persephone

she sounds a bit new age and dippy to me! The sealed envelope option might be wise- but how do you know it will STAY sealed? I'd get chatting to some class-mates, and make sure that if anything else happens in their presence, they'd be prepared to speak up as witnesses. If anyone tried to offer my crappy advice, I just say "Thanks, it may be worth thnking about, but my condition is actually incurable. If you would like to find out more about it, perhaps you could readx,y,z and look up potsplace.com?" Maybe you should print some stuff off of the site about symptoms etc and tell her the suggestions she made resulted in you leaving "your comfort zone!" because you know they wouldn't work, and because you know that your condition is more complex than most medics understand, let alone an academic. Comfort zone- how unprofessional to speak to a student in this way! Maybe it's the American way, but in the UK this sort of behaviour wouldn't be acceptable in a university setting.

Hi! I spent 5 years doing English literature at St Andrews in Scotland, but you know all that anyway from our earlier chats. It's not easy to study with POTS as a constant 'companion', but if you want it badly enough, you will succeed! I typed my last essay whilst bed ridden in a cardia care unit- my parents brought my lap top in. I was determined that this piece of work would not stop me grqaduating, and I got a first- an 18/20 for it! Good luck, and I'm dead chuffed you applied- I rememberd you said you were thinking about it. Keep us all posted on hoew it goes;)

Hi everyone. I thought I'd share some good news. So, I got a referral to a cardio who 'does' VVS at the local hospital (sister of the one I normally wind up in ,where the guy told me shut up and put up ) Anyway, I got a call on Tuesday saying can you come in tomorrow (almost unheard of in the UK--normally you wait MONTHS) So I get there, and the guy tells me..... he has two other pots patients! he knows what it is! and we sit for an hour! he doesn't rush me, or my folks. he asks me to stand up, and I go funny--and he knows what to do--he instinctively grabs my wrist, feels the pulse and says "yuh- huh, I can feel it too!" What a breath of fresh air... He called again yesterday and I had to go in today for a 72 hour holter monitor which we'll do every weekend til I go away... And if my pulse IS slow enough after the tachy episodes, he will pace me to try and sort out the brady. Although we know there is no cure for POTS- something he made clear from the start. He can't understand why I wasn't referred to him earlier- if I had been, we could've tried drugs that might help But...the good news is, he actually seems to give a TOSS. Woot! Who knows what will happen before Oxford now- it's only 3 weeks away...but we live in hope love to everyone P x x

I've been told again and again that it at least lessens in severity as we get older--which leads me to the conclusion that it MUST be hormone related- especially as most sufferers are female and of menstruating age (15-50). It doesn't make me feel any better when doctors say "we're sure it will go away....one day!"

don't give up. Nevre accept the unacceptable! P x x

Awww man, I DREAM of the day when a place like this will openin the UK

I can't comment on murmurs and stuff, but I had growing pains in my legs for as long as I could remember and I still do get them- I'm 24 this month! I've since found ut that I actually have Ehlers Danlos type 3 (hypermobility type) and that this could cause th epain I experience. I just wonder if hypermobility could have a bearing on it- esp as it is so closely linked to POTS now... maybe worth mentioning to a Dr somewhere? Try not to panic too much....we are all here for you! P x

EM is right...I never noticed the secondary thing. And EM is also right about soma- it's from the classical Greek meaning body. Thus psycho-SOMAtic- i.e- mind causes symptoms in the body etc.

In the UK doctors can get a bit twitchy about low blood pressuyre if the systolic (top number) is below 100. It varies from person to person, and also depends on how doctors view it where you are. Here, low blood pressure is rarely treated and is more often seen as a good thing- the day after I broke my foot fainting due to hypotension, a cardiologist told me to cnsider myself lucky to have low blood pressure! Yes, what a SPECIAL doctor HE was Anyway, I don't have the answers- I'm not a medic- but if that is much lower than you are usually, maybe that might explain the dizziness/faintness? Get it checked by the gp pronto.. Stay well

how can it be somatization if your heart rate doubled? that's odd

good thinking, batman!

Are you actually in the UK? I assumed you were in the states because you'd been to Vanderbilt? Edit: hang on, just had a look at your profile...so you're a JYA at Lancaster! You'll have to come to the POTS meet I'm trying to organise down in Bristol/London. also- have you declared the pots to the univ? if so, what have they done to help?

Lancaster? where's that? You can't mean Lancaster ENGLAND, surely? I'm prolly just being dim again!

I recently got a disability parking badge so I can use disability parking and I have to say that now if I see someone parking who doesn't have a badge and is taking the mick, I get absolutely ENRAGED. This is probably BAD--liable to set my stress levels off!!! but as I'm always saying, it's the PRINCIPLE of the thing... as for ignorant people who look at you like a loon/say awful things, just smile and do scary WIDE OPEN EYES before shouting swear words as if you have tourretts!

Forgot to ask--Megan, have you thought about yeast? that was one of my most potent intolerances--and it's quite common in women- causes funny periods etc. I cut yeast out for over a year and noticed a big difference.

Hurrah! another vegan!!! Fancy exhanging recipes anytime? Well, i don't know that wheat intolerance is caused by pots in my case, but i became intolerant after a course of antibiotics following a virus, so my theory is that it must have killed the glutase and lactase enzymes in my gut. And I also reaed that people with POTS are more likely to have difficulty in digesting these things...more blood rushing to the tummy etc. It all seemed to fit together in my case. Although it doesn't help my pots to cut out wheat, it certainly stops me bleeding (yes, BLEEDING) and bloating. The pain I had was so bad before I sussed the wheat intolerance that I used to get rushed to hospital with suspected appendicitis and have to have morphine My biopsy for Coeliacs showed up clear, but my GP said I show all the symptoms, biopsy aside, so she assumed it was in the early stages, as oin too early to show up on a biopsy perhaps...I wonder if POTS people are more likely to be Coeliacs? I think being wheet free vegan is a generally healthier way to live- no processed stuff, no E numbers etc...god knows what I would be like if I ate regular stuff like normal people! probably even worse!!! good to hear from you though, Megan! Hurrah for POTSy vegans! :-D p.s: meals on wheels just owuldn't happen for someone my age. and I should point out that last time I was in hospital the vegan meal sent from the kitchen for me was BEEF and GRAVY--yup, for real. That is typical British understanding of diet for you!!!!

Awww! That's so cool, a Dad getting involved! My Dad worried about me so much, I hate upsetting him. I've only ever wanted him to be proud of me, and I know that he is, but I hate that it causes him stress when I'm ill. anyway, welcome!

Thanks guys- of course, I don't remember if I ever told you that the POTS has left me unable to tolerate dairy and wheat...and I'm a vegetarian! I may as well stock up on rice krispies, eh? Ho hum... I mean I wouldn't mind, but I'm not even particularly thin on this diet- still weight in at 145lb!

Aha- that sounds like lucozade. Thanks Karyn! I realised what you say about taking things for granted just reading the replies on this thread--I am being offered no treatment exept 1.25mg bi daily and midodrine as and when I need it. Neither of these options work for me But nobody cares...and I'm meant to start at Oxford University four weeks today...

Menstrual cycle- the first syncope I ever had was aged 12, and exactly 7 days before I began my periods. I'm also at my worst in the run up to, and inthe first few days of, a period. Flu and viruses really set my ANS off though- to the extent that I've ended up with a wheelchair for the off days My cardio acknowledges that there is a definite hormonla link with palpitations and fainting generally.... all v interesting. Anyone know if any studies have been done?

quick q: what's gatorade?

Hurrah--it's not just me! but at the same time I'm sorry you guys are suffering too like this. I don't know WHAT will happen if I have classes between 4-6 at Oxford, and because they're forcing me into self catered acommodation, I'm going to have to cook aswell. what aJOKE_ there's no way I could manage that the way I've been lately:( I tried to talk to someone again there yesterday and they said "Maybe you ought to consider deferring for a year"--but there are no guarantees I'll be any better next year. And they wouldn't say that to someone who only had one arm to cook with or some other visible disability, would they? They'd have to help that student. Why is everyone making it so difficult! ARGH!

Yeah- that's like me- second wind after 7. how ODD!

It just occurred to me that I should ask, esp as I read on anotgher thread that many POTS people feel better later in the day cos of hydration. It's definitely odd- I get SO tired and achy by almost always 4pm ish. It's just odd! If I'm going to have to lie down in the day at any point, it will invariably be at this time. Anyone else get this? Anyone know WHY this could be? Also--do you guys find on bad days your walking goes really funny? As if you're drunk? I can't walk in a straight line when I'm feeling poorly, and it's like my feet don't bend- they sort of plod or flop on the ground, and my mum always knows when I'm feeling bad cos she can hear it in my footsteps cos of this heaviness.

ffs! ARGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH HHHHHHHHHHHHHHHHH! why are people SO stupid?!?!?!?! Good that you're angry- keep FIGHTING---don't accept it lying down. It's NOt good enough. My motto these days is NEVER ACCEPT THE UNACCEPTABLE. Make sure YOU don't! Why dont we organise a protest- I'm very good at shouting down megaphones- you'd have to put the megaphone next to the telephone though as I'm not up to travelling! Seriously though--that is an outrage--$6k? Tell them to shove it where monkeys shove their nuts. and keep pushing. thinking of you and sending some POTSy love P x x