persephone

I'd say to **** with it and get on thew ride myself...in fact I did this a couple of weeks ago at a fun fair...it was GREAT! But MAN I paid the price for it afterwards..I didn't feel right for days Gotta be your choice

I'm still in shock- I was in London some weeks ago at the hospita seeing Professor Mathias about my POTS- and the hospital is right next to Russell Square, one of the bomb sites I just can't believe it= the tube station I got off at has been blown up! It's just horrible, I can't believe it.

Ha ha, here's one to make you laugh- my mother says its ME! I hhave the symptoms....errrr yeah I'll just HIDE! but then, maybe she's saying that cos she envies me. I know I'm special and should only associate with other special people!

hiya I'll be doing Medieval English. This is the course: http://www.english.ox.ac.uk/graduate/MSTstrands/650-1550.htm My special options are hopefully going to be Older Scots (Ox has really awesome manuscripts) and some Old English (Anglo Saxon) Religious poetry. Should be pretty funky! In the process of doing my reading now for October. Lots to get through!

very amusing!

Hello everyone, I just felt like telling you all how much I value your input and support, and how much I appreciate being able to come here and chat with people who can actually empathise. It's so good to know I'm not alone in a POTShole. And the way you all support me when things are fabulous (like when I graduated/ got into Oxford etc etc) and similarly when they're not-(look at the way my grandfather reacted to Florinef!)--it all means so much. You are all awesome. Thank you for making me welcome here and for giving me my life back- without you guys I never would have gotten to Prof Mathias and been diagnosed. I love coming here and speaking with everyone- I really feel part of this community and it brightens my day to chat with you all Love P x

Hi BallroomA! You're like me- young and a student and you too waited about a decade for the right answers! I've been on these boards for just over 6 months now and I see the same story repeating over and over every time a new person comes and says hi. It makes me sad that so many people have been on the depressing journey that I had to make. But I feel glad that we can empathise and understand each other here. I'm glad you found us. I'd be lost without my friends on the forum here- people I know in real life as opposed to my cyber one just don't know how it feels at all. So....thanks for popping by, and hope to see you back here posting often

you've got it well sussed, Katherine! It really riles me how we know more than super rich doctors on some things they supposedly specialise in!

A cardiologist here tried to tell me my tachycardia was caused by benadryl which I'd been taking for 5 days when I saw him. I was annoyed he dismissed my 11 year history of faints and palpitations, but he was definitely right when he said that the benadryl made things worse. I know other people on here say Benadryl is ok for them- which leads me to wonder if there is some kind of discrepancy between British and Us suppliers/ingredients/strengths? I take cetirizine every day- supermarket own brand, costs ?3 a month. The only thing that works and doesn't do awful things to my pulse and bp.

I don't get symptoms to the same degree all the time- some weeks I can be ok. Others, horrific. I just wondered how many other people are like me. Look at my grad week only 10 days ago--I felt and looked amazingly well. But now--well, the number of times I've lost my vision today is in double figures. I know overdoing it has cost me dearly, but I don't care so much--it was worth it. It got me thinking- do Doctors expect us to collapse/get faint every time we stand? Is that why maybe so many dismiss us as nuts? because they think it can't wax and wane the way that it does? what do you guys think?

Hi there! Allow me to introduce myself- I'm Persephone and I'm 23. I'm in the UK and I'm starting at Oxford in the Autumn (fall, in the states, I think). I have POTS- I got diagnosed in January 05 but I've had it atleast since Jan 1994!!! I also have Neurocardiogenic Syncope and Ehlers Danlos. I'm sorry you're also at the end of a long, long road of misdiagnosis. At least you know now that you have POTS- and that this probably won't kill you. For me, finding out I wasn't nuts and that I had a condition which other people, too, probably had was just such a relief! Although at times I get so frustrated because ther is no magic cure. But atleast I can try different things and chat to my pals here on POTSplace. Everyone here is so friendly and understanding, we're bound to have you feeling better soon! What surgery did you have done to your heart? Lots of love and welcome hugs, P x x

So sorry, wish I could say or do something to help. Hugs.

I know what you mean, Ariella- I just try to live with it and not make a fuss, in fct I never usually even tell people how sore it is. But I just wanted to see how many other folks got it and see if anyone could hypothesise about why it could be happening, as no medic has ever been able to tell me. At the hospital in London, where all the POTS experts are supposed to be, a registrar told me I was anxious! That was ultra disappointing, but if other people with POTS are experiencing the same pain, then I know I'm not imagining it. So thanks for the replies, guys!

Julie, I've felt desperate like this too. POTS, NCS and EDS can leave me utterly demented. But please remember you are NOT alone. You are loved- you are a valued member of your family--you have a husband who wants to spend the rest of his life with you- AND you are a valued member of our community,too. Hugs.

Anyone else evre get this? My ECGs are always fine. I've been meaning to ask you about it for ages- right now it's as if my breast bone has clicked out of place- so SORE! Could this be EDS related? Why does it only happen on days when I'm POTSy? any ideas? One Dr thought it could be a sharp change in heart rate causing chest wall pain. Others tell me it's in my head etc etc...but why does it happen when I'm thinking about other stuff then? Grrr. Any answwers/opinions gratefully received!

I went to the Doc yesterday because I felt much worse as the day went on- she didn't even take my bp and pulse standing; she just said that because I was sitting and it was ok (it nearly always is when I SIT!!!) then I was ok. Gee- great! But she did prescribe antibiotics. Every time I get a virus this happens- I'm supposed to take antibiotics as soon as I get a virus, right? Every single time I go over to the Docs, they say "No, antibiotics won't help this...." and then 2 or 3 days later I get really, really ill. then when I go back they say "Have some antibiotics." don't these peopole understand that 2 or 3 days makes all trhe difference? Grrrrr

Hi everyone, this happened to me last night and was really odd. I woked up feeling groggy and then passed right out- I had that awful buzzing in my ears and the sense of heaviness/ being tipped upside down. I tried to call out to my mum but I couldn't move. I felt really scared, as if something awful would happen. SO scary! I wonder if I could have had my bed at too steep an incline (I tried to increase it so I would feel better today...yesterday was not good). In the end I had to go to bed with my mum so she could keep an eye on me. I was slurring my words and heavy on one side. Anyone else ever get this- or understand wha tmight've caused this? I odn't think it could be POTSy- I wasn't upright at the time. I wonder if it was a variant of VVS but then how likely is that to happen sitting down or lying down? Maybe you could offer some opinions? If it's relevant, I do have a virus at th emoment and am a bit achy--but no fever/temp, and Dr says I'm ok...

It's so nice to be able to share cheerful stuff with you guys when it happens- god knows we have enough gloomy things to last us a life time! It was just such a beautiful day. I still feel so shocked that it happened, and that I managed to go across the stage with no stick! In fact I went all day with no stick! And ditto for the ball, too! hehehe

Thanks everyone...I sent Katharine some pics for the website, but if anyone knows of a way to post some here I would happily do so. for now I have the web addresses of my pictures which SHOULD take you to them...there are only a few that we took with our digital camera...let me know if you can see em! Here are the www addresses as I use photobucket....dunno if this will work, you all know how rubbish I am with technology! http://i3.photobucket.com/albums/y66/kyliemm/e9498ca0.jpg http://i3.photobucket.com/albums/y66/kylie...ylieseamus2.jpg http://i3.photobucket.com/albums/y66/kylie...ylieseamus1.jpg http://i3.photobucket.com/albums/y66/kyliemm/ch2.jpg http://i3.photobucket.com/albums/y66/kyliemm/barbara.jpg

I had a few incidents of one side numbness and was told speculatively that it was familial hemiplegic migraine- not part of pots but possibly complicated by it. As yet I still have no results from London, where this hypothesis was made, so I can't tell you any more about it, unfortunately! Hope you get some answers and meds to fix it tho!

Hi guys, I'm fine! see my other post! I've got my old bounce back--last week was the best of my entire life!

Hello hello HELLOOOOOOO! Sorry I've been out of the loop for a bit but that is because I was in St Andrews having the time of my life!!! Ok, where to begin.....Tuesday itself was the big day of my ceremony, and it was beautiful- warm and sunny, and I was in my black gown all day --I was so excited! My folks and I had a family portrait done in the morning and then my mum said "I just have to pick something up from the shop"--then she and Dad walk me into this art gallery and it turns out they bought me this beautiful painting of St Andrews that I had admired so much two days earlier. I had NO idea they would do this, and when the penny finally dropped, I started to cry--I couldn't speak--and even the gallery proprieter started to well up! it was just such a beautiful and kind thing to do. The ceremony was AWESOME! I was so nervous I would fall- I had to kneel and then stand up again, but it was OK! I managed FINE At St Andrews you get your degree conferred by being bopped on the head with old fabric which formed part of John Knox's breeches! My surrogate mother of a tutor Barbara winked at me just before I went across the stage and was SO proud! My Mum and Dad had the best seats in the house too, so they got to see everything. Seamus Heaney got an honorary degree too and that was so perfect- I am a huge fan of his poetry and to be gowned up with him was such a gift! He came to the garden party afterwards, and you won't believe what happened! One of my tutors came over (Douglas Dunn, another famous poet as it happens) and I gave him a hiug, telling how pleased I was to be graduating etc etc, then I said "I brought some of Seamus' books, do you think he would maybe like to sign them?" There I was, expecting to have to barge up to him in conversation and cheesily ask Seamus himself. But Douglas Dunn smiled and said "Come with me--" and took me by the arm to Seamus. I was presented to Seamus by a Professor! Douglas said "This young lady is one of our top graduates, with a sparkling first class honours degree in spite of serious medical problems. She's a very able young lady. Seamus, you'll sign her books, of course, won't you?" And Seamus turns, smiles at me, HUGS me and says "Why OF COURSE!" ahhhhhh! Barbara came too, and I just gave her such a HUGE hug--she was really delighted that I finished so well, and she's always helped me in any way she can. It was very emotional- I kept saying "I can't believe I'm here, this day nearly never happened..." And she beamed at me and replied "Of course this day was coming--you are a very determined young lady." I spoke to the head of school too, and told him how proud I had felt to beling to St Andrews and he said he'd like me back- I told him that would be my dream come true! It's nice to part on good terms and for my last memories to be positive Especially after so much has happened! Did any of you see Prince William's graduation on tv on Thursday? He was 2 days after me and I saw him come out too. He looked very handsome! If any of you did see it, I hope you were thinking of me! I was bopped on the head just like he was to get the degree. I got interviewed by Sky News and apparently I was shown saying "He was no prince here, just another ordinary student." My Mum is quoted in The Times, too, saying what a nice young man he seemed. It's true though- I used to see him around campus a lot and he was always civil. The ball was the best--I danced til 3am. I don't know how I managed it but I did! It was an awesome night, in the main St Salvator's quad. I kept seeing people I knew. I ceilidhed!I didn't think I would ever manage to ceilidh again after my POTS got bad- but I did! It left me a bit out of puff, but I soon recovered! There was a CHOCOLATE FOUNTAIN! Ahhhhh! I saw William there too, it was late and I was tipsy-it must've been about 2.30 am, and I said to him as we were both queuing at the bar "Look, I'm tipsy and I'm going to say this just once-" he looked at me and smiled and I said "Your mum would have been so proud of you this week." He took my arm and said "Thanks, that was really sweet of you." I didn't want the night to end at 3, so my friend Dave lent me his dinner jacket (I just had my dress and stole- it was pretty chilly!) and we went down to the beach with lots of other people. Then we walked along the sand as the sun came up. We walked all the way back up the hill to the caravan and I didn't get in til almost 5. I was still a bit merry even then! My mum and dad decided that that would be the time to leave St andrews for the long drive home (Bristol's about 9 hours away)...so I had virtually no sleep yesterday. Ths week made me feel like I have a chance to get a life back again! To be somewhere where I matter-where I can't walk down the street without seeing someone I know- my GOD it was SO refreshing! I don't know if you guys find that loneliness is the killer with POTS if it makes you isolated. But in St Andrews everything and everyone is with in walking distance. I'm going to miss that place. It's breaking my heart to have left. But I'm keeping myself going by thinking that I'll go back there, either for the doctorate or for a position if it pops up. So....that's my week. and why I've not been about! I have returned now though, so I shall soon be chipping in again on all the gossip and conversation...

**Falling into you- Celine Dion **I'm still standing- Elton John (if only) **dizzy- I'm so dizzy my head is spinning, like a whirlpool it never ends!--I can't remember who sang that, but what I do remember is the first time I fainted in high school, my French mistress sang it at me to cheer me up! hehehehe Will think of more later- my head's too fuzzy just now.

Thanks guys. Your suggestions are all really sweet, but sadly not really so relevant to British funding. I owe ?12,700 in loans from my first degree; undergrad students can take out government loans which are paid back at low interest rates. For postgraduate studies, there is no such option. you either get a scholarship from the university itself, a research council (I'm still waiting to hear from the British Academy but hold out VERY little hope) or you get rich. There's a carerr development loan of up to ?8,000 which would still leave me ?7,000 short, but it only covres vocational subjects, of which English Lit is not one. So there really is no other alternative. My parents paid for me all the way through school, helped me all the way through college, and I just can't bear to let them try and make sacrifices for me again. Enough's enough. What really upsets me is that I explained on the application I've been too ill to work so I can't even work to save in order to fund myself. I *had* to gte a scholarship or I wouldn't be able to go. Yet I still didn't get lucky. I think I'm just not meant to go. That's how it feels anyway. There's just too much going on right now for me to think aobut the future. I'm just thinking about graduation. I got my hair done today- it's black, post box red, and PURPLE. I look like Sharon Osbourne! And my mum is red and chestnut- We're going to look AWESOMES!!

Well, I had my letter about my scholarship today. Instead of being awarded enough to be able to go, I've been offered less than a quarter of what I have to prove I can pay. I really hoped I was going to get it. Such strong grades and references! I'm so dissapointed! After the week I've had with my grandfather being so ill too...I just reached the end of my tether today. Started crying, and five hours later I still couldn't stop. It wasn't just the scholarship I was crying about though, it was EVERYTHING. i've pushed ahead relentlessly, refused to give in and through all the dark times the one thing that's kept me going is my place at Oxford. In spite of everything, i've kept thinking "It's ok, I've got Oxford." Now I don't really have it at all. so what's the alternative? What future do I have? Every thing is SO uncertain. Ended up going to the GP, after my mum rang her and told her I was really distressed. She's started me on a new SSRI which might also help the POTS- it's called Citalopram. I hope it will help my mood too- I've just been in a state of absolute shock for the last 6 months I think, after what POTS has done to me, and the way I've been treated by different medics. I've carried it around, and pushed so hard to achieve and to carry on inspite of everything. But every time I do anything I have to push and fight and I am just SO tired of it. I've had to work five times as hard as all my healthy friends at University to get as far as they have. and to get my offer from Oxford but be unable to get funding is just the pits. Haven't I been through enough?! I don't feel like graduating next week. I feel like disappearing. I'm worried now that if depression is mentioned in my medical notes, people will jump on the bandwagon and try to say that's the cause of my physical condition. I know it makes me worse but it certainly isn't the cause of all that's happened. Anyone else tried the Citalopram and found it helpful? anyone got any advice on how other than robbing a bank, I can find the missing ?13,000 for my course at Oxford? It's one thing after another, I can't take much more