; Mayo: Vacuum; Bladder; nigling complaints

January 29, 2002

:

In the words of Alice " Welcome to my nightmare. " My day night

(sleep/wake) switch does not work. I keep teling this to peope and they

assume I have problems sleeping. In the sleep position it takes mammoth

effort to wake just enough to take Dexadrine, otherwise my entire time is

spent wanting to sleep, sleepwaking (with memory loss), I seem confused,

apathetic. Sleep requires a hypnotic (triazolam) and relaxation exercises,

or sleep is not possibe and I become a pink fuzzy bunny with a drum for 72

hours at which point I just pass out. Different doctors took me on and off

the meds until I cried out to stop. I aso had a CT scan to check for a

tumout (tumours on the hypothalamus can aso cause this). I lost it pretty

much from one day to the next and it has remained consistent. Dexadrine is

used for Narcolepsy, and as far as long-term use goes it is quite same.

Different (many, many, many) sleep medications have been tried only the

hypnotics work. It is on/off. I stick to a rigid schedule of wake sleep.

I've found very litte on subjects who have ost their circadian rhythm, most

sleep deprivation research has to do with shift work and the like. I am

stuck in sleep or wake depending on what med I last took.

Must have felt it in my bones. Package about brain donation (Mayo) came

yesterday. Very straightforward. For the record, I had no takers in

Canada, and I need this stuff sorted out so my kids don't have to. Find it

interesting too. I don't care what country I end up in I just want the

donation to resut in a better understanding of the illness and some closure

and answers for my kids. Besides, I am Dutch, not Canadian or American.

I practice double voiding (have for many years) to keep vountary conttro of

my bladder. My abiity is slowly declining, very noticeably the last couple

of weeks. I am so grateful that I was in good shape before all this

started, that may have bought me some time

Like most of us I have a litany of complaints. A different one takes

centtre stage each day. Very tough to organize a doctor's appointment - I

have to choose just one. I have now developed poor enough circulation to

be considered as having Reynauds syndrome. I wondered why my foot had been

blue for a month.

My X got together with my old GP in Toronto. They have the onset of my

symptoms pegged at 1985 - so I guess I'm doing allright.

aletta mes, vancouver, bc canada

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