hayley

hey everyone hope your doing ok.im having an echocardiogram on friday.i just wanted to know does it matter if you sit down or stand up a little with it.because surely they would see more when standing but i cant stand very long.anyway be grateful for your reponses.take care everyone.hayley.

thinking of you and your husband take care. hayley

hey thanks for asking how we are.right now im waiting to go into hospital at the end of november to see if there is a cause for my pots.half of me is excited to be getting treated for my pots but the other half is very scared. apart from that im ok.how are you?

i get that especially neck pain when i tilt my head back i pass out.i havent had any investigations only a tilt table test so i cant tell u if its normal or not.

thankyou for replying .i havent had a back injury i had a lumber puncture a year ago and since then theres been alot of pain and pressure on my spine like something is pushing on it it keeps me awake all night.thankyou again its nice to hear some kind words.

hey everyone ive just come out of hospital had new symptoms didnt no if they were related to pots or not.anyway ive been sent home still then same.i thought that as id been diagnosed with pots they would take me seriously but they didint again.i didnt think id have to battle with them again.theres one thing thats changed.i had my bp checked frome lying to standing and it used to go down but it went from about 112 to 154 dont no the bottom numbers but i dont no why its changed.i also hurt my wrist ive torn the ligaments in it and i did it in hospital so i came out with something extra wrong.my backs causing so much agony i cry with pain. i tried so hard to get a scan of it i even passed out when my neck was tilted but one doctor said he do it then i saw another and he said nothing will show up making out i was crazy and sent me home. they were questioning ms becuase of all my weakness and new symptoms and shocks down my back but that went out the window aswell . so i was in a weekhaving nothing done.but im going in hospital in november anyway to have loads of tests under a specialist who knows what he doing instead of giving painkillers that always seems to be there answer to everyting anyway just bit down,.

thakyou again for replying.i went to the doctor yesterday and was put on anti inflammatory medication for my muscle spasms as i have them all day everyday.so hopefully they will disappear

i often have dreams about fainting aswell.it would be nice to escape fainting when im asleep because i faint all day but i comes and haunts me in my sleep aswell.i just cant win.

thanx for replying i have been getting alot of earaches and headaches lately

hey everyone hope you are all ok.im been feeling very ill the past week.all my pots symptoms seem to have got worse.i have a new symptom thats worrying me abit. my head keeps jerking it will just kind of swing back and my arm will jerk i think i might be muscle spasms in my neck and back.my balance and memory have also got alot worse in the past week since ive felt bad. does anyone else experince this.it like i have no control over my movements.

thanx alot again for all your replys youve really cheered me up. dear julia59 how did u find out about problems with you spine did u have symptoms? does anyone know what an autonomic function test is or what it involves? please let me no if you do.thanx h

ive had some fantastic news.well my dad kept ringing up the hospital and ive been put on the emercency list so i should be in hospital in november now instead of march time.they also said if there is a cancellation then theyll let me no so it could be sooner.yipee im so happy.oh and another thing they want to do automonic function testing does anyone no what this involves?

thankyou so much for all ur support im so grateful.im having a bad day today i just keep crying plus i got turned down for disability benefits and i really needed that money.i hurt my shoulder by fainting and falling down the stairs.im on beta blockers at the moment but the cardiologist has upped the dose but there just not helping.the other doctor who specialises in pots hant given me anything hes waiting for me to have the tests. i do wear the compression socks which help abit i try to drink lots of water but i just end up peeing it out every 10 minutes.anyway thankyou again.

i just thought id post and have a moan.Well i posted a little while ago because i was going in hospital some time for 5 days of tests to see if there is a cause for my pots.anyway i been told theres a five to six month waiting listed. im absolutely gutted.my dad rang up and spoke to the doctor whos trying to bring it forward so hopefully itll be sooner.i pass out 10 times a day everyday and have been for the past 10 months.im pratically bedridden at the moment seem to have got worse.i keep loosing the use of my leg and have a lot of pressure on my back and neck and have lost weight lately.my mum has to wash me and help me get dressed.theres so many things i want to do. Sorry im just really down at the moment im only 20 and i just want to dowhat my friends are doing.thanks for letting me moan .And my shoulder still hurts because i dislocated my collar bone about three weeks ago ive got to see a phsio tomorrow about it. i actually feel guilty for posting because im sure some of you are far worse off than me.Anyway thankyou this forum it has been a great help to me.

hey ,sorry for asking but what does a sleep study look out for because ive been reading the posts and it seems alot of people have had one and im wondering why. please be kind enough to answer my question.

i dislocated my collarbone very painful but the doctors at the hospital were very nice to me.they even asked if i wanted my pots investigating but its already being investigated .they never asked that before how strange ha ha youve got to laugh or youll cry

no i live in england so have all medical treatment on the national health service but its a pain because nothing gets done and the waiting lists are so long.if i had thousands of pounds id go privately for treatment.sadly though i dont so im hoping that i can go into hospital sometime this year.dont get me wrong its not like i wana go in but i need to get my life back and get back to work havent been for nine months or had a life. thanx for replying.

really stupid question what does florinef do?

very angry today i went to see my cardiologist this morning he drives me mad because he originally told me i was crazy then i had a tilt table test and i was diagnosed with pots.anyway hes so nice with me now which makes me angry and hes never seen anyone with pots before.i went to see a doctor who specialises in pots in august and he said ive got a joint hymobility syndrome .anyway he wants me in hospital for 5 days for tests to find if there is a cause for my pots and my cardiologist wants me in aswell because i faint between 5 and 10 times a day.so i rang up the hospital as i havent heard anything its been six weeks.they said that they havent recieved the paper work i was not impressed so im going to ring the secretary everyday this week to get them to do something.sorry i just needed to let off steam.i hope it all makes sense.

dear julia59 how did know anything was wrong with your neck? did u get any symptoms.

thanx all for replying.i had an mri of my head in december as they thought id had a stroke but they couldnt find anything i still have numbness and weakness all down my right side but would that have shown anything up of my neck i dont know then again i dont think it scanned my neck just my brain.when i was in hospital before they always told me nothing could go wrong with my neck i was always complaining about it they were gona do an mri on it but they refered me to a phychiratist in stead.thanx again it just seems to be getting worse its painful like a burning pain.oh and dancinglight it is worse when i move my neck better if i can keep it straight.sorry i dont think any of this makes sense i hope it does.

thanx for replying.ive tried telling the doctors right from the start.i can cope with my pots symptoms usually but when my neck is touched or moved it sets all my pots symptoms off especially my fainting.im due to go into hospital for 5 days soon because the doctors want to find the cause of my pots.its just has so much pressure on it and its so uncomfortable its driving me crazy.

thanx for replying

hey everyone. im having alot of discomfort in my neck.everytime i tilt my head back i get my pots symptoms and pass out. this has happened ever since i had pots.it also feels like someones constantly pressing on my spine in my neck with there fingers its so uncomfortable and it keeps swelling up .i was wondering if anyone else has experienced this?

thanx again for replying uv cheered me up. i was also diagnosed with a converson disorder after i got diagnosed with epilepsy before that and had to be transferred to another hospital who specializes in it and i was in a room for three days attached to a eeg monitor and a camera and microphone on the ceiling.i think that was the worst moment.but they said i didnt have epilepsy after they put me on all the drugs for it which messed me up even more. i just wonder where the care has gone is it all about making money now. evn if it was in my head i dont think i should have been treated that way.if i wasnt ill then y did they keep me in hospital for 6 weeks who knows? oh and morgan u have a really great therapsist i cant believe u got apologys coz they hardly ever admitt when there wrong.