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Cluster Headache Help and Support >> Cluster Headache Specific >> Does this never end!
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Message started by shaktima on Jun 10th, 2008 at 3:13am

Title: Does this never end!
Post by shaktima on Jun 10th, 2008 at 3:13am
I am into another "episodic cluster," last being change of seasons last summer.  This one started 2 weeks after the death of my father (don't know how I held together thru that) but now, the beast is coming to get me.  Every night, at 2:00 - 2:30 am, robbing me of precious sleep, making my life miserable.  I am doing the "Red Bull" thing, seems I am maybe building a tolerance to it, as the "banger's seem to be getting stronger and stronger.  I have my trusty ice pack.  I am down to my last 2 Imitrex and want to save them for the really bad ones that I am sure are to come.  I am taking taurine every day, but still the beast seems to come during my most regenerative part of sleep.  Thus, am not ever able to feel fully rested.....I use this board to come on and read during my attacks...somehow, I don't know why, it gives me  bit of hope and strength to get thru to the next one.  Guess it is just truly bad karma....how pain this bad can be a part of life....no sleep......I am just destroyed.....
Cathy

Title: Re: Does this never end!
Post by Guiseppi on Jun 10th, 2008 at 3:58am
Ouch, you're in a bad place. Have you seen a neuro? Or at least an understanding doc? You need a more effective preventative medication, something like verapamil, topomax, lithium, something you take regularly to reduce the frequency and intensity of your hits. I'd go broke using only trex!

Then you need oxygen. I can abort an attack in less then 10 minutes using only oxygen. Read the link on the left, print out the info and demand it from your doc. The key points are, pure oxygen, at a high flow rate, at least 15 LPM, started at the first sign of an attack, using a Non Re Breather Mask. Re Breather Masks and nasal canulas are worthless for our condition.

For now, have you tried melatonin yet? It's an over the counter available at health food stores, people take it to avoid jet lag. Many find they can get relief from the nite time hits by taking 9-12 mg of mealatonin half an hour beofe bedtime, might be worth a shot for you.

Yes it ends, and now that you're here you're not alone anymore. We'll do all we can to help you.

Guiseppi


Title: Re: Does this never end!
Post by icedragon on Jun 10th, 2008 at 1:03pm
I agree, OUCH!  

We all know how this can effect sleep.  It seems the less you get the more the beast smiles.  I don't know about everyone else, but I try to stay away from energy drinks during the sleeping hours.  Then again, I have O2 to help me abort the night time hits and can easily fall back to sleep.  O2 has really changed my life for the better when I am in a cycle.  I hope it works for you too.

Many PF wishes
Thomas


Title: Re: Does this never end!
Post by thebbz on Jun 13th, 2008 at 3:20pm
Chin up!!!
Yes it ends. Dont give up.....ever.
Like the sarge said, you need a treatment plan. You can get control.
Hope your doing better.
thebb

Title: Re: Does this never end!
Post by outofcommission on Jun 14th, 2008 at 12:41pm
when i was in high cycle and not getting any sleep i would obsessively get on this board and learn all i could about my enemy. going weeks without sleep will test you, and you will never get used to it but your determination will get stronger and we are here to help you through this ;).  

Title: Re: Does this never end!
Post by Sophia on Jun 14th, 2008 at 1:48pm
I agree that these cluster headaches are no fun whatsoever. I am in my first cluster episode that has been diagnosed and it has been going on for about 3 weeks. I am wondering if it ever ends myself. You are not alone. Please dont feel that way. If we were alone in misery then this website would not exsist. I feel for you and wish there was a magic pill to take away the pain. Dont let the demon get you down. He is mean and will struggle to keep you there.
Hugs Sophia

Title: Re: Does this never end!
Post by BarbaraD on Jun 16th, 2008 at 8:56am
have you tried taking Melatonin (12-15mg) at bedtime. This has helped a lot of us get thru the night hits. I've been on it for several years and very seldom get hit at night.

Hugs BD

Title: Re: Does this never end!
Post by coach_bill on Jun 16th, 2008 at 10:04pm
Hang in there, I know this sounds crazy but you need to get on a strict sleep pattern,  melatonin at night can sometimes keep the beast at bay ( or at least slow him down a bit ) but talk to your doctor 1st.  Just try to make sure you get to sleep everynight at the same time, its just me but we all know the beast keeps a very, very tight schedule and he mostly starts when the change in your schedule starts, like summer hours and you going to bed later, so if he can run a tight schedule than so can you. Fight fire with fire. So get to bed everynight the same time no matter what untill you beat this shit right back into remission. I hope you feel better soon. Coach Bill

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