brownsea

hi melaine glad you got your diagnoses at least you can make sense of things now. i think a lot of people at first was diagnosed with anxiety, i was. im too going down the road of eds, the doc at kings college thinks that is what is causing the p.o.t.s. hopefully in the next few weeks i will find out, as im being referred to see prof.g by my doc. going privately so i can see him quicker. alot of confusing symptoms pots dishes out. ive had it for three years without knowing what it was until last year i got so poorly i was admitted privately to hospital and they finally found out. welcome to the forum emmaxxxx

congrats danixxxxxx

hi nina hope you quickly recover from this incident. xxxxxx

really sorry for your loss. such a sad time when a pet passes. xxxx

thanks for that info. ive read the articles on wiki too. hopefully in the next couple of weeks im going to be tested for eds, fingers crossed.

i understand what you mean, well done you for getting into work, i can imagine how hard that is day to day for you. i was able to dress this morning, be pushed around a shop, have tea, then straight home to bed cant sit up for longer than two hours at present. then this afternoon i had to sort out medical papers for my referral to see a hypermobile doctor, tearing up his address three times because i got it wrong!!! now my neck and headaches, i lying in bed hoping i can take a bath soon. we all go through so much, which others will never know the extent. hope you feel ok xxx

congrats thankful. xxxxx

i have experienced this. especially just before the pots diagnoses. it felt like i had to tell myself to breathe instead of it being automatic. not nice but it did pass. hope you feel better soon. xxxx

im suffering quite badly with this at the moment. i used to have a good memory (at times). now i have a month to look at diary where everything is written down, otherwise i would simply forget. also whats frustrating me at present is i can touch type, have been able to since school. yet by the time the wanted words are formed in my head and travel down my fingers to type i place my fingers on the wrong words!!! which is a real pain. xxx

im having v.b12 injections once at a week at present. ive only been on them for two weeks, but not noticing a difference yet.

i had this bad just before i was diagnosed. it seem three weeks rest, and the start of meds did the trick for me, well it eased the pain alot. ive found if i stand for too long, say a minute for me my chest starts to hurt. so maybe its the rapid heartbeat. perhaps if you can take more rests. good luck, i hope you find the right solution. xxx

i had symptoms looking back at around the age of 9. then again at 13. my sister certainly had pots symptoms when she had her child at the age of 32 but they put it down to anxiety. the same age i got poorly, and was diagnosed two years later with pots. im pretty sure i have eds, so does my neuro think this. taking into account family members, there are alot of bendy family members. just something we realised. xxxx

hi angelika sorry i dont have any info. hope your mum improves soon. emma.xxxx

good luck thankful. its worth giving it a go. xxx

i had these just before i was diagnosed with p.o.t.s and they would scare the life out of me. until i was on meds, and i find im much more even.

hi ive been on domperidone for a while now, since last may. it did the trick with the nausea not sure about increased fatigue though. as i felt that before and after i took them. before i took dom, i tried a few other anti-nausea tablets which didnt work. emma. xxx

aw tilly i really feel for you, im on the usual meds, and i still get like this. i cant stand more than a minute or two. i dont use a wheelchair indoors, i do outdoors though otherwise i wouldnt be able to go out anymore. i have to sit down and clean my teeth, if i feel out of breath walking around indoors i sit down on the floor. which ive been doing for nearly two years now. the autonomic function test has detected, vascular sympathetic failure, not sure what that means as i havent been back to see the doc yet, ive got an appointment in may, but being vascular im sure its why im out of breath. its a real nusiance as i cant do much at all. i dont make meals anymore, can do housework. i only go downstairs two or three times a day. also i cant drive or work. really know what your going through. emma. xxx

good luck with the monitor. x

someone recommended this site, and im so glad they did, i cant remember who though!!! i find comfort in finding out others have similiar experiences to me, so i dont sit there worrying on my own, and being so scared. thanks all. xxx

hi a twiglet is a savoury snack, they taste like marmite, or vegemite, not sure what the american equivalent to marmite is. i always need to drink when ive eaten them, also they are high in fibre, has some protein, and b vits. oh and they are shaped like small twigs! emma. x

hi i was told by a doc last year to drink lucozade sport, its orange and fizzy. which at the time suffering with nausea i wasnt able to drink. im on the usual pots meds now, so i suppose the fludrocortisone helps. something ive found useful over christmas ive been eating quite a few twiglets, lots of b vits, and they made me feel better!!! hope you feel better soon, this cold weather isnt doing me any good at all. emma. xxx

hi becky just wanted to say that i know exactly how you are feeling. with the fatigue i feel im unable to do much at all. i also cant stand more than a minute. finally getting the doctors to believe last year was a breakthrough. after two years previous of going to the doctors and being turned away. im not sure of the way forward, i just know what your going through. xxx

ive had these kind of episodes since the age of 13. i go to black out, get the to floor quickly so i dont lose conciousness, then my limbs jolt. my head seems in another place, although i know what is happening, ive only lost conciousness four times in my life, they are the times that i never got to the floor quick enough. ive had an eeg, but like you said not at the time this happened. also when i have blacked out completely, my limbs and arms jolt, and my head does too, not good because my head hits the floor a number of times. im unsure what is happening. xxx

i went to kings in london and had an autonomic test with was on the nhs. although previous to this i got so poorly i was treated privately, they suspected and pots and put me on the midodrine, beta blockers etc, that was after two years of constantly going to the doctors with no joy. good luck emma. xxx

hi im not sure whether or not i have eds, hopefully i will find out this year. i too get the neck and shoulders pain if i sit up for too long, have had it since the start of my severe symptoms three years ago. i have to lean on something to ease the pain off. its like my heads to heavy for my body. have no idea why. also with todays dip in the weather, my breathing and chest symptoms hurt more. around a month or so ago with the weather dropped it took me over a week to get used to the new temps. i know standing up is becoming harder, hopefully it will last a little while before i get used to it. hope your feeling better soon. emma.xxx