Barb - POTS -Thyroid

[Guest guest]

Hi Barb: Your response was so, so interesting. Not to be rude but how

old are you. Dr. Grubb told Marit that the POTS would improve at about

age 25. At what age did you have your thyroid treated and what tests

aside from TSH and basic thyroid tests were done to establish low

thyroxine levels. I think it would be very worthwhile pursuing this, as

Marit feels cold so much of the time. Also, I am hypothyroid and take

thyroxine. Do you know of any research out there to substantiate

question of hypothyroidism in EDS or to assess hypothyroid symptoms when

the usual thyroid tests come back normal? Your experience could be

invaluable. Do you think you were hypothyroid for long before you

recognized it or it was diagnosed. I think I had symptoms I did not

recognize for a number of years before it was severe enough to show on

blood tests? Doctors rely so totally on blood results and don't

necessarily rely on symptomatology. They really, really don't know EDS

and even seem resistant to the diagnosis. How the researchers and

accumulation of medical knowledge could have failed to investigate this

syndrome is unbelievable when there is research being done in often

obscure areas. A huge question in my mind.

I will tell Meaghan of your successful solution. Meaghan already uses

the cold water shock method (plus laying down with feet elevated) most

successfully when she has episodes of severe tachycardia which she feels

as very strong pulsating in her chest, neck and throat. Has not had an

episode for a month or more. I can't say that it illicits screaming

though. She is just so relieved to have it stop. The bath may be

another thing. Let me assure you that all experiences are welcome when

coping with this most unpredictable situation. Baths caused great

anxiety for Meaghan her whole life and as a toddler she was afraid of

the black monster that she believed came out of the faucet. A shower

was guaranteed to bring the black monster out of the tub faucet. I

think this is one for the book Lone Star Rose is writing, though I could

give her 100 different " behaviors " or " problems " encountered by these

kids...A book of its own. It is vital that a genetic test be developed

and HEDS be recognized. My soapbox again!!! We are so totally wrong in

how we read these kid's behaviors when they are actually absolutely

necessary coping methods for them. I know from experience that her

hyperactivity was a mechanism to keep vital blood supply to tissues. My

total sense is that ADHD in HEDS particularly is circulation problem not

a neurological problem at all and that medicine is all wrong. Doctors

already know that Dexedrine is a vasoconstrictor....interesting that

they find Dexedrine works more frequently for girls. Do lots of HEDS

adolescents use a Rubbermaid step stool in order to take a shower?

The midodrine also helps in avoiding the down she goes through when

coming off Dexedrine if she takes if 30 min. before her Dexedrine will

wear off plus she can actually take some enjoyment in eating her dinner.

Thanks for your response. It is wonderful to get feedback.

Bernie, Toronto, Canada

Re: Re: Jill Hand

> The midodrine is very, very helpful and she notices a large decrease

in

fatigue but her

> greatest joy has been the ability to relax in a bath and soothe her

muscles without

> getting lightheaded, woozy and totally exhausted when she gets out.

> That may seem like small potatoes to other folks but it is a huge,

huge

thing to her.

I used to experience the same thing. My blood pressure would slow down

in

the bath and then I just didn't have enough blood flow to my brain when

I

got up. I found a simple solution though. Before getting out of the

tub, I

would turn on cold water and run my feet under the faucet for a few

seconds.

My blood would get pumping from the shock of the cold water, then I

would

get out of the tub.

I've had POTS for about 17 years, but since having my thyroid treated,

I've

had much less trouble with it over the past 2-3 years.

-Barb

To learn more about EDS, visit our website:

http://members.rogers.com/ceda2/

_____