The less sleep, the better [Sleep Disorder]

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From: sdaws06 on 6 Jul 2006 10:28

Hello,

I've been struggling with daytime fatigue for over 10 years now (I'm
just over 30). It seemed to start slowly in my late teens after a
couple years of university with no obvious initiating event(s). I was
swimming competitively 5 hours every day at the time (and had been for
years) but about a year later, I had a serious back injury which pretty
much ended that. Over the next few years, I became clinically
depressed and gained a lot of weight. And my sleep & daytime alertness
got progressively worse.

I've been on and off depression meds over the years and talked with
psychologists - both seemingly helping my mood a bit, at least
temporarily. But the biggest problem is that I just feel hella
terrible every time I wake up and it doesn't matter if I sleep for 30
minutes or 10 hours; plus I feel tired & crappy all day long. I've had
several sleep studies (some at Stanford, CA) and been diagnosed
randomly as being fine/normal or having mild sleep apnea. I've had
many other tests done (blood, urine, ekg, etc) but nothing has shown
up.

I've talked with many doctors and read books, brochures, pamphlets,
websites, etc. I've tried CPAP and all the other things you're
supposed to do to sleep better (including losing a lot of weight) but
at best, it doesn't help - and usually it actually makes things worse.
One of the strange things is that the more continuous sleep I get, the
worse I feel mentally (not just sad but brain fog, lack of
concentration/focus, memory problems, etc) but I feel ok physically.
If I get less sleep, I actually feel better mentally but am tired
physically. I've actually stayed up for 4 or 5 days a few times and
felt reasonably happy (but start to have trouble moving arms/legs over
time).

I don't really know what to do at this point but I'm worried that all
of this is seriously negatively affecting my health, so I would really
appreciate any advice. Here's what I'm thinking the possibilities
are...

- sleep apnea: I snore and occasionally stop breathing but "only" a
couple times a night (supposedly) - even once seems bad to me but some
docs have said that's normal. I tried CPAP (many times on several
settings with different masks) but it makes things worse. The settings
are pretty low (since the best diagnosis was 'mild'), despite one
surgeon claiming that I have every thing I could possibly have wrong
(small jaw and throat, large tongue and uvula, etc).

- CFS: No one's diagnosed this but I've heard that a significant
number of athletes get it from training very hard during illnesses
(which we did ALL the time). There doesn't seem to be too much one can
do in this case except to manage the symptoms. (?) And it doesn't look
like I would ever know for sure if this was it. (?)

- Lyme disease: This one just came up recently - I was never tested
for it before but tested positive about a year ago. I was bitten by a
tick in my teens but I'm not sure if I have all the classic symptoms.
I went to a contagious disease specialist but she said that it just
meant that I was exposed at some point in the past and she pointed to
another test that supposedly showed that I didn't have a currently
active infection. Are there any experts here on this? I'd like to
know what other options I have for testing/treatment/etc (I've seen a
couple different antibiotics used over long periods but I'd like to
confirm the diagnosis before proceeding with that, if possible).

I'm sorry for the long post - I've struggled with this for so long and
I feel like I've tried everything. I'm just hoping someway, somehow to
get to the bottom of this.

Thank you.

ps. If you know of any other groups, forums, whatever, where someone
might be able to help, please let me know.

From: Bill on 6 Jul 2006 15:29

sdaws06(a)gmail.com wrote:
> Hello,
>
> I've been struggling with daytime fatigue for over 10 years now (I'm
> just over 30). It seemed to start slowly in my late teens after a
> couple years of university with no obvious initiating event(s). I was
> swimming competitively 5 hours every day at the time (and had been for
> years) but about a year later, I had a serious back injury which pretty
> much ended that. Over the next few years, I became clinically
> depressed and gained a lot of weight. And my sleep & daytime alertness
> got progressively worse.
>
> I've been on and off depression meds over the years and talked with
> psychologists - both seemingly helping my mood a bit, at least
> temporarily. But the biggest problem is that I just feel hella
> terrible every time I wake up and it doesn't matter if I sleep for 30
> minutes or 10 hours; plus I feel tired & crappy all day long. I've had
> several sleep studies (some at Stanford, CA) and been diagnosed
> randomly as being fine/normal or having mild sleep apnea. I've had
> many other tests done (blood, urine, ekg, etc) but nothing has shown
> up.
>
> I've talked with many doctors and read books, brochures, pamphlets,
> websites, etc. I've tried CPAP and all the other things you're
> supposed to do to sleep better (including losing a lot of weight) but
> at best, it doesn't help - and usually it actually makes things worse.
> One of the strange things is that the more continuous sleep I get, the
> worse I feel mentally (not just sad but brain fog, lack of
> concentration/focus, memory problems, etc) but I feel ok physically.
> If I get less sleep, I actually feel better mentally but am tired
> physically. I've actually stayed up for 4 or 5 days a few times and
> felt reasonably happy (but start to have trouble moving arms/legs over
> time).

Above left in for context.
>
> I don't really know what to do at this point but I'm worried that all
> of this is seriously negatively affecting my health, so I would really
> appreciate any advice. Here's what I'm thinking the possibilities
> are...

It does accumulate over years since your body is not getting to the
regenerative state of sleep. REM is only barely asleep and I have had
nights where that was all I could get and felt correspondingly crummy
the next day. Some nights I have stayed up and not felt as bad the next
day but my concentration and even interest suffer for it.
>
> - sleep apnea: I snore and occasionally stop breathing but "only" a
> couple times a night (supposedly) - even once seems bad to me but some
> docs have said that's normal. I tried CPAP (many times on several
> settings with different masks) but it makes things worse. The settings
> are pretty low (since the best diagnosis was 'mild'), despite one
> surgeon claiming that I have every thing I could possibly have wrong
> (small jaw and throat, large tongue and uvula, etc).

I had to endure a night at a sleep center hooked to all the usual
monitoring stuff to look for Apnea, RLS, and not much more. I told them
going in that I maintain a healthy and athletic lifestyle and have never
smoked so there was no way I had or could have Apnea. I told them I just
could not fall asleep in the first place. Their response was I had to do
it or I would get a note to my doctor for "Refusing treatment.".
What treatment? The bed was like a brick, the sheets and pillows were
like starched cardboard, and they had not soundproofed against the
street and railroad just outside the room.
>
> - CFS: No one's diagnosed this but I've heard that a significant
> number of athletes get it from training very hard during illnesses
> (which we did ALL the time). There doesn't seem to be too much one can
> do in this case except to manage the symptoms. (?) And it doesn't look
> like I would ever know for sure if this was it. (?)

What the heck is CFS?
>
> - Lyme disease: This one just came up recently - I was never tested
> for it before but tested positive about a year ago. I was bitten by a
> tick in my teens but I'm not sure if I have all the classic symptoms.
> I went to a contagious disease specialist but she said that it just
> meant that I was exposed at some point in the past and she pointed to
> another test that supposedly showed that I didn't have a currently
> active infection. Are there any experts here on this? I'd like to
> know what other options I have for testing/treatment/etc (I've seen a
> couple different antibiotics used over long periods but I'd like to
> confirm the diagnosis before proceeding with that, if possible).

OK, Lyme disease is one I have never heard of related to sleep.
Fibromyalgia seems to get mentioned a lot but that is still kind of
rare. For my part, I have had primary insomnia for the last 30 years and
finally gave up and got the doctor to prescribe Xanax, after trying
everything else in the book. I got put through the wringer of
anti-depressants, anti-histamines, even phenobarbitol and seconol before
we found out what works, but is physically addicting. For what it's
worth I am 57 and have been fighting this since my 20's, but it just
gets worse. I am a cyclist and have tried riding 100 miles in a day
hoping to drop from fatigue, but even that does not work. Sore legs but
still no falling asleep. You may have something like I have, can't just
shut down at the end of the day.
I did find out that if I stayed up every other night I would be a lot
more likely to sleep on the designated nights. Not much of a life style
but I got some amount of better sleep from it.
Drove my wife nuts to have me wandering the house at 3 in the morning so
I had to stay completely away from her and read a book or something.
>
> I'm sorry for the long post - I've struggled with this for so long and
> I feel like I've tried everything. I'm just hoping someway, somehow to
> get to the bottom of this.

A long post is better than a one liner like "I can't sleep, what do I
do?" Now that there is some background on you maybe someone can help.
>
> Thank you.
>
> ps. If you know of any other groups, forums, whatever, where someone
> might be able to help, please let me know.
>
So far this is the only one I have found. Maybe someone could jump in
here with a site or something.

Bill Baka (sleepless in California)

From: normc on 6 Jul 2006 16:03

From: helco on 6 Jul 2006 23:15

"normc" <norm-c(a)socal.rr.com> wrote in message
news:h0erg.35463$VE1.6375(a)newssvr14.news.prodigy.com...
> sdaws06(a)gmail.com wrote:
>> Hello,
>>
>> I've been struggling with daytime fatigue for over 10 years now (I'm
>> just over 30). It seemed to start slowly in my late teens after a
>> couple years of university with no obvious initiating event(s). I was
>> swimming competitively 5 hours every day at the time (and had been for
>> years) but about a year later, I had a serious back injury which pretty
>> much ended that. Over the next few years, I became clinically
>> depressed and gained a lot of weight. And my sleep & daytime alertness
>> got progressively worse.
>>
>> I've been on and off depression meds over the years and talked with
>> psychologists - both seemingly helping my mood a bit, at least
>> temporarily. But the biggest problem is that I just feel hella
>> terrible every time I wake up and it doesn't matter if I sleep for 30
>> minutes or 10 hours; plus I feel tired & crappy all day long. I've had
>> several sleep studies (some at Stanford, CA) and been diagnosed
>> randomly as being fine/normal or having mild sleep apnea. I've had
>> many other tests done (blood, urine, ekg, etc) but nothing has shown
>> up.
>>
>> I've talked with many doctors and read books, brochures, pamphlets,
>> websites, etc. I've tried CPAP and all the other things you're
>> supposed to do to sleep better (including losing a lot of weight) but
>> at best, it doesn't help - and usually it actually makes things worse.
>> One of the strange things is that the more continuous sleep I get, the
>> worse I feel mentally (not just sad but brain fog, lack of
>> concentration/focus, memory problems, etc) but I feel ok physically.
>> If I get less sleep, I actually feel better mentally but am tired
>> physically. I've actually stayed up for 4 or 5 days a few times and
>> felt reasonably happy (but start to have trouble moving arms/legs over
>> time).
>>
>> I don't really know what to do at this point but I'm worried that all
>> of this is seriously negatively affecting my health, so I would really
>> appreciate any advice. Here's what I'm thinking the possibilities
>> are...
>>
>> - sleep apnea: I snore and occasionally stop breathing but "only" a
>> couple times a night (supposedly) - even once seems bad to me but some
>> docs have said that's normal. I tried CPAP (many times on several
>> settings with different masks) but it makes things worse. The settings
>> are pretty low (since the best diagnosis was 'mild'), despite one
>> surgeon claiming that I have every thing I could possibly have wrong
>> (small jaw and throat, large tongue and uvula, etc).
>>
>> - CFS: No one's diagnosed this but I've heard that a significant
>> number of athletes get it from training very hard during illnesses
>> (which we did ALL the time). There doesn't seem to be too much one can
>> do in this case except to manage the symptoms. (?) And it doesn't look
>> like I would ever know for sure if this was it. (?)
>>
>> - Lyme disease: This one just came up recently - I was never tested
>> for it before but tested positive about a year ago. I was bitten by a
>> tick in my teens but I'm not sure if I have all the classic symptoms.
>> I went to a contagious disease specialist but she said that it just
>> meant that I was exposed at some point in the past and she pointed to
>> another test that supposedly showed that I didn't have a currently
>> active infection. Are there any experts here on this? I'd like to
>> know what other options I have for testing/treatment/etc (I've seen a
>> couple different antibiotics used over long periods but I'd like to
>> confirm the diagnosis before proceeding with that, if possible).
>>
>> I'm sorry for the long post - I've struggled with this for so long and
>> I feel like I've tried everything. I'm just hoping someway, somehow to
>> get to the bottom of this.
>>
>> Thank you.
>>
>> ps. If you know of any other groups, forums, whatever, where someone
>> might be able to help, please let me know.
>
> Might be able to help, if you provide a little additional information.
>
> Has your depression been situational, endogenous, or both? The symptoms,
> including sleep difficulties, are the same; the source/cause is not; the
> treatment is not.
>
> Have you been treated, at all, by a psychopharmacologist?
>
> Have you had a PSG? More than one? Have you looked at your PSG
> evaluation reports?

You might try limiting the amount of sleep you get on the nights you do
sleep hard. Many people are logy when they sleep longer than usual. Try
holding yourself to eight -- or even seven or six -- hours of sleep a night.
That way you might still have the mental pep of "I wanted to sleep more"
without the physical tiredness of "hardly slept at all." Also, you might be
more likely to sleep okay the next night.

There's some evidence that depression can be treated by limiting sleep. I
don't think this is well established, and I doubt it's true for all types of
depression, but too much sleep can be a problem.

I hope you find something that helps.

helco

From: sdaws06 on 8 Jul 2006 22:28

Thanks for your reply.

Bill wrote:
> It does accumulate over years since your body is not getting to the
> regenerative state of sleep. REM is only barely asleep and I have had

I do feel like I might have trouble breathing while I sleep (maybe not
totally stop but it's a lot of effort - according to one doctor, CPAP
doesn't help so much in that case). Usually I wake up feeling like I
was revived after drowning. :( So I'm also worried about heart issues.

> What treatment? The bed was like a brick, the sheets and pillows were
> like starched cardboard, and they had not soundproofed against the
> street and railroad just outside the room.

That's terrible! It was tough for me to sleep each of the 4 times I
had an overnight study. The worst part was the tube they stick in your
nose that goes down your throat to measure throat pressure (or
something like that). I just couldn't go through with that the last
time but had everything else hooked up. They also have a red light on
the whole night (which I guess is so they can see you on the monitors).

> What the heck is CFS?

Chronic Fatigue Syndrome. Has many similar symptoms to sleep apnea (or
at least sleep disorders in general). One of them is that you feel way
more tired after doing exercise than normal - this seems to apply to me
(although if you just don't get much good sleep, that would explain it
too). Unfortunately, there are doctors that don't believe in it; it's
very hard to confirm a diagnosis; and there's no treatment except to
manage symptoms.

> OK, Lyme disease is one I have never heard of related to sleep.

In advanced stages, it causes various spinal/neurological issues. I
actually had an appointment 6 months in advance to see a neurologist in
SF that was familiar with sleep disorders but when I showed up, they
said he had been deported a couple weeks prior! The person I saw
didn't know much about sleep issues so I got no help from that.

> rare. For my part, I have had primary insomnia for the last 30 years and

Did you try melatonin? It seems to work for me in helping me get to
sleep (but not feeling better when waking up). I've noticed that the
effectiveness of different brands varies *a lot*.

> So far this is the only one I have found. Maybe someone could jump in
> here with a site or something.
>
> Bill Baka (sleepless in California)

Thanks again and I hope things get better for you too.

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