Re: Sleep? Is anyone sleeping???

[Guest guest]

I've had sleep problems for years and started taking Trazodone (Desyrel)

for almost 3 years. It works wonderfully and has few side effects for

me.

Also, good pillows are a must have. I have to sleep with one between

my knees and the ones under my head are in an upside down T (bottom one

up and down, top one in regular position).

Good luck!

Laure

>

> Hi guys, been a long time since I posted. I want to know, for those

> of you who have trouble sleeping, what are you doing? Is there a

> prescription that is working well for you? I have a tethered cord,

> which is making me have to visit the bathroom all night long. I'm

> taking Ditropan, which used to help but isn't really doing much

> anymore. Either that, or the TC symptoms are getting worse. The lack

> of sleep is starting to take its toll, but I'm worried about side

> effects and cost. Also, if you're taking something that may work

> better than Ditropan I'd love to hear about it.

> in Baltimore

>

[Guest guest]

I've had sleep problems for years and started taking Trazodone (Desyrel) for

almost 3 years. It works wonderfully and has few side effects for me.

Also, good pillows are a must have. I have to sleep with one between my

knees and the ones under my head are in an upside down T (bottom one up and

down, top one in regular position).

Good luck!

Laure

Kathleen's response:

I've suffered from insomnia since 1990. I came home from the hospital and

couldn't sleep. I've had bouts of severe sleep depravation in those 18

years. I took Trazodone for a long time and I became dependant, it just

wouldn't work anymore so my pcp prescribed Ambien CR and I've taken that

every night for about three years now.

Sleep is so important, and when I don't get it my symptoms run wild.

I even tried self hypnosis for while, but got out of the habit of using it.

Sometimes the sleep meds don't work so I do use La Maze exercises that I

learned before having babies. They relax me, I still might not sleep, but

I'm able to rest comfortably.

I've had 3 sleep studies show that I don't sleep, and when I finally do, the

apnea kicks in.

My pcp said she would rather see me take a sleep aid every night than to not

sleep.

Kathleen

Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed

with craniocervical instability, Ehlers Danlos, and Tethered Cord Syndrome,

surgery for everything but EDS since 1998.

http://chiariconnectioninternational.com/

[Guest guest]

i have a lot of trouble sleeping. i take lunesta-it helps me to get

to sleep & stay asleep-and the best part is that the headaches dont

seem to break through very easily. if i dont take it then my

headaches wont let me get to sleep for a loooong time & when i do

fall asleep the headaches just seem to be so strong that they wake me

up!

this is from my personal experience though-not everyone likes

sleeping pills & i think some ppl worry about them-i cant remember

for sure but i remember someone was not sure about the them.

anyway, good luck!

hugs,

shannon 26, east stroudsburg, pa

apr '01 decompression in philly

feb '03 revision of decomp & fusion to c4 (done in same surgery) @ TCI

jul '03 vp shunt placed @ TCI

jan '05 shunt valve replaced @ TCI

1/31/07 fusion revision down to c6

>

>

>

> >

> > Hi guys, been a long time since I posted. I want to know, for

those

> > of you who have trouble sleeping, what are you doing?

[Guest guest]

No, not sleeping. Sorry to hear it happens to others.

Before my decompression 5 years ago, I had a sleep

study that noted apnea.

I had a sleep study again recently and the good news

was no apnea, no restless/jerky legs. But, the bad

news was they confirmed that I don't get REM sleep,

almost all night. I only get light sleep, then awake,

light sleep, then awake. I hit REM sleep around 4 am

which I knew already. they just put words to what I

already knew. So, in essence, I get about 2 hours

sleep per night if I have to get up at 6 to go to

work.

Its a weird waking up thing. I saw the graph -- light

sleep, fast spike up wide awake, drfit down then wide

awake, down, awake, down, awake, down, awake. Not

anxiety, not worrying,not caffeine, just waking up. I

got back to sleep in 10-30 minutes. I have had this

in various forms all my life. I even wake up when I

take sleep meds.

The sleep specialist this week suggested what to me

sounded like a dangerous combination of

anti-depressants, sleep meds and pain killers, taken

separately or together. This was the day after they

listed what that actor was taking that killed him.

Needless to say I did not fill the scrips. I plan to

chat with the doc again this week and ask about Plan

B.

I have tried numerous alternatives and vitamins. nada.

Hypnosis, helped a little to learn to fall asleep

faster. Even counseling, got a few things off my chest

but it did not change th sleep patterns.

The last few nights, the meds for a sinus infection

have put me out, but that is not a long term remedy.

No solutions, just commiseration.

Hanna

________________________________________________________________________________\

____

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs

[Guest guest]

Yes, Heath Ledgers death was sooo tragic.

His meds would be so like many of our meds as ACM's.....

antidepressents, as we have been suffled for more years and doctors then we like

to remember, thus we become depressed............normal reaction.

then we are in pain, so we find we are prescribed pain meds, be it for migraine

(which are strong meds in themselves)

following that, because we wake up consistantly throughout the night ( and

suffer during the day hours) from high IC or low IC pressure in our heads, we

are then prescribed sleeping tablets, or God forbid get something that is meant

to be safe, RESTIVATE from over the Pharmacy counter.

Here we have sadly Heath Ledgers prescriptions all in our own hands and

households!!!

You are so very wise not to fill the prescriptions and to ask Dr. B. his advice.

People suffering from ACM have enough to deal with wiithout an overdoes of

prescribed meds from ignorant / little informed doctors. Biddy. ACM1 Posterior

Fossa Decompression with Duraplasty, Sub-Occipital Craniectomy, Partial C1

Laminectomy. 2006.

To: @...: hpsundance@...:

Sat, 9 Feb 2008 07:21:54 -0800Subject: Re: Re:

Sleep? Is anyone sleeping???

No, not sleeping. Sorry to hear it happens to others. Before my decompression 5

years ago,

[Guest guest]

Hi,

I've had pretty much exactly what Hanna just described since I was about 18.

First it would take me hours to fall asleep no matter how calm I was. I would

just lie there with my eyes closed completely conscious and aware of every

little sound that took place around me. Even my wrist watch ticking was

amplified... like TICK TICK TICK

Then when I would fall asleep I would wake up frequently, maybe every 45

minutes, and then no matter how tired I was both physically and mentally it

would be a gamble as to whether or not I would fall asleep again that night.

I would honestly get maybe 6 hours of sleep a week and this would go on and

on... honestly I think my last year of high school and the 3 years of College

that I completed were spent sleeping at the most 10 hours a week and I doubt

very much of that was spent in REM sleep.

4 years of that and I was basically the walking dead. I didn't know who or

where I was most of the time... everything was just a confusing blur.

I had a sleep study done which basically just put into medical terminology what

I already knew with no real advice about any solutions.

Just living without sleeping was definitely not a possibility. I simply could

not function without sleeping.

So I've simply established a sleeping schedule for myself that has been working

great for the last few years. This was before and after my decompression

surgery.

I need sleeping pills. I really don't care what anybody has to say about them

being addictive or the possible future problems that they may cause or any of

that. I know how sick I get when I don't sleep so it's kind of a catch 22.

I take 5mg of Imovane and 1mg of Clonazepam every night. I take it at the same

time just about every night. I've learned that my body likes to sleep from

about 10:30PM till about 7:00am. I meditate twice daily... 10 minutes in the

morning and 10 minutes at night after dinner. I also take a nice long hot

shower at night about two hours before bed. After my shower I don't do anything

too physically or mentally stimulating. Those two hours before bed are for

relaxing in whatever way I feel fit to do so.

This isn't a guaranteed cure. I still have some nights where I don't sleep but

they are very few and far between in regards to how they used to be. Most

nights now I find that my body needs and gets about 8-9 hours of sleep. I guess

I'm still trying to catch up with all that I've missed over the years.

I'm only 29 so I've still got a long life ahead of me. Before my operation I

was completely disabled. These days my health is still slowly but steadily

improving. So maybe if anybody on this board was/is in the type of shape that I

was in when I wasn't sleeping then maybe some of what I do for myself might help

you.

Mike