Re: Adrenaline/POTS - NANCY - Article by Dr. Grubb

[Guest guest]

:

My daughter sent you an e-mail with her address....did you receive it.

There is an exceptionally good article by Dr. Grubb et all in the CEDA

files section, titled " The Postural Orthostatic Tachycardia Syndrone " .

It is packed with information that could provide you with further

understanding. It contains some of the best information out there and

the authors state that some people develop symptoms of a partial

dysautonomia after a viral illness and even discusses prognosis a bit.

From my reading and experience, the article encapsulates some of the

best information out there and I don't think there is much more known,

but I may well be wrong.

I have come to understand that my daughter has a partial dysautonomia as

well as Elhers Danlos Syndrome Hypermobile Type with Marfan's features.

It appears to me that dysautonomia goes hand in hand with HEDS despite

the fact that the EDS literature concentrates on joint problems. There

seem to be so many on this site who also have symptoms of a partial

dysautonomia i.e. heat and cold intolerance, severe sleep problems,

headaches and problems with exhaustion so that one disorder may somehow

predispose to the other.

Perhaps your symptoms are more those of a partial dysautonomia than

HEDS. I know my 2 family members with CFIDS benefited greatly from

increasing their salt and fluid intake, avoiding excessive heat which

exacerbated symptoms and had no choice but to reduce activity levels

drastically. The trick is to learn how much activity your particular

symptoms will allow.....i.e. pacing oneself and paying very close

attention to ACTIVITY THAT EXACERBATES SYMPTOMS plus avoiding same.

That seems to be the best that is out there right now. That is just my

perception of our own situation, observing it for a number of years as

well as seeing the process in my family. Perhaps others do not see it

the same way at all.

During my daughter's appointment with Dr. Grubb, I found him to have a

very firm and clear grasp of HEDS as well as the dysautonomia symptoms

that create so much fatigue for my daughter. An interesting thing he

said was that even the brain has connective tissue within it. He was

honest with us and made 3 suggestions re medication, 2 of which improved

my dtr's quality of life. I suspect that the research on dysautonomia

will need many more years yet.

http://www.dyna is a site very helpful for my dtr. and the newsletter

has some good strategies.

www.dysautonomia-eduinfo.org/ I also found to be clear and in everyday

language

Hope this helps!

Bernie

Re: Adrenaline/POTS

Bernadette,

Thanks for the tips, told my son about the moving his legs and the

fluids--he says he will try it (if he remembers).

I have been eating more salt in my diet--that has helped me have

less black-outs in general. As for this current temporary illness,

I'm sure I got it from drinking from my son's glass, accidently,

over 2 months ago. I remember trying to rinse my mouth out with

peroxide and making note that if I was sick, it's from 's

glass. He's been dragging quite a bit lately too, but it's mostly

from the heat of summer. I'm sure it's time for a checkup and follow

up with some doctor somehwere.

What you describe your daughter as having a sore throat, bad breath,

and fatigued, it's a like and I too. I haven't been diagnosed

yet with EDS but has--those are his classic symptoms after

activity.

I thought it was more like CFIDS. The diagnostic criteria has to fit

to get that diagnosis. I can't remember where I found this but I

saved it in a text document about CFIDS;

" The clinicians conclude that to have the disease diagnosed, you not

only have to become ill after exercise, as the present guidelines

state, but that you must also have 'neurological, neurocognitive,

neuroendocrine, dysautonomic and immune manifestations' < indicating

that the hormone and immune systems are disturbed. "

The immunologist said it was rare, but we both have the same exact

immune deficiency.

I describe our lifestyle like that computer game, Oregon Trail; if

we don't eat enough or do too much, or go too fast without proper

rest(more than a healthy person needs), we just get sick. I tend to

get sinus inflamation and burning in my lungs that later turns into

inflamation and a cough. I lose my voice and/or have a scratchy

voice for days until I rest more.

gets so weak that he chokes on his saliva too--then I know

he's way over done it. He also has paralysis of his esophagus caused

by a motility disorder, most likely from the acid of GERD.

I'm going to see if wants to start posting on here for himself. He

wants to know which computer games your daughter likes to play

Blessings,

~Duv()

[Guest guest]

Bernadette,

Hi~ yes, we got your daughter's e-mail and replyed back earlier this

afternoon. wrote a bit to her too in the email.

I've been snoozing off and on with a bad headache and general

malaise/sleepiness all day. Either the side effects of CIPRO are

making me sick or the med isn't working after 4 days now. It still

isn't clear about what's causing this. My sinuses have decided to

get in on the act with the usual set of problems as well as chest

congestion. I'm sure that my sinus wasn't the primary infection. I'm

on the list for a visit from Mike Uggen sometime at the end of the

month, but now it looks like it may be at the beginning of next

month. From what I read, he will be able tohelp with a number of

things for us. In the mean time I have an appointment to see an

osteopathic doctor free of charge, courtesy of a special fund

granted by my local food shelf.

That article will be a big help...just need to educate our doctors

here too.

I will have to go to bed early tonight as soon as my youngest gets

home from babysitting. I'm going to be better company when I feel

better.

~Duv