brownsea

doesnt it make a difference having the right equipment? im glad you will be able to go out and be able to cope with going out. emma. xxx

i had those earlier last year before i was diagnosed with pots. my face felt like i was sitting infront of a radiator. mine last for a while then eased, then came back on again. eventually it passed. its a horrible feeling, burning hot, i tried cold flannels, open windows, nothing seemed to work. hope it goes for you soon. xxx

since i was a child i suffered with cold hands and feet. the only things that warm them up are a hot water bottle or a warm bath. otherwise they stay cold. xxx

hi, hope the docs can treat you and you start to feel better. emma. xxx

so sweet, especially big brother cuddling her. xxx

im so glad you are doing well, and baby is fine. xxx

i used lemon dishwasher tabs once, i could smell them all the way upstairs, and they irritated my stomach. ive been so aware of smells since i was small and didnt know why. once there was a gas leak, no-one else could smell it, called the gas people out, he couldnt smell it, but got his niffy gas detecter machine out, which beeped, yep there was a leak. he was amazed that anyone could smell it as it was so small. so i suppose this was a time that a good sense of smell came in handy! xxx

my hair ive noticed for a few years now since ive had p.o.t.s symptoms have been coming out. when i brush it. also i got my first grey hair at sixteen. now thirty five and im noticing more and more grey, i dont know whether its my age or the illness. i will possibly put a wash through it soon. xxx

hi lavendar glad you have the diagnoses, now you can find a way through to get you some help. xxx

i live in london, the last week the temp has been around 0, and ive noticed such a change in my symptoms. without tablets i would suffer chest pains, on them they eased. however with this cold,snowy weather the pains have come back, im unable to do very much at all, im much more tired then usual. im pretty sure the weather in some way makes me deteriorate. especially the really cold weather. im hoping that the snow will go soon, so i can get back to normal. or at least my normal!

just wanted to say i know exactly how you feel. i was seen by a doc in may, he was very helpful at the time, thought that i had p.o.t.s, which i do, sent me to another neuro for tests, which confirmed p.o.t.s i have had two appointments since then, one with another doc in his office, then the last appointment with him, he said that i should be improving more than i am, that by next april my bp should be in line, my hr will be normal and i will be fine. i didnt understand this at all. i still have all the other symptoms. also the other neuro said i could have hypermobility, when i mentioned this to him, he straight away dismissed this, my stomach sunk, i thought that there must be something else wrong with me. when i said that i could put both feet behind my head still at the age of 35 he said perhaps i have hypermobility. make your mind up doc!!! i came out of the office upset, i didnt cry infront of him, i wasnt going to give him the satisfaction. now i know that i have to take some degree of control, try to figure out whats best for me. and override these docs. some docs have big egos. i need to grow a thick skin! your just trying to do whats best for you, dont listen, and follow what you think is right for you. good luck emma. xxx

i drink water and de-caff tea, and maybe a cup of caffenine tea daily. i try to aim for 2litres daily which at times can be really difficult. i tried the energy drinks when i was really poorly and the fizzy sweet taste turned my stomach and i couldnt drink it.

i got this symptom earlier this year when i didnt know what i had. it felt like i was sitting infront of a radiator all the time. after i was on a drip for three weeks, and the meds were sorted out, it disappeared. my temp was normal to at the time, which was really weird as i was burning, didnt feel like eating either.

early this year when i was really poorly i tried the calf high ones, i got blisters on my heel. now im going to perserve with the thigh high ones, just picked them up from the chemist today. so heres to trying.

its one of my main symptoms too. i was on a brand of domperidone which seemed to do the trick. then the pharmacy changed them. at the moment im back to my own tricks until i can find the brand i was on. i slowly chew peppermint gum, sea bands for your wrists, the accupressure points, small portions. i cant want to get the nausea tabs back! can i ask what thematabs are?

hi janey sorry your feeling so unwell. i know the cold effects me so bad. the only way i can warm up, and i try not to get stone cold, is to have a warm bath, even hot if i can manage it without feeling too awful. even as a child the cold would go right through me to my bones and i couldnt get warm after a bath, i get under the covers, by then im normally too hot! i also know what you mean with the heat. recently ive been christmas shopping, but i made sure i just had two jumpers on, no coat, as i was in a wheelchair in a shopping centre and the shops are sooooo hot. i knew with a coat i would be feeling nauseous. i was fine, just a little chilly when i had to hit the high street for a bit. it seems you just cant win. hope you feel better soon. emma. xxx

hi 1. ive never noticed the pupils, so i dont know. 2. the head thing, im glad others have the same thing. for my whole life if i look down and forward, my head is heavy and i get extremely nauseous. i can never put a newspaper on the table and look down and read it. 3. my head feel uncomfortable, cold, and the veins usually stick out. good bunch of questions. x

thats funny, i needed something to cheer me up after this stressful week. thanks daisy. emma.x

hi i would definately not leave it. i did, because whenever i went to the docs and had chest pain they would take my vital sitting or laying down. and surprise nothing wrong. my heart rate went up to 185 when i was in hospital, and sitting was 80. good luck tell us how you get on. emma. xxx

hi ive been a vegetarian for nearly twenty years. have a wide range of foods in your diet and you should be ok. protein is important. make sure what you eat is balanced, i cant see a problem. xxx

what a relief to read this post. in may of this year i was present four times in a&e (er) and each time i was hydrated and sent home. i couldnt take no more and begged my mother to help me die. i hated saying these words out loud but i couldnt take no more. i had suffered for two years with pretty unpleasant symptoms. my weight had dropped to 96 pounds and i am 5'8''. i had nothing left to fight with. docs in those two years wouldnt listen, after two or three tests, they wouldnt do anymore. i didnt know what to do. i was in a wheelchair and didnt know what was wrong with me. i still went back to my gp and she wouldnt do anything. the last time i went to a&e on my birthday, my parents asked to go private. and i stayed in a room for three weeks, on a drip for one week. the neurologist knew within a day of my admission what was wrong. why oh why couldnt i have been sent to a neurologist by my gp? i understand these posts, im still in a wheelchair, and a bed most of the day, but im taking meds. and at least on a good day im able to go out for a while. thanks everyone for writing these posts. emma. xxx

when my symptoms hit a peak, i couldnt eat or drink without being out of breath. the a&e said that unless you were born with your tubes mixed up then i shouldnt be having a problem. that was before p.o.t.s was diagnosed and i felt like i was going out of my mind. i really wouldnt try to worry about the side effects of meds. in may i was in hospital i was at my worse, no-one knew what was wrong with me, when the neurologist decided he would be put me on the meds, without having done the autonomic function test because i was so poorly. before this time i wouldnt of taken any medication. i knew i was going down hill rapidly and had no choice, within the space of two weeks, i was on midodrine ( the first tablet they tried didnt work cant remember the name) fludrocortisone, domperidone, paroxitine and beta blockers. i didnt have any side effects, but also i wasnt worried and i didnt think about having any as i was so poorly. the fludro also has helped me to sit up for longer periods throughout the day. hope you feel better soon. emma. xxx

hi prettyinpink i had a terrible time the beginning of this year with nausea, although i have it it for the past two and a half years since ive been unwell. the doctors put me on bb to lower my heart rate and midodrine. ive also tried a few meds for nausea, one of the worse for me was stemitil. made me feel spaced out, i tried it twice too. the one im on now is domperidone which seems to do the trick for me, touch wood. i think it is a case of what works for you. im sure you find a med that works. good luck emma. x

i have a white flashing light in my left eye, which ive had for over a year now. saw the optician and eye doctor, they couldnt see anything. finally last week i had some eye test (vep and another one, cant remember the name) at the hospital. hopefully all is well. i will be seeing a specialist mid november. my eyes really ache at times, especially the left eye. i expect its all down to the ans. xxx

i used to get palpatations after eating and drinking. now im on medication i dont get them. maybe its something to do with digesting your food, and the blood being taken away from the heart, i always wonder why. emma. xxx