hayley

I got diagnosed with POTS in april 2004.I got put on beta blockers but they made me worse so i came of them.I than saw a POTS specialist in august who wanted me to go into hospital for tests.I went in hospital in november 2004 and im still waiting the results the secretary wont give me them.I had a letter to say ive got to go back into hospital.the waiting list is six months not sure why noones telling me anything.so im waiting as usual.

Il try some of the things mentioned thankyou

hayleyX

Thankyou everyone for your replys.Your all so kind.I keep forgetting what im going to say.Oh yeah i remember, maybe it is POTS i dont know its just getting worse i havent been treated for POTS yet ive had it for over a year.I thought symptoms were supposed to get better by now not worse most of the time i feel like im dieing.Its soo frustrating.

i havent been checked for potassium or diabetes theres alot of diabetes in my family.I just find it hard going to the doctor because i dont want them to think i actually like going to the doctors if that makes sense but im getting desperate now i cant live like this anymore.

My lifes been on hold for a year.im tired again um um oh yeah i keep forgetting. If i cut i sugar there isnt really much else to eat i like chocolate maybe i eat to much chocolate ok im rambling on now anyway thanks so much.oh yeah its not easy getting my doctor to do tests.

thanx hayley x

Thankyou everyone for your replys.Your all so kind.I keep forgetting what im going to say.Oh yeah i remember, maybe it is POTS i dont know its just getting worse i havent been treated for POTS yet ive had it for over a year.I thought symptoms were supposed to get better by now not worse most of the time i feel like im dieing.Its soo frustrating.

i havent been checked for potassium or diabetes theres alot of diabetes in my family.I just find it hard going to the doctor because i dont want them to think i actually like going to the doctors if that makes sense but im getting desperate now i cant live like this anymore.

My lifes been on hold for a year.im tired again um um oh yeah i keep forgetting. If i cut i sugar there isnt really much else to eat i like chocolate maybe i eat to much chocolate ok im rambling on now anyway thanks so much.oh yeah its not easy getting my doctor to do tests.

thanx hayley x

Hello everyone. Im here for advice.Well im having problems at eating time.I have to eat at certain times because if i dont i feel sick, headachy shaky and dizzy basically i feel terrible.It seems now that when i eat it takes the symptoms away for about an hour then they come back. im waking up at 11.00pm feeling terrible and then again a 7.00am feeling shaky it feels like i have to eat all the time i cant keep eating like that and im loosing weight.Its getting worse im fed up of feeling ill all the time .its like when you havent eaten for ages and you feel terrible but i get it all the time.I dont know what to do.I have a doctors appointment next week as he is trying to figure out why i pee more than usual, do i bring up up or just live with it.Im exhausted aswell and fed up as you may have guessed.oh and im having extra heartbeats ,i usually get about one a day, i had 13 in 2 hours yesterday not sure why.

sorry for moaning like always

thanks hx

Congratulations x

THANKYOU for all your replys ,very grateful

it only lasts about a second but its so painful they only started in the last couple of days.it stated in my legs first about a month ago and now in my feet.

hey everyone

i keep getting shooting pains in my feet and legs like electric shocks.

i just wondered if anyone else had these .

thanks h x

hey

I just wanted to say thankyou for this forum it has been so good for me and many others to just let off steam or have a laugh.

so thankyou everyone

hx

thankyou everyone for your replys.i havent been prescribed anything for the pain yet.ive got to see a pysiotherapist sometime not sure how as im still fainting everyday.i cant live like this anymore. im usually positive. im just having a bad day.im still waiting for the results from my tests in london.its been nearly two months.anyway thankyou again take care.

hayley

hey everyone. ive just been told i have EDs type 3. If i have children will they have it to because i dont want them to go through all the joint pain that i have.

thanks

hayleyx

hey again i used to live in cambridgeshire how old are you? how long have you had pots

hey im from the uk aswell.where are you from?.take care

hayleyx

hey there! i am also from the uk which part are you from? i have pots but like you its been a long and tough journey. Before i was diagnosed i saw six pychiratrists. i was in hospital for six weeks for my symptoms i was so ill.I faint between 5 and 10 times everyday and have done for the past year.i am still going through the tough journey to try and get treated for it. Ive just come out of hospital in london as they wanted to find a cause for my pots i will get the results next year.

Before i was diagnosed with pots i suffered from depression and was on many different antidepressents. That has gone against me when i see a doctor because they would read my notes and send me to a phychiratrist many times ive been so low ive thought there is no point anymore.I convinced myself for a long time that maybe i was crazy because the doctors have said i was it totally knocked my confidence ,i still am frightened of doctors and ive lost count of the number of times ive cryed in the doctors office.

But then i started to listen to my body and thought 'hang on a minute there is something wrong', and i found the strength to carry on because i knew that i will prove everyone wrong and that would make me so happy.i did eventually prove everyone wrong.

These things are ment to try us. ive learnt so much from being ill and found that i am such a strong person.I still have to stay strong because its not over for me yet i still battle with doctors who no nothing about it.But i have one neurologist who took me seriously am im so grateful.

So id just like to say you will get through this ,believe in yourself even if others dont and keep on fighting.

take care

h x

hey everyone hope you are all ok.i wanted to ask two questions.

1. does diet affect pots.

2. does anyone find that they cant sit in an upright postition.i find that if a chair has a straight back i tend to faint more and im so uncomfortable.and also my heart rate goes all over the place. im ok sitting a chair with no back or leaning forwards.i just wondered if any of you experienced this.

hayley x

i get most of those symptoms plus differnt ones.ive recently developed a blind spot in my right eye and its like a curtain covering half my eye.but ive had an mri of my head so maybe its just pots.im not on medications

sorry i didnt tell you about hospital.well i had two tilt table tests an eeg and a 24 hour blood pressure.i also had an mri of my head which came back normal.i have to wait for the results.more waiting and then hopefully i can

get the right treatment.

thanks for replying im not on medication .but i find that i have weeks where am sort of functionable then weeks where im bedridden and then functionable again.i wondered wondered if others had the same when they werent on medication.

oh and englands not all that great its always raining.

hi everyone.i had a nice time in london everyone was lovely its the first nice experience ive had with doctors.but i still dont like hospitals

i just wanted to ask does anyone have some weeks where they are sort of functionable then go to completetly bedridden and not being able to do things for weeks and then go back to being a bit better again

im actually seeing a doctor who specialises in pots hes seen me before.but i want to be prepared with my list.

thanks for rpelying and your kind words.i have another question.if the doctors ask about my symptoms im going to write them all down and hand them the piece of paper do you think thats the best way of doing it?

hi everyone one.please send me good luck as im going into hospital on monday for a week to see if theres a cause for my pots.im terrified but hopefully the end is near.anyway take care everyone.

hayley

welcome new person! and i hope everthing gets sorted out for you.

take care.

hayley

im at the stage you are at the moment but ive only been ill for a year and a half .i faint between 5 and 10 times a day everyday but the one thing that gets me through is that i have so many dreams and so many things that i want to do.you probably have aswell so hold on to those dreams never give up i know its so hard but hopefully you will get to fulfil your dreams oneday good luck and take care.

hayley

thanks for all your replys.

calypso that was my point exactly about the whole lying down vs standing up thing.i just thought it might show the heart working harder if you stand up.but i guess itll pick up the same thing as lying down.thanks again for your replys