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kellybell73

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Fear of sleep
Jan 4^th, 2010 at 8:10pm

Hi Guys. I am new hear but already posted on the newbie board most of my story. I am gearing up for another night of fear related to going to sleep or laying down more specifically.
Just wondering if any of you have had the same fear and if so how you deal with 1. the fear of laying down related to CH or 2. the actually logistics of avoiding hits at night ,which seem to be my worst, through positioning or preventative meds etc.? Any thoughts welcome.
Kellybell73 Huh

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Kirk CH.com Alumnus Offline VINIMUS, VIDIMUS, DOLAVIMUS Posts: 2393 Harts Lake, WA Gender:	Re: Fear of sleep Reply #1 - Jan 4^th, 2010 at 8:32pm *I'll try to answer this for you on your other thread, rather than here in general posts.*
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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: Fear of sleep Reply #2 - Jan 4^th, 2010 at 8:38pm I certainly have that fear but I just do the best I can to manage it. For me: 1. 9 Mg of melatonin 2. Abortive close at hand. Other than staying on course with a preventative thats about the best I can do.
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jon019

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Re: Fear of sleep
Reply #3 - Jan 4^th, 2010 at 9:18pm

Hiya,

Doubt there are many here who haven't felt the same at some time or another....

Here's what I do:

Attitude adjustment: I USED to react VIOLENTLY...after all, this is a particularly cruel trick of the beast...just when you want and NEED a respite to fight another day...you are not allowed. I screamed, cried, danced, cursed, pounded my head, pounded whatever.....Then, I finally figured....where is this getting me? Answer...in a WORSE place. Sooooo, now...

I accept it is going to happen...I mentally PREPARE for it...I WILL remain calm....I will NOT fully wake up (no thinking)....hit the O2 (ready, willing, AND able right next to the bed)...abort the hit and go back to sleep. Rather than being ticked that I have been woken up, I am grateful for the one hour I got and the next hour I am going to get until the next one...

Sometimes, when I know what kind of cycle I'm in...I'll pound an energy drink right before bed. Must have adjusted to the caffeine, because it does not keep me awake....

That and the 9-15 mg of melatonin I take....which in my case does not prevent night hits but DOES keep me groggy enough to fall back to sleep quickly....

Have also played around with timing of the verapamil I take (960 mg/dy)....not really sucessfully, but worth a try for you....

Best,

Jon (MVHS '73)

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kellybell73 CH.com Newbie Offline I Love CH.com! Posts: 14	Re: Fear of sleep Reply #4 - Jan 4^th, 2010 at 10:38pm Thanks for all the replies. I am new to the message board so I will try to put my posts where they belong from now on . AGAIN IT IS GREAT TO KNOW THAT i AM NOT ALONE ANY MORE . Thanks
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Callico

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Re: Fear of sleep
Reply #5 - Jan 4^th, 2010 at 10:46pm

You did nothing wrong in your posting. Some areas are more suited for specific questions or comments, but the general board can take general questions, sort of a catch all.

Personally, I don't tend to get the wakeup hits if I wait until I know I am through for the night. After 30 plus years I get a pretty good feel for when I am done, and will go to bed after that. If I must get some sleep and don't think I'm through yet I'll sleep in my lazy-boy sitting up somewhat so that i don't sleep really soundly. I don't tend to get woken up so badly, or if I do I'm not so soundly asleep that I can't deal with it.

Some use Melatonin or Benedril to keep from the REM cycle, but it doesn't work for me.

Glad you found us.

Jerry

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Jeannie

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Re: Fear of sleep
Reply #6 - Jan 5^th, 2010 at 9:04am

Kelly,

My hits are mostly at night. I know exactly how you are feeling.

I try to position myself on the couch when trying to get some sleep. My pain is right sided so I sleep on my left side, propped up sort of sitting rather than lying down. I also take Benadryl before going to bed. It gives me a few hours.....usually.

Having 02 has made a HUGE difference in the fear I experience. Knowing that it is just a few feet away and can relieve my pain helps a great deal in the fear that goes along with CH. Do you have 02?

PF wishes,

Jeannie

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« Last Edit: Jan 5^th, 2010 at 9:05am by Jeannie »

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Charlie

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Re: Fear of sleep
Reply #7 - Jan 5^th, 2010 at 5:21pm

You're not along with your fear of sleep. I'd be awakened almost regularly after 1-1/2 hours after falling asleep and headed for the kitchen until it subsided. I'd be hit again once more in the night. Sometimes, my sleeping in a recliner would cut out the second hit. Evidently not being flat had something to do with it.

Good luck and no problem posting here.

Charlie

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Lacey

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Re: Fear of sleep
Reply #8 - Jan 5^th, 2010 at 6:17pm

I have always gotten the night hits. So I know where you're coming from. 1 thing i learned to do is never get in a "lying position" during my cycle. Always seemed if i did, the hits were more intense. So propping with 2 or 3 pillows almost sitting was good.

This site that I just joined around Dec 11th taught me about the melatonin. I started with 6mg and decided that wasn't enough to keep me "groggy" so i upped that to 12mgs during cycle. Like jon posted, just being groggy enough to fall back asleep.

When that hit comes..grab some sort of energy drink and slam it.

If im exhausted from previous nights, I go ahead and get a trex injection because the quicker i get that in me, the quicker im out of pain. Please note, DON'T MIX TRIPTANS. It's 1 or the other for 24hrs as MY rule. Im not sure of the exact professional timing on mixing those, just know what rule i try to stick to.

Also, if ive had some pretty hard shadows late evening, and i just have a feeling when its gonna be a bad night, ill go ahead and take half of either a zomig or imitrex tablet (again, 1 or the other, don't mix)before i try to sleep and MOST of the time, i dont get the night hit.

For my next cycle, I have O2 lined up. I've heard enough testimony to be a believer.

Good luck

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anthony g CH.com Old Timer Offline I Love CH.com! Posts: 318 manhattan nyc Gender:	Re: Fear of sleep Reply #9 - Jan 5^th, 2010 at 6:32pm really good advice lacey! thanx! while in cycle i also take a half of sumatriptan tab which would be 50mg before sleep! helps me not get hit im convinced! i know alot say sumatritan is not really used for prevent but whatever works on controling the" BEAST" is what its all about!!!
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Kirk

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Re: Fear of sleep
Reply #10 - Jan 6^th, 2010 at 1:21am

Sorry if I gave you the wrong impression, this is a perfectly fine place to post your question. I'm chronic, and in high cycle myself right now and should take an extra moment or two before I hit the post message button. It doesn't always come out the way I meant it to.
At night 12 mg of Melatonin and a 5 Hour energy drink before bed. He'll come for me in about an hour, two if I'm lucky. Grab the O2 and suck er down. takes 5 to 7 minutes and its back to sleep. If he comes back in an hour, I go to the living room and sit in the Lazy Boy with my mask, and when he wakes me on the hour I hit him with the O2 and nap for another hour. Morning comes soon enough. For some reason I'm not bothered so much during the day. Other people aren't so lucky. Melatonin, 5 Hour energy and 25 LPM O2 (Min.) are all that I can use. I've heard Kudzu works well for some folks, but I'm not knowledgeable in its use.

Smiley

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burnt-toast

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Re: Fear of sleep
Reply #11 - Jan 8^th, 2010 at 8:29pm

Fear of resting/relaxing at the end of a day, sleep, and naps had become a major problem for me. At points I was near total exhaustion because I would find any reason to stay active.

Melatonin helped, but through my Neurologist I've obtained a long term prescription for ZOLDIPEM (generic for AMBIEN).

To be clear ZOLDIPEM doesn't block attacks but it makes me drowsy enough to consistently fall asleep rapidly between attacks. It helps provide sleep that I had been unable to obtain in the past.

You may want to discuss this with your Neurologist.

burnt-toast
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.

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