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        New Message Board Archives >> Jan-Mar 2003 >> Re: Newbee: Afraid to Sleep
        
(Message started by: Frank on Feb 17^th, 2003, 11:23pm)

Title: Re: Newbee: Afraid to Sleep
Post by Frank on Feb 17^th, 2003, 11:23pm

The past few weeks I have found myself staying up later at night too... afraid to go to sleep. One or two precious minutes sometimes makes all the difference though. I keep a O2 tank right next to my bed... I can turn it on and grab the mask without even getting out of bed.

Title: Re: Newbee: Afraid to Sleep
Post by Charlie on Feb 17^th, 2003, 11:39pm

Sorry you're getting hit. One thing I did was to sleep in the recliner. Most of the time it cut down the attacks by one anyway.

Just an idea.

Charlie

Title: Re: Newbee: Afraid to Sleep
Post by paul_b on Feb 18^th, 2003, 12:00am

I am not a deep sleeper so O2 and Im worked as well as anything but when I was seeking help on this site, two other triptans were mentioned. Check the OUCH site to see if they might work with your body chemistry.

Title: Re: Newbee: Afraid to Sleep
Post by Dave_Emond on Feb 18^th, 2003, 12:18am

Although I hate nights myself as well, the suggestion about sleeping in a recliner is a good one. I even suggest a pillow that wraps around your neck to help stabilize you in postition will help somewhat.
Check out my post on Melatonin, I think it keeps you alseep through some attacks, although shadows in the morning seem tougher, but ... at least better to maybe skip a few (not all) full blown waking attacks at night.
Worth a shot, good luck,
Dave

Title: Re: Newbee: Afraid to Sleep
Post by Roxy on Feb 18^th, 2003, 12:19am

Personally, I think 6 hrs. sleep would be a miracle. I hope you achieve that goal. And if you do, please tell me how you are doing it.

I'm sorry you are being hit. But, in my experience, when a ch wakes you up....you are already in it pretty deep. The imitrex works for me...actually, rather fast, 10-15 minutes, or so I'm told. It just seems like hours rather than minutes >:(.

I've tried everything they have suggested on the site...sleeping sitting up, backwards, on my head, outside....etc... Doesn't do it for me, but it may work for you.

Hope it gets better for you,

Tracey

Title: Re: Newbee: Afraid to Sleep
Post by suzy617 on Feb 18^th, 2003, 4:59am

Sorry your in so much pain Rico. (Roxy girl, you too) I've heard in here that some take Benedryl to avoid going into REM sleep which will help to avoid that nasty CH in the middle of the night. Its not recommended to do often but if it can help you once in awhile to get some straight sleep, it might be worth a try.

Hoping PF time is right around the corner for you,

suzy

Title: Re: Newbee: Afraid to Sleep
Post by marty on Feb 18^th, 2003, 5:59am

Hi Rico..

To bad "the beast" is keeping you up at night..

Sleep deprivasion is the worst part of CH (my opinion) since it drains you so much.

As to the employer, they usually have "headaches" to - only, they take two tylenols and it takes care of it for them so it can be hard to make them understand. On the UK OUCH site there is a "letter to the employer" that you may want to use. Also, check out the FMLA - I am on FMLA and it is a god thing for me since I can call off work when in cycle and the night has been rough.

Hang in there

Marty

Title: Re: Newbee: Afraid to Sleep
Post by echo on Feb 18^th, 2003, 11:34am

Must agree that the lack of sleep caused by morning visits can raise hell with ones attitude and dedication to job.

I too have been far to frequently visited here of late in the wee hours of the morning. Seems to really like 4:30AM, does not matter what time I have gone to bed it's 4:30 party time.

Getting tired of people stepping on or tripping over my ass which is presently dragging along several feet behind me.

Title: Re: Newbee: Afraid to Sleep
Post by west17m on Feb 18^th, 2003, 11:34am

Personally, I use verapamil during cycles. I'm not sure what the half-life is but 600mg seems to keep me PF for 6 hours. If I try to stay in bed for 6-8 though I'm guaranteed to wake up with the beast. Needless to say, a good night sleep followed by a shot, pill, or nasal spritzer in the morning isn't the worst way to go.

Once again, no doc here (yet - 4 yrs to go) so this isn't a script ;)

-- Tag

Title: Re: Newbee: Afraid to Sleep
Post by Ann on Feb 18^th, 2003, 1:46pm

Hi Rico!

While verapamil is a great preventative, it takes a few weeks to kick in and you sometimes need to re-adjust the dosage until you get it right. Regular release is best according to Doc. Goadsby.

When in cycle I always take a 2.5 mg Amerge (triptan) before bedtime. It has a half life of 4 hours, if I'm not mistaken. This allows me to get a full night's sleep. I wake up groggy as hell in the morning, but I don't get hit at night anymore. Eventually I'm able to taper it down to 1/2 a pill a night until my cycle is over. I end up getting hit during the day, but those precious hours of sleep at night make it sooooo much easier to deal with.

I hope this helps and that you start feeling better real soon!

hugs
Ann

Title: Re: Newbee: Afraid to Sleep
Post by Georgia on Feb 19^th, 2003, 12:23am

I used to be of the mindset that sleep was for wussies. I went through almost two years with an average of 3 hours a week when I was having a good week. It started out simply...I was afraid to sleep. Then I honestly believe it turned into a gigantic subconcious block that sleep was the enemy...and after a while, even when I wanted to sleep, I couldn't...no matter what I did...sleeping pills, loads of alcohol, loads of alcohol with sleeping pills, horse tranquilizers, Enya, talking on the phone with Den until the sunrise...nothing worked.

On the upside, sleep deprivation can be really fun. After a while, everything becomes really funny; you start having hallucinations..which can turn into endless hours of entertaining converstaions with simple things like the faeries that live on the plant in your dining room, or the posters on your wall; you get lots and lots of things accomplished around the house...like making candles from the wax drippings of the candle you are burning (HINT: put a wick in the new candle you are making, otherwise you just end up with a dozen or so blocks of wax shaped like plastic cups); you can make lots of new friends at the 24 hour gas station/convenience store; the sunrise is really pretty; you can take your cats for walks at 3 am on leashes and not get so many funny looks from people passing by; you can listen to the entire Art Bell show everynight (although Art has gone off the air now and has been replaced by George Norey...still a damn good show); vampires will become your friends; when you get bored and call people at all hours of the night and day, they will think you really must like them and they will love to get out of bed and talk to you and you will have so many friends you just won't know what to do with yourself....plus you won't remember anything bad that you or they said or did or argued about and that way they think you are just a very forgiving person; you can go hunting for nocturnal bugs without losing sleep; you will learn all the habits of everyone on the block, the police, the bus schedule, the lady that lives above you; you develop these nifty little bags and circles under your eyes which makes dressing up like a gothic really easy; and the beast can never ever wake you while sleeping.

Now if that isn't appetizing enough, I guess you could try taking Dramamine or Benedryl before bedtime or maybe even talk to your neuro about getting on a preventative while you are in cycle. But that's the easy way out.

I must admit though that I have been sleeping lately. Almost six hours every night. I know, I know....I'm a girl thingy. But my theory is holding very true: Sleep only makes you more tired...you get some, and suddenly your body wants more and more and more and more...greedy little junkies that our bodies are.

And if you are wondering what changed my sleeping habits...uhhh....I don't know the answer to that other than that maybe it's because I moved to Texas to be with the man I love and now instead of fearing sleep...I have this fantasy that his arms wrapped around me tight enough can fend off that bastard of a beast or maybe that having someone to go through them with makes them not seem so bad when they do wake me up...what can I say, I'm a dreamer.......

Peace and love and pain free nights and days,
Georgia

P.S. Den said that he is not willing to travel all over the world or even the country to help people get sleep. Sorry for the bad news.

Title: Re: Newbee: Afraid to Sleep
Post by Charlie on Feb 19^th, 2003, 5:07am

Thanks Georgia and you sound like the old deeply disturbed gentlebeing of old.

For old twisted geezers like me and Den, it's important we get input from you 45 year olds. Keeps us young. :o

Charlie 8)

Title: Re: Newbee: Afraid to Sleep
Post by BobG on Feb 19^th, 2003, 3:23pm

Art Bell?

That space alien fruitcake lives a few miles from me in a little shit-hole town and broadcasts from the bedroom of his doublewide.

I used to work with a guy that actually believed everything Art said "If it's on the late-late radio it must be true or they couldn't say it. He has to broadcast during the the late night so the communists can't track him down".

The world is full of interesting weirdos.

Title: Re: Newbee: Afraid to Sleep
Post by oringkid on Feb 19^th, 2003, 3:44pm

Hey BobG, sounds like some of the people who live in my neighborhood....Where exactly??? Wouldn't be here in Mohave Valley would it??

Sherry ;D

Title: Re: Newbee: Afraid to Sleep
Post by BobG on Feb 19^th, 2003, 5:05pm

Sherry....Art lives in Pahrump, Nevada. It's the closest town to the Nevada Test Site. He's been breathing the radioactive dust for too many years.

I do understand what you're saying about the Mohave Valley. I spent a week there one day.

Title: Re: Newbee: Afraid to Sleep
Post by oringkid on Feb 19^th, 2003, 5:42pm

LOL Bob!!!!!!

Sooooo True!!

Sher