miranda

thanks I just looked at the Beighton score and I score 8

I cant put my hands on the floor because I have a fused spine at the top.

I will print it off for my appointment.

funny cos I cant open jars or wring out wet washing without pulling my wrist muscles ,

I am really prone to strains from simple things ,

this has got me thinking.

if i have EDS , is there any treatment for it ?

I read the sites on it and I do not have the flexible skin they mention.

Its been 7 years of feeling ill, dizzy and headachy.

Doctors told me I have migraine associated vertigo and gave me 2 pills to help with symptoms,

1: propranalol

2: Amitriptyline

I felt 50% better , but still felt ill.

Then 6 months ago It was discovered I had OH and NMH.

My neuro told me to come off amitriptyline because it makes OH worse.

So I came off it and feel terrible all the time , headachy , dizzy and ill again.

Now neuro says abou me going on Topimax for the migraines.

But could the OH be causing the constant migraines ?

if this is the case am I better trying a pill to raise blood pressure ?

I just cant decide what to do next, I am feeling woozy headed and drowsey all the time.

any ideas please

thanks , I will do this and I do not have long to wait cos my appointment is the 17th this month.

Pat , I have not heard of those meds before , I was offered fluxo but declined for now , I find the compressions stocking too much in warm weather and they roll down my leg.

Thanks Rachel, I am a natural worrier ,lol.

chaos , wow thats quite a list and explains alot , makes me think I do need meds.

Yesturday I phoned my neurologist because I feel so bad , I asked her whats caused this ...

her reply was ...

You have the NMH because you have a low blood pressure already , and your blood vessels are still young and healthy and too flexible ? We are absolutely confident that there is no serious underlying cause. So I mention my flexible joints and she did not understand how that can be connected.

My hands are so bendy its shocking , I can bend all my fingers back wards and my thumb can touch my arm. I can put my legs around my neck , my toes can bend all over the place and when I went to the doctors and sat on the bed he commented that my ankles are loose and flop my feet inwards when relaxed.

So does this sound like EDS ? I also have scoliosis of the spine and fused ribs.

thanks Julie , my daughter and I both have flexi joints , I mentioned this to the neurologist and she didnt understand any connection to NMH ?

I am a mess today , I cant walk without feeling very drunk,

cant work out if its my blood pressure or my migraine *** vertigo.

feel terrible.

Thanks for the reply Chaos , thats confirmed what I thought.

Do you get fatigue too ? I have not left the house for the past 2 days cos I feel so weak.

can I ask what treatment you are using ?

does this drug effect blood pressure ?

Thanks Julie , my daughter is 12 years old and the fainting started a year ago.

I really hope she has not inherited this. What is connective tissue disease ?

Is this the flexi joints thing ?

I think PAF is just one cause of it - am I right ?

Its all very complicated.

Hi, I read all the posts here and I am amazed by all your knowledge and have trouble understanding what everyone is talking about ,lol.

I have orthostatic hypotension/NMH

and have just read about pure autonomic failure causing this,

So is this what I have ?

I feel a bit scared reading it , should I be worried ?

Mack's mom , so Is NMH genetic ?

I have NMH , and I worry my daughter might be getting it. She has passed out a few time over the years, once when I was cutting her hair ( she was kneeling on her legs)

and once when she cut her hand.

I can feel it coming on sitting or standing , hate it !

I am in the south uk , so would be interested to know who the specialist is.

I have been seeing a neurologist who has been brilliant and diagnosed me with dysautonomia,

she is the nicest person I have ever met.

I am confirmed with dysautonomia , OH & NMH.

I have never been a very skinny person and was slightly overweight in the beginning.

The meds they put me on made me gain more weight until I was nearly obese.

I am now slowly loosing the weight and have about 25lb to loose.

A friend of mine has dysautonomia and she has a weight problem , so I think anyone any size can have this.

Hi. I take propranalol and find it gentle.

At first I had some tingling on my nose for a few days but it passed.

I usually have problems with meds so was pleased.

Hi. I take propranalol and find it gentle.

At first I had some tingling on my nose for a few days but it passed.

I usually have problems with meds so was pleased.

Not me unless you count being a Carer for the elderly as such.

Interesting tho cos my friend works as a nurse and she has dysautonomia.

I wonder if this symptom will ever go away , Is it possible ?

Suddenly I wish I could do russian dancing

thats a severe squat , imagine the blood flow to the brain ! lol

Thank you Simmy , I will try it on my next episode and will let you know how I get on.

Usually when it happens It takes me hours to feel better in myself ,

but today I recovered very quickly and thought this was probally

due to the extra salt and fluid I am taking.

Will this ever go away ? Ive been having these episodes 7 years now .

so is squating better than standing and squeezing leg muscles ?

I find when it happens I am almost paralised with symptoms and can not think (is this normal?) ,

I just about managed to squeeze my leg muscles.

It was triggered by stress and standing for ages in line ,

The elderly man in front of me, emptied his pockets and had lots of small change

to pay for his shopping and the check out girl took ages counting it.

I remember thinking OH NO !!! then it happened.

Hi everyone ,

I woke this morning and my blood pressure was good 109/78

then when I stood up it was 114/82

I was so shocked because I have orthostatic hypotention and this never happens.

I felt good and walked the dog and did ok.

Then I went shopping , stood in a long line to pay for my goods

and suddenly had a episode , my heart raced , my body shook, I was sweating , and dizzy and nearly passed out - somehow I stayed upright and squeezed my leg muscles very hard.

what do people do to stop this?

My neuro said I am to take 400mg of Ibuprofen before I go shopping ,

but only once a day , so I can use it long term.

It does help , but need to take it one hour before the triggering event.

I got diagnosed with MAV (migraine *** vertigo)

before I was diagnosed with OH/NMH.

I was taking amitriptyline which helped somewhat but

dropped my blood pressure further.

Hormones seem to be my main trigger .

Mary , is that drug for raising blood pressure ? I have been offered fludro but decided against it for now because I read people saying it stopped working for them. I was told this is a life long problem, so no rush to try it, lol.

I am on a small dose of beta blockers (20mg am & pm) , and take sodium tablets.