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        Cluster Headache Help and Support >> Cluster Headache Specific >> Night Demon
        
(Message started by: midwestbeth on Jun 22^nd, 2007, 3:28pm)

Title: Night Demon
Post by midwestbeth on Jun 22^nd, 2007, 3:28pm

Is really kicking my a$$!!

Absolutely nothing in my arsonel of ch wepons is keeping the nightly demon away. Kip 10+ last night for 1 1/2 hrs. I still feel the ch hangover.

I should be wearing an approach with caution t-shirt. Depending what you say I could either burst into tears, chew your a$$ or both.

Lack of sleep is really starting to wear me down. My hubby is starting to freak out seeing me in so much pain and not being able to do anything. I go to the doc on Monday morning and he will be going with me. Hopefully I will get a prevent that works for me.

I hate this!!!!!!!!!!!

Beth

<rant over>

Title: Re: Night Demon
Post by Rosybabe on Jun 22^nd, 2007, 3:52pm

Sorry to hear you were in so much pain Beth :'(, I wish I coould tell you something or give something to make you feel better...all I can do is to send you all my positive vibes so the Doc can find the perfect prevent for you.
Hang in there Girl!

We are here for you and you know it! ;)

Title: Re: Night Demon
Post by UN solved on Jun 22^nd, 2007, 7:32pm

O yes, I know the night demon too. He used to visit me everytime I fell to sleep. Now he just visits when I'm not expecting it.

Goodluck, I hope you find a prevent that helps soon :)

UNsolved

Title: Re: Night Demon
Post by Ray on Jun 22^nd, 2007, 8:14pm

Dear Beth:

I am so sorry for this. I've gone through phases where the beast would attack an hour or so after falling asleep, it would take me a couple of hours to settle back to sleep. Wham, an hour later, back up dancing with the beast. Then repeat the process. I'm sure others of us have done so too.

In short it SUCKS THE BIG ONE!

But this too shall pass. Take it one moment at a time and never let the beast win.

Wishing you PF days and nights,

Ray

Title: Re: Night Demon
Post by gMike on Jun 22^nd, 2007, 9:16pm

Sorry to hear you are suffering. Make the doctor understand and go armed with all the printed info. you need to convince him/her that there are things that can done if he/she will cooperate!

Title: Re: Night Demon
Post by midwestbeth on Jun 22^nd, 2007, 11:13pm

Thanks everyone for the vibes :)

I've been back on Dexamethasone for 4 days. It is keeping the day hits down, but the nightly demon still likes to pay a visit.

Problem is mostly the lack of sleep. If I doze before 2:00 am, I get 2 bad hits. So, I've been staying awake until at least 3-4 am. 20 mins of blissfull sleep and then bam!! Just the one kip 9-10+ for 90 min or so. It's really getting hard to function during the day. I get up at 6:00am normally, but my hubby has been great about letting me sleep in a couple hours late this week (We own our own business otherwise I think I would have been fired long ago)

I know this to shall pass and I'm not going to let that bastard win >:(

Thanks again
Beth

Title: Re: Night Demon
Post by UN solved on Jun 23^rd, 2007, 1:02am

90 minute hits :( Don't you have an abortive that'll work quick ?? I remember having 90+ minute hits, that was before Trex.

Goodluck

UNsolved

Title: Re: Night Demon
Post by Buzz on Jun 23^rd, 2007, 1:36am

Beth, I'm having attacks that are taking up more hours in the day than the gaps between them, some as nasty as Kip9/10.

I'm finding that the best way to endure the pain is to count; I count the dashes marking the centreline of a long, straight road running through the desert. If you can learn to concentrate (and its very difficult) you can eventually take your mind to another place and the time of the attack seems to become shorter.

Title: Re: Night Demon
Post by vegas1002 on Jun 23^rd, 2007, 9:41am

Beth, I am so sorry to hear that. I am right beside you. Last night I only had 2 hits 8/9 kip and I am grateful that it hasn't been my 3 -4 hits a night. I go to the dr this Wednesday. I do have Imitrex nasal spray but it doesn't work for me. Need to go back to the shots and O2. Good luck and I hope you get some PF sleep soon.
Alex

Title: Re: Night Demon
Post by BarbaraD on Jun 23^rd, 2007, 2:43pm

Beth,
Have you tried melatonin at night. Takes a couple of weeks to start working, but it's been a godsend for a lot of us. I usually take 12-15mg before bed and it gets me thru the REM sleep and no hits at night (usually)

Also RED BULL!!!! Have you tried that at the onset of the demon? And O2?

Sounds like you need to find a prevent cocktail (trial and error till you find one that works). I know it took me a long time to find the RIGHT one, but it's out there somewhere. A lot of people on here swear by verap. Some mix it with lithium or something else -- you just have to find the right thing. I take topamax (either it works or you hate it and say bad things about it - it's my miracle prevent).

BUT you need to be talking to you doc and FINDING something that works as a prevent for the night hits.

Hugs BD

Title: Re: Night Demon
Post by midwestbeth on Jun 23^rd, 2007, 7:54pm

I got about 4 hours sleep last night with no hits!!! YEA!!!

Zomig, 02, trex, etc can't bring down the night beast :-[

I think it may be because I'm already at a kip7 upon waking and it ramps up really quick from there. I usually go for the trex or zomig as soon as I wake up, but they don't even touch it.

Hopefully the doc will be able to find the right prevent. Verap is out because of edema side effect I had.

I have melatonin, just haven't taken it yet. I'm taking Kudzu, tuarine, and a magnesium, calcium and zinc supplement along with the dex (steroid) right now. I'm out of trex. Went on a family vacation to Branson last weekend and used it all just to get through the weekend (we had a great time ;;D) I have 2 zomigs left. Good thing I'm seeing the doc on Monday, he gives me lots of samples.

Thanks everyone,
Beth

Title: Re: Night Demon
Post by UN solved on Jun 23^rd, 2007, 8:40pm

Can I take a 'jab' at it and guess that you are using only oral medications ? None of those work for me either. I must use the Trex 'jabs'. Have you tried the jabs ?

Goodluck

UNsolved

Title: Re: Night Demon
Post by midwestbeth on Jun 23^rd, 2007, 10:23pm

on 06/23/07 at 20:40:56, UN solved wrote:

Can I take a 'jab' at it and guess that you are using only oral medications ? None of those work for me either. I must use the Trex 'jabs'. Have you tried the jabs ?

Goodluck

UNsolved

I've never tried the oral trex. I've been jabbing myself so much my arm is sore. The trex tip used to work, now I need the whole shot to get relief. Damn high cycle!

Beth