lil_kt

Thanks for your advice. I'll let you know how i get on. xxx

Hi i've finally got my appointment through to see prof m in London in june. I'm a little anxious about the tests. A few of you have told me what to expect & what the usual tests are, but i was wondering why do they do valsalva, squeezing tests? what would you usually expect to see happen with bp & heart rate? also has anyone who has gone to london for testing had the sweat test? Thanks for any advie. KT XXX

Hi i don't know wether this is POTS related, just looking for some advice. Today i sat out in the sunshine for approximately 45 minutes & it was approximately 22oc. While in the sun i started suffering terrible pains in my wrists, ankles & really bad in my spine. Its still really hurting & i can't seem to relieve it. It feels like someones got my spine in a tight grip & i keep feeling a weakness in my left arm. I just can't get comfortable. I was wondering if anyone has any ideas on what it could be or any advice on what might ease it. I'd be really grateful as it's really uncomfortable. Thanks, hope your all keeping well. KT

I have a wheelchair because of my POTS, if i try to walk or stand for to long i just end up collapsing or start getting symptoms like the fast heart rate, dizziness, nausea & also i feel completely off balance ( ike i'm drunk) & it knocks me about for days after. I don't know if it improves with medication cause i'm currently not on any apart from my salt & water till i see the specialist. I hope you do start to see an improvement soon. luv kt xx

Hi thanks for all your responses, you've helped put my mind at ease. FLOP- Thanks for letting me know about what sort of tests to expect. Hope you don't have to wait much longer to get the tabs you need. MAGGY- I'm from Birmingham, the hospital told me to tell them when the appointment comes through that i've got to travel down from Birmingham & they'll arrange any tests to be done in the afternoon on the first day to give me more time to get there. Where abouts are you from? Helen t- Thanks for the advice, i already thought about making notes about my symptoms etc so it might help me remember what i want to say. When i get anxious or nervous i forget everything so that should help. Thanks again for everyones help, hope your all keeping well. xx

Casper, i read your post & it was like reading about myself & how i've been feeling the last few months. I feel like i'm missing out on life & i feel like i'm ruining my partners aswell as his missing out on doing things because he stays with me, i understand the in-law thing aswell, i'm always worrying what they think of me & i worry they think i've ruined their sons life. They've never said it but i worry thats what they think. I get so down sometimes. My gp is sending me for some cognitive behavioural therapy to try & help me with having negative thoughts, fingers crossed it will help. Hope you are feeling better soon. xxx

Hi everyone, i was looking for some advice. I haven't got a date yet for when i'll be going to London to see the Proffessor M about POTS but i know it will be soon as i've been put onto priority list. Anyway i have started getting abit anxious about what to expect? i wondered if anyone who has been there could tell me what sort of tests they'll be carrying out? I'm going down for a week of testing. Thanks for any help, hope your all doing ok. xx

Thanks for all your help. The pain can be in both sides of my face at the same time. It could be some kind of new Migraine symptoms cause i do suffer with frequent migraines, i'll have a word with my GP about it next time i go. Thanks again

Hi i was wondering if anyone could help me? Over the last couple of weeks i've been geting these pains in my face, it's like a shooting/stabbing pain & its in my cheeks & round my nose & eyes & up into my forehead. it usually lasts about 15- 30 minutes but can come & go throughout the day. Does anybody else get this? & if you have any help on how to ease it i'd be really grateful. Thanks

I've got this in my middle toe on both feet, i've had it for about 2 weeks now, i can't feel them & they've turned bluey colour, even when i have a warm bath or put them on a hot water bottle they're staying blue. i was thinking about seeing my doctor about it.

Hi i know quite a few of you suffer with nausea, over the past month i've started feeling really nauseous about 30 minutes after i eat or drink anything it starts then it eases off about 2-3 hours after, it gets me really anxious cause i can't get comfortable & don't know what to do with myself. i just wondered if anyone has any idea what is causing this? & any remedies to try & ease it? thanks kt xxx

I had an MRI few months ago because of my headaches & mine showed i had some thinning of the brain tissue & a lower brain volume. guess that means i got small brain.haha

Thanks for your replies, made it a bit clearer. I just started panicing that my cardiologist had made a wrong diagnosis or something, even though all my symptoms are pretty text book.

I'M CONFUSED!! Does your Bp have to change when standing to have POTS??? I just seen my local Doctor & he said my Bp must change & my cardiologist says it doesn't. My cardiologist diagnosed me last month with POTS. i'm confused. On the TTT my heart rate increased by 70bpm on standing & i went very light headed.

hi everyone! thanks for your supportive comments you've helped put me at ease. i'll keep you all posted on what happens with my appointment

At least it will be easy to find, had horrible visions of wondering round London. Did you have to go for the 5 days of testing with him? just wondering because i read through some other uk users past posts & alot of them seem to say they had to go & stay for more tests? Thanx for your help

I'm from the midlands. Prof Mathias is who i am going to see. Is he nice? did it take you long to see him? i hate all this waiting around, i'm always waiting for tests then results. i don't really know what to expect, i've already had a tilt test at my local hospital. i couldn't have beta-blockers cause of asthma.

Hi everyone, hope your all ok. I'm new on here even though i've been reading these forums for a few months & found them really helpful. I've been ill since Dec 06 with very fast heartrate, black outs, dizziness & loads of other symptoms. i've been in & out of hospital at first they thought it was svt but i had more tests like 24hr heart monitor, treadmill test then tilt table test & yesterday i was told it was POTS. I had an idea it was as my symptoms were text book. I haven't been given any medication yet just high salt diet & lots of water. i'm waiting to see a specialist in london now & see what he says. Its been tough and i find it hard as i'm just 20 & i can't do the things i want to do & i can't go out with mates. I can't do much bcause i just end up in bed for days & blackout. i'm trying to get a wheelchair so i can get out more. Anyway i'm sure you will be seeing more of me on here.