persephone

Yes and yes! I'm nearly always freezing cold when it happens. Although saying that, if I sit infront of a warm fire for ages, I get TOO hot and then that brings on attacks too. I get the feeling POTS is one of those conditions where you have to try and strike a happy medium-- i.e- between hot and cold, between doing nothing and doing too much, between accepting prognoses and challenging them, that kind of thing? Anyway, yes, you're not alone. I am sitting typing this with ICY cold feet (well, not WITH my feet, you understand; I was trying to say that I HAVE freezing cold feet ) I'm sure you know what I mean. I'm babbling now so I'm going to shut up!

I wholeheartedly agree about the acidophilus. If I come into contact with wheat or dairy products I bloat and bleed. Everyone used to say this was "stress" but if I avoid those foods it doesn't happen. I had to go holistic in the end. I kept getting admitted to hospital with dsearing abdominal pain and sent home being told there was nothing wrong with me. I knew all along that there was. Of course, I know now that POTS and NMH can cause digestive tract upsets, and that we're more susceptible to intolerances. I personally think my episode of acute pain was caused by a course of strong antibiotics; these completely destroy the balance of bacteria in the gut and I couldn't eat or go to the loo properly for months after I had those tablets. but once I found a nutritionist who gave me acidophilus, I slowly and surely got better. I' ve been on acidophilus for a year now and have gone down two dress sizes. I know exactly what I can and can't eat and I'm fine. despite this, some people still tihnk it's "in my head". When I was in hospital before Christmas last month I was given wheat free bread but I bloated and bled. I asked them to check the ingredients on the packet and sure enough there was milk powder in the bread! WEirder still was that there was someone else in the ward with wheat and dairy intolerance and she had EXACTLY the same reaction to the SAMe bread. Now that is NOT in my head! Can I recommend the website www.foodintol.com? It's very good for anyone who tihnks they might have a food intolerance, or who suffers from votherwise unexplained GI symptoms.

I mean that I had symptoms but I didn't faint. My heart is still racing, and rising by over 30bpm so I think I'm testing positively for POTS. But it's just so frustrating that I don't faint in tilt tests when I seem to faint so much and so easily the REST of the time! grrr

Thanks everyone! Janet, you sound just like me! I was told that I had to see a shrink just before Christmas. I should add that the Neurologist I'm seeing is EXCEPTIONAL; he's the only person in Britain who seems to know about POTS! So I am REALLY glad I found him. It's now that he isn't helping; he's LOVELY, it's just that I don't know when I'm due to see him again, and seeing my pulse go THAT high was quite scary. The thing that frustrates me about all this is the fact that in 11 yearsvirtually NO ONE had the initiative to take any readings from me whilst I was standing. I've had 24 hour holter monitors and normal ECGs, and one EEK 10 years ago. But NO Exercise tolerance test....not even an ECHO! In ELEVEN YEARS of fainting, breaking bones, having my degree cut short and putting my life on hold! SO frustrating!!! It's only because I got a machine myself that I was ever able to prove my heart beats faster atall! I haven't been able to tell a doctor yet about my pulse reaching 200 as I've only just discovered it myself, helnce the panic stricken post earlier. Thanks to everyone for info and replies, as always for listening, unlike the majority of doctors I've seen over the years!

I actually fell from the treadmill today....all I was doing was WALKING with a gradient. I didn't even run! I'm actually on the BP monitor today back home after failing the tilt test AGAIN yesterday. The BP monitor the hospital gave me comes up with error readings everytime I faint/ get dizzy. They said on the phone today that this means when I stand, or move posture suddenly, my pulse is probably going to ofast for anything to register. So I went to the gym as they have pulse monitors of their own; since this hospital gave me a journal to record symptoms and times of readings in, I thought I'd go and get some solid figures to be able to write down since the BP machine isn't picking them up. My pulse went up to 197 just before I fell. It also went up to over 200 on tuesday with virtually no exercise atall. the thing is, I've seen cardiologists and they say my heart's ok. but they've never done Echo cardiographs, or exercise tolerance tests. They never really see me at my worst. I'm seeing a neurologist about POTS, but do you think maybe I should be seeing a cardiologist? I'm yet to find a caridologist in Britain who knows about POTS. Infact I don't think there *IS* one! Anyway, back to the original question...as I was white as a shet, freezing cold and shaky after the treadmill incident, and my pulse was rocketing like that, should I tell somebody? Should I be worried? Am I going to have a heart attack? Isn't the max HR you can tolerate 220 minus your age/ That would be 197 for me...but I was going beyond that the other day. I felt ever so ill. What should I do?

I took Prozac (don't know if it's called anything else in the states; I'm in the UK) for 18 months and then POTS just went bananas. I know SSRIs can be used to treat pots, but in my case they made me feel much, much worse! Then again, there's always one and it's always me

Tomorrow I'm having my third tilt test and I'm so worried. What if it's negative? My second one was, too. Will the doctors just think I'm loopy and a 'faker' if I don't faint in front of them tomorrow? I'm sure that when I get too stressed my pulse andBP get too high for me to faint on the table. The first time I did faint, so with one positive test and one negative, does this mean everything rides on tomorrow? i'm trying to stay calm but I can't help being worried. I'm so afraid to put my faith in another doctor i ncase I just get let down again Anyone got any advice? Am SO upset and frightened...anyone else got any ideas? K x x

Hi everyone, thanks for the replies. You're very kind It's good to know I'm not alone. I'm trying some valerian just to get some sleep. I feel so low, so isolated and cut off. My mum and dad keep telling me snap out of it, but I just can't. I've always bounced back from adversity,in the whole 11 years I've had fainting fits...I've had so muchother stuff to put up with besides, bereavement, bullying, depression....I've always bounced back. But now I just can't. It's like the spiring has prung for the last time. Like something has snapped in me. I feel like my heart's just broken and it really, really frightens me. If I knew what to do to make myself better, I would. But I have absolutely no idea... Now I have the diagnosis shouldn't I be on top of the world? But I'm not. I feel like a failure, a nothing, a nobody. someone who doesn't matter. I'm not a student, I'm not working. I'm just a drifter, a loser. I did well in my degree, but who else cares about that? I can't see anything positive, no matter how har dI try. I just need a cuddle. Anyone care to oblige? I'm sorry for being so pathetic. I guess prozac withdrawal is harder than people let on

I was so looking forward to going back to University, but now the people I lived with last term have told me they don't want me to stay with them anymore. They don't feel they can cope with me. My mum and dad are also telling me I'm nott ill to go back. The University have offered my degree to me on a plate- thye're giving me first class honours without taking any more exams, because they too think I'm too ill to return. St Andrews is 500 miles from where I live at home, so it's not even as if I can get there easily just to say hi to people. But all my friends are there. Since September 2000, my social life, the hub of my existence and happiness has been there. People are saying to me that it's common to feel like this when you finish your degree- to feel exhausted and sad. But I feel like I was wrenched away. I graduate in June--everyone else will be finishing then. I should have graduated last June but lost a term through illness in2003. To have it happen again, and miss finishing the year off with my friends again is just too much. My mum and dad tell me it's just tough, I need to pull myself together and get a job. They say I can get a good one with the degree I have. But my POTS is making me so ill, to begin a whole new life here where I have NO social contacts atall, where I have no independence (everything in St Andrews is within walking distance; but here I'm miles away from anywhere, in the suburbs, and I can't drive)..I just feel so lonely, remote, cut off. I should be planning for the future...I should be applying for PhDs and getting excited about that. But I am terrified about being stuck in wha tfeels like purgatory. I wake up in the morning and I can't stop crying. I can't function. I have no appetite. I can't sleep. I shout at people for silly things. I've suffered from depression in the past, and on New Year's Day I decided that I was going to cut my prozac altogether because I had solid proff after weaning myself slowly off of it that it makes my POTS and NCS much, much worse. I think this is affecting me too. The withdrawal is unbearable. I am turning into a different person. And to top it all, I've discovered that prozac takes up to THREE months to leave the body. Will I have to live like this for three months? I feel so stuck. So remote. So alone. I thought that onc eI got a diagnosis my life would return to normal. Now Im waiting for tests. I either cough up money my poor old parents really just don't have (my mum can't work, she's too ill) or I wait for SIX MONTHS on the NHS. SIX MONTHS! I can't live another SIX DAYS like this! I feel like I'm not living, I'm just existing. Does anyone have any ideas about what I should do next? Does anyone have experience of coming off prozac and finding it tough? Am I just nuts? I feel like I have bounced back again and again, and now I just can't do it anymore. Anyone who can offer any advice atall, please do...I feel like my life's over.

That is all

God YEAH, that's really weird...I have an ill mum and perfectly healthy dad. Ben, this is uncanny! Add me to your msn...would like to chat to you live. THese boards confuse me...I'm an English student., am very dim! I was also told about "somatization disorder" and anxiety. My GP who backed my POTS theory and diagnosis all the way tells me not to be angry, that I should look forward not back, but because I'm a final year student at a decent university, these so called experts who I tohught were supposed to help me, jumped right in and assumed it was a stress related disorder. NHS cretins. I won't use the names I really wanted to, people here are civilised beings! how old are you Ben? I have an image of you as twenty something. I'm 23.

Thanks everyone. After the initial relief I experienced, Im now really angry. It's like white rage that I'm experiencing. We're now making an official complaint against the hospital in Scotland where I was told I was nuts. But the good news is, I can scrub my last term's work and go back to college and finish my time off properly. The only thing is, the lovely people I was living with before Christmas are, I tihnk, going to be wary about having me back to stay with them. I was so very ill when I stayed with them, I'm sure they'd be petrified in case something else like that happened again. Any one got any ideas on how I should broach the topic with them? It's going to be nearly impossible for me to get accommodaqtion anywhere else as I'm nearly halfway through the academic year. These people are the loveliest people ever, but when I said I wanted to come up for a party they were having this weekend, they said I they didn't want me to come incase I fainted, that they would spend the entire night worrying about me. They said I would be aliability to my friends, and basically a bit of a burden. Anyone got any ideas?

Hi everyone, I want to say a big thankyou to you all because i went to see Professor Mathias today in London and he was lovely. He says I have NCS, POTS, and EDS. i'm going back for more testing, but I feel so relieved just for having some answers, you know? Atleast I know I'm not nuts! I would never have known this doctor existed if it weren't for this website, and I certainly wouldn't have had the courage to get the train to London and see him, were it not for the encouragement and kindness I've encountered on this forum. I came up with the idea of sending an email with a list of symptoms before the consultation, so that I wouldn't have to sit and rhyme off the same old stuff in the actual meeting. That was the best thing I could have done because he'd read it all before I got in so he was able to sak me about other things. Like the fac t I'm double jointed and used to be gymnast, the fac t I'm always cold, that sort of thing. How terrifying is it though tha tI have proved wrong three cardiologists and another neurologist and I haven't studied any biology since I was 16? Yet I know more about my autonomic Nervous System than THEY blimmin' well do? Ben, you're right, mate, when you say "trust me, I'm not a Doctor." Except for Professor Mathias, because he is awesome So thankyou once again, people!

Hi Ben, I'm in England too, and I am also very new...I've only been a member of this forum fro a couple of weeks. There's another girl here I've been chatting to who's from England aswell. THere are a few of us Brits on the board I know exactly what you mean about the NHS. THey've done nothing for me in 11 years of fainting It's only since I discovered this website and spoken to others that I've plucked up the courage to demand a referral to a specialist in this country. I'm haivng to travel on the train to London with my Dad to see this specialist, but I've been assured by others that he is a really good doctor and a very nice man. I'll let you know how I go, and then maybe you could get a referral to him too? He's a Professor from Imperial College and he is a neurologist, I think. Anyway, you'll find his contact details on the list of physicians... God, where would we all be without this website? When I'm better and more able, I want to start doing fundraising and profile raising events for this group and the condition in general. So sorry to hear about your misfortunes. I've not been sent away anywhere, but after 6 days in a coronary care unit, a neurologist came to see me and told me that I need to see a neuropsychiatrist who deals in unexplained physical symptoms because there is no physical cause for my faints. Well, from reading this website I know he was full of LIES. Even my GP agrees with me, and an endocrinologist I have seen at a different hospital. I have it on good authority from a former chairman of the British Medical Association that inthe NHS, you are given a WEEK in hospital while they try to find physical causes for what's wrong with you. If they can't, they tell you it's stress and chuck you out. And label you mentally ill. This has happened to me more than once. Don't feel bad! You're not alone. Speak to you soon

Thanks everyone! Kind messages of hope as always The problem I have at the moment is all of my friends are friends I have made through university. And I live 500 miles away from there, so my parents are my only real access to the outside world. Sad, I know! When I'm at Uni I never get a minute's peace, all my mates phone and visit and take me out the entire time. I'ts a wonder I ever got my degree really! But back here, it's the total opposite. I guess that also adds to my feeling cranky...I really resent feeling so cut off. I just don't know when I will be able to go back to Uni and see everyone again. I missed my last week of my last term a fortnight ago because the hospital kept me in, and nurses said they were witnessing heartrate changes in my telemetry but then the consultant let me out with no answers....so I never got to say goodbye to any of my friends. I wouldn't have minded that sacrifice if it had been FOR a REASON, but instead it was for nothing. I'm still reeling over that At home,I live in the suburbs so any time I want to go anywhere, I'm relying on a bus (not that I'm allowed out on my own just now!) or my mum to drive. I don't feel I need a wheelchair all the time, it just seems to me that on days when I'm bad, like today,getting out would help. But I've been stuck in ALL day which just makes me feel even lower. My mum and dad say I'm in no fit state to go anyhwere. My GP said this morning that I have to indulge my parents abit because it's perfectly understandable that they're very worried. I just dunno what to do for the best. I don't want to upset my folks. They're lovely people but they spend the ENTIRE time worrying about me. It doesn't matter how many times I tell them to stay calm, they never do because they're fretters by nature... Anyway, thanks everyone for the lovely replies. HElpful as always! I'm so glad I found this forum. I don't know where I'd be without you all. you're my lifeline!

I'm 23. I feel like I'm a caged a animal. I'm home from University and my parents won't let me out to do ANYTHING in case I faint. Because I can't walk round the shops wihtout starting to ache/feel faint etc, they just won't take me. Full stop. But back at Uni, the lovely people I lived with got me a wheelchair from the red cross and took me about in that when I was too ill to walk. Atlesat I was getting fresh air that way! And seeing something other than the same four walls of my room. So, whose way is right, in your opinion? My mum and dad seem to be in denial, and won't even hear of a wheelchair. They'd rather I stayed in the warm and didn't risk going out on a bad day like today when I'm very achy and faint. But I would rather go out in a chair, as I couldn't hurt myself really, and would get some contact with the outside world... What should I do? I can understand why my parents are worried, but I need to have a life!

I've been on Prozac for 18months. First it was given to help with fainting and my being depressed but now it's stopped working. My fainting's been much worse. They tell you not to stop taking prozac suddenly but I have and now I've go ne cold turnkey I don't faint as much. I feel sotr of flu-like and dizzy/weak but I figurre this is better for my body than taking the prozac. It has too many side effects. It makes me feel even thirstier than usual and to my mind is a far more poewrful drug than people seem to realise... Is there anyone else whose symptoms have been amde worse by prozac? I was told by the cardiologist I saw that a tachycardia of 150 on standing isn't enough to make someone faint (he didn't know about POTS) but I asked if it was possible for a faint to occur at that speed when combined with the side effects of prozac. I was told this is impossible, but I *reall* don't think that it is.

Has anyone else had the same reaction to alcohol as me? I can handle a couple of glasses of rum, I don't know why. But anything else, especially wine (and RED is just OUT of the QUESTION!) just makes me feel heavier and heavier until I collapse and feel so heavy that I cannot actually breathe. I don't mean I'm gasping. I mean I literally STOP breathing altogether for up to 30 or 40 seconds. Quite often I can hear people around me, and they'll be saying stuff like 2Breathe, come on, breathe" etc but most times I just can't...it's like my whole body shuts down. I can't move or do anything. It's weird!

I had one postive TTT 2 1/2 years ago, but in that my pulse and BP dropped after isuprel was put under my tongue. I was told I had NCS. But since getting this flu bug in October, I have the major symptoms of POTS. I had another TTT this month and didn't faint. But when I raised my arms above my head (it seems to happen more when I stretch or alter the position of my arms) my pulse went from 90 to 160, but my BP never changed. A,so, if I tensed my legs my pulse went from 100 to 130. I felt awful during and would have fainted as I'd begun to hyperventilate but the staff kept dorcing me to slow my breathing. I don't feel this test was accurate because it wasn't how I normally react when my symptoms occur. I also felt that I couldn't faint because I was tied too tightly to the table to be able to move in the way I usually do when changing posture. Am I clutching at straws? It's just that I feel *SO* sure I have POTS, but I'm worried that the Doctor I see next week will take one look ast the most recent results and say that I don't have POTS or an autonomic problem and that I'm just an anxious person. It's so hard to keep the faith after so many doctors have just treated me like a fool/idiot. Anyone got any advice or info? Also, thanks for the words of encouragement and support on the other post about getting to see Professor Mathias in London:) Big love to everyone

Thankyou SO much for all your help, everyone! If I hadn't accessed this board and spoken to the people I have through it (especially Hayley) then I never would have had the courage of my convictions and the strength to defy the Doctors in Scotland who told me I was having panic attacks....I've always known that this was physical in its origins, although it makes me feel frightened when it happens. I also would never have heard about Professor Mathias in London or managed to get in touch with anyone who actually knows about POTS. I am just so thankful to the DINET for helping me in this way. I saw an endocrinologist on Tuesday who told me I'm probably right about POTS, but he doesn't know much about it. I phoned Prof Mathias' secretary who put me through to a very kind nurse who really took the time with me and listened to me. She gave me lots of useful advice and said that I could get a referral to Prof Matthias through my GP. So I printed out the pages on POTS and showed them to my GP. He was stunned. He said the evidence looks pretty irrefutable to him. He took me out of his consulting room and in to the waiting room where my mum was sitting and told her to be very rpoud of me because it looks aws if I have made my own diagnosis. So I'm seeing Professor Mathias at St Mary's in London in a couple of weeks. Hopefully now I can get fixed. Hurrah! Do you know, even my physical symptoms are abating and subsiding now because I know I can see someone and get some help...I'm not nearly so weak and dizzy. So a great big THANKYOU and merry Christmas to everyone on here. Thankyou SO much for the best present I could have received--the possibility of getting my life back Persephone

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Hello everyone, thanks for the messages and contact...I feel better just knowing I'm not the only one who feels like this. I just wondered if any of you ever get days like I'm having just now, where when you stand up and sort of stretch, you can feel the pressure in your head as the blood rushed to get to it? I don't know whether the blood is getting there or not because my hands and feet have been freezing all day. I have taken a TRamadol (Zydol) tablet and the pain is still not shifting. I've drunk 5 pints of water in the last few hours and still my lips are cracked with dryness. Anyone else ever get the compulsive thirst or the head poujnding in this way? I also can't see properly; it's like sparkles in my vision. The only way I can describe the way things look to me today is as if it's raining glitter in front of my eyes. Can anyone offer some advice? I just want my life back

Hi everyone, thanks for the replies. I was told 2 years ago I had NCS and I just kind of coped with it. but after the flu I got in October, theses new symptoms appeared. I stopped feeling everything slow down when I fainted and instead got pal,pitations. The first tilt test 2 years ago confimred NCS- lower pulse and BP but now they appear to be rising. My Tilt test last week was negative so the doctors do think its psychogenic. I showed the consultant the pages of symptoms of POTS...I can tick off nearly every one, including the thirst, the weird sparks in the vision, the tachycardia on standing and stretching, the shakiness, the exhaustion etc and he hadn't even heard of it. He looked it up (so say) and told me I didn't have enough symptoms to match it, and that my pulse should be faster than 150 (what it was going up to). Anyone care to expalin more about that fainting thing caused by moving an arm? Who do you see to get treated for it? A cardioloigist, physiologist? I am very interested in this. If you could get back to me I'd be very grateful. I'm in the UK. I've just finished my degree. I proved the NHS couldn't beat me, I've just finished with an MA honours first class!

I'll try and keep this brief. I am 23.I have fainted since 7 days before my first period at the age of 12. I have always managed pretty well, but two months ago I got a flu like vorus which left me quite weak and made me faint a lot more frequently. The virus has passed, but the fainting is continuing with alarming frequency. I stand and stretch, my heart races and my vision fades. I get tingling, or a sense of electricity through my face and kmy arms,and my head quite often feels sore afterwards, too. It's like there's too much blood trying to push through something that's too tight, and it creates pressure oin my neck. I always have sparkles in my vision even when not fainting. Last month I broke my foot when I fainted on it and this week I skinned my arm by passing out in the bathroom. No one has ever offered an explanation. I have seen neurologists, cardiologists and countless GPs. I had a tilt test done two years ago in which I fainted after having a dose of isuprel under my tongue. My pulsewent from 124 to 64 and bmy bp dropped to 76/52. I had a tilt test done again 8 days ago and I didn't faint. But when I stretched my arms above my head, my pulse went from 90 to 160. The cardiologist kept me in the Coronary Care Unit for a week. Two doctors and five technicians told me that via the telemetry unit I was wired to, they could see an atrial flutter with two to one heart block, that explained my lightheadedness but not the fainting. They told me it was easy to fix. THen the consultant told me this wasn't the case, and that I shold speak to a neurologist. The whole of the week I was in the hospital I kept fainting, continually hurting myself and losing my vision. I felt so weak some mornings I couldn't lift my head. My heart was constantly racing. The neurologist told me he thought I was suffering from panic attacks. I had panic attavcks at 14. They caused me to hyperventilate but not to faint, and felt totallyt different. Now I am being referred to a neuropsychiatrist who deals in unexplained physical symptoms but my mum, dad and friends who've seen these episodes are convinced that I don't have a psychological illness causing this. It happens when I'm happy as well as stressed. Depression does run in my family, but that is due to a chemical imbalance in the brain rather than any psychological cause, and is a genetic thing I have no control over. I have been on prozac on and off for 9 years. I have noticed my fainting becomng markedly worse since taking this drug. I need to come off it; I don't even feel I need it now. But every time I stop it, I get some very strange physical symptoms. Does anyone have any experience of POTS exacerbated by Prozac or other antidepressants? We think that because I've been a student for four years and pushed myself hard to achieve top marks, and have a history of taking an Antidepressant, the doctors are now clutching at straws for an explanation and trying to pin it on depression or anxiety. Even if the doctors DID tihnk I was having panic attacks, how could they let me out like this, unable to stand without losing my vision, finding my hands and feet going cold and getting palpitations? For the entire time I was in CCU, I was confined to bed, not allowed up without a nurse being in the room and had to be hoisted in and out of the bath and supervised the entire time incase I drowned. Yet hours after this I was told to go home and relax over Christmas. This condition is totally debiulitating. Where do I go from here? If anyone can offer my any advice, please email me through my profile or post here. I just don't know what to do. I am at the end of my tether.I just want my life back. I can't tell you how let down I feel by the NHS and how angry I am that no one will take me seriously. I am a gregarious, intelligent outgoing young woman who plans to embark on a PhD, not a neurotic wallflower who suffers from subconscious panic attacks at the slightest thing. This neurologist even tried to imply that something traumatic happened to me when I was stretching as a child which is why I faint. Have you ever heard anything SO ridiculous? Please, please help! Anyone wiht any information or insight would be doing me the hugest favour. I am now at my lowest ebb ever.