persephone

I don't know if it's a hallucinaiton so much as a sensation but sometimes it's as if I'm on a catherine wheel and it wakes me up out of my sleep. I feel so ill when it happens. Certain codeine based painkillers can provoke it. I got a minister to pray with me about it once- I thought it was a demon trying to possess me, I was so terrified! horrible, horrible feeling! Anyone else ever get anything like that? Or have any idea what causes it?

Hi everyone, I know thatwe come from all over the place, but I wonder what you all tihnk of some kind of annual meet? Perhaps we could have a UK one and a States/Canadian one? What do people think? I'd love to meet you all in person!

Funnily enough, my rheumatologist told me I need to lose a lot of weight. I used to be about 100-110 lbs, but now I'm up to about 150. I'm only 5'1", and I reemember how sprightly I was before. Now I feel so heavy and slow. I don't even know where this has come from- I'm a vegan and I don't drink or smoke! I guess it's the quantrity of food and not the quality! I sort of know what you mean about not recognising yourself- if I look in the mirror while I'm having a funny turn, I don't recognise myself, but I think that might be part of the general confusion about it. When I was in the Neurological Hospital here in the UK this week, one of the things they ask about is your image and perception- I tihnk it's quite common qith neurological conditions and stuff like that. Maybe mention it to your Dr next time?

This seems to be a particularly internaiton and cosmopolitan community! Does any one know if there is some feature we can do to make a graphic map and point out where everyone lives? Maybe we should all list here where we come from? I'll start--I'm in the UK (England at the mo!)

Hi Gittel! whereabouts in Oz are ya? I've always wanted to go! I'm 23, and I'm Scottish.

Hi Rose! Thanks for the note- good to hear from you! I had lots of tests and so far, I don't have that many answers...I just know that I definitely do have POTS (which I already knew anyway!) My Dr will get back to me once the data's been analysed. They reckon those weird episodes I reported on here a couple of weeks ago were familial hemiplegic migraine attacks- interesting as my mum suffers terribly from migraine, alhtough not the same type. So that was interesting. Something that was really useful though was seeing the Rheumatologist- I now know why I ache all the time- I have EDS (III) and weirder still, so does my mum! she's been unable to work for over a year due to joint pain, and her rheumatologist here at home says she's just stressed worrying about me. What a dunce! He laughed when my mum said I was going to be tested for EDS, but at the same time noted my mum's knees were hypermobile! The nice London Professor who diagnosed us both told us that he is going to write to Mum's consultant to put him straight- it's so good that my mum has answers too! She's in torture most days! So errr....yeah, I have POTS, and EDS....that's all I really know. Thanks for asking though!

Hi, just thought I'd add something to this-- after seeing a neurologist briefly, he suggests that familial hemiplegic migraine might be to blame for these weird episodes I had--the slurring of speech, numbness down one side, being spaced etc. So it wasn't as bad as everyone (myself, first and foremost) thought! I thought I'd post this little conclusion as it might help someone else with the same symptoms? I'd never heard of this type of migraine, but the neurologist seems pretty convinced. It can make people ocmpletely lose consciousness, or feeling down one side of the body.

I have to stop my meds every now and then because I build up tolerances to them- the betablockers and the midodrine. It's best to listen to what your body is telling you. I thought my cardiologist would be well annoyed when I told him what I'd done, but he said he thought it was clever!

ARGH! the excitement! another Scottish POTS person! I'm in England now but I was at Uni in St Andrews. I am one of the six! Whereabouts were you diagnosed? I was at Ninewells but I know there's an electrophysiologist in Glasgow. I hope to god you're nowhere near Kirkcaldy- I was told by a cardiologist there who hadn't heaerd of POTS that I was mental and suffering from panic attacks. I have everything you describe. Midodrine helps me for a bit,but after a few weeks invariably stops working- so I have to put myself on a constant cycle- I'm not allowed to get too well, if I do I have to stop taking the tablets cos they'll stop working anyway, if that makes sense. What you really need to do is get referred to Professor Mathias in London. I was in the Autonomic Unit in the National Hospital of Neurology this week having autonomic testing done, but i had to wait about 4 months for that. I paid to see Professor Mathias in January- he's the only Professor of NEUROvascular medicine (as opposed to Cardiovascular) in the UK. I saw him at St Mary's which is in Paddington, but he also works in the National Hospital of Neurology. Do think about seeing him- I found the cardiologists in ninewells WONDERFUL but they were not familiar with POTS in the way that Prof M is...he's the one with the most answers, I'm told. Keep in touch- would be great to chat to you again sometime! I'll send you a pm and email too, incase this thread gets lost. but it is SO good to hear from another UK POTS person- I put posts up earlier asking how many of us there were and got about two responses. I know of two others- Hayley and Guvna2004, but they're both in england. Anyhoo, glad you joined us and said hi:-)

Thanks SO much, Steph! It's good to find someone with some idea of this at last! You've made my day

Does anyone know what effect the valsalva maneuvre is meant to have on a normal person? Or maybe why it made me see stars and nearly faint? just curious to see if anyone else might know about this. When I stand up and stretch, I take a deep breath and get dizzy. Stretching has always made my fainting worse. The day I broke my foot, I'd just gotten ut of bed and stretched. I know it sounds silly, but I always stretch when I stnad- I feel *SO* tired! Anyone know why we stretch? Or how to stop? Or if it can make us dysautonomiacs faint?

Hey Jen, we're the same age and have the same problems- EDS, POTS and NCS! How strange! I can't actually help with what you're asking about as I don't appear to get the bradycardia, but I hope you find the answers you need from someone soon. When are you 24? My birthday's September 23rd. It would be even stranger if we were EXACTLY the same age!

hi everyone, I'm assuming that something has been posted which is totally off topic, to provoke the reviewed rules of the forum? While I think it's important to remember that this is a forum for people with dysautonomia, I'm concerned that these rules unply every single post has to be related to the physical condition of POTS. Surely by talking about our achievements or concerns, our lives etc we are making valuable use of the facility of being able to talk to others with POTS/dysautonomia? Does this mean I'm not allowed to talk about how POTS makes me feel, or about my life outside of POTS? One of the dangers when suffering from this type of illness is to get obsessed and end up talking about nothing else. I think this is far unhealthier than talking with other people about light hearted things that may technically be a little off topic. Perhaps someone could clarify for me? I guess I'm just being a dumb english student again! no common sense, tut tut...

Hurrah! Good for you, Ernie! I felt like I was right there with you too...good idea about the flag....maybe I should get one of them for my wheelchair? If I'm feeling pre menstrual, I could write rude messages on it for people, like "HEY! It's rude to stare!" Seriously though, that's great news. Independence is great, isn't it!

Thanks Ernie. for some reason I thought you were my age- ie twenties...so I was surprised when you said that for 30 uyears you were told all sorts of nonsense about your faints. What worries me is that whenever I see a Doc, my bp is usually too high for me to faint- does that make sense? It's like too much is going on? And it's always in my mind, especially after what one silly Doc told me before Christmas--that it was in my head-- what if it IS in my head and I don't know? But how can moving in a certain way make my bp and pulse go up to 200 ish? Surely it can't? It just doesn't make sense. I want it to go away for good! I can't bear the thought of living like this any longer...my life is not worth living when it gets bad.

hey all, you know Im going for tests in the National Hospital of Neurology next week? Well, I'm worrying about it already. My cardio here told me I need to have my bp taken by special machines that go on your finger tip and can record the bp with each beat. but I think the London hospital still uses regular machines, which can take up to 3 minutes to pick up a reading. and by then, quite often, my episodes have passed So THAT's worrying me. But what's ALSO worrying me is WHAT happens if I get to the end of the week of tests and they STILL don't know what to do to fix me? What then? I will be so unhappy...because I've pinned all my hopes on going to the specialists. I am so afraid of being told that no one can find a cause for this, and having it blamed on 'stress' or some other intangible and nebulous term. I want to know what causes this, and I want it fixed. I have been taking readings of my pulse and blood pressure for exactly two weeks, and my blood pressure is clearly erratic--it can go from 76/41 to 196/142...as you'll all remember from a couple of weeks ago when I posted anxiously before going back to Scotland...I've charted all these readings to take to London, just to offer the Doctors extra insight and to prove that even if my readings are ok up there...(WHY DOES THAT ALWAYS HAPPEN TO ME? AM I THE ONLY ONE? ) they haven't been this past couple of weeks. Anyone got any ideas on how not to lose the will to live if I still have no answers after all the tests? I mean, this is probably what will happen, right? I've never had answers before, why should I get them now? I just want people to know this is REAL for me. And that it has almost completely robbed me of the life I used to have. Sorry guys, i'm having a grey and weepy day, as you can all probably tell Also, can you recommend what tests I should be having? I know i'll be having another tilt, i'm almost sure of that. And a food test- to see what happens when I eat/swallow. Also catecholamines, and an MRI of my head. but my symptoms are at their worst if I stand up and stick my chest out or stretch. I don't know if that's the same as a valsalva, as I've read that can cause similar problems to what this posture causes for me--pulse and bp shooting up or plummeting down, but never staying "just right"? anyone know anything about this?

Hi there. I was thinking of trying for an ablation too, but my cardiologist told me that allthe evidence points to it being terrible for POTS patients- doing more harm than good. I even posted here about it, and had lots of replies from people telling me thatit was the worst hting I could do...

Hi Jenn- yes, I'm going to see Professor Mathias. If you could ask your frined Dominique about her week in London it would really help put my mind at rest. How long has she waited for results? Cheers Px x

Hi everyone, at long last i've been told I can go to London next week for 5 days of testing at the National Hospital of Neurology and Neurosurgery. Now, I know most of you are from across the pond, but is there anyone out there who knows what I can expect to happen during these five days (I've already spoken to Hayley, who's been and survived! ). I don't know what tests I'm having except probably another tilt and some catecholamines. That's all I really know. But my Cardio here at home was under the impression that these tests could rule out a sinus node abnormality. Anyone got any ideas? Or know anyone else that's been to London for the tests? I'm just a bit nervous, really.

Hi James, I'm giving you a friendly wave as a twenty-something from Britain! It's really good that you can talk to the board about your honest feelings- acknowledging there's aproblem is half the battle won. Is there a doctor that you trust or get on with near you? I only have ONE GP that I consider worth spending time with, and I know that if I have problems I can always go to him. There are some charities for people our age to vent and let off steam with- they depend on where you are though, and I'm not sure which part of the UK you live in. Just google something and see what comes up...you never know what might appear. As for your bulimia, have you tried any treatments? I know that SSRIs (eg- prozac) are sometimes used for Bulimia, Anxiety and POTS_ you could be killing not two birds with one stone, there, but THREE! Maybe worth thinking about? Sorry you're feeling blue, but feel free to drop me a line anytime.

If only they were all like you, lindaf!

Hello stranger, I thought I'd not heard from you in a while! You can email me anytime, and I'm on MSN too...feel free to text too, if you feecrap there's nothing worse. You can always talk to me! big love n hugs going your way...

Hi Ernie, You're on the ball! I saw Prof Mathias in January- he diagnosed me with POTS . I'm on a list to see him again, that's all I know. I don't know when it will b or what it will do. My GP has tried to find out, so has my cardiologist, but no one is really able to tell us anything. It's reptty frustrating- he has so much knowledge and expertise- I know that he could sort me out! I can't afford private treatment--it would run into thousands! And I don't have health cover. As for Prof Kenny, I heard that she specialises in Vasovagals rather than POTS. And the waiting list on the NHS to see her would probably be similarly horrific. I wish someone could let me know what's going on.

is collagen deficiency related to Reynauds? Scleroderma is like Reanuds, isn't it? I have Reyanuds and have noticed that when my pots is worse, my hands and feet are FREEZING.

Does this happen to you guys often? I keep wondering if I should go to the GP--stupid me, can't get rid of that "help me Doc, I'm scared" reflex, even though they've told me there's no point in going ot them because they can't help--now I'm being told to go to hospital right away. Although I still find that pointless- there are no autonomic specialists here in the area. I feel weird, it's all different to how it was before. I know I'm paying my dues for the weekend, but it's not so much that my heart races, it's the HUGENESS of the beat- it comes right up into my throat and even my head. Really odd. and sometimes the beats are so big in my legs tha tit's like electricity, or tingling, and very disorienting. Managed to catch a full faint on my BP cuff today- I went down to 76/46 and my pulse was just 110, but I think I must've slowed by the time it was caught. I'm not sure though. But then it's all over the place. I've had lots of diastolics above 100 for quite a while now- which I find odd because if anything I've always had low blood pressure. Should I see my GP about this? But then, if I take stuff to lower it, I'll get faint again won't I? I mean, I'm a vegan, don't smoke or drink (well, this weekend I had champagne and wine, but for **** good reasons, and that was the first time I'd drunk all year!) Could anxiety cause this? I definitely feel "wired", which is stupid- I have my degree, and nothing really to worry about...except of course, being at home, having no friends nearby, my mum's bad health, our whole family's bad health come to tihnk of it , the future, wondering when I'll be seen by the London specialist, that type of thing I guess i'm looking for the only reassurance I can get- that someone else out there has been through the same and can tell me I'll be ok Big love to everyone, wherever they may be in terms of POTSiness.