Freaked

I go through phases of this exact thing. The feeling like heart stopped/stopped breathing and sudden jolt. Happens more when I'm under extreme stress, but never happened before POTS (though I think I used to actually stop breathing for a second sometimes when I was scrunched up on my side; slightly different feeling). People with panic disorder get this too, so I figure it's an adrenaline/sympathetic nervous system thing that POTS makes us more prone to.

Part of my problem is that pots is taken even less seriously here than the US, with a lot of doctors telling me it's just a 'nuisance' and if I'm that debilitated my main problem must be mental. The psychologist I've been seeing doesn't agree, of course. I haven't been able to get in touch with my specialist for months and I'd really like to try some new treatments (so far I've had no success with meds) but no doctor wants to try to help me cos they consider autonomic dysfunction to be untreatable, if they take it seriously at all. It's very frustrating.

I've started using them recently and it's been very nice to get out and about a bit again, after over a year of going nowhere. I wanted one before that but my parents were very against it. Thing is though that I need to be pushed cos I'm not strong enough atm to push myself around really. I do feel quite self-conscious because of that. I would really like an electric one to gain a little bit of independence again, but I'll have to earn and save up the money.

Before February 2013 I had basically everything. Since then, when I got sick, I seem to have been in the process of losing things piece by piece. I was almost finished college, but I had to drop out and defer to this year. I still have two assignments that are like a month overdue due to complete brain fog and an assignment backlog from when I lost a month to fevers in February this year, and I'm hoping the college will actually accept them. Beyond that, that career is on hold. My POTS symptoms are very severe and I'm pretty much housebound. My parents have been getting sicker and sicker of it all, and my boyfriend of five years almost broke up with me recently cos the lack of sex and doing fun stuff was making him see me as a friend, as well as the fact I had to rely on him so much. I'm trying my best now to push myself and be fun for him again, but I don't know if it will work. Next year, all but one of my good friends will be living abroad, and I won't be able to get on a plane and go see them. I write books, and I was going to head to New York to mix before i got sick. That's a very far off prospect now. Now when I see people traveling on TV, or weddings or having kids or most things, I wonder if any of it will ever be for me. My future atm looks very small. I'm planning on setting up as a freelance proofreader and editor, but even if I had the money I can't live independently for now. I'm basically a pet. I'm wondering if I should just accept it.

I've seen mine at 180 out of basically nowehre and it felt pretty terrifying. It'll occasionally go 160 just standing on a bad day. Mostly more like 120/130 I'd say. Sitting it's usually in the 80s, and 60s/70s lying down. But it varies from time to time.

Same. It always takes a while before everything settles down. And I can also get waves of dizziness changing positions.

I'm so sorry you're going through all this, MakeMeErised. Have they ruled out reflex anoxic syncope yet? Or monitored your oxygen during an episode? Has a holter monitor caught one? It just seems to me that they're guessing where they should be investigating. I agree about the horse/zebra thing. My condition can be kind of erratic, and I'm just hoping it won't get worse, cos I know if it does I'll still find it hard to get help.

Been basically housebound since Feb 2013 with only brief windows of being a little better. Tried to see my friends today for the first time in over a month and ended up having to leave the room to sit on the floor and let an episode pass. Trying to be okay was just too much.

Thanks for the replies. I am extremely deconditioned, but atm my exercises need to be sitting or lying down. Last time I started doing them again, I came down with fevers that lasted a month and was totally bedbound, though that may just have been an unfortunate coincidence and I do want to start again, ideally with the help of a physiotherapist. I can walk a very small way, like 50 metres, but it makes me very ill and my diastolic pressure often spikes (so my standing BP can be something like 120/100), so I really avoid it when I can cos it's just awful and scary. Walking properly again is a while away for me, and I just don't want to be trapped in the house another year. I wouldn't use it around the house though, unless I was having a *very* bad day. My parents don't want to get it for me cos they figure it'll just make me more deconditioned, but atm I'm just not leaving the house/car at all and it's been this way since Feb 2013, so clearly the current strategy hasn't worked.

I have a huge fear that I get bad vasospasms and that they triggered arrhythmias a few times. I've always had pretty bad pain when I ran, but I was never prescribed nitro till I got POTS. The thing is though, I'm not sure it really helped, so maybe the pain wasn't my heart those particular times, and I do have a lot of chest wall pain from my 'pots breathing'. It gave me a bit of head throbbing, but it didn't lower my BP *too* much (touch wood). I was sitting down whenever I took it though. It's reassuring to have it, at least, as I always worry about spasm-induced heart attack.

I got sick two months before finishing my degree. Dropped out and came back this year. Doing everything except exams from home and currently late on a few things. It's really tough cos I'm very symptomatic, but the college seems to understand that if I don't finish my degree this way, I won't be able to finish at all.

That may be due to salt balance; you may be flushing out salt and lowering your BP when you drink too much water. Have you been monitoring your BP to see if it makes a difference to it?

I'd really like one, but my parents don't want to get it for me (and I have no money of my own atm). Ideally I'd like a motorised one since I wouldn't be up to pushing myself far, but they're too expensive. I'd just really like to get out and about again as I've really been housebound for over a year, and walking is just so awful. Starting to become agoraphobic tbh and I'm not going to get over that if I'm feeling desperately ill and trying not to collapse every time I'm out. Just wondering who has one? When do you use it?

5, or even 10 mins is way too short. I had a 40 minute TTT, and good thing too cos at 20 minutes my BP dropped and I almost passed out, so they wouldn't have caught my vasovagal syncope if it was only 10 mins. I say go back, though 32bpm should be enough for a POTS diagnosis anyway I thought.

Ugh, heat intolerance. I used to absolutely love the heat and sun, and now it's a torment. I get the incredibly veiny hands too. And annoyingly, since I got sick at the start of 2013, Ireland seems to have turned downright tropical. Can't imagine living in the South. The only thing I found to cool me down last summer other than AC was to wear wet clothes and sit in front of a fan, and that isn't doable out and about. But a little hand-fan or one of those mist fans they sell at Disneyworld can be very cooling.

Had POTS since Feb 2013. I was sort of getting better (though still couldn't walk much) but now I'm much worse the past 6 weeks with new symptoms such as BP spikes and constant shortness of breath and I have no idea why. Very disheartening. Thought I'd be at least om the road to recovery at this point I suppose.

Yes, that can happen with POTS. I get all those symptoms very badly. I started a thread about it the other week (called 'POTS and extreme "panic attacks"') and many other people were describing the same episodes. My HR has reached 180 during them. The other day my BP spiked to 155/100 and I had bad leg tremors, out of nowhere. An hour later my BP was 98/62. Adrenaline dysregulation seems to be one of my main problems, and these things seem to be extreme adrenaline surges. Panic attacks are listed as a symptom of POTS, because these are effectively EXTREME panic attacks, even though they don't have a mental cause. Adrenaline attacks would be a better phrase. Edit: the blue extremities is probably cyanosis caused by adrenaline-constricted blood vessels and fast breathing. I get that too. But you could ask your doc or buy a home pulse oximeter to measure your oxygen.

Good suggestion Katybug, but I have tried all types of slow and relaxation breathing techniques i can find, and nothing like that seems to reduce the tight chest or air hunger. It's like a switich gets flipped in my brain for AIR!! and I just don't know how to turn it off. I used to just get it after food or other things that lowered my BP, but now it's almost all the time. Really exhausting. I know a study came out recently saying that when POTS people stand up, the lack of cerebral blood flow triggers hyperventilation and makes everything worse, but this is happening just sitting up. I read a story in a newspaper about a woman with POTS who was so short of breath all the time she could barely eat, and that's getting to be how I feel. The only correlation I can find is the narrowing pulse pressure now and then.

These days I spend hours daily sitting in bad gasping for breath, unable to do absolutely anything. It's like torture. Can't get a hold of my specialist for love or money atm and GPs have no idea what to do for me. My oximeter normally reads 98 or 99 during these episodes (touch wood). Eventually the shortness of breath often devolves into a sort of panic attack cos I feel so dizzy and my chest gets sore, and my pulse pressure narrows to 10-25 for some reason. I try every technique i can find for hyperventilation, and I try ignoring it, but absolutely nothing makes a difference. Trying to talk or do anything seems to make it worse.

Chaos, that's very interesting. I just got sick February 2013 and it started with a bad flu, so I've always figured it is autoimmune.

Our systems have to work very hard to keep BP normal. So if my BP is normal, half the time it's cos my heart is through the roof and my blood vessels are constricted in weird ways. Still makes you feel lousy.

So, after a day of zero sweating, I was lying in bed and began to feel sweaty suddenly with a headache. Sure enough my BP was at 155/100 and I started having tremors and twitches in my legs. Within 40 minutes my BP was back to 109/70. Adrenaline surge. But obviously I wasn't standing at the time. Things are always *worse* when I'm standing, but atm I'm often not okay at any time. Anyone else like this?

Haha same dkd. My parents think I'm crazy, but they don't understand how extreme it feels.

Yeah Katybug that seems to be more common, though I've never heard a theory as to why.

Apparently this does happen frequently, but bear in mind that people who've recovered are less likely to be on this board.