starting to catch on? you can never really sleep while in a cycle? ive been reading, alot. if the beast hits more at nigth, with sleep and the not producing enough melatonin, just stay awake as long as possible? i'm trying guys, i am.

Fact is Chris the body can't go very long without sleep.  For me, lack of regular sleep only makes things worse.  

See once my prevent is up to a theraputic level I don't get many night hits.  But if I miss a few hours of sleep ... well then things kinda get out of balance again.  The beast loves a lack of balance.

Having said that, remember, everyone is different...

-Dennis-

You're looking good, Chris!

One thing that I tried, and it worked well for me for a while, is try sleeping on the floor, or in your recliner or something other than your bed.  My theory was (and it may be totally screwed up and out in left field) that by NOT sleeping in your bed, you would not sleep as deeply, and maybe not reach the REM stage of sleep as quickly, and therefore not have as many, or severe hits.

I have done it so much, that it does not work as well, because, according to my theory, I can sleep just as soundly on the floor, in my computer chair, or even in one of my wooden kitchen chairs, that I DO sleep soundly, and DO reach the REM stage of sleep.

BUT, it did work for a while!

A side bar to this, I get hit so often, that I have now trained my body so that as long as I get 3 hours sleep, during a 24 hour period, I am fine.

Either that, or I am just to old, mean and crotchety to sleep!  LOL

Chuck

Try to sleep at night, and if you do have to dance, once the beast has left try to get to sleep again.
The next day try to go to bed a little earlier to catch up.
I definately would not try to catch up with my sleep during the day, I have in the past, and within 15/20 mins of waking up, the beast hits again....

ClusterChuck wrote on Nov 8^th, 2008 at 3:38pm:

Either that, or I am just to old, mean and crotchety to sleep!  LOL

Yea... I'm going with that  :P

-Dennis-

Chris, I try and get as much sleep as possible while in cycle, as some nights maybe as little as one to two hours worth but I will take it.
Like Dennis, my prevent (Verapamil) takes care of most of my hits, but if I miss taking the verap or off balance my system, then WHAM!!! [smiley=hammer.gif]
Keep reading and learning, we are here for you. :)

does seratonin have anything to do with the beast? because, hear me out, when i did alot of extacy years ago i went a year w/out a visit from the beast. this was after my last "roll" (dose of x). i did it for a summer and then it was a year before he returned. a doc i was seeing told me that MDMA did have tharaputic uses. just a question.

I've tried messing with my sleep in this cycle since I get hit more at night.  So far I haven't found any trick, unfortunately.  I have no idea when and how I get to sleep through the night.

I've never had any kind of a "sleep pattern" all my life.  When my body needs sleep, that's when I sleep however long I need to.  While I was in long remission in the past few years, my sleep was more messed up than ever for a certain reason and by choice.

This time I've added melatonin, currently 12 mg.  CH doesn't wake me up maybe once a week, and that's about it.  I've tried setting the alarm to avoid the first REM sleep which never worked!  CH wakes me up anyway whenever I have the "first" REM phase. My next experiment was to vary the "bed time".  No matter what time I go to bed (10 PM, 3 AM, 7 AM, whatever), CH wakes me up anyway in 1.5-2 hours of falling asleep.

Many find "keeping a regular sleep" is essential, and adding melatonin helps lessen the night time attacks.

To answer your question........"stay awake as long as possible" does work for me to a certain extent.  Not a recommended method, I would imagine.

Seratonin has a lot to do with it.  Lots of the meds we use mimick seratonin and bind to various receptors in the brain.  Keep reading...

BTW: In no way am I suggesting that rolling is a good choice.  Stick with the less mind altering options.  They're much more effective and have fewer side effects.  Ex can really f you up.  Besides, no one looks good with a binky hanging out of their mouth.

-Dennis-

my brain can't afford to look at another hit of x. i wasn't implying that. i was just wondering about seratonin, since i was learning about how our brains don't produce enough melatonin. that was it. im trying to get clean after 20 years yall. its been a drug induced haze. not cool. i barely remember watching my son being born, and i was standing right there.

ClusterChuck wrote on Nov 8^th, 2008 at 3:38pm:

One thing that I tried, and it worked well for me for a while, is try sleeping on the floor, or in your recliner or something other than your bed.  My theory was (and it may be totally screwed up and out in left field) that by NOT sleeping in your bed, you would not sleep as deeply, and maybe not reach the REM stage of sleep as quickly, and therefore not have as many, or severe hits.

Funny you mentioned it, Chuck........I kind of hesitated to share my theory.

My computer chair is sort of a lounge chair that can be flattened (kinda makes a bed since it's full-length).  I often pass out at my desk since it's reclined and comfy.  I don't sleep TOO well on this chair, but I rarely get a CH. I tried a different bed, and CH wakes me up less frequently.

One theory for me, is to keep my head slightly elevated, or sleep in different spots where I'm not in my usual bad "sleep posture", namely on my stomach.  I think that helps the blood circulation in my bad neck & shoulder on the cluster side.  What I've found out is that when my neck & shoulder are tight and rock-hard, I get more attacks or end up with a nagging shadow all day long that can explode with a slightest trigger.

my girlfriend is not gonna like this one. me not sleeping in bed next to her.. not gonna be good in my house. im gonna try sleeping on the couch tonight. ive got plywood under the cusions.

ChefChris wrote on Nov 8^th, 2008 at 4:14pm:

my brain can't afford to look at another hit of x. i wasn't implying that. i was just wondering about seratonin, since i was learning about how our brains don't produce enough melatonin. that was it. im trying to get clean after 20 years yall. its been a drug induced haze. not cool. i barely remember watching my son being born, and i was standing right there.

Keep reading Chris, you're doing fine  8-)

-Dennis-

ChefChris wrote on Nov 8^th, 2008 at 4:19pm:

my girlfriend is not gonna like this one. me not sleeping in bed next to her.. not gonna be good in my house. im gonna try sleeping on the couch tonight. ive got plywood under the cusions.

You gotta do what you gotta do.  Your girlfriend should understand.  

i didnt say she has to like it. if it keeps the beast away then fuck it, im sleepn' in the "dog house" :)

ChefChris wrote on Nov 8^th, 2008 at 4:19pm:

my girlfriend is not gonna like this one. me not sleeping in bed next to her.

Take care of the "nookie" first, and THEN go sleep on the couch ...  Do it well enough, and she will be so exhausted, she won't notice you aren't there ...

Chuck, the sex therapist

:)

i havent had sex since this cycle started, now that i think about it. sometimes its a trigger for me. sound crazy? its true.

ClusterChuck wrote on Nov 8^th, 2008 at 4:37pm:

ChefChris wrote on Nov 8th, 2008 at 4:19pm: my girlfriend is not gonna like this one. me not sleeping in bed next to her. Take care of the "nookie" first, and THEN go sleep on the couch ...  Do it well enough, and she will be so exhausted, she won't notice you aren't there ... Chuck, the sex therapist

LMFAO  ;D

ChefChris wrote on Nov 8^th, 2008 at 4:40pm:

sometimes its a trigger for me. sound crazy? its true.

An orgasm has always been one of the few things that are a trigger for me.  My VERY first attack, was right after the "Magic Moment"

But since then, I keep testing it (just for scientific purposes, mind you) to see if it still is a trigger ... So far, it is, but I will keep testing it to make sure ...

Researcher Chuck

i can't wait til this cycle is over. and i KNOW she is ready for it to be to. she hasn't had any lovn' except for a hug, kiss and and i love you everyday. but she is a strong woman, a good woman who understands what is going on with me. one of the few on the "outside". and she's only 23. thats crazy. just crazy. but i love her so much. she is my angel. God put us together for a reason, im sure of it!! id be dead if it wasnt for her. she is my rock. for the first time in my life i have someone who cares right beside me. after a dance ill get in bed and she'll roll over and try to cuddle with me and ask if im ok, if i need anything. a truly amazing woman.

Nothing beats a good loving supporter!  She has a harder job, than we do, if you can believe it!

She should sign up on the board too.  There is a special section here for the supporters.  She would get a lot out of it, AND she can talk with those that are in the same boat as she is.

Treat her well, and treasure her.

Chuck

i tell her EVERY day in a cycle or not how special she is and how much she means to me. im a blessed man in that aspect.

Angie, my wife, is my rock and best supporter :) Your girlfriend can talk to her any time she wants, it really helps.

how would kelsey go about that, because sometimes she gets over whelmed.

Have her sign up as a member the way you did. Then she can talk or not, her call. No pressure. :)

Kelsey will be more than welcomed.

sometimes she just breaks down and cries because she has to sit back and watch me go through my dance with the deamon and knows she cant do a fucking thing to help me. she'll cry and cry and cry. it makes me feel bad. because i see the woman i love in emotional pain, where as im in a lil bit more of the physical. she does need someone to talk to. someone she can call and just vent and cry to that will understand, because we all know there is a shortage off those people on this earth.

Chris-

You are doing great!  Hang in there-  Things will look up for you soon...

Kelly

Chris, The CH going away for a year has nothing to do with anything you did or didn't do. This is just a normal remision for your CH. Some get less some get more and it changes as we go. The one thing you can count on with CH is that it can and will change. Not for everyone though most of us.

With the tuff time you are having, I really hope you can get the O2, I think it will give you some needed hope. As you can see the folks here are more than willing to help, so ask when you need it. Remember we suffer too.     , Don

we're gonna get me some O2. I got some VERY GOOD advice form a member tonight. I feel as my future is giong to look a lil bit brighter. Finally after 20 yrs I 've got the help I need. That I have needed for so long, but because of lack of knowadge have not had. I think with yall's help and O2, I can beat this fucking demon. I don't think I need a doc.
Melationin, O2, benadryl, and a few others I can manage this pain on my own without morphine and other narcs. So Kels and I will get out and start to explore these avenues. I will keep yall posted.

Quote:

I don't think I need a doc. Melationin, O2, benadryl, and a few others I can manage this pain on my own without morphine and other narcs.

WRONG!  Every single person here has needed a Doctor.  For a clear diagnosis.  For a script for oxygen and other preventatives and abortives.    The REST...you can find here.  Support, laughter, etc...

If you need to get off the Morphine and other Narcs...you need a Doctor for that also.   Girlfriend can't do it for ya either.  

In another thread I told everyone I was tired and couldn't post pics...and here I am getting all involved again...Sheesh people!!!!!LOL

Linda is right, I wouldn't give up on the doc yet. What you need is a good doc and they are hard to find. It has been awhile since you last diagnosis and you may want to refresh with another neuro.
the bb
Your future will be brighter, just take one step at a time, get this episode under control with an abortive. Get back to school. then it's time for the doc.