jerry and carol

[Guest guest]

Thank you very much for your well wishes. I grately appreciate it.

I know I have POTS - I was diagnosed previously as well 10

years ago. I have great swings in BP from day to day - tonight it

is 130/87 in bed with a pulse of 101 and standing it is 120/112

wit a pulse of 135.

I am all confused how to treat this since I can still wake up about

twice a week with a BP plumet. My pulse always stays high.

Then I am told to increase my florinef alot and drink tons of

buillon and gatorade. I drink on thse days about 32 glasses- no

joke - that is how badly I get dehydrated. When it plumets I get

super sick, nauseated, wrestless, and feeling like the world is

falling out from me and it does if I stand up. I try to sleep this off.

It is horrible - and is so similar to adrenal crisis - but I guess the

treatment is the same.

Then the high BP creeps on and I lower my florinef and cut the

salts to a basic minimum (not totally. I still seem to need

caffeine (it is crazy ) so I make it in soy milk) .

How are people here dealing with the swings?

I have done the tilt table again and the sweat test, next he plans

for a nerve biopsy and other things he said will be in the letter to

my doctor.

I have cobra, and I pay for personal choice. I will have this til next

Spring.

I have continued with massage for relief of the neuro pain- which

does help. Some nights I do have to use percocet because the

neurontin just does not help it totally. I use meclizine for the

dizziness (i also have menieres and never know which it is.) My

dr. is looking to get me a pump with glucose for hypoglycemia

because diet is not enough. I basicly eat fruit and yogurt now .

I can only walk about half a block so I try to exercise my brian by

reading a lot when I can. Luckily, my two little dogs keep more

active than i feel capable of - a good push.

How are your loved ones doing?

Waverley