brownsea

hi sugar hope you start to feel better soon. im glad you are getting proper treatment at last. two years ago i started having symptoms, and the docs, after a few tests didnt want to know. may this year i was incredibly unwell, and had to pay to go private. at last im attending tests, which hopefully by christmas will be over. they also think i have hypermobility syndrome. welcome to this positive site. emma.x

hi n welcome to the forum, ive picked up some invaluable advice here. your symptoms could well be p.o.t.s, you sure need to exclude other problems first. my symptoms snowballed over the last two years, they werent too bad at the beginning. the doctors couldnt find anything wrong after bloods, and a few referrals. in the end i went privately this year. and they found out i had p.o.t.s im still having tests done at the moment. i would certainly ask the cardiologist for a tilt table test, seeing that your pulse jumps 30 plus beats on standing. its worth asking, and not leaving this condition. good luck, and ask more questions. emma.x

hi thankful im having problems with my bowels at the moment too, so next time i see the consultant at the end of the month i will mention it. i have been on domperidone since may. before that i was in an awful state with nausea. i dropped two stone, 24 pounds. i take 30g per day and wouldnt be without it. although i had tried other nausea drugs before and they havent worked, so different drugs for different people. i hope you start to feel better soon. emma. x

hi im new here too. its a great place for information and friendship. im just starting out on this road for help and treatment so lots of tests at the moment, which is making me feel more tired. wish you well. emma.x

im the same, mostly pale all the time. although during a flare up, my checks are a lovely shade of red!

hi janey hope you start to feel better soon. for the last two years ive been in bed for the whole of november and december. this year im wondering whether or not to have the flu jab. keep your strength up, its good your drinking, maybe phone the docs and ask for advice. emma. x

hi daphne im new here too. your symptoms sound very much like p.o.t.s. i hope you have some family or friends around you to fight your corner. you must keep insisting that something is wrong, because there is. it took me two years to get the diagnoses. in that time i too was diagnosed with m.e/cfs. my heart rate was similiar to yours. 80 laying down and it went up to 185 standing, and then they finally done something. although im not better, i feel alot better than i did in may when my body was in an awful state. i really hope you get the help you need. you need to be persistant with docs, espically when they think that there is nothing wrong. welcome to dinet. emma. x

hi darcy i was first put on it in may of this year. i was so anti-drugs before this time. but i go very ill so i took whatever was given to me. i was very lucky as i seem not to have any side effects to the drugs given. im on a low dose 40g a day. although in the hospital my heart rate was 185 when standing, its still quite high after 10 minutes, but at least i can get around the house for a short time now. the only problem with me is that when i lay down my pulse is around 50bpm. so i cant have a higher dose to control my heart rate whilst standing. good luck.x

hi toni im from south london, croydon. ive found since being on midodrine, fludrocortisone,beta blockers, paroxitine and domperidone, i do feel better. although that doesnt mean that i can fall backwards. at the moment im feeling pretty dreadful. tired, breathless, i pick up a little in the afternoon. but without the meds i wouldnt like to think what would of happened. i lost two stone, my weight was 6st 12. im being seen at kings college for some tests. hope you feel better soon. emma.x

hi i know certain smells affect me, like petrol, i have only put my in the car twice in all the time ive been driving because i cant tolerate the smell. and certain chemical smells affect me. x

hi willow that sounds dreadful and i think you are doing the right thing with informing the right authorities about this incident. silly man. my brother lives in devon, im in london. im a new person on this site hoping to learn more about my condition. emma.x

hi toni just joined too. im from london. getting advice is essential to understanding this condition. best wishes emma.x

hi momto thanks for your welcome. experiencing headaches for a couple of days hoping they are temporary. taking some paracetamol, but they dont seem to be working, they didnt on my headaches before. hoping your well. emma.x

hi janey i'm from south london, croydon. ive not met anyone with p.o.t.s before. had an awful time with it this year, and im hoping now the docs seem to know whats going on they will get to the bottom of this condition. im having some more tests done in the next few months. im having the tests done at kings college. a mri on the brain, eye test for the white flashing light, stomach and bowels tests and maybe a lumbar puncture, but i dont know if they can as i have osteopenia of the lumbar spine. how long have you had p.o.t.s for? thanks. emma.x

i too had some of the symptoms since i was nine years old after a bout of gastroentiritis. and throughout the years i had some symptoms worse than others although mostly bearable. until just over two years ago may 07, when a blast of symptoms came over me dizziness, nausea, shoulder neck pain, headaches, when my life stopped. it wasnt until this year may 09 that a doctor said it could be p.o.t.s. i finally had an autonomic function test. so i ticked the two years box.

wow what a lovely warm welcome. hi cath-uk, i had a stomach upset a few months before, i dont know whether that made any difference. otherwise the symptoms seemed to come out of the blue. i had painful joints and muscle aches for a few years before but they seemd copable. thanks.x hi broken shell, im hoping now the docs are investigating that finally there maybe some answers.x hi maxine, my mum has been brilliant, she takes me to appointments, so does my sister, even my little niece when i was at my worse would sit and hold my hand. thanks.x hi bella mia, thanks for the prayer i appreciate it. am sure glad that i can ask questions, or read others posts which are so similiar to mine. so kind of you.x hi kayjay, thank you also for a prayer, i think knowing how to handle or deal with this disorder will make me more comfortable in the future, not so anxious.x hi macks mom, my weight has improved immensely. i have put on two stone, in three months and kept it on. two stone is 28 pounds. i just couldnt stomach anything towards the end. i was extremely nauseous, unable to drink water. i had to try a few different nausea meds though, stemitil made me so drowsy and i felt really odd on it. however domperidone seemed to do the trick, im on it three times a day 30mg. x hope your son feels better soon. hi amy, i too am glad i found this forum, seems so friendly. thanks.x hi ana, i will keep you up to date with my progress for sure, and if anything works for me i will be sure to pass it on. thanks.x hi persephone, a fellow brit, ive not found much on p.o.t.s in the u.k other than a few blogs. hope to speak to you soon.x thanks everyone again. look forward to speaking to you all in the future.xxx

hi jana thanks for that. ive been reading through other peoples experiences and they do comfort me somewhat. i have so many symptoms over the past two years, at times you think can this really be happening to me. its helpful to flip through others posts and see that they have the same symptoms too. hope to speak to you soon. emma.x

hi my name is emma and im from london,uk. wasnt sure where to put this so please place elsewhere if appropriate. ive had the classic p.o.t.s symptoms for two years now, and with endless trips back to a not to pleasant doc, in may this year (on my birthday) i was admitted to a private ward. the only way i could get treated was to pay private. the doc seemed to pick up on the symptoms, my hr laying down was 80, and on standing 185. and bp dropped when i stood up, it set the machine off. after three weeks, and numerous tests, i was put on midodrine, beta blockers, domperidone, paroxtine,and fludrocortisone. luckily i had no side effects, and they seemed to do the trick in making me a lot better. although still unable to sit up for long, or walk no longer then a minute i was feeling alot better then when i was admitted. my weight dropped to 6 stone 12, (96 pounds) and im 5' 8'' so not good. there was a time in hospital where i was so weak they were prepared to put an oxygen tube down my throat and a feeding tube. luckily i picked up some and it was needed. now four months later, ive a had an autonomic function test, which came back abnormal (still waiting for an appointment to the consultant to get the results) and last week saw a neurologist, he has put me forward for five investigations; in a couple of weeks time i have a mri on my brain, he wants my bowels, stomach, eye ( as i have a white flashing light that hasnt gone away for over a year) and maybe a lumbar puncture, (although i have osteopenia of the lumbar spine). ive been reading others posts on here and its so comforting to read others stories. i know that im not going mad. the docs in the last two years have sort of given up on me and ive had to put up with the symptoms until they got so bad i couldnt any more. im currently using a wheelchair on medical appointments, although i finding using one difficult as i need to recline and my legs need to be up. so i cant go out on normal shopping trips. although i have been going out in the car a little more and reclining the seat back and putting my feet on the dash. fingers crossed things will get back to near normal. i seemed to have suffered with symptoms all my life. they started at 13 years old. when i blacked out, and i got over this episode three months later. i also had problems at 16 and 18. ive never had much stamina. and all what i considered normal with my health, heat intolorence, blacking out, rapid heart rate, i now realise isnt. i could go on, but i will spare you the details, as im sure you all now them already. i hope to get tips and advice from this friendly site. oh and i usually write in lower case, my heads normally woolly and im so forgetful. hope to talk to you all soon. emma.x