Re: More information on sleep disorder issues.

[Guest guest]

Peg,

Your posts are a bit long for me to read in extenso but I just wanted to say that I had TERRIBLE Central Sleep Apneas with heart pauses as well (I called them WIFs for Wake In Fright), all gone after very long term abx and various treatments against Babesia. When I had a sleep study that recorded them the guy said: "oh no you wouldn't have that (CNS apneas) because they're really serious, you'd be really ill" No comment!

Nelly

[Guest guest]

Wow, very intersting. My husband has had a sleep study and they also

mentioned Central Apneas to him. He apneas hundreds of times during

the night and will stop for upwards of 2 minutes. Try and sleep with

that or sleep next to that. He does very little stage 4 or stage 3

either. I'll be curious to hear where you go from here. We have been

at a loss for my husband. He falls asleep in seconds too.

I on the other hand take my time falling asleep. I also had a sleep

study, showing no stage 4, a couple of minutes of 3, mostly in 1 and

2. Not one stitch of REM. No apneas though. I have just started

looking into Lyme Disease, and it is giving me shivers up mine

spine. Symptoms no one has ever been able to explain in CFS/FM now

are mentioned under LD. I thought I had my diagnosis down

pat....still learining.

>

> 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

>

> Visconti Tarot Cards

[Guest guest]

yes peg your so right. Sleep is one of my biggest challenges. If I

don't get enough rem I am buggered.

Im taking b vits and (b12, folic acid, b6 etc) and pregnenalone, and

sometimes aprazolam too.

Im going to try and get some melatonin soon too.

s

>

> 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

>

> Visconti Tarot Cards

>

>

>

>

>

>

>

>

>