persephone

Also, my lips go blue when this happens. It's happening now and I am lying totally flat and trembling.

I'm at home with my folks but heading back to University this week. I keep going through spells of being perfectly ok and then getting short of breath, rapid pulse etc etc

That's exciting- I see the JOhn Radcliffe too. Who are you under there? In reply to the original poster I was diagnosed 5 years ago and have experience of POTS treatment in England and Scotland.

Hi, just wondered if you had had general anaesthetic lately? This was my first since getting diagnosed with POTS. I went under on Wednesday but one half of my tongue is still numb- is that normal? The surgeons looking after me didn't give a toss in the end- they were useless and you all know about the nurses holding me up- I was glad to get out an get home. But I'm not feeling good.

Thanks, Maxine. I'm not well enough to be out, I don't think. One half of my tongue is numb and I don't know why. I don't feel right. But I'm scared to go back in case they put me at further risk.

Thanks ladies. I'm home now. I'm not fit to be here but I felt at risk in the hospital. I still can't believe they did that. but if I try and report them, they are bound to say I was semi conscious and confused/disorientated. I just can't believe nurses would be so dumb. Well, actually, I can- but I don't want to! Still very shaky now.

I've been in hospital a couple of days after having a procedure done under generral anaesthetic. The nurses are so ignorant- tried to explain about POTS but they had decided that my problem was not getting up and walking about enough, and that my tachycardia would be cured by not allowing me to lie down. Today they sat me up in a chair beside my bed. I began to faint. I called a nurse over and was slumping in my chair. I can't believe that what I'm about to type actually happened: Instead of laying me flat, this nurse SAT ME BOLT UPRIGHT, tipped my head back and put an oxygen mask on me. She would NOT let me lie flat either on the bed or the floor. I was trying to telll her I had to lie flat and she said "You're too heavy for me to lift so you have to just sit like this. It's safe for us to do that to you because we're nurses." My cardios hve always told me it is DANGEROUS to not let a syncopal patient lie flat. Is it me, or are these nurses NUTS?

Tea I am IDENTICAL to you- if I go out and it's too cold my speech slurs too, and I just get too cold to move. I had a collapse on Dec 18th here in Oxford because I got so cold my lips went blue (at least, I think it was the cold....) I don't know what to do about it. Other than move to the Bahamas or similar. We've had record lows here- -20 C in Scotland, and -15 C in Oxford over the last week/couple of weeks. Today was a bit better, but I have literally been holed up in my room in college for most of that time, afraid to go outside and keeping myself as warm as I can. I have four radiators going at full blast, my feet on a boiling hot water bottle, and lots of layers! hope you are OK, Tea! Bug hugs P

I always forget about these after they happen, because they are rare, but I wonder if anyone knows what this is- whether it's another permutation of POTS or something else? It was morning time, I stood up to getout of bed and I stretched my arms above my head. My vision slowly went sparkly, and I was aware that my legs had started to sort of bend and *jerk* as I was standing. My arms and legs then gave off some massive jerks- not rapid, but like there was a magnet trying to pull them to the floor. I know I needed to lie down, but I couldn't see where to lie myself down- I was worried I would smack myself off the bed frame. Within a few seconds, still with these massive jerks, I had blindly feltmy way past the bed frame and lowered myself to the floor. I didn't lose consciousness. but my eyes were fixed and staring- like I was having some kind of absence. I couldn't think properly. The jerks stopped when I was lying down. I was not conscious of any palpitations. Or of any tachycardia. I just had to lie there for about 3 or 4 minutes while I came back to myself. I don't get these at all often, but when I do, they feel like an electrical storm in my head. I was tested for epilepsy when all this started, in 1994, and again in 2005- I had EEGs which showed nothing. Then again, no one has managed to EEG me when one of these episodes is happening. I just wonder if something was happening to my brain rather than my heart as I didn't feel my blood pressure drop particularly low? also the jerking- very different from my usual these days. It makes me wonder - it wasn't til someone actually managed to get me hooked up to a tilt and I had a full blown blood-pressure dropping episode that they acknowledged my bp flatlined. What if this is somethiing neuro that no one has captured? There is little point in asking a neurologist about this- they will be dismissive when they see my notes and that I've had work up over the years. plus, these attacks do not happen often. I just wonder if anyone else has it, or knows what it is. UNLIKE my regular POTS events, these are not linked to menstrual cycle, or to hypovolaemia, or even to my pulse as far as I can tell. but they are still related to standing up- they never happen lying down.

Hi Janey. Isn't Oxford like Narnia this week! As far as I know, the most common type of EDS which POTs people have is type 3- the hypermobile type WITHOUT vascular involvement. ALthough: people in my family have a history of early aneurysm, and there is also pectus carinatum (pigeon chest- a hallmark feature of EDS IV, the vascular type). I've had one consultant tell me it's possible to have a mix of hypermobile and vascular. So...I would say, YES, we should be having those things done. Try telling that to the JR though! :-) ps would you like to meet up in Oxford soon

Laura: essential reading for you- http://www.stars.org.uk/files/file/pots-do...perspective.pdf This was written by a Consultant from Newcastle. She could be the person you need to see- Newcastle is presumably nearer you in Yorkshire than London? She is very clued up. Ask trudie@stars.org.uk for contact details! hope this helps.

Have you checked out www.stars.org.uk. Email trudie@stars.org.uk She is the CEO. They have information sheets on POTS and she will be able to give you a list of UK specialists who are good at treating POTS, so you may not haave to go all the way to London. when I saw Prof it was ?295 for the consultation and I had a tilt test and bp test that cost almost ?1,000.

Oh, also- whoever it was that said their wrists hurt when reading- you can now buy a book chair- it's a small lightweight wooden device, likee a mini deck chair for a book and it holds the pages o the book open for you so you don't hve to. It also holds the book upright at 90 degrees so you don't have to strain your neck to read. Check out www.bookchair.com Strategies like that- which minimise my pain and discomfort generrally helpme attempt tasks that are difficult when I'm not well.

From my own experience, something that brings with it a sense of accomplishment makes me feel better- no matter how small the accomplishment. If I feel like I've atleast achieved SOMETHING then I don't feel so useless/overwhelmed/low in mood about the bad spells. Unfortunately I haven't got the pacing quite right on this yet- my schedule is unremitting and means that even if I feel horrific I can never EVER have a full day off, so I have to be persistent, but there are times when persisting makes me worse. I generally need to be told by someone else when to call time on attempting to read/work etc- usually either my Doctor or my Supervisor. It's been like this for five years!

What about researching your family tree? So much is available online now- you can access all kinds of records from the comfort of bed that one used to have to travel hundreds of miles to see in the flesh. My mum and I started looking at this and went back 250 years in the course of an afternoon on one side of the family- fascinating isn't the word; we were hooked! Alternatively, you could do the work today that I keep putting off....reading about theories behind sight and perception in the later middle ages. MAn, this stuff should be prescribed for people with insomnia, it would soon sort out their sleeplessness!

Hello, me again- your boomerang who disappears off for months and then comes back to bombard the board with questions and anecdotes. Oxford is all snowy and it looks like Narnia today- Here is a picture of my college, and my room: http://www.facebook.com/photo.php?pid=4091...amp;id=36805933 To the point: I had a couple of postural tachycardia episodes this morning on standing, nothing that unusual there. BUT: since I came back to work at my desk after Christmas, I find that sitting upright (or even at a slight recline, because I have an ergonomic chair) is causingg excruciating pain in my neck and right shoulder. At first I thought it was EDS pain, but then it occurred to me that I haven't dislocated anything where the pain is, so is fibro more likely? Then I remembered that with both of those conditions, nothing very much helps the pain and it goes of its own volition. Whereas: I am lying supine on my bed to read and to work, and the pain is virtually gone. Could the pain have been my blood pressure dipping, as I know that can cause coat hanger pain? I didn't feel particularly faint as the pain was going on today, but yesterday it felt like someone had pulled the plug on me somehow, and I dropped too many spoons (poon theory spoons, not actual ones) very suddenly and just through sitting at a desk. Seems weird. Plus, I am ALWAYS worse in the cold- why is that?! Drives me nuts.

Don't be too disappointed- if you look at the list of what makes POTS worse on th emain DINET website, ablation is one of the first things listed. I personally was told ablatin would be DISASTROUS for me. My tachycardia is a response to postural hypotension. Take away the tachycardia, which is a compensatory mechanism, and you take away the ability to stand up is pretty much what my cardiologist said. Lots of POTS folk have tried ablation only to find that it was a HUGE mistake, but once it's done, there's no going back. remember the chinese phrase- Out of crisis comes opportunity. There is a better treatment waiting for you, that will improve your POTS without such drastic measures! I can remember being so upset i couldn't just have a pacemaker, or an ablation back in the early days, but now I'm so GLAD I didn't have them, because eventually we found a med that worked wonders. Thinking of you! And don't give up hope!

Cell phone? Magnetic strips on bank cards if your purse was right next to you? It definitely sounds like it was the watch, I think. I used to measure my bp regularly but in the end I stopped doing it because the more I tried it, th higher or lower the readings would go- my anxiety about it made the readings worse. Now I just accept that there are times when my pulse is nuts, and when my bp goes bananas. They are usually short lived, and so there is little use in knowing exactly what my hr or bp does and when- it's not like I need to rush to a Dr and get them to fix it; it will resolve on its own. A friend of mine has a structural defect in his heart, and the last time he had a really bad episode of arrhythmia he had to be cardioverted, but the GP didn't even *think* of sending him to the hospital until the tachycardia had been going for 24 hours SOLID. Even then, they weren't in a rush at the hospital. Less than a month ago I had an episode where my pulse spiked 200 during a migraine- the monitor alarms were sounding and the nurses just disconnected me from the monitors! While I don't think they were 100% right in doing that, I think they were savvy enough to know that I wasn't going to die or suffer any terrible collapse as the tachycardia kept resolving spontaneously.

I haven't been able to feel my feet properly for days now. They are cold and tingly. I have to have a hot water bottle on them at all times. My legs are still tingling below the knee, in both legs. Can anyone explain why this is? I would have thought if blood pooled in my lower legs (which I've been told it does), then my feet shouldn't be pale and cold, but rather mottled and swollen? It's as if there is no blood there at all. I also have a very weak pulse in my feet compared to elsewhere. Any thoughts?

Erythropoietin. It stimulates the production of red blood cells, thickening the blood and raising blood pressure, which for me meant the reflex tachycardia improved. It's not very commonly used. It's very expensive but I'm lucky enough to get it on the NHS here in the UK. As far as my Docs know, there are no other UK POTS patients taking this treatment at all. A shame, because it has really helped me.

I'm not sure if what I have is denervation in my legs. I know it's a common finding in folks with POTS. What I get is when I'm sitting- in the car, or at home reading, all of a sudden I get a very faint kind of tingling in my legs, usually in the back of both calves, always below the knee in both legs, and when I try to move my toes, it is really hard to move them- as if the signal isn't quite getting there. The only other experience like this I had was in an allergic reaction to cyclizine which caused dystonia and meant I couldn 't move my arms or legs at all. This isn't nearly as bad as that, but the principle is that same- my body is less responsive than usual. I've got it right now, with some tingling in my feet. Also ,the tingling is not like the numbness you get with pins and needles where it's real bad- it's quieter/fainter than that. I wonder if it could be related to raynauds? Just wondered if anyone else had this, and what has helped if you have?

Up until about a month ago, I was feeling pretty good. Having a routine helps me, and knowing I can rest when I need to (ie if I start to feel crappy in the Library I walk away for half an hour, lie down toease joint pain and go back). Also: Epogen. There is no question that this treatment has transformed my life, although it does bring MASSIVE weight gain. We're talking 70lbs over the last 3 years!!!!! Although some of that weight gain may be due to other meds I am on for something non-POTS related. Pushing my boundaries in a constructive way and not occupying the 'sick role' if you see what I mean, have also helped me stay quite fit. WhenI say occupying the sick role, I refer to one cardiologist I had in particular who told me to leave university and go to bed for the rest of my life because I was too sick to do anything. I told him to shove that idea where monkeys shove their nuts and FIRED him. That was 4 years ago now.

Brilliant idea. I love it! Where do I get one?! I still highly recommend the comments and smiling with scary bulging eyes option- works a treat for me. In my experience, if you know you're not feeling 100%, best to take a wheelchair and feel you've got too much energy than risk going without it and then get stuck. Tilly your cardiologist can prescribe you one on the NHS. That's what happened to me. Or you can self refer to local NHS wheelchair centre for an assessment

I feel your rage, sister! I got so worked up by my own wheelchair experiences, I decided to not get mad, but get even. If people stare at me now, I say loudly "Would you like an autograph? A picture?" and smile with MASSIVE SCARY BULGING EYES. My scooter in 2005 was the best- I would just shout "I'm coming through, you have to move!" at people who had looked at me, and not moved. Especially the ones who stopped right in front of me. Turn it into a game- a laugh! And see how you can turn it around. I know it's hard, though. *hugs*

ps sorry if I sound ranty- am in academic work mode at the moment, and dissecting arguments, citation and referencing is par for the course! Thanks to everyone who has replied