Sif

Mid to late twenties here who experienced a sudden acute onset of POTS. I woke up fine that morning after a minor cold then boom, suddenly fainting and adrenaline surges everywhere later that day and it hasn't gone away since. As for a trigger, I did have the cold but it was very minor. I was overseas at the time and had been flying a lot recently so that could also have been a trigger.. but then again I used to fly a lot for work and had always been perfectly fine. I've been told my POTS is probably autoimmune so maybe the cold stired something up? I also had stupidly high antithyroid antibodies at the time.

Shortness of breath after eating is a big issue for me. Eating will make me quite tachy so I think my shortness of breath might be coming from that. Smaller meals help out somewhat.

Hiya flower, that happens to me too although I feel a bit better after taking my Midodrine. My BP typically increases on standing and continues to do so on Midodrine but not as much. Curiously, I also have the same problem with peeing and while drinking large amounts of water doesn't seem to help in the least, I have dramatic improvements after IV saline. Going to question my cardio about this in a couple of weeks.. makes absolutely no sense to me, lol.

Hiya Emma, yep. I take .02 Fludro and Midodrine together with no worries.

I've had one which showed 3 large lesions and multiple smaller ones scattered around the front part of my brain suggestive of demyelination. Further investigation showed that I don't have MS. yay!

Last time I had IV saline my resting HR went down from about 95 to 70ish.. which is pretty good! The most remarkable change for me though was the difference in my standing HR.. it went from 170+ to 75! My blood pressure even went down a bit like a "normal" persons instead of shooting up. Sorta wish I could get regular saline, the results totally blew me away.

Feel like I've been in one big flare up since this all started about a year ago. Still waiting for it to go away.

I do as I did before I got POTS.. which is a bit of everything! I get out of breath a little easier but nothing dramatic. Having said that, a nice slow backstroke is the easiest for me.

Thanks for your reply, flower. My health was pretty great.. all this thyroid business and POTS hit me out of the blue so I can't say I share that similarity. If I did have it previously, it was much too minor for me to display any symptoms. As charming as it is, I also want to comment on the peeing! I too pee like crazy during these episodes.. I try and drink lots and lots of fluids to keep myself hydrated during these times but it comes back out literally 5-10 minutes later. I think my episodes last a day or two and every single time I've had one I've been sent to hospital, ugh. Although doctors have said I cannot be truely dehydrated if I'm still peeing.. so why do IV fluids alleviate symptoms so much? I forgot to add that I get nauseous as well and also get diarrhea (yep, still being my charming self) during these episodes but I can't really remember any flushing so I don't think I have mast cell issues. I just feel **** cold and get the shakes like crazy, almost as if I'm feverish. Standing up is a no go as I can't breathe very well because my heart rate gets too high and I faint pretty quickly. I can't find a trigger that I know of.. one I had after a busy holiday and a long flight (very first sign on my POTS!) then another after I flew home, another was when I tried to return to work after recovering from my busted thyroid which lead me to being diagnosed with POTS and the last one I had about a month ago after a night of not being able to sleep because my arms felt like they were burning (they have done it before but my POTS doesn't usually flare when it happens). Maybe a lot of us are experiencing the same thing in different ways. Such a weird and confusing illness.

Hi flower, sorry to hear you're so unwell. I just wanted to leave a comment because my POTS started after a minor virus caused a big flare of autoimmune thyroditis for me then was diagnosed with POTS a few months later and being in and out of hospital for awhile. Only difference was that my thyroid was underactive instead of over.. I've always wondered if the two are connected somehow? I'm not sure what kind of POTS I have but I also get a very dramatic increase in heart rate (it can more than double on standing if I'm unmedicated or having a rough day) and my BP can shoot up too. What are your POTS episodes like? I shake so much, my HR typically get very high (170+) and my chest hurts badly. I get very cold but sort of sweaty too for some reason! I've only ever had about 4 of these episodes, thankfully! The last one I had, I went to hospital and I stayed over night for IV fluids and while I was totally wiped out, my HR and BP went back to what they usually were.

Love the pool! I almost feel normal in there. It's pretty amazing how I can struggle to walk sometimes but can easily swim a few laps in the pool. Getting out is a different story though, lol.

Fludrocortisone/Florinef has really helped my lightheadedness and dizziness too even though my blood pressure isn't usually low when I'm dizzy. Sometimes I used to get dizzy from ear pressure caused by fluid build up and Stemetil helped heaps for that.. I think that's more like vertigo though, it felt very different!

Very sudden! I'm still not sure what triggered mine. I had a minor cold beforehand so perhaps that. I also had an undiagnosed thyroid problem but I've never heard of that causing POTS. I was also overseas when it hit.. was fine one day then fainting all over the place the next day while I was trying to shop. I was absolutely terrified, lol. I have not being diagnosed with hyper POTS but I have very large increases in BP when at my worst so I think it's at least a possibility.

I'm not sure I agree with that. Tachy works to keep your bp up initially, but becomes counterproductive after a certain point. When your heart is beating THAT fast, the chambers don't have time to properly fill, meaning your bp is actually likely to decrease the higher your heart rate climbs. It's what happens to us whose bp suddenly drops on the tilt test. BP keeps slowly falling, triggering the HR to climb - but it's past the point where that will actually help - so it keeps looping (falling bp increases tachy) until finally the brain decides to put a stop to it and drop you. I think we're all probably a bit different? My blood pressure skyrockets when I get really tachy and that's when I feel my worst.. the metoprolol really, really helps with that. The only time my BP actually drops on standing is when I take a little too much metoprolol and that's when I start feeling woozy, dizzy and black out on standing. Honestly, I'd rather faint from low BP than start passing out from a really high heart rate.. it just feels so **** awful and takes much longer to recover from. Man.. our bodies are so weird!

Hi hippychic, sorry you're feeling so unwell. I think staying in bed will really hurt your chances of your POTS improving, deconditioning will just make it worse and harder to cope with. I have a big problem with the tachycardia on standing too but have been given some meds to help with that so I can stand for short periods of time, have any of your doctors discussed this with you? I was only bedridden for about 4 months and started slowly by doing stuff like walking to the bathroom, etc until I got to a point where I could do very gentle physiotherapy. My symptoms didn't really improve thaaat much but I can sit up almost all day now (except on really bad days) and I can enjoy life a little more.