Sleep problems

[Guest guest]

Hi ,

Thanks for your suggestions.......I have had a sleep study

done.........turns out I have PLMD, a sleep disorder where your limbs move

at night (caused by lyme damaging the central nervous system)

I had 70 episodes of movement........14 directly related to my waking up.

This sleep deprivation has been pretty constant through-out my treatment for

lyme.

The Sleep Dr. put me on different Parkinson's disease meds.......but none

are helping.........

He sent me to a Neurologist,..........who put me on Ultram.......a pain

med.............I have increased the dose so much..........that it has made

me terrible sick........nausea and severe headaches.

I am waiting to hear back from my LLMD and the Neurologist.........not sure

exactly where I am going from here..........

This disease is so complicated,

Thanks,

Connie nwnj

Leave no stone unturned.......

[Guest guest]

In a message dated 7/30/2001 10:02:35 AM Eastern Daylight Time,

rfpnc@... writes:

>

> I have read with interest the posts about sleep problems associated with

> lyme. My problem is not so much insomnia as waking up, even after what

> should be considered an adequate nights sleep, and still feeling tired. I

> find my muscles are tired and achey and tense. I don't think my legs are

> moving or anything like that, though I could be wrong. However, I have

> found that if is almost impossible for me to consciously relax my muscle

> groups before I go to sleep, including, oddly enough, the facial muscles

> around my eyes. This is very strange for me because I spent years teaching

> others how to do body relaxation! When I try to describe this condition to

> others, they always say, 'you must be tense because of stress', but I know

> that is not what is going on. Any suggestions or comments?

> P

>

>

Hi ,

Not sure what to tell you becuse I'm in the same position. it seems no

matter how much I sleep I still wake up with aching muscles

Robyn In NJ

" It is not important how much the soul loves,

but

Rather how much the Soul IS Loved. "

[Guest guest]

, it's not the amount of sleep, but the quality of sleep that

matters. With pain, or any number of things associated with a chronic

illness, it is nearly impossible to attain restorative sleep.

Therefore, the body (not the mind, specifically) is under continual

and mounting stress.

I can relate to everything you said. For me, the pain, the muscle

tension, which is constant, the pressure of body contact with the

mattress (no matter what kind) all interfere with restorative sleep.

As far as the eyes are concerned, I refer to it as " scrunchy " eyes. I

KNOW what you mean. I have just had my eyes re-tested, so it's not

that, but the muscles are so tight, that I squint and scrunch my eyes

to relieve the pressure. Not so that I can see better, but to relieve

the tension and try to relax the eye muscles. Almost an automatic

reflex. Very irritating, and very noticable to others! Drives me

crazy!

Love ya, Rose

> <snip>I have read with interest the posts about sleep problems

associated with

> lyme. My problem is not so much insomnia as waking up, even after

what

> should be considered an adequate nights sleep, and still feeling

tired. I

> find my muscles are tired and achey and tense. <snip>

Any suggestions or comments?

>

[Guest guest]

In a message dated 7/30/2001 11:31:16 AM Eastern Daylight Time,

dmthompson4@... writes:

<< At first, I blamed it on being a single mother of a VERY BUSY

toddler.......then I was convinced that it was stress. My body would be

exhausted but my brain was on overdrive. Over the years, this continued.

Was told it was clinical depression. And now, I am on enough meds to

tranquilize a horse and still, I can not sleep well.

I am positive that if this one symptom could be controlled (or better yet,

the etiology identified and proper corrective action taken) that all the

other symptoms would be so much easier to tolerate. >>

Deb, have you had your thyroid tested? (And if so, do you have your TSH,

Free T3 & Free T4 levels?)

My LLMD suggested I may have Lyme-induced hypothyroidism when my fatigue

complaints persisted after 3 rounds of abx, while my other symptoms started

to improve. He was right

Unfortunately, the first doc who tested me said I was " slightly " hypothyroid

(and I didn't know enough to ask for the test results of the actual levels)

and didn't treat me. I went downhill, but the last time I was tested, by a

different doc, she agreed with my symptoms and " self-diagnosis " even before

the lab results came back. Turns out, I was even worse than before, and that

1st doc should have treated me!

I have been on Levoxyl for 2 months now, and my insomnia is gone. My

restless sleep is gone. My energy levels are improving every day, and I now

know it wasn't my toddler<G> Check out www.thyroid.about.com for a symptom

checklist and major info about your thyroid.

-Jules

[Guest guest]

In retrospect, I can see that the onset of sleep problems was really the

harbinger of my declining health which ultimately led to my Lyme+ diagnosis in

April. Sleep was one of those things my body did well - not that I required a

lot of it - I' was always an 8 hour girl. It was more a case of being able to

sleep whenever I needed or wanted to.

At first, I blamed it on being a single mother of a VERY BUSY toddler.......then

I was convinced that it was stress. My body would be exhausted but my brain was

on overdrive. Over the years, this continued. Was told it was clinical

depression. And now, I am on enough meds to tranquilize a horse and still, I

can not sleep well.

I am positive that if this one symptom could be controlled (or better yet, the

etiology identified and proper corrective action taken) that all the other

symptoms would be so much easier to tolerate. Sleep deprivation will eventually

kill you - your body must have that restorative phase to function properly. And

it is most definitely a quality vs. quantity issue.

NurseDeb

[Guest guest]

In a message dated 7/30/2001 3:30:53 PM Eastern Daylight Time,

dmthompson4@... writes:

<< I just checked my last lab results and my TSH was 3.2 - within the normal

range. But I seem to recall that you need to have your " free T3 " tested,

although I can't remember why.

Hey - does this memory problem associated with Lyme encephalopathy

improve? This is really bugging me too. I'm on disability right now, which

is probably a good thing, because loss of memory is not a good trait in a

nurse.

I'll put this on my list to discuss with Dr. Thanks for the tip - your

personal experience is really very encouraging. >>

Actually, your TSH level of 3.2 will be considered " hypothyroid " pretty soon,

when the *new* test levels are incorporated. The current 4.0 or 4.5 (high)

standard used by many labs is too high, according to many endocrinologiosts,

and from patients' experience. Seems silly when you know that this " normal "

range was based on research from only 29 women- some of whom probably were

Hypo and didn't know it!

But a " normal " TSH level doesn't mean anything if the person's body isn't

converting the T4 into the T3! And that's what the " free T3 " tests are for-

to find out if your body is making use of the T4. Because even if you have a

low normal TSH, you can still be Hypo if you aren't " using " the T3.

I had memory problems, yes. I had trouble concentrating, and tended to have

sticky-notes all over my freakin' house as reminders for things, LOL.

After a month-6 weeks on the Levoxyl, I've notice a serious improvement!

Although my TSH level is now 1.8, I still don't feel " normal " yet, so I will

be discussing a T3 med with my doc next week.

-Jules

[Guest guest]

Jules,

Thank you for this info.......At some point, back around the time just

before my Lyme dx, I was reading a book entitled " America Exhausted:

Breakthrough Treastments of Fatigue & Fibromyalgia " by Edwward Conley, D.O. He

specifically addresses this issue, but to be honest.........I just completely

forgot about pursuing it.

Your story is encouraging..............especially since my busy toddler is

now a 10 y/o with ADHD (supposedly) who has also tested + for Lyme, but no

treatment yet. That's a long time to be tired <Grin>. He, too, has a lot of

sleep problems.

I just checked my last lab results and my TSH was 3.2 - within the normal

range. But I seem to recall that you need to have your " free T3 " tested,

although I can't remember why.

Hey - does this memory problem associated with Lyme encephalopathy improve?

This is really bugging me too. I'm on disability right now, which is probably

a good thing, because loss of memory is not a good trait in a nurse.

I'll put this on my list to discuss with Dr. Thanks for the tip - your

personal experience is really very encouraging.

Take care

NurseDeb

[Guest guest]

WOW! This is the first feeling of " hope " I've had for quite a while. Thank

you, thank you, THANK YOU!!!!!

I am also a serious sticky note abuser -- bought some recently that were

imprinted with the following slogan:

Today's mighty oak is yesterday's nut that held it's ground.

I also have some that read: NOTE TO SELF (are you a King of the Hill fan, by

any chance?)

I'm going to study up a bit on the ol' thyroid and may have some more questions

for you. Endocrinology was never my strong suit............

Additionally, I was just diagnoses by LLMD as having Antiphospholipid Syndrome,

or APS, and will be going on Fragmin injections (low molecular weight heparin)

and had to d/c my hormone replacement therapy. Any tips of herbals for hot

flashes/night sweats? Damn hormones are ruining my life!

Your new best friend <grin>

NurseDeb

[Guest guest]

Does anyone know how one with insomnia can fall asleep with this dreaded

disease? I was on ambien for over a year and then they took that away. Then I

got some xanax which gave me about 2 hours sleep a night. Now I have nothing.

I have tried all over the counter homeopathic things but nothing works. If

anyone knows what to do to fall asleep I would be indebted FOREVER> I have

not slept one night straight in many many months. Thanks KIM

[Guest guest]

In a message dated 7/30/2001 4:03:05 PM Eastern Daylight Time,

dmthompson4@... writes:

<< I also have some that read: NOTE TO SELF >>

Hahaaaa! Ya know, someone on this list mentioned getting checked for

's Syndrome (T3 meds only), but the general " hypothyroid " symptoms fit

me to a T. So I was fortunate that someone else on this list reminded me to

get checked!

Hang in there, and definitely check out the www.thyroid.about.com website &

message boards! There are a couple other women there with Lyme, too.

-Jules

[Guest guest]

On Mon, 30 Jul 2001 timibug2@... wrote:

> Does anyone know how one with insomnia can fall asleep with this dreaded

> disease? I was on ambien for over a year and then they took that away. Then I

> got some xanax which gave me about 2 hours sleep a night. Now I have nothing.

> I have tried all over the counter homeopathic things but nothing works. If

> anyone knows what to do to fall asleep I would be indebted FOREVER> I have

> not slept one night straight in many many months. Thanks KIM

Hi KIM:

Among the homeopathics you tried, have you evern seen Hyland's

Insomnia?? That works for me , 4 pills under the tongue - at least 4

hours stress-free and also helps to stimulate vagus(sp?) nerve and keep

heart patterns healthy in case of anxiety. Can also be used during the

day for general anxiety and muscle constriction. No medical

contraindications so can be taken with anything (including BUSPAR).

Best to you:

Glen in Beautiful Hunterdon County, NJ

===========================================

__|__ ... understanding is the light

| by which love sees.

===========================================

Swedenborg: Divine Love and Wisdom

[N. 406 (9)]

wolfsen@...

http://www.eclipse.net/~wolfsen/index.html

[Guest guest]

Try six years of no sleep............I can't help you......I've had major

sleep problems.......and have tried it all...........taking a walk, not

taking a walk, hot bath, warm bath, no bath, soothing music, aroma therapy,

everything from milk and cookies, to a shot of whiskey, to all the herbals,

to all the sedating antidepressants, sleeping pills, and heavy duty sleeping

pills............I'm currently on

Halcion..........its working, at the moment.......

Sleepless too.........

Connie nwnj

Leave no stone unturned.......and ask questions!

[Guest guest]

Glen,

Thanks for answering; I will run out tomorrow and get some. At this point I

will try anything. Thanks again KIM

[Guest guest]

To all those who were kind enough to answer about insomnia. I thank you all

for your help. I finally got an anti-inflammatory for the pain and quafenison

mixed. It has taken the edge off the pain but with or without pain I cannot

fall asleep. Ever since this disease started almost 3 years ago, I have had

insomnia. Ambien worked great for a year then they took it away. I have tried

all homeopathic meds, the baths, the walks, the everything and still I just

lay there. I feel like I am losing my mind again and I have to drag myself to

work and think everyday which is becoming more and more difficult. My memory

is shot as well. I know if I could get a descent nights sleep once in a while

it would help. Thanks again for all the support. Hugs, KIM

[Guest guest]

Hi Kim,

I don't have sleep problems very often, but when I do this relaxation tip works

for me. Get in bed and lay flat on your back. Put your arms down to your

sides. Take a few deep breaths to relax and then let your mind go empty. Then

you need to concentrate on your big toes ... picture them relaxing. Concentrate

hard on getting those toes to relax. Then go to your other toes. After they're

relaxed, go to your ankles. Then your shins, then the calves, the knees, the

thighs, etc. You get the picture. Work your way up and make sure whatever part

of your body you're concentrating on is relaxed before you move on.

Give it a shot ... can't hurt. :-)

Jean

[Guest guest]

Hi

Like Kim, I also suffer major sleep deprivation.

I've tried the full body relaxation.........in fact I put on a tape that

talks me through the entire thing.......and you are right it puts you to

sleep........I'm out before I even get half way through my body..........the

problem comes in when I wake up 30 minutes later, and then fall back to

sleep and then wake up 15 minutes later......and then an hour

later........and this goes on all night long..........When morning comes I

am completely exhausted.........The Lyme has destroyed something in my Sleep

center.........and its killing me.............

Connie nwnj

Leave no stone unturned.......and ask questions!

[Guest guest]

Connie,

That's exactly what our LLMD is doing. has been off abx since

mid-July and still gets the same problems. So LLMD wants to see

about getting the sleep problems under control and then re-test him

again for LD, etc.

Toodles,

Sal

> Lyme can also trigger Restless leg syndrome and Periodic limb

> movement............both causing disturbed sleep............without

sleep,

> you go crazy, and suffer just about all the symptoms of lyme.

> So make sure that you are get this solved...........my LLMD, took

me off

> abx.........and we worked on the sleep and found the lyme was in

remission

> and the symptoms I was continuing to suffer were not from lyme any

more but

> from sever sleep deprivation...............thanks goodness she was

smart

> enough to see that................after seeing a great

<snip>

[Guest guest]

In a message dated 10/31/2001 9:16:22 PM Eastern Standard Time,

conniek@... writes:

>

> Lyme can also trigger Restless leg syndrome

This must be what's happening to me......I wake up in the middle of the night

and just have to stretch and stretch, one night I had to actually get out of

bed and stretch my entire body.

G Jody G

O May you have enough happiness to make you sweet,

enough trials to make you strong,

enough sorrow to keep you human,

enough hope to make you happy. O

' <A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> '

[Guest guest]

,

I use the same combination...but I do take trazadone too. I still feel unrested

in the morning...but it is better than waking up feeling like you have been run

over by a truck. But it surely does help.

Cyntha Landon Lititz, PA

Re: [ ] was- do you treat them/now sleep problems

> I adore my Neurontin! I started at 100mgs, found some relief at 400mgs

,

> but had to move up to 3200mgs ( only once and only at night) to get great

> relief. I would be up all night with very bad PN/Nerve/Bone pain. Before

> the Neurontin I spent about 3-4 months with this bad insomnia from the

pain,

> I would only get a few hours sleep here and there and was miserable from

the

> pain.

> My Pain Dr has people start at 100 for a few days, then to 200 for a

> few days etc untill you reach the dose that works. Dont ever just start

at

> a high dose, or go off, Neurontin withdrawels aint fun! *-)

>

>

>

[Guest guest]

As the queen of sleepless nights........go back on the ativan. Doesn't

ativan work on the nervous system?

Perhaps your nervous system is active at night.

..........and it needs quieting down.

I have a sleep disorder, when my limbs move, which is directly related to

waking up. (PLMD) the medication for this disorder is a Parkinson's med or

anti-seizure meds.

.....or something that quiets the nerves in the body like Valium.

Valium is what I take........I've been on and off it for over a

year.........seems to work the best for me.

Try a little Benedryl.......and see if that works.

ConnieKnwnj

When our bodies & minds are out of balance.......

........we suffer!

[Guest guest]

I recently began with a mag/cal (amino acid chelate) from Schiff with good

results. I am giving it mostly to try to help with night waking, sleep

walking and anxiety. RDA has made a big difference, but I may go up from

there to help with onset and persistent anxiety. We use melatonin, but it

doesn¹t seem to be too helpful at 1 mg.

Serena

On 7/24/03 10:07 AM, " tod_s_2000 " <tod_s_2000@...> wrote:

> Hey everyone--I have tried melatonin, benadryl, and killing

> parasites, but my daughter still waits until 11:00 to go to bed, and

> she wakes up every 3- hours during the night. Any suggestions to help

> with this??

>

>

>

[Guest guest]

My daughter was on medication to help her sleep until we started the

enzymes: No-Fenol & AFP Peptizyde (we slowly worked up to 1 capsule

each at each meal). After one month, she was off medication and

sleeping fine throughout the night which was a miracle to us!

> Hey everyone--I have tried melatonin, benadryl, and killing

> parasites, but my daughter still waits until 11:00 to go to bed,

and

> she wakes up every 3- hours during the night. Any suggestions to

help

> with this??

[Guest guest]

bascially tryptophan is necessary as well

doses

http://members.tripod.com/mueller_ranges/links/compendium/tryptophan.h

tml

and tack about 2.6ug/lb lef.org time release melatonin on that.

>

> > Hey everyone--I have tried melatonin, benadryl, and killing

> > parasites, but my daughter still waits until 11:00 to go to bed,

and

> > she wakes up every 3- hours during the night. Any suggestions to

help

> > with this??

> >

> >

> >

[Guest guest]

Sleep disorders are common among those who deal with chronic pain from any

cause. The pain interfers with a person's ability to achieve deep sleep, i.e.,

REM sleep. REM sleep is necessary for mental and emotional health. Sleep

disturbances can cause extreme emotional problems, as well as the other problems

discribed by Priscilla in her superlative post on Sleep Apnea.

I have been a 'light' sleeper all of my life. For most of my life I assumed

this was just an individual difference with little consequences. Doesn't

everyone stay up for two to three days at a time without sleep?

However, I discovered that sleep deprivation from chronic pain could and did

result in extreme emotional disturbance, physical problems like fatigue and

coordination, as well as loss of mental abilities, e.g., memory, concentration,

etc.

It took my doctors some 15 years to diagnose me with Reactive Arthritis, aka,

Reiters Syndrome. It took another 20 years for them to figure out that many of

my problems were caused by chronic pain induced sleep disturbance.

I won't go into the long story; just tell you what I do now to control the

problem. Of course, the first thing that has to be done is get in control of

the chronic pain. I am on a pain management plan that seems to be working

better than any other " plan " my doctors tried in the past. Most recently my

pain clinic doctor has prescribed 20 mg of oxycontin every 8 hours, Flexeril

(cyclobenzaprine) 10 mg three to four times a day for muscle spasms, and

Darvocet N100 (100 mg Darvon + 650 mg of Tylenol), a maximum of 5 tablets daily

usually two in the AM, two in the afternoon, and one at night. This keeps me

active on most days within parameters, i.e., I still can't run the mile in less

than...ahh, I can't run the mile in any reportable length of time!

I began taking Ambien 5 mg to 10 mg at bedtime about seven years ago. I do not

take it every night, though I do get a much better type of sleep when I do.

Ambien induces sleep, but does not keep you asleep, especially if you are in

great pain. For several years I took Trazadone 150 mg to maintain deep sleep.

I can still get the prescription, but my wife does not like the fact that I am

not able to rise in the mornings and help the children get ready for school when

I am taking it. The effects of the Ambien wear off, for me, in less than four

hours, hence the extra 5 mg when needed.

Even with the medications I am often awake for most of the night. I usually do

get to sleep by 1 AM and am ready to get up by 5 AM. If I take my next dose of

pain meds at that time I can grab another 2 to 3 hours of good sleep. Sometimes

I do take a nap following the afternoon medications but try to time it so that

I'm up and awake by the time the kids get home from school at 4 PM. Naps are

directly related to the amount of physical labor I do, as well as the level of

pain I am having to endure.

This won't work this year since the youngest grandchild will be in Kindergarten

and must be picked up at 1 PM, then I must pick up two other grandchildren at

two different school at 2:45, and my own 14 year old daughter at 3:30. No buses

for my kids this year. We live too close to the schools, i.e., less than 2

miles. But no one would let their child cross an extremely busy interstate exit

area bordered by major stores like Walmart, Sams, restaurants, and a 160 store

mall! Like I'm going to let my kids walk on heavily traveled roads that far in

this day and age!!! What a mixed up city we have moved to! I simply cannot

believe that our kids are expected to walk or we are expected to drive them,

given the amount of taxation we must pay on our property. BUt, I digress. Back

to our topic!

Since beginning the Effexor (a dual acting antidepressant) in January I have not

needed naps during the day as often as previously. Though I still endure the

chronic fatigue daily, it, too, has been lessened by the Effexor. It has also

made it possible for me to skip Ambien on some days, or only take 5 mg instead

of 10 mg at bedtime. Effexor has also reduced the amount and types of

medications I am taking...except for the oxycontin. I have had to increase the

oxycontin, but have been able to reduce the Flexeril since the muscular spasms

have been lessened by the Effexor also.

I would go into greater detail about the emotional problems that sleep

disturbance can cause, but I do not like talking about my own experiences in

that area of pain management. Suffice it to say that lack of sleep in the past

has made life a living h... for me and for my beloved family.

There is no longer any question in our minds that high levels of pain can bring

on emotional disturbance that, unless treated, can destroy a happy family. Not

many wives would have stayed with a husband through the problems chronic pain

has caused for our marriage and our children, much less for myself. I cannot

emphasize enough the importance of getting appropriate and adequate pain

managment and sleep therapy.

Chronic pain and its consequences can destroy your career, your family life,

your marriage, and you. Get help! Keep knocking on doors until someone

answers! Be persistent and aggressive in claiming the assistance you need to

control the pain, the disturbed sleep, and whatever else the pain screws up for

you.

Ray Neal, moderator

[Guest guest]

I have been diagnosed with structural and central sleep apnea.

The structural was partially repaired by operating on my septum...

something I will NEVER do again.

Also I have had several sleep studies and the last one they decided to try

and fit me for the C-pap... It was an experience that frightened me

horribly. For some reason I am totally beyond terrified of that thing. I

suspect something happened earlier in my life...like putting a hand over

my nose and mouth and holding me down somehow. I'm going to be working

with this with my neurofeedback therapist.

The air rushing in feels like it is smothering me.. and my ears get all

plugged and pop and it is just horrible for me. I know i need it but.. I

just start getting a panic attack every time I think about it. It took

weeks before I could even drive past the hospital where I had that

nightmarish sleep study where they forced me to wear the thing for 6 or 7

hours all night.....

Anyway-- with that joyful post.. I shall cease and desist for now.....

I'm just trying to lose weight and maybe the sleep apnea will get better

too....

Liz

~~~~~~

" The truly creative mind in any field is no more than this: A

human creature born (extraordinarily) sensitive. To him/her a touch is a

blow, a sound is a noise, a misfortune is a tragedy, a joy is an ecstasy,

a friend is a lover, and failure is death.--Pearl S. Buck

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