Hi Everyone

[brownsea]

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

[potsgirl]

Hi Emma,

Welcome to the Forum! This is a great site for you to ask questions, read up on information, and just to get some good, solid support. As you mentioned, you've already seen stories similar to yours in these posts, so you're certainly not alone. There's almost always someone on the Forum who can relate to what you're going through.

I have several of the same symptoms you have, including the lumbar spine issue - although I now have 'progressed' to osteoporosis (-3.1). My BP also falls dramatically when I stand, and my HR shoots up, but not nearly as high as yours! (60 laying to 130 standing). It seems you're on some good, appropriate meds, though.

Again, welcome!

Jana

[brownsea]

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

[Csmith3]

Hi Emma

Welcome to DINET! I am sorry to read you have had a rough time over the last couple of years. Do you know what brought on the sudden downturn in your health? Had you been ill with something else?

Anyway, it looks like you are getting all the right testing and treatments and I'm pleased you are reporting some improvement. Sounds like a full time job with all that testing!

Best wishes

[Broken_Shell]

Hi Emma,

Welcome to the forum. I am sorry to hear about your suffering, but I am glad that you have found us here! I hope that you will find answers to some of your questions as well as support. We understand what you are going through, and it sounds like you have had a fairly thorough work-up and diagnosis. I hope that you can find a doctor that will commit to continuing to work with you until you see more improvement.

Looking Forward To Seeing You Around The Forum, Broken_Shell

[Maxine]

WELCOME-----------------

I'm happy to hear you have some of your symtoms finally controlled, and I hope you get to a more functional state. I hope have enough support from family and friends to help you get out socially.

This is a very misunderstood disorder, but it looks like more medical professionals are beginning to have knowledge on it. I've been pleasently surprised in the last few visits to various medical professionals to find they know what POTS is. I'm glad your symptoms were finally taken seriously, and the doctors ordered further testing to validate your illness is REAL, and give you some peace of mind. Believe me, there was a time when I almost believed I WAS nuts, but just in the nick of time a savy female doctor had the sense to order a TT test--------------then the rest followed. Unfortunately it seems too much followed---- . What a ride it's been.

I'm sure you'll meet some great friends on here, and finds loads of support. You'll also find some valuable learning tools--- .

Maxine :0)

[tinkerbella]

emma,

I's like to give you a warm welcome to the forum.... It sounds like you've really had a rough time and I will say a prayer for you. It can be very frustrating dealing with dysautonomia. We can only hope and pray that we are in the right hands of the medical community who are up to date on the latest treatments. I feel very blessed and very tired at the same time.

This is a wonderful community of friends who are here for each other. Just ask a question and someone will be there with an answer.

I wish you the best and hope to see you around the forum.

Blessing and love,

and

xxx's too,

bellamia~

[kayjay]

Emma, I just wanted to say hello. I hope you take some comfort in knowing that a lot of people here have an understanding of your suffering. I will be praying for you and asking for answers and better health for you going forward. Have some hope that you will do better.

I know for myself I may never be "cured" but I am learning how to handle this disorder better. There are things that can help you. I have learned a lot on this forum and am glad you found it as well! KayJay

[juliegee]

Hi Emma-

WELCOME!!!!! I hate to hear of all you've been through. Has your weight improved with the domperidone? My son was a similar weight and height when he was at his worst. I can imagine how sick and weak you must be. Keep posting & asking questions. I've learned so much from everyone here.

Julie

[Mrs. Burschman]

Hi Emma! I'm glad you found this forum. It's extremely comforting to know that you're not the only one coping with these issues -- and that you're not crazy!

Welcome aboard!

Amy

[ana_22]

Hi Emma!

Welcome....shame we had to meet like this (on this forum i mean) hehehe

seriously though this forum is an excellent resource! Be sure to keep us informed about your progress xxx

ana

[persephone]

Hi Emma. Nice to find another UK person. Keep us posted.

[brownsea]

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

[Janey]

Hi Emma!

I've been slow to getting to this message, but welcome to the forum, it's the best place I've found since getting ill!

I live in Oxford and am in London very regularly, so if you'd ever like anyone to meet up with and talk to, I'm just round the corner.

Janey

[brownsea]

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

[MomtoGiuliana]

Welcome. I am glad you found us. Hope you see improvement soon.

[brownsea]

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