Orthostatic Hypotention And Understanding It

[miranda]

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 ?

[miranda]

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

Its all very complicated.

[Chaos]

Hi Mirry,

I have been diagnosed with OI/NMH also. I may be totally off base here, but when I was researching after being diagnosed, it seemed like NMH is also called NCS or vasovagal syndrome. I believe PAF is different although they both have postural hypotension involved but from different causes. At least on the DINET website they are listed under different catagories and are discussed as different entities.

[miranda]

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 ?

[miranda]

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.

[Chaos]

YES! Fatigue, weakness, vertigo, lightheaded, tremor, paresthesias, tachycardia, shortness of breath, exercise intolerant.... the list goes on and on. Also have migraines and joint hypermobility (am scheduled to see the geneticist to test for EDS the end of June.) I don't faint although my blood pressure dropped into the 30's on my tilt table... and I was still awake.

I had about 3 weeks recently where I felt GREAT.. but the past 4 days have been tough for me too. Have so many projects I need to get done around the house and can barely drag my body out of bed or a chair. It's so frustrating when I was feeling so normal.... better than I have in over a year...

Besides the joint hypermobility, I think MCAD may be part of my whole ANS thing. The allergist changed my meds around and I couldn't tolerate the new ones so I'm hoping maybe that was why I've had a few bad days. Now that I'm back on the H1 and H2 blockers I'm hopeful things will start looking up again.

I'm currently taking Midodrine, Fexofenadene, Zantac, Wellbutrin, Propanalol, and Vivelle dot (hormone patch). Feel like an old lady on all these meds but at least I'm functioning something like closer to normal. Woo Hoo. Better living thru modern day pharmaceuticals.

[Rachel]

Hi Mirry,

Chaos is right. Orthostatice hypotension will be a part of PAF, but just because you have orthostatic hypotension doesn't mean you have PAF. So unless your doctors have diagnosed you with PAF then you very likely don't have it. Don't worry!

I'm sorry you're having a tough day. I hope you feel better soon.

Rachel

[pat57]

Hi Mirry,

I have OH and neurocardiogenic syncope also.

You probably should "salt and water load". I was basically disabled till

I was put on meds. Make sure you get 8 hours uninterrupted sleep each night.

Compression stockings work great for me too. I figure you will ask-- I'm on Norpace and

an SNRI.

good luck

[miranda]

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.

[hensor]

Yup, it does sound like EDS is a possibility, but it doesn't surprise me that your neuro didn't see the conection between the joints and autonomic stuff. His diagnosis seems pretty accurate though with the 'too flexible blood vessels'.

Good luck finding answers and getting things under control,

Hannah

[miranda]

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.

[hensor]

I don't have particularly affected skin either, and have a diagnosis of Hypermobilty Syndrome/EDS. - If you check out the website www.hypermobility.org it might give you the info you need.

If it is EDS there isn't a 'cure' as such, but there are lots of management things that can make life a lot easier and keep things under control.

[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.