Sleep

[Guest guest]

A couple of years ago, I heard someone with CFIDS talking about reversed

circadian rhythms. At that time, I was sleeping about 12 hours a night -

midnight to noon - but as the years went on, I found my schedule shifting so

that now, I cannot fall asleep before 4 a.m. or so, and sleep until 2 or 3 in

the afternoon. I have done everything to try and shift this - every sedating

antidepressant, klonopin, sleep meds, melatonin, herbs, meditation, etc. I

finally just had to adapt to it. I'm wondering if anyone has had any luck

adjusting such a skewed schedule, and how they did it. Also, I wonder about

people's experiences with sleep in general. I found that once I got CFIDS,

if I didn't sleep 11 or 12 hours a night, my symptoms were much, much worse.

Now, I can do about 10 hours a night and be okay (well, as okay as I get with

CFIDS), but less tends to bring on more symptoms. Has anyone been to a sleep

disorders clinic? Does anyone have a pre-existing history of insomnia (I do

- though my CFIDS was classic sudden onset, a textbook case, and had nothing

to do with being " tired " )?

[Guest guest]

Message text written by INTERNET:onelist

>- though my CFIDS was classic sudden onset, a textbook case, and had

nothing

to do with being " tired " )?

<

Years ago I had mono and the only leftover sy

[Guest guest]

This mirrors my dh's experience exactly. One of the

first symptoms he had of CFIDS was a reversed

circadian rhythm. He did go to a sleep clinic, but it

was just for sleep apnea testing. Some bright child

decided maybe he didn't have CFIDS after all....

He still struggles with sleep daily. He cannot sleep

when there is people noise going on, so sleeping

during the day is nearly impossible. And his body does

not want to sleep any earlier than about 4am. When he

uses sleep aids, he usually is awakened during the

night and ends up sleepless and headachy.

I spoke briefly about my dh's CFIDS with an old friend

who does biological research. His first question was

whether anyone had researched what was causing the

sleep disturbances since he felt all the other

symptoms, including the immune damage and anaerobic

conversion, could easily be explained by the damage to

the normal sleep patterns.

I was in an auto accident several months ago. My sleep

patterns were disturbed by the neck and facial pain

that lingered under what the analgesics fixed. Until I

was put on a muscle relaxant, I was unable to think or

remember things and totally lost my sense of balance.

When I checked back in with the hospital with those

symptoms, they were so severe they immediately ran a

CAT scan to see whether I had bruised my brain. So, I

am not skeptical that the wrecked sleep of PWCs can

push the body into serious chronic illness. My two

week minor sleep decay took more than a month to

completely reverse. Imagine the time it would take to

reverse years of sleep disruption.

Doris

--- Peggomatic@... wrote:

> From: Peggomatic@...

>

> A couple of years ago, I heard someone with CFIDS

> talking about reversed

> circadian rhythms. At that time, I was sleeping

> about 12 hours a night -

> midnight to noon - but as the years went on, I found

> my schedule shifting so

> that now, I cannot fall asleep before 4 a.m. or so,

> and sleep until 2 or 3 in

> the afternoon. I have done everything to try and

_____________________________________________________________

[Guest guest]

In a message dated 8/4/99 4:03:38 AM Eastern Daylight Time,

Peggomatic@... writes:

> I

> finally just had to adapt to it.

For whats its worth, I was and am exactly like you, but now i sleep 7 hrs a

night and with a afternoon nap , I do better, I like you was taught just to

adapt to it by a behavorial pych. He caustioned about staying in bed and

forcing or rolling around sleep, he felt that could even be worse, when in

the wee hrs of the morning try not to do anything stimulating,

I know it is hard but in time hopefully you will change it back around,

little by little, I do still get that old nightwatchman, but not as much as

before,

Biggest thing is not to stress about it !

Good luck

[Guest guest]

In a message dated 8/4/99 4:54:55 PM Eastern Daylight Time,

jegrey@... writes:

>

> Have you tried staying awake through the next day and then going to bed at

> the next " normal " time? I've heard of this helping.

>

depending at where you are at with this illness, that could cause you to go

into(what i call ) " Overdrive " most important they say is to stick to some

kind of routine that is best for you at the time....

Meds never did help me, they seemed to force sleep on ...

[Guest guest]

PS: some meds will also interfer with sleep, this is a site that is well

worth seeing....

sleep meds, neurontin, etc etc..

<A HREF= " http://www.geocities.com/HotSprings/6028/index.html " >CFIDS/FM,

Music & Seashells~~</A>

http://www.geocities.com/HotSprings/6028/index.html

I was on antiinflamatory and they helped but I had no idea they would

interfer or do anyother weird side effects...

[Guest guest]

Have you tried staying awake through the next day and then going to bed at

the next " normal " time? I've heard of this helping.

Jerry

Re: sleep

> From: Peggomatic@...

>

> A couple of years ago, I heard someone with CFIDS talking about reversed

> circadian rhythms. At that time, I was sleeping about 12 hours a night -

> midnight to noon - but as the years went on, I found my schedule shifting

so

> that now, I cannot fall asleep before 4 a.m. or so, and sleep until 2 or 3

in

> the afternoon. I have done everything to try and shift this - every

sedating

> antidepressant, klonopin, sleep meds, melatonin, herbs, meditation, etc.

I

> finally just had to adapt to it. I'm wondering if anyone has had any luck

> adjusting such a skewed schedule, and how they did it. Also, I wonder

about

> people's experiences with sleep in general. I found that once I got

CFIDS,

> if I didn't sleep 11 or 12 hours a night, my symptoms were much, much

worse.

> Now, I can do about 10 hours a night and be okay (well, as okay as I get

with

> CFIDS), but less tends to bring on more symptoms. Has anyone been to a

sleep

> disorders clinic? Does anyone have a pre-existing history of insomnia (I

do

> - though my CFIDS was classic sudden onset, a textbook case, and had

nothing

> to do with being " tired " )?

[Guest guest]

I forgot to say that if you want to discover your highest and lowest daily

temperature, you are supposed to take your temp for about a week and when you

find the 2 or 3 hour period in which your temp peaks, you then take your

temp every hour to pin down more specifically when it peaks.

[Guest guest]

Hi,

This sound just like me! I have a sleep disorder called nocturnal

myoclonis which is a tremor disorder. My legs would jerk and I never got

into REM sleep. It is treated with klonopin, and now probably other

similiar drugs. But when the horrible, strange fatigue started, I needed

as much sleep as you, and still need a lot of sleep to have a few good

hours. It is a pain to have to follow ones own pace rather than that of

everyones elses! I think if a person who is properly diagnosed and treated

for whatever underlying problem there is, then they will be better - as

opposed to the CFIDS dx and therapy/exercise treatment.

Take care,

Christie

tab@...

At 04:03 AM 8/4/99 EDT, you wrote:

>From: Peggomatic@...

>

> A couple of years ago, I heard someone with CFIDS talking about reversed

>circadian rhythms. At that time, I was sleeping about 12 hours a night -

>midnight to noon - but as the years went on, I found my schedule shifting so

>that now, I cannot fall asleep before 4 a.m. or so, and sleep until 2 or 3

in

>the afternoon. I have done everything to try and shift this - every

sedating

>antidepressant, klonopin, sleep meds, melatonin, herbs, meditation, etc. I

>finally just had to adapt to it. I'm wondering if anyone has had any luck

>adjusting such a skewed schedule, and how they did it. Also, I wonder about

>people's experiences with sleep in general. I found that once I got CFIDS,

>if I didn't sleep 11 or 12 hours a night, my symptoms were much, much

worse.

>Now, I can do about 10 hours a night and be okay (well, as okay as I get

with

>CFIDS), but less tends to bring on more symptoms. Has anyone been to a

sleep

>disorders clinic? Does anyone have a pre-existing history of insomnia (I do

>- though my CFIDS was classic sudden onset, a textbook case, and had nothing

>to do with being " tired " )?

>

>---------------------------

[Guest guest]

>While we are talking about sleep, though, I have questions for others.

Ever since getting sick, I have the same problems. One is body jerks while

sleeping or falling asleep. there was also one other thing related to

sleep, but I can't think of it at the moment. does anyone else experience

this or know what it might be due to.

>>melanie

My body used to do that jerking stuff; very annoying. In my case it was

likely do to nutrient deficiencies and just a strained body; when I cleaned

up my diet and started with the supplements it finally stopped. --

[Guest guest]

>While we are talking about sleep, though, I have questions for others.

Ever since getting sick, I have the same problems. One is body jerks while

sleeping or falling asleep. there was also one other thing related to

sleep, but I can't think of it at the moment. does anyone else experience

this or know what it might be due to.

>>melanie

Hi,

A sleep study would probably dx this problem. I need another one and don't

want to go through it again! I know what helps me, but docs just want more

tests, visits, & money? Christie

[Guest guest]

For me, the movements tend to get worse when my CFIDS gets worse. Lately, I've already increased my supplements, and I eat better than I have at any other point in my life. I just wondered if it is a separate problem or one that is related to this illness.

RE: sleep

From: 2276@... >While we are talking about sleep, though, I have questions for others.Ever since getting sick, I have the same problems. One is body jerks whilesleeping or falling asleep. there was also one other thing related tosleep, but I can't think of it at the moment. does anyone else experiencethis or know what it might be due to.>>melanieMy body used to do that jerking stuff; very annoying. In my case it was likely do to nutrient deficiencies and just a strained body; when I cleaned up my diet and started with the supplements it finally stopped. --

This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor.

[Guest guest]

I saw a sleep doc when I was sick, but had not yet been diagnosed. He said I didn't need a sleep study and that I had restless leg syndrome.(of course I move my legs -- I have ADHD. Have you ever seen ADHD person sit or lay still-- only when I'm fully asleep) He gave me meds, but they did nothing so I went off of them and didn't see him again.

Re: sleep

From: "C.Tab." <tab@...> >While we are talking about sleep, though, I have questions for others.Ever since getting sick, I have the same problems. One is body jerks whilesleeping or falling asleep. there was also one other thing related tosleep, but I can't think of it at the moment. does anyone else experiencethis or know what it might be due to.>>melanieHi,A sleep study would probably dx this problem. I need another one and don'twant to go through it again! I know what helps me, but docs just want moretests, visits, & money? Christie

This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor.

[Guest guest]

Hi,

Usually klonopin is given for this type of problem. Is that what you had?

If not, youi might want to get a 2nd opinion. There is nothing worse than

for us not to get enough sleep! Christie

----------

:

>I saw a sleep doc when I was sick, but had not yet been diagnosed. He said

I didn't need a sleep study and that I had restless leg syndrome.(of course

I move my legs -- I have ADHD. Have you ever seen ADHD person sit or lay

still-- only when I'm fully asleep) He gave me meds, but they did nothing

so I went off of them and didn't see him again.

>

[Guest guest]

I am on Klonapin as part of my sleep regimine, and because it replaced both Ambien and Lorazepam at a time when I needed help sleeping and with the post-trauma anxiety associated with a rape. I do sleep much better on the Klonapin, but I've always wondered and even worried a little bit about why my body jerks, especially since it had never happened before I got mono the first time.

Re: sleep

From: "C.Tab." <tab@...> Hi,Usually klonopin is given for this type of problem. Is that what you had?If not, youi might want to get a 2nd opinion. There is nothing worse thanfor us not to get enough sleep! Christie----------:>I saw a sleep doc when I was sick, but had not yet been diagnosed. He saidI didn't need a sleep study and that I had restless leg syndrome.(of courseI move my legs -- I have ADHD. Have you ever seen ADHD person sit or laystill-- only when I'm fully asleep) He gave me meds, but they did nothingso I went off of them and didn't see him again.>

This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor.

[Guest guest]

My body jerks too, and I'm not taking any sleep medications. I do have

restless legs, but its not just my legs that jerk. I get these jerks when

I'm lying down, sometimes when I'm going to sleep but also just when I'm

really tired. Sometimes they seem to be associated with unpleasant thoughts.

Other times it feels like something is poking my feet even though I know

there's nothing there.

Abra

>From: " B. " <Mel@...>

>Reply-onelist

><onelist>

>Subject: Re: sleep

>Date: Sat, 18 Mar 2000 22:39:09 -0700

>

>I am on Klonapin as part of my sleep regimine, and because it replaced both

>Ambien and Lorazepam at a time when I needed help sleeping and with the

>post-trauma anxiety associated with a rape. I do sleep much better on the

>Klonapin, but I've always wondered and even worried a little bit about why

>my body jerks, especially since it had never happened before I got mono the

>first time.

>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Hi,

The left side of my body jerks after I take my tranquilizer to go to

sleep. The only thing that seems to work for me is to take a

Darvocet just before bedtime. Then I do a few very mild stretching

exercises.

My psychiatrist told me that it was a seizure-like activity, which he

thought Klonopin would control. But it didn't with me, either.

Hope you get some sleep!

IndyJo

> I am on Klonapin as part of my sleep regimine, and because it

replaced both Ambien and Lorazepam at a time when I needed help

sleeping and with the post-trauma anxiety associated with a rape. I

do sleep much better on the Klonapin, but I've always wondered and

even worried a little bit about why my body jerks, especially since

it had never happened before I got mono the first time.

> Re: sleep

>

>

> From: " C.Tab. " <tab@...>

>

> Hi,

>

> Usually klonopin is given for this type of problem. Is that what

you had?

> If not, youi might want to get a 2nd opinion. There is nothing

worse than

> for us not to get enough sleep! Christie

> ----------

> :

> >I saw a sleep doc when I was sick, but had not yet been

diagnosed. He said

> I didn't need a sleep study and that I had restless leg

syndrome.(of course

> I move my legs -- I have ADHD. Have you ever seen ADHD person

sit or lay

> still-- only when I'm fully asleep) He gave me meds, but they

did nothing

> so I went off of them and didn't see him again.

> >

>

>

> ------------------------------------------------

------------------------------

>

>

>

> ------------------------------------------------

------------------------------

> This list is intended for patients to share personal experiences

with each other, not to give medical advice. If you are interested

in any treatment discussed here, please consult your doctor.

[Guest guest]

What kind of med is Darvocet?

***************************************************

Re: sleep

From: Indyjo69@... Hi, The left side of my body jerks after I take my tranquilizer to go tosleep. The only thing that seems to work for me is to take aDarvocet just before bedtime. Then I do a few very mild stretchingexercises.My psychiatrist told me that it was a seizure-like activity, which hethought Klonopin would control. But it didn't with me, either.Hope you get some sleep!IndyJo> I am on Klonapin as part of my sleep regimine, and because itreplaced both Ambien and Lorazepam at a time when I needed helpsleeping and with the post-trauma anxiety associated with a rape. Ido sleep much better on the Klonapin, but I've always wondered andeven worried a little bit about why my body jerks, especially sinceit had never happened before I got mono the first time.> ----- Original Message -----

[Guest guest]

I have the same problem.....wake up about 3-5 am and wide awake.....cannot go back to sleep. I have Hoshimoto's so don't know what symptoms come with what disease....whether you are hypo, hyper, or what..... I can fall asleep really good on the couch about 10pm......but I use to stay up until 12 or 1am in the earlier days....!!!

Chris

[Guest guest]

Hi, Kate,

My sleep patterns are erratic now. But most common for me is to be awake

until about 2AM ..or later...and then sleep until 11. Fortunately I can

live with this as my children are grown and away at school.

When first diagnosed, I tried to get my sleep back into a " normal " range by

going to bed one hour earlier each night.....didn't work.... so now I just

go with the flow.

<G>

Good luck...

Fran

sleep

>Hi ,

>Wish I could sleep. Hypo or hyper doesn't seem to matter. Every day I'm

up

>between 4 and 5 am. And I don't have anything to do in the mornings so

just

>wait for the rest of the family to get up. The only time I get sleepy is

at

>about 10pm - the tip of my nose gets cold (healthy dog syndromd) and I fall

>asleep. That happens maybe once every 2 weeks. Any others having trouble

>sleeping no matter whether hypo or hyper? Or do I just have a guilty

>subconscious?

>

>Kate

>

>john wrote:

>

>> sleeping ....shhhhh....

>>

>> Kate Fraser wrote:

>>

>> > Where is everyone?

>> >

>> >

>> >

>> >

[Guest guest]

Hi Chris

I have Graves but have had RAI which now makes me 'hypo' For the past

17 months I have been on synthroid and not once have I had a normal panel

of thyroid test results. I seem to bounce back and forth from hyper

to hypo. In fact with just one pill per week changed by .0125mg,

I swung from TSH of 9.6 to TSH of of 34.1. Maybe that is as good

as it will get but I'm still hoping to level out. I have convinced

the doctor to prescribe eltroxin rather than synthroid this time.

The last pills I had from synthroid were definitely sub potency!

An increased dosage of replacement thyroid hormone made me more hypo.

Has anyone ever returned their meds or complained to the pharmacy.

I know it's not the pharmacy's fault but the manufacturer needs to

be told, again and again and again

Most nights I get 4 hours sleep. And that's with a sleeping pill.

As you said, I'm getting used to it but I have a teenaged son and a pregnant

daughter home and a husband who is working 60 hrs weekly at a minimum,

and they really don't appreciate it. I thought I might be unique but since

others have similar problems with sleep I guess it's to do with the thyroid

conditions. I am praying that if my levels ever get right this will

go away!

K

Ccherblady@... wrote:

I

have the same problem.....wake up about 3-5 am and wide awake.....cannot

go

back to sleep. I have Hoshimoto's so don't know what

symptoms come with

what

disease....whether you are hypo, hyper, or what..... I can fall asleep

really

good on the couch about 10pm......but I use to stay up until 12 or 1am

in

the earlier days....!!!

Chris

[Guest guest]

I didn't sleep much either, before. And when I did, it was always very light sleep. I could go to sleep just fine, but I'd wake about four hours later and stare at the ceiling. And if one of the kids woke in the middle of the night, whether my husband got up with them or not, I'd hear them and be awake again. It felt more like dozing, really, than sleep. I might be able to go back to bed sometimes, but then I'd have to drag myself out of bed in the morning at the regular time and feel crappy all day. My neurologist told me that I wasn't getting quality sleep. It was't deep enough to be helpful at all. That was also triggering my migraines. Now, though, I sleep like a baby seven hours a night, at least. Last night I went to bed at 12:30 because I was answering e-mail until then. Woke up at 9:15 when the phone rang, and dozed for another hour after that.

I'm doing very well since my supplements. You can hardly see the nodule on my thyroid gland anymore, and the migraines are gone. You can fix it, girls. Just keep working at it. If the individual supplements aren't doing what you want, try the complete, balanced one. It worked for me.

Donna

http://trak.to/lifewww.reliv.comTake control of your health!

Re: sleep

Hi I have Graves but have had RAI which now makes me 'hypo' For the past 17 months I have been on synthroid and not once have I had a normal panel of thyroid test results. I seem to bounce back and forth from hyper to hypo. In fact with just one pill per week changed by .0125mg, I swung from TSH of 9.6 to TSH of of 34.1. Maybe that is as good as it will get but I'm still hoping to level out. I have convinced the doctor to prescribe eltroxin rather than synthroid this time. The last pills I had from synthroid were definitely sub potency! An increased dosage of replacement thyroid hormone made me more hypo. Has anyone ever returned their meds or complained to the pharmacy. I know it's not the pharmacy's fault but the manufacturer needs to be told, again and again and again Most nights I get 4 hours sleep. And that's with a sleeping pill. As you said, I'm getting used to it but I have a teenaged son and a pregnant daughter home and a husband who is working 60 hrs weekly at a minimum, and they really don't appreciate it. I thought I might be unique but since others have similar problems with sleep I guess it's to do with the thyroid conditions. I am praying that if my levels ever get right this will go away! K Ccherblady@... wrote: I have the same problem.....wake up about 3-5 am and wide awake.....cannot go back to sleep. I have Hoshimoto's so don't know what symptoms come with what disease....whether you are hypo, hyper, or what..... I can fall asleep really good on the couch about 10pm......but I use to stay up until 12 or 1am in the earlier days....!!!

[Guest guest]

Can't sleep? Try a job like mine! We ran five tons of wood through the power

planer today. Don't imagine I'll have much difficulty falling asleep tonight!

I don't ever seem to have much trouble falling asleep, but the amount of sleep I

'need' doesn't seem to be a lot by 'normal' standards....

Me.

[Guest guest]

Wow, Marcia! Or is it Mike? What kind of work do you do that you'd be required to put five tons of wood through a power planer?

Donna

http://trak.to/lifewww.reliv.comTake control of your health!

Re: sleep

Can't sleep? Try a job like mine! We ran five tons of wood through the powerplaner today. Don't imagine I'll have much difficulty falling asleep tonight!I don't ever seem to have much trouble falling asleep, but the amount of sleep I'need' doesn't seem to be a lot by 'normal' standards....Me.

[Guest guest]

> Wow, Marcia!

Marcia's my other and better looking half. She's got all the brains, too!

> Or is it Mike? What kind of work do you do that you'd be required to put

> five tons of wood through a power planer?

At the moment I'm working with a guy who runs a sawmill and woodwright shop. We

start with logs, cut them into boards and make stuff. We're working on a deck,

and the joists are 3x6 boards, 16 ft long. Fourty one boards, each weighing

about 50 lb = 2000 lb (one ton) x 5 passes through the planer.... five tons.

Going back to doing my 'real' work on July 23 as I've picked up a six month

contract with the Rabies Research Unit.

Me.

--

" The greatest thing you can learn is just to love, and to be loved in return. "

from 'The Moulin Rouge'