hayley

hello,i wondered if any of you have had an intravenous urogram.It looks at the kidneys and bladder using dye.If so did the dye have any effect on you. thanks h x

hey,sorry i haven't posted in so long. I realised today that there is noone to turn to if im feeling terrible. I have a doctor in london but hes hard to get hold of and a G.P. who cant do anything and they have a new system at the doctors where you tell the secretary why you need to see a doctor then you go see a nurse first.Its strange and stupid.But if im feeling terrible who do i see .I dont know if my symptoms are all POTS or not.Its like a rollarcoaster and I would really like to get off now.Im not sure how much more of this i can take.Physio isnt working anymore.Ive lost a stone in weight.Vitamins that i was on dont work anymore and i feel terrible. h x

I wanted to be a textile and surface design but things didnt work out at college.It is still my dream though and i would like to do a part time course in embroidery in september.Im not sure if i could handle all the stress though so it would be nice to have my own little craft shop .But right now i dont think it will happen this year.So my life has had to stop for nearly two years but hopefully it will start going again soon.But im still young (20) so have plenty of time to do it.My dreams are the only thing that keeps me going so keep hold of them. h x

hey only me. Im back from hospital.I have discoved that when i have an attack when my hearts pounding and i feel dizzy my blood pressure actually goes high.but when i feel alright my blood pressure is normal.I always thought it went low but i guess not.And i dont always have attcks while standing i have them when lying down.Anyway i had a clonidine suppression test to test my hormones.It didnt really affect me that much my blood pressure went from 128 to 111 not sure about the bottom numbers.i felt very tired afterwards though.I get the results in about three weeks.its weird being home i havent quite settled in yet.Anyway just thought id update you.take care. h x

thinking of you. h x

Thankyou so much for your kind words.im very grateful. i will let you know how i get on. thanks. h x

good luck and stay positive. h x

i had the autonomic tests i november.I have elevated catechlomines so im having a clonidine test done and some other tests,not sure what they are yet though.thankyou for replying.take care. h x

i had the autonomic tests i november.I have elevated cateclomines so im having a clonidine test done and some other tests,not sure what they are yet though.thankyou for replying.take care. h x

guess what guess what.Well i got a call today saying that theres been a cancallation and i can come into hospital next week.I put my name down on the cancallation list ages ago ,but i didn't think there would be any but there was,otherwise i would have had to wait until june or july.Yippee im happy but also scared. thanks h x

Thankyou for replying.The pain feels as if it is under the ribs.Its worse if i drink fizzy drinks.thanks again. h x

hello hope everyones doing alright.Ive been getting pains in my right side where my ribs are for a long time.Its like stabbing pains and im also have terrible itching all over my body.Does anyone else have this,if so what do you do for it. h x

thanks for replying.I have just had my catechlomines checked and they were elevated.Not sure why yet though.I've got to have a clonidine suppression test. How is hyperadrenergic pots treated. h x

what tests can you have to find out if you have hyperadrenergic pots. h x

hey,does anyway find that there neck swells up and they feel really ill with it.i get this alot.I just wondered if anyone experienced this. h x

tearose your funny he he you make me laugh.

maybe i will tell you if you pay me he he thankyou for your reply.I have cut out chocolate,milk and mostly sugar i still have abit sometimes.I also eat every 3 hours and something just before bed because i used to get so moody if i didnt eat at certain times.Ive also been having physiotherapy.I have been doing gentle exercises and trying not to stay in bed to often.hope it helps.If not i will give you your money back

Hello everyone. Sorry i haven't been on for a while i have been getting myself back together.Anyway things are great at the moment. I have changed my diet and i saw a nutrionist who suggested i take vitamin b5.I have also been having physiotherapy which has helped so much.And i have been out of bed more often i only stay in it if i need a sleep in the afternoon.So by doing all of that i have had about 3 days last week without fainting and if i do faint its only about once a day.I have been going out without my support socks and my moods have drastically changed i am so much happier whereas before my moods were all over the place.I still have the symptoms but just not as bad i can cope with feeling ill as long as im upright.It was the fainting that i couldnt cope with.Anyway thankyou for all your support and take care h x

Hey blue girl, Im sorry you are having a rough time.Ive had POTS for about a year but not beeen treated for it yet.I got diagnosed twice once by another specialist and once by prof mathias.My POTS causes alot of problems mostly with fainting.Sometimes i cant even get out of bed because i feel so terrible.Can i ask why do you have a pacemaker? I also have EDS III. thanks HayleyX

Thankyou all again.One more question is it done while on a tilt table test.Because the catecholamines blood test was. Thankyou

Thanks for replying.I go into hospital for the test in about 4 to six months time as there is a waiting list.

hey, im from the uk,nice to meet you

The test is called a clonidine test has anyone had one before.

hey only me, i went to the doctor to see if he had my results from london.I got elevated catecholamines thats why i have to go back into hospital for another test.I cant remember what is called though.Just thought id update you. Thanks h x

hey calyso, i do eat alot of sugar but if i cut it out what and i going to eat .Sugar is in everything.