Freaked

Thanks. I just really need some independence. My parents have a very poor understanding of POTS and their answer to every symptom is 'that can be casued by anxiety' even if it completely can't. My boyfriend can't take care of me cos he's trying to finish his degree atm (as am I). I don't know what to do. I feel like living on the street would be preferable. This is like a nightmare.

HI, yes when I get ill they refuse to bring me to hospital and take all means of communication away so I can't arrange any way of getting there. My boyfriend came over to bring me to hospital but my dad locked me in the house and dragged me back in the window (I'm very weak atm so I couldn't struggle much). My boyfriend just had to go home. My parents, and my boyfriend to a lesser extent, have latched onto the non-fatal label and they think I'll just be fine whatever happens and never need any help. But as we all know POTS is not a completely benign disorder when things get really out of hand, and I'm not even sure that's all I have anymore. I'm getting fevers every day and my BP is bananas now just sitting up. I don't know how they expect me to put up with it without saying anything. I have a GPs appointment tomorrow so I'll get a chance to escape then if things are still really bad :-/

I've been VERY ill lately; can't even sit up cos my pulse pressure goes to about 10 . My parents have decided they don't think POTS is real and I need to be sectioned. They want to phone my cardiologist and tell him i'm just nuts. My BP was 140/130 earlier then 72/62. They took my cuff and phone off me so I wouldn't call help and left me on the ground. I'm 22 btw but too disabled to live alone.

My GP just prescribed mestinon for my POTS. Anyone tried it? Is it good? My main fear is that it might make my tachycardia or BP swings worse. Anyone found that?

Thanks for the kind wishes everyone; really helps. Hospital again yesterday where of course nothing useful happened. Rang a GP but they told me over the phone they wouldn't be able to help me. At this point I think I need some benzodiazepines or something; I can't cope with my heart taking off to 170 or 180 out of the blue just sitting in bed and the constant temperatures. I'm a jibbering mess now on top of everything.

Bedbound, daily low fevers, weird muscle cramps, blood pressure spikes and dips, nausea, palpitations. Was in hospital last week for three days and they did a bunch of tests that I assume were okay (my white blood cells have been slightly raised) and told me to keep taking paracetamol for the fevers. I actually feel too ill to get out of bed and go to another doctor. It's been weeks now and this 'flare' just seems to be getting worse.

Sounds very scary. Well, the ER are always going to assume it's panic when they don't find anything, but with POTS these sorts of attacks are different to regular panic and often a lot weirder and more extreme. It's difficult for us to stop hyperventilating sometimes, because cerebral hypoperfusion triggers it, presumably along with necessary adrenaline releases. Hopefully the best way to avoid future episodes is to be really strict about regular eating and drinking.

Well, fast HR is a common trigger of vasovagal syncope. RAS is something like an extreme version of it, with the vagus nerve becoming too toned for too long, afaik. So I'd say it's possible it could be an 'overcompensation'.

My diastolic BP went to 106 last night, sitting down. No idea why. I may have a kidney infection. Anyone else with hyperpots have spikes that high? I'm terrified to move today.

This is my main feature when I get bad, along with low fevers. Some days/hours I will be boiling hot, pouring sweat and have very easily triggered tachycardia that has climbed up to 180 sitting in bed. Then I have a crash, where I won't sweat a drop and my heart won't climb above 110, meaning I can barely stand. My BP can be low and I get this feeling in my chest as if something's physically restraining my heart and making it pound hard and slowly, similar to the feeling before vasovagal syncope. Both ends can be very scary. Anyone else experience these?

Hey, sorry you're having such a bad time; that sounds terrifying. Afaik about 3% of POTS patients get seizures, so it is possible. There is also something called reflex anoxic seizures or reflex asystolic syncope http://www.stars.org.uk/patient-info/conditions/ras where your vagus nerve temporarily stops your heart and makes you convulse; blue lips are a common feature. Good luck and if anyone suggests psychogenic seizures, which they may well do, please don't buy into the notion without making sure you've gotten a cardiac event monitor to try to capture these episodes.

My specialist admitted me to hospital cos I couldn't stand and was getting fevers all the time. The trouble started when they wouldn't give me saline and said I should drink lots instead (which I do all the time). Saline is the only thing that ever makes a positive difference to me. They ran a bunch of cardiac tests on me, which I wasn't really expecting because I've had them all before. My specialist hasn't seen me at all while I've been here and instead it was this patronizing ******* cardiologist, who suggested that orthostatic problems were very common, they couldn't do anything for me and I should see a psychiatrist. He also said exercise wouldn't help, which shows he of course knew zero about the issue. When I pointed out that evidence says it definitely does, I got a 'well you have all the answers'. I got mad. I said that really he had no idea what it was like to have your heart go 160 every time you stand. I told him I had been put on benzodiazepines for months before I was finally diagnosed, and while they made me very calm, they didn't help me stand. I told him how I haven't been able to walk more than a hundred feet or so in a year, and I was getting temperatures every day (which they had recorded and have no theories about), and I didn't need to be patronised. I told him I was only in hospital cos otherwise my boyfriend would have had to get me a bedpan. He asks his underlings 'did you hear me patronize her?' to which there was obviously a 'no, no' as if they were afraid for their lives. He walked away going 'Wow. Wow.' One of the nurses came in afterwards and basically said to ignore him. But I didn't need a note of 'psych consult recommended' here. I'm just hoping it won't change my specialist's opinion. Now here's where Ireland comes in. Many of my problems with doctors have stemmed from the fact that POTS is not a widely accepted diagnosis here. Most of the patients who attend a particular unit here seem to have it (I overheard a few other tilt table tests), but James's doesn't diagnose it and leaves you with much vaguer labels. I know there are one or maybe two specialists who diagnose it, but that's it. That and the terrible condescending attitude of many doctors and consultants here leads to awful situations, like this one http://forums.dinet.org/index.php?/topic/24449-horrible-psychiatrist/ that happened to me. They seem to feel that, if they can't treat a condition, then they have to say you should be able to ignore it and it's your fault you can't. Honestly I'm sick of it, and I think we need a support and advocacy group here. I know there was a dysautonomia group called the fainting goat, but it has a large focus on EDS, and I'd like to start one specifically about POTS. Anyone with me?

I get exactly this. Nausea in my stomach and chest with pounding heart and need to vomit (I often do). I figure it's a sign that my digestive system is lacking blood supply. That and adrenaline triggering acid.

I'm in hospital atm cos I'm very symptomatic (can't stand and feel lousy all the time). But I'm getting temperatures every day of 37.5-38C (high, not super high). Paracetamol doesn't always bring it down. It's getting scary. I've gotten chronic temps before since i got sick, but not when I've been feeling this awful. Anyone else with POTS get temperatures?

Thanks so much for the kindness! I went to my specialist today and he ended up admitting me cos I literally couldn't walk. They've run some cardio tests and I'll be getting fluids. My parents are very mad at me cos this will cost them more money, but they weren't the ones looking after me and I really had no choice.

Thanks; I did that and he'll be seeing me on Monday. Just trying to hold out till then really :-/ And I need some meds at this point but I don't know what to try.

Was getting bad tachycardia. They told me I had a slight temperature and my white blood cells were a bit raised but everything else was fine. Now today my BP is lowish even when I've been freaked out and it feels like my heart isn't beating right. I'm trying to convince myself it's just a flair, but I just feel so horrible.

I had a very scary day. My heart rate went to 180 or so with jaw pain. I thought I was going to die. The rate was 130-150 for hours as well; it would not come down. So they did a troponin test at hospital after 6 hours and my result was 7 (normal was listed as 3-14; I figure this was troponin I). But I thought it was really meant to be undetectable (pretty sure it has been all times before). I'm sitting here at home now trying not to freak out. Anyone else had this sort of troponin result? Can severe tachycardia do it?

I'm so sick atm. Yesterday it was dizziness and weird neuro stuff, then hours of being insanely short of breath and nauseous. I'm constantly pouring sweat and getting mild fevers sometimes. Today, I have this gnawing hunger and need to vomit. I can't leave bed and I'm too ill to even face the prospect of going to the doctor or hospital. My vitals, aside from my temperature sometimes, and blood sugar are normal (touch wood). If I tell my parents I want to go to hospital they'll just yell at me and call me crazy again (cos the hospital rarely does anything for me). It's too late here to get a hold of specialist now. Does anyone else with POTS get like this? When I feel so bad it's just terrifying.

I used to get this when I first got sick with POTS, but I used to wake up in the night with tachycardia and an arm totally dead and cold (mostly my left) just from resting on top of me. No idea what was going on.

I've been on benzos before with this, and they helped me feel okayish when I was sitting down sometimes (less sweaty, breathless and nauseous), though sometimes they made me very weak and they didn't help with the standing or exercise. Withdrawals could be pretty bad, but I would try them if only asking any doc for them didn't make me look like a druggy :-P Most docs here won't prescribe them at all, and I don't need to give them anymore 'it's psychological' ammunition since POTS isn't widely known or recognised here. But I think beta-blockers might be more useful, even though I get very intolerant to them if I'm on them for more than a few weeks (my BP gets too low). I really feel like this is viral. My HR is as volatile now as when I was post-viral initially. Either that or it's the after-effect of pushing myself too hard with my bf the other day :-/ God I hate this thing.

Thank you for the kind replies! It really helps a lot just to know there are people out there who understand. Had another bad day unfortunately. I'm getting random tachycardia episodes just sitting around, which isn't something I've had for months. I could try calling my specialist tomorrow, but I'm pretty sure he'd just tell me to wait a while; I called him before when I was getting temperatures and chest pains for weeks and that's what he said. I'm gonna try to fix whatever chronic sinus/ear thing I have going on, just in case it's triggering stuff. Still, I am totally at the end of my rope so I may not be able to wait two weeks :-/ I'll have to see. The shortness of breath is driving me nuts.

I think most of us get random flares. I'm having one recently and I've been doing everything right, better than I was in fact. I feel like I may be fighting a chronic sinus/ear infection and that's my only theory. Might you have any kind of virus or infection? Have you changed what you're eating or your routine?

Sorry you've encountered a nasty psychiatrist. This http://forums.dinet.org/index.php?/topic/24449-horrible-psychiatrist/ was my experience. Good luck; we need to stand up to those who abuse their power to push their baseless theories.

Do you ever get low potassium? Probably not it, but just a possibility. Other than that, I've had leg cramps since POTS, and I think mine is myofascial pain syndrome. With all the adrenaline and other stress hormones we have, we're at risk for those kinds of muscular pain syndromes. Looking up and massaging trigger points often helps me.