persephone

Thankyou SO much everyone, for your kind words. I know I say this everytime when you help pick up the pieces, but you guys really are my lifeline sometimes...no one else can even imagine what it's like to have this condition, can they? I really did feel so desperate at the weekend...like I had snapped and cracked all at once. I still feel totally gutted about being 500 miles away from all my university friends, and to be told on Friday that there's nothing they'll do for me here at home til I can see my specialist in London was just SO frustrating! Things are a bit brighter and I have a bit more of my old bounce back. I've been sent home with a hospital bed--i.e- one that is electric and tilts. The cardiologist here has this theory that if I sleep at an incline of about 30 degrees HEAD UP tilt, then my body will become accustomed to not being flat, and my orthostatic tolerance will be higher. I don't know if any of you guys have tried it. After 3 weeks in hospital, I'm not sure it's 100% effective. It seems a bit hit and miss. But then the other day I tried lying flat and sleeping....woah! I felt MUCH worse! When I woke up, I thought I'd had a stroke or something! I was trying to lift my head and even that made me pass out. I tried to call for a nurse but I couldn't speak. And I was whiter than ever... almost transparent! So...I'm still in the 'trial' stages with this tilting malarkey. I'm walking with a stick instead of wheels....YAY! anyway, I just wanted to give you all huge hugs and say THANKYOU so much everyone :-D AND SORRY FOR RANTING!

I am in suicidally deep hole. I've been in hospital AGAIN for 3 weeks here at home, away from University. They refuse to do anything because they are cardiologists with no specialty in dysautonomia/pots. So they got in touch with my specialist who says I'm just on a waiting list, but they can't give me a date for when I'll be seen. Because they didn't suggest any treatments for my Dr here to try, I'm being sent home and told to get on with it. I've been walking around the ward with a zimmer frame on days when I don't need wheels, and have been given a perching stool for the kitchen and a board for the bath etc. I'm in my twenties and living like an old woman. I don't understand why no one will help me get better. It's just all too much. I feel like I've taken all I can, and I just want this all to end. Forever.

Yes! I yawn so much sometimes that people think I sound like I am gasping for breath--and it doesn't last long, but when it happens it knocks the stuffing out of me completely. I have to go upstairs on my bottom because I can't stand atall. I lie flat and it just doesn't help. No one's ever been able to explain it to me, either.

I notice that a lot of the symptoms look the same. Are there any people out there with this condition?

I am just curious as someone in the UK myself...a lot of people here seem to come from the other side of the pond. Is it true that Professor Mathias in London is the only person in the UK who actively researches POTS? If so, that is shocking!

Thought I'd write this in green to be all jolly-- this is SO cool--today I made it to the gym. You may think this is nothing coming from a 23 year old vegan who used to cycle 5 miles a day and swim 1km at the pool 3 times a week, but after the last POTShole (which I whined about on here very recently- SORRY!) I was left in a wheelchair and the most incapacitated I had ever been... Since Thursday I have refused the wheels and decided not to get mad, but to get even with POTS. So I've been walking a little bit each day, and today I did a little bit at the gym. Not much compared to before, but I walked over 1km on the treadmill- that's more than I've walked in the last 2 months. I felt quite proud, even if I do say so myself... My pulse was MUCH better than last time- mainly in the 150-160 zone, but up to 170 on the stepper (Always did hate stairs!), as opposed to 205 + These betablockers are obviously making a real difference. Not bad for someone told 2 weeks ago by a cardiologist to get used to having a wheelchair because there was nothing else left to try! just thought I would share my GOOD news with you all

This makes me so cross,and it is a typical British view. No one here knows about POTS- Professor Mathias is just about the only person who understands what it is. I've been stuck with POTS for years and have only had a diagnosis in the last two months--up until this point they were telling me that fainting was in my head- despite the face that my SATS go down to 70%, my BP is unreadable when I stand and my pulse can shoot to 220! Even in the hospitals I've visited (alhtough I exclude the most recent one from this, as they were very good) they told me that machines are never wrong--of course, now I know that I can have attacks that pass before the machine is able to read what's happening. I just thank GOD that I found this site and came across info about POTS- they were referring me to a neuropsychiatrist who deals in unexplained physical symptoms when I came across POTSplace. Where would I be now? I was angry enough to research and find out what was wrong with my body. There must be loads of other people out there who aren't/weren't, and have ended up being treated as if they have a psychiatric illness. It makes me so angry that people are treated like this. I was also told two years ago that terrible abdominal pains I experienced after eating wheat, yeast and dairy products were psychological, but now I know that food intolerances are part of dysautonomia, as are general digestive problems. Why do doctors constantly let us down? I often think that in Britain a lot of the problem is in the NHS- the fact that you don't pay directly for your consultation means you have no rights- you have to accept what you're given. whereas if you pay, then you can demand a certain level of service. Perhaps that's why POTS is more widely understood in the States? Seriously guys, I've come across doctors, paramedics and Accident and Emergency Dept consultants who've nevre heard of POTS or evn dysautonomia! It's so frustrating.

Hi Brenda, Welcome! Hope you feel better soon--hope your bp isn't too high. this website and forum have been a godsend to me- I would never have been diagnosed without them. They've done me a lot of good and are my major life line at the moment. Best wishes P

Thanks guys! I knew you'd all be chuffed! Well, I'll be studying the manuscripts- Oxford has awesome holdings of medieval and renaissance books, prints and texts, and also the stuff I've always wanted to research- medieval Scottish stuff--which isn't dry or dull like many people might think (did you know it was a Scot in 1503 who first used the word f**k?! I'm serious! The world authority on Medieval Scots is at Oxford, and is probably going to be my supervisor. I've met her and we got along really well. She's also president of the Scottish Text Society. She is the most active researcher in Scots around, and is just the coolest She'll be teaching my course on Scots, too..so I'm literally going to have an opportunity I wouldn't have anywhere else (nowhere else in Britain really teaches Scots, except Glasgow, but this expert isn't there.) I'll also be studying poetry, prose, drama from 650-1550. I'll have the chance to read some Anglo Saxon, Old Icelandic and basically the stuff I love but probably can't study anywhere else! The difficulty is getting funding to cover the cost of going. At postgrad level, the fees are the most expensive in Britain and I don't have the kind of money to cover the fees but with a bit of luck I might land a scholarship...although the chances are pretty slim. But yeah, I still can't believe I got accepted! It's something really good to aim for, as the course wouldn't start til October- plenty of time to get out of this POTShole. My doctorate will be on dream visions. To medieval people, poetry where people talked about dreaming was as popular and conventional as the novel is to us. but it's sort of obscure now- not really studied much. I'll stop babbling now--most people don't find this stuff nearly so exciting as I do

I was so busy ranting and raving that I forgot to tell you guys myGOOD news! (blushes). I have just had an unconditional offer from Oxford University to study their Medieval English masters! I couldn't believe it either! Shame I was in hospital when I head- it meant I couldn't crack open the champagne, and my parents weren't there to hug me either... BUT is this not the *coolest*? We people with POTS can go on and succeed! (I'm not saying I will- but I'm going to try **** hard)

Thanks everyone, you've been groovy and fab as ever. You've helped me already. THe worst thing is isolation that comes with this. In the hospital, I was the only person on the cardiac ward who wasn't 85! It feels so unfair..the ward had so many old women who have done nothing to help themselves, smoking and drinking (the number who went outside in the freezing cold, wheezing, to have a cigarette was shocking!) whilst I'm 23, love the gym and swimming, have never smoked, rarely drink and follow a gluten free vegan diet. I know I sound like a spoilt brat but I just wanted to shake these women and say "what ARE you DOING?" They're able to walk about, and I'm the one sent out in a wheelchair Today is the day that I should have been helping out at the biggest Poetry festival in Scotland and having a great time...instead I'm at home in bed. I went to the shops today with my mum and the number of people who just stand and stare with their mouths wide open at me because I'm in a wheelchair made me so MAD. It's disgusting the way people are so narrow minded. How would THEY feel in my shoes (or indeed, on my wheels? ) Sorry about mini rant---I HAD to do it. This message board is my life line. THankyou all so much.

Hi everyone Sorry I've not been about for ages. I'm just out of hospital. college went horribly wrong..I got a flu bug when I was there and in the end every single time I stood I was going tachy. It was far worse than ever before though, and I ended up in hospital. THey thought I'd broken my neck the first time I'd landed so awkwardly, but I was sent home and told to get on with it. Then I got much, much worse until I couldn't do anything for myself. They were lovely in the hospital, told me they knew about POTS but it's extremelyrare (only 6 other people in the whole of Scotland with it) and no cure exists. THey have me on midodrine and betablockers but these attacks still happen, it's just that my pulse is slower when they do. They said there's nothing else they can do for me and sent me out in a wheelchair. The thing is, I wonder if ablation might do some good. My GP is on the case with that at the moment- has anyone tried it and had it WORK? They told me that only young people get POTS- is that true? They also said that because you rarely hear about older people with it, it might just go away as I get older. Was I being fobbed off, or can POTS really just go away all of its own accord? Hope everyone is well, sorry I'm not!

I can't eat any wheat or dairy products. My stsomach gets upset and I have only recently diiscovered that I have ana ctual intolerance. I can't drink white wine- it makes my heart feel like it's going to fall ight through my guts and onto the floor. And red wine can just not happen. I lose my vision and end up flat out. It's like my blodd pressure just disappears. I get much worse after a meal, too. I gather it's to do with our stomachs using too much blood to digest the food? Then there's not enough blood going towards your head?

I'm pretty miffed because they said it's too dangerous for me to take, and they're worried I mighr sue them if it goes wrong...does anyone know what the heck these people are talking about? I personally think they're just trying to win an award for most awkward and annoying GP ractice in the UK!

Professor Mathias has suggested I try this drug. I dont know much about it. went to my GP and asked for it, but they said it isn't licensed in this country. Does that mean I take it as a named patient from a consultant?

Anyone got any ideas? I stood up and my blood pressure SHOT UP. My pulse wasn't too bad though--66 to 108 which is VERY mild for me. Is it possible that the BP change more than the pulse can cause symptoms? I still don't have my autonomic testing results so I still am not on ANY treatment atall..... I've had a virus these past two weeks and it seems to be making things much worse, as you'll see from my other post about being back at university! I thught normally people with POTS had a BP drop that caused problems. Are there many peole out there who have arise like i do? Is it possible that a sharp rise in bp can make you gfeel rough and lightheaded like a drop does? Anyone with any info atall, I'd really appreciate hearing from you

Hi everyone! I'm BACK! I made it! Thanks for the kind wishes and everything. My friends met me on the train at Edinburgh and helped me out for a few days while I sorted a new flat. It's a lovely house, really nice. It's so good to be back, but a bit different, as I'm not in full time classes. Because I was ill and missed my exams, they're saying here at St Andrews that they just want me to do one more essay between now and Easter; but really it's just a formality, and won't stop me getting my first Sunday was VERY hard though....remember the people I told you about who tried to stop me coming back by saying I couldn't live with them because I was a "burden" and an "invalid" ? Well, I came back anyway, even though they sent me another email the day before I travelled...I had to go round to their house and fetch all of my stuff from my old room to take it over to my new house. It made me feel so awkward. I started having a POTS attack on the stairs (their house is 3 floors) but I was determined not to faint, so I just sat for ages with my head between my knees. I didn't want them to be proved right about my coming back. They both just went and sort of hid upstairs...I really felt they were avoiding me, which broke my heart because I was *SO* close to them before Christmas, and now it's as if Ive done something terrible by getting ill. I sort of waver between anger and absolute hurt and betrayal at their attitude, realy Everything's been going ok, it's good to see people. Yesterday after I posted about my community, I had another POTS attack here in the University Library where one of my former landlords works! I sat for ages with my hed between my knees again, but I just kept getting colder and colder. Then he appeared- I don't know where from and I was like "Say it, go on, say I told you so, I know you want to." But I didn't faint. Had I just allowed it to consume me, and fainted, I'd have felt better in about half an hour, but I was DETERMINED to prove him wrong! I had to sit for over TWO hours. Then the janitors came to drive me home to my house from here, and *HE* insisted on coming too....all thewhile, witing for me to drop. But every time I felt it coming, I just crouched down so it wouldn't. He even walked me into my new house and put the kettle on. then offered to bring me up a cup of tea to bed, but I refused, said I was going to do it myself. THe thing is, he was making me feel worse by being there because that made me MORE anxious! But atlast it began to lift and I felt really rpoud of myself...I stood up slowly and said "See? I told you ....I'm in control of it. I can't stop POTS, but I can stop collapsing! I don't get syncopal now, I get presyncopal!" THAT SHOWED HIM! HA! My mum was dead proud when I told her So...it's still happening, but atleast I am controlling it better! Hope everyone else is doing ok too. Don't forget to join the Livejournal community if you have an LJ account! Lots of Love P

It's at: http://www.livejournal.com/userinfo.bml?user=fainters_unite Feel free to join up! I hope nobody minds, but I posted links to here on it. If I can stop just one person having as harsh a time as I did in getting a diagnosis, then it will have been worth it! I feel quite accomplished, I must admit

The titles say it all. This *****. I feel like such a failure. I was so excited about going back...felt so triumphant and bold, but last night I started to feel really uneasy about it, as if something awful would happen. I went to my GP this morning and he said he didn't think I should travel today (8 hour train journey, changing twice with heavy bags)...so I'm still here, at home in a POTS hole. Have rebooked for Thursday, which makes me happy (yay, i can go back) but also scared (what if I'm ill again?) Have had a few rough episodes today where what feels like "electricity" passes across my field of vision and down my face (like tingling). Anyone else ever get this when stressed? It happened after a hideous and draining row with my mum I love my mum and I hate it when we row, but I just feel like she doesn't understand my anxieties I just want to run away somewhere but I can't even do that because I would bloody faint!

Hello everyone, and how are we all doing today? I have had 12 near misses today--vision going. head sore...but I'm not getting mad, i'm getting even! So...here are some quotes to help others of you feel better if you've had a bit of a rough time too... -The trouble is, if you don't risk anything, you risk even more. (Erica Jong)--isn't that great? I so agree with it! -Avoiding danger is no safer in the long run than outright exposure. The fearful are caught as often as the bold. (Helen Keller) and if anyone knew what they were talking about, it was Helen Keller! -To LIVE is so startling is leaves little time for anything else (Emily Dickinson)exactly! -The thing we call failure is not the falling down, but the staying down. (Mary Pickford) PARTICULARLY APT!!!!:-D -Mistakes are part of the duty one pays for a full life (Sophia Loren)..so I'm prepared to pay my dues... -You may be disappointed if you fail, but you are doomed if you don't try. (Beverley Sills) Hope this helps some of you feel a bit better! It's convinced me to go back to St Andrews and get on with my life as best I can...if I fail, I fail...but atleas t I'll have tried.

Hi Anna, there's so much I want to say to you ..I'm exactly the same age as you and am so similar to you in so many ways...isn't it strange how many young women in their twenties seem to populate these boards? I worry about exactly the same things as you. I don't know where to begin... I think the best thing I can do right now is tell you to email me, and to offer you these inspiring phrases: -The trouble is, if you don't risk anything, you risk even more. (Erica Jong)--isn't that great? I so agree with it! -Avoiding danger is no safer in the long run than outright exposure. The fearful are caught as often as the bold. (Helen Keller) and if anyone knew what they were talking about, it was Helen Keller! -To LIVE is so startling is leaves little time for anything else (Emily Dickinson)exactly! -The thing we call failure is not the falling down, but the staying down. (Mary Pickford) PARTICULARLY APT!!!!:-D -Mistakes are part of the duty one pays for a full life (Sophia Loren)..so I'm prepared to pay my dues... -You may be disappointed if you fail, but you are doomed if you don't try. (Beverley Sills) I'm going AGAINST the advice of everyone and going back to University, even though I'm still pretty plagued with symptoms. I figure that for my own sanity I have to keep going, and not just cave in with this. Keep going with your classes, anna! They might make you tired, but you can adjust! Make sure you take seats between classes, and keep a bottle of water with you whilst teaching..waters a big help to me and to other POTS sufferers in general. My neurologist in London has published a paper about how water can actually RAISE blood pressure...my silly other doctors always told me that drinking lowered bp...shows what they know, huh! If you want it badly enough, you can do it. just take painkillers when you ache, push your knees together when you feel yourself strating to dip. i'm sorry this post isn't very logical, but I've got a bad case of the brain fog today! Please feel free to email me any time...I hope you feel better soon.

THankyou Amy and Mighty Mouse! Sorry, feel quite silly now! Should have remembered the definition! Am one of the SPECIAL people, I guess

Any thoughts? Each time I get readings taken by regular machines when I have a 'tip', as I call it, my BP doesn't seem to change that much. Is POTS without a significant drop in BP still POTS? Is th epulse increase enough (I definitely have that)...or does that mean I have IST instead and need catheter ablations? Confuzzled folks, any help you can offer would be greatly appreciated

Hey hey, I'm sorry but there's only one woman for Colin, and that's ME!

5 questions, I'll go first 1) Name (real or screen, doesn't matter) 2) Favourite book 3) Favourite film 4) Things that make you happy 5) Something about you that no one here knows... 1) Persephone (screen), 2) So difficult to choose, I just did a degre in English! I love Medieval Literature, but modern books wise it would have to be Kanark by Alasadair Gray, or The Prime of Miss Jean Brodie by Muriel Spark 3)Bridget Jones, of course-- Colin Firth is divine! 4) Cuddles, rainbows, vegan food, friends, laughing, Little Britain and other similarly ridiculous comedy shows 5) I am left handed and Scottish!