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McHKelly

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New
May 10^th, 2009 at 4:21am

Hi!
I am Kelly. From Wisconsin. I am 20. Have been having cluster headaches since I was 18. So not nearly as long as some of you. Luckily due to my own research I was diagnosed during my first attack. I have such severe myopia that initially we thought it had to do with my eye. Oh, how wrong we were!
It is hard for me to tell the interval of attacks because I was started on medication so soon.
I have tried Verapamil, unfortunately it created hypotension which resulted in constant dizziness. I wasn't on it long enough to determine if it was effective.
We tried 800mg per day of Vit. B6. Less shadows.
Tried Melatonin but as a college student it just was NOT happening. The last thing I needed was more melatonin in my body!
I have tried Lamictal at 200mg. Weird adverse effects, so the dose was halved.
I have been on Topamax for a year. I ended up with kidney stones and stopped taking it for about 5 weeks, the shadows came back and I immediately requested I start it again only I now drink an insane amount of fluids and so far so good.
I use Imitrex as an abortive, 2mg as I take apart the stat dose and self inject to make it go farther. Thanks to insurance only allowing 16 injections per 27 days. Grr.
And I have 02 as an abortive.
So currently the medication regimine is 50mg of Topamax in morning and 50mg at night. and 100mg of Lamictal at night.

I have been under attack for the last two weeks.
I am wondering if anyone has any insight as to the timing in relation to sleep cycles. Mine do not occur at a set time each night. Instead they occur about 1.5-2 hours after I fall asleep. Do CH occur during a certain stage of sleep?
Also I noticed this attack seems to be less painful? Tolerance? Medication?

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Lefty

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Re: New
Reply #1 - May 10^th, 2009 at 6:27am

McHKelly wrote on May 10^th, 2009 at 4:21am:

they occur about 1.5-2 hours after I fall asleep. Do CH occur during a certain stage of sleep?

Hi Kelly,

Welcome to the site and glad you found us...1.5-2 hours into sleep is normally the time that i would also be awoken by a CH. I believe that the mid night attack is triggered when our bodies enter the REM stage of sleep..

Lefty...!

"When money's tight and is hard to get
And your horse has also ran,
When all you have is a heap of debt
A PINT OF PLAIN IS YOUR ONLY MAN."
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Lottie

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Re: New
Reply #2 - May 10^th, 2009 at 6:42am

Welcome Kelly!

Quote:

I believe that the mid night attack is triggered when our bodies enter the REM stage of sleep

That's what I heard about it too. I usually get hit within the hour after going to bed. And most nights I get 2-3 hits a night, no fixed time either.

Glad you stumbled upon this site, I hope it's as big a help to you as it's been for me.

Lottie

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maalstroom CH.com Old Timer Offline ''Dance to my tune''.... the hell I will! Posts: 491 the Netherlands Gender:	Re: New Reply #3 - May 10^th, 2009 at 11:28am Hi Kelly, and welcome. I also was 17/18 when diagnosed (34 now) and if it's any consolation to you, the longer you have clusters, the better you get to deal with it. I remember the despair back then. Pascal, wishing you pf days.
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McGee

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Re: New
Reply #4 - May 10^th, 2009 at 1:16pm

Hi Kelly,
welcome, Ive also heard about the REM phase of sleep and thats when i get mine 1-3 hours after falling asleep. took me ages to work out any regular routine as i work shift work but i keep a headache diary now and i can see the pattern.
ive also had them during the daytime and alcohol is a trigger for me, one smell of the barmaids apron and im away lol.

Mark

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j0hnglist CH.com Junior Offline I Love CH.com! Posts: 40	Re: New Reply #5 - May 11^th, 2009 at 11:49am Welcome Kelly! And YES, you have suspicions about sleep cycle just like I do! CHeck this out: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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chrisw CH.com Old Timer Offline Posts: 315 x0\|turnersville\|NJ,USA Gender:	Re: New Reply #6 - May 11^th, 2009 at 9:38pm Kelly, yes, I always get hit from 45min to 90min after falling asleep. among other times good luck, and hopefully you will find what works best for you christine
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BarbaraD

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Douglasville, TX
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Re: New
Reply #7 - May 15^th, 2009 at 8:06am

Yep the CH usually hit during the REM sleep - that's why a LOT of us take the Melatonin before we go to bed. It has proven to stop the night hits because it gets you thru the REM sleep. It's worked for me for years. I very seldom (nothing's perfect) get night hits any more.

O2 on a high flow rate (15-25 liters per minute) with a non-rebreather mask works to abort for about 70% of us here (I use a demand valve, but I'm chronic --- a lot of people here use the Op2tic mask that DJ has in the CH.com store and it's a great mask - we all recommend it).

If I'm out without my O2 (which is seldom) I have a can of Red Bull handy and chug it at the first sign of a shadow -- this usually aborts a hit. (I also keep Cafergot with me at ALL times - just in case).

Hugs BD Kiss

What don't kill ya, Makes ya stronger!

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Guiseppi

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San Diego to Florida 05-16-2011

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Re: New
Reply #8 - May 15^th, 2009 at 12:06pm

Welcome to the board. It's funny, for the first 20 or so years I NEVER had a night time wake up attack. Those didn't start until I hit my 40's. I'm hoping your lighter cycle is a result of your meds helping you out. My cycles have gotten much easier to manage as I became more adept at spotting a cycle coming on, got my meds in order and stayed on top of it.

I use lithium as my prevent, verapamil didn't work for me and I never tried topomax as lithium has continued to work well for me. Limited side effects so one to keep in mind to chat with the doc about should your current regimen ever fail you.

Wishing you a short and sweet cycle with a loooong remission! Wink

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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