More information on sleep disorder issues.

[Guest guest]

Boy don't I appear to be a hit and run kind of member? I apologize

for not repsonding to the members who so kindly wrote me after my

initial letter.I'm still tracking and reading your responses. It

just takes me so long, maybe this post will explain better. It

literally took me three days to write that post and I just crashed

and burned after I put it on the board. That tends to be the way I

must operate these days. I have to push and push myself to get

things done, and then having used up all my resources I must " crash "

to replenish my vital resources to live on.

Color, I emailed you and it was returned to me, maybe I'm not on

your approved list? It is a bit of an adjustment getting used to

this format, it isn't exactly condusive to brain fog, at least for

me.

To be quite frank, I have almost stopped altogether posting on

forums. Because I am just not able to be a very informative or

supportive member. You must be a friend to have a friend, be

supportive to have support and I'm afraid that I've just worn

everything out. And frankly I fear that I must surely drag

everyone's spirits down with my current circumstances. But I do have

a wealth of information that I've collected while trying to connect

the dots.That does seem to be the reduced value of all of our

experience, we are experts at connecting the dots.

I want to tell those who are thinking about having a sleep study

done or those who wonder why the CPAP mask hasn't solved all of

their problems, this is what I discovered.

My sleep problems started rather suddenly. That is why I am trying

to research the possiblity of Lyme or some other infection becoming

neurological during the month I gained these new symptoms. In a

month period I went from insomnia, to a super super sleep mode,

falling asleep while eating, talking, even going to the bathroom. A

couple of months ago, I was startled awake to find that I had been

standing at the refrigerator door for the past two hours. It is

indeed maddening. I was sleeping so much, the doctor just

automatically prescribed stimulants for narcolepsy. This sort of

minimally worked for a year, then even increased doses wouldn't keep

me awake. The docs started acting like I was turning into a drug

addict and I was not able to convince them that I could not stay

awake. Overall, my symptoms started June of 2001 and it wasn't until

January of 2004 that a doctor finally recommended a sleep study. It

didn't dawn on me because I thought I was getting too much sleep.

Plus I didn't snore , nor am I overweight. I guess that is why other

doctors didn't think to go that route either.

Although upon getting the test back I can't say I was relieved to be

vindicated of those docs accusing me of drug abusing. Who would want

to hear what the doctor told me that morning, that central sleep

apnea was so rare, usually patients don't live past six months.

Doctors keep insisting that CSA usually occurs after a stroke. But I

have not had a stroke I tell them. They don't hear. And they refuse

to hear me or read the information I've uncovered about these types

of lesions occuring after any type neuroinfection, like neuro-

encephalitis or neuro-lyme. Or was it neuro-menengitis? I can't

remember, which is another problem.

During my sleep study, it was discovered that I barely ever get out

of stage two sleep. The doctor said that out of 60 minutes I am NOT

breathing for 40 of those minutes. That means that I am only

breathing 20 minutes out of each hour. No wonder the doctors keep

asking me how I've been able to stay alive. It began wearing a bit

thin though when they kept wanting to parade me before this or that

research team. At first I thought they were going to help me only to

realize they want to use me for their benefit, not mine. I felt as

though I had grown two heads. One time I definately didn't want to

be popular.

has asked in his response to my first letter, how I might have

gotten those lesions on my brainstem. I really don't know and the

doctors say they don't know either. BUT.... I'm more open to

possibilities than they are. I think there is a possibility of the

lesions being from an infection, and Lyme has been known to go

neurological. My previous lyme doctor, Dr. Harvey, houston said that

he had quite a few patients that had these brain lesions from the

lyme. I even met one of the patients who is now well from his

treatment. Dr. Harvey retired mid stream on me though so I can't

confirm firsthand what he claims. For the most part Lyme patients

don't get sleep studies done . I think that if more were done, there

would be more reason for doctors to investigate the neurological

aspect of it.

And I've been told that other patients are not as dogged as I am in

my single mindedness to get well, traveling crosscountry and doing

whatever was required to find the answer. Most of the doctors have

told me that the usual patients have not survived as long as I have,

eventually giving up the fight. It is amazing the candor these

doctors offer up when they think the patient is probably not going

to be around long enough to squeal on them. As time goes on, I shall

tell you some of the tall tales that these infamous doctors have

confided in me. Remind me to tell you about the " forfeited

generation " tale .

But now back to the sleep issues.

They discovered also that I fall asleep quickly, instantly as a

matter of fact, within thirty seconds to be exact, which must be a

record. My son said if I could bottle that up I'd be famous to

insomniacs.

But because I am NOT breathing for more than 20 seconds over 1200

times a night, I constantly am being awaken, (although I don't

realize it) thus I'm unable to reach all sleep stages. So I go from

stage one sleep , to stage two sleep, back to stage one sleep after

the apnea, then to stage two sleep, etc. etc.

Therefore I only spent 10 minutes of the entire night in REM sleep

and even less in the restorative deep sleep stage. I do not know if

any of the endocrine hormones are replenished during sleep, but I do

know that seratonin is replenished during stage four sleep.( no

wonder I was so weepy.)

" Short term memory " is recorded in stage four sleep explaining why

I can't remember what I did two minutes ago. I will be at the bottom

of the stairs and not remember if I was going up or coming down. One

reason it takes me so long to write letters is that I fall asleep

here in my chair and when I awaken I can't remember what I was

doing, so I tend to keep losing half letters of things I was going

to post. I am not kidding, my life is literally jumping from one

crisis to the next. I've ruined so many clothes from falling asleep

with an ink pen in hand. Ink everywhere...............I get an

itch....oops, I scratch it with the pen, then I've ink all over me

too.........

I am curently amidst turmoil with what I consider to be a circadium

rythymm problem. I sleep so much every day anyway, but if I do get

a " window of opportunity " I call it, it is usually at 3 am. This too

is an issue I must research on my own as the ducs don't seem to have

a clue. What has amazed me is how under-investigated the brain is.

The ducs look for a tumor and if none there, then you are declared

well. Done. It really blows my mind not because of the obvious lack

of knowledge on the workings of the brain, but on the lack of

motivation to explore this undeveloped specialty.

It was a pulmonologist who headed the sleep center where I was dx.

When it showed Central Sleep Apnea, she said you will have to find a

neurologist cause I don't know anything about CSA. It didn't even

seem to matter that she was obvoius about her only motivation in

selling CPAP machines, which usually aren't prescribed for my

problem, so she blatantly blew me off as I wasnt' going to pay her

electric bill I guess. Where is this advocate, the hypocratic oath

tells about?

I do not know all the ways in which our bodies replenish the things

that get used up each day, but we have heard that deep sleep is very

important to restore our bodies. The doctor confirmed that my

horrible pain was very real, noting that I am literally not getting

enough oxygen to the brain .

I'm getting tired and starting to misspell words. When it takes so

long to write these it gets confusing on what I said today or

yesterday. Time has no meaning for me.

THE REASON FOR THIS POST was to bring to your attention that one

problem we may have is not getting those restorative stages of sleep

that is needed to replenish our immunity our enodcrine glands and

who knows what else. I do know that you do NOT have to have central

sleep apnea like I do to have a sleep disorder that would interupt

your sleep stages. When this journey began I truly didn't know how

vital the sleep issue would become. There are at least ten or more

sleep disorders that can affect sleep stages, and yet I had never

heard of such a thing until just a year ago. But if your body can't

restore what it spends each day, eventually you run out.

Kaplunk...............

Peg

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