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Cluster Headache Help and Support >> Cluster Headache Specific >> AHHHHHHHHH!
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Message started by teajay on Oct 5th, 2008 at 8:21am

Title: AHHHHHHHHH!
Post by teajay on Oct 5th, 2008 at 8:21am
BAD night, Really bad cycle... Sunday, running low on O2 which means if that runs out, I'm beat.  I did have one good night 2 or 3 weeks ago but I don't know if that was from me starting the kilowatt combo that night or if it's b\c I took 125mg of Topamax instead of 100mg or both. The more than a month of lack of sleep makes a person feel insane on top of the CH anxeity.
I never considered myself a tuff guy but I was always impressed with the way I handled CH, not this time, it's beating me down. I fear as the years go by and this get worse, or seems to, that I'm going to need a padded room.
I needed to rant and I'm sorry
This site has been and is allot of help to me, all of you posters included--Thank you-  PF wishes  
TJ  -I need some cheese with all this wine :'(

Title: Re: AHHHHHHHHH!
Post by BarbaraD on Oct 5th, 2008 at 8:27am
TJ - Wine away -- we've all been right where you are. Have you tried adding some melatonin to your regimen at night before bed. It might help you get some sleep at night. Sounds like you need some. It's helped me for years get thru the night hits and helped with the exhaustion.

also might throw in some coffee or energy drinks.

Hope you're PF soon.

Hugs BD

Title: Re: AHHHHHHHHH!
Post by teajay on Oct 5th, 2008 at 8:49am
Thank you Barb for the support... I take allot of Melatonin, 27mg, suggested by my Nuro, she also just put me on Ambiem.  I trust her, she studied CH whith these doctors that are experts on all headaches or something, but she also listens to me.  I'm going to back off that when I'm not in cycle, which I didn't do last time and now I'm dependant on it.
I drink allot of coffee too, this past year the most, I think I'm going to start drinking it in the middle of the night because it does help. Redbull, I tried once to abort and it didn't help that time but think it has in the past, not sure, tring to figure it out.  When I was still boozing, I used to drink redbull and vodka and there was a long time when I was PF, sometimes I think maybe it was because I was driking redbull and vodka so much, not too sure.....
TJ

Title: Re: AHHHHHHHHH!
Post by shelticon2 on Oct 5th, 2008 at 1:25pm
TJ,


    No apologies necessary...... We all understand.... We have a good group of people here. (BTW I would like to thank all who gave me such a wonderfull welcome)

  When I was at the limits of my meds and the beast would still come. I spent a lot of wee hours playing Madden_08. Or if I was at work I would put my headphones on and crank up the music. ... Now I don't know if this somehow distracted my brain or was somekind of placebo. But I did seem to take the edge off.

Hang tough bud.

Jim

Title: Re: AHHHHHHHHH!
Post by River on Oct 6th, 2008 at 2:07pm
NEver apologize! Sometimes this is the only thing that keeps me slightly sane, to know that at this site everyone understands.  I tell few people about cluster headaches b/c immediately they say oh I get migraines, I want to shake them b/c they have no clue!!!!!

Does the Topamax help?  I am about to try it?
*

Title: Re: AHHHHHHHHH!
Post by Jean on Oct 6th, 2008 at 2:15pm
TJ,

I'm sorry you are having a hard time.  We have all been where you are so DON'T apologize!  It really sucks and once in a while, we're allowed to say so.  Sometimes just knowing that others are here for you and wishing you well can make at least a little difference.  Hang in there....... It will pass and you'll make it through.  Till then, rant all you need to.  We'll listen!

Pain free wishes and vibes headed your way! [smiley=hug.gif]

Jeannie

Title: Re: AHHHHHHHHH!
Post by Linda_Howell on Oct 6th, 2008 at 3:03pm

 
Quote:
I take allot of Melatonin, 27mg,


 Jeeze TJ, that is a WHOLE lot.  Most of us don't go too much higher than 9mg.   I would really re-think that dosage.  

Title: Re: AHHHHHHHHH!
Post by teajay on Oct 6th, 2008 at 4:58pm
Thank you every one! :) The Vibes must work, didn't have that bad of a night, 2 CH instead of 4-6, and no day hit.....yet.  It does feel better to vent sometimes!!

I do hate hearing "you get migraines"  every other time I tell someone I have a bad headache condition.

I thought Topamax was very effective at first but now I have mixed feelings.  I can't take more than 100mg or it triggers more CH, this is the second time I tried to increase and the second time it caused more attacks that were more painful, but everybody different.  When I'm out of cycle, I'm going to ween off this med, I think I've built a tolerance to it.

I do take allot of Melatonnin and so far I'm the only one I know of that takes 27mg.  My nuro suggested it, and she is the best I've had so far, but when this cycle is over I'm gonna ween down or off it.  When I try and decrease it triggers CH, even if I take out 6mg.

Thanx again everyone!!

T.J.

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