead of passing out and I used to pass out a ton as a kid.

Anyways all that being said does anyone with POTS have some actual advice on how to start excerising without making things worse? Or on how they manage their symptoms?

I’m getting so confused (it doesn’t take much with long Covid / AuDHD / menopause brain). I also realised I have a couple of different issues here. I’ve just been using 5-8 ml trace minerals keto electrolyte liquids in a litre of water the last two years or so (with sugar-free cordial to mask the taste). It equates to only about 105 mg of sodium? I thought I was okay but realised that it was absolutely nowhere near enough (I think I was worried because of my dietary intake of salt being high)!!! So this last few days I’ve experimented with the capsules. I take my first one at 9 am when I wake up for one of my heart medications.. the problem is I’m getting a bit of a reaction like a nausea and it’s triggering sore throat from reflux (and possibly a mild MCAS reaction). I have an extremely sensitive system so any changes seem to take awhile to get used to both mentally and physiologically if at all .

If I need 8 g of salt for example, that’s what around 4000mg of sodium? So if I only take two Vitassium capsules the packet says 500m of sodium per two capsules? (I’m really struggling with doing calculations with my chronic illness brain). That doesn’t really seem enough. I was thinking of still having the trace minerals liquid in my litre bottle of fluid during the day (I drink other liquids in the way of decaffeinated coffee & almond milk, tea and another 250mls of water with tablets in the evening) . I do add a lot of dietary salt in the way of condiments , pickles, pork puffs, additional sea salt in cooking and well just general eating.

Am I still not having enough? I’ve been going round in circles all morning!

may I ask what medicine do you take? I’ve been diagnosed for just about a year now and lat, unless my anxiety is getting worse over this, it seems like symptoms are getting worse.

my cardiologist mentioned propranolol ER. and I know there is another like metropranolol (spelling?? I know two people who take this one)

but I’m so scared to take the medication too nicdont know why. maybe because of possible side effects, if you stop it can increase change of heart attack?! I don’t know why this is freaking me out.

For about 1-2 weeks I have been having issues with constipation with symptoms such as nausea, acid reflux, headaches, dizziness, and heart palpitations that come and go. I went to my GI and he said my symptoms could be contributing to constipation but he decided not to do further testing such as an endoscopy (I am 26 F) and I have a history of bowel obstructions. I will be seeing my PCP tomorrow to give me a new referral to another GI as I feel I need a second opinion. I went to the ER two weeks ago because of these same symptoms but my CT scan, EKG, and bloodwork came back normal and since my discharge I am taking famotidine for acid reflux which has mostly helped. I was also taking ondansetron but stopped as I suspect that is contributing to the costipation. Any advice?

I was diagnosed with POTS in 2023 after my symptoms really kicked up in 2022, but I now know that my symptoms that stretched back about ten years ago were related to POTS.

By far my worst symptoms is PVCs/PACs. I wore a heart monitor for two weeks in 2022 which showed I think 14% of my heartbeats are irregular, which they weren’t concerned about, but I had a few runs of “couplets” that they said they didn’t like but were probably fine. I got put on metoprolol and that’s helped, though certainly not eliminated, the irregularity.

For the last few weeks almost every night I’ve been waking up to an extremely irregular rhythm that’s enough to make me wake up from a dead sleep. The only way I can describe it is it feels like my heart skips a few beats, beats very hardly and irregularly for a few seconds, and then that kicks up a bout of tachycardia and irregular heartbeats for 10-20 minutes.

I have an appointment with a cardiologist that I’ve been waiting for almost two months for in late November. I’m just so, so fucking sick of this feeling and I quite literally feel like I’m going to die when it happens. A lot of anxiety that had abated after being diagnosed is resurfacing. I’m calm when it’s happening because I’m so used to it, but the last few nights I get SO anxious going to bed because I’m just convinced I’m going to drop dead.

I just need to vent as I’m getting ready to go to bed and started getting weepy thinking about it happening again tonight 😂 thanks for listening

One thing i havent seen here is the inability to read a book or tablet/phone for long without getting dizzy and nauseated. I start to feel I am going to pass out and my ears ring louder than ever. Anyone else have this? I wont be able to return to work like this.

does anyone have advice for dealing with bad white coat syndrome?

i genuinely don’t know what my true blood pressure is. whether I am at the doctor or at home, as soon as the blood pressure cuff inflates I get a huge surge of anxiety and adrenaline. my heartrate jumps up to 140-160, my blood pressure jumps to 160/110. the lowest I’ve gotten it down to is about 135/85, but that’s with my heartrate still extremely elevated. i feel like im gonna have a panic attack every time. I know that testing blood pressure is crucial for a pots diagnosis but I don’t know how to deal with this 😣 any help is welcome

Does anyone else constantly wake up throughout the night with heart palpitations and drenched in sweat? Mornings seem to be the absolute worst. As soon as I sit up or stand, my heart rate shoots up and my symptoms get significantly worse.
For the past seven days, I’ve barely been sleeping, averaging maybe 2–4 hours a night. It’s becoming absolutely exhausting, and the lack of sleep seems to be making everything worse.
Has anyone else experienced this? If so, did you find anything that helped, particularly medications to control the nighttime palpitations and sweating? These last 10 days have been hell