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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> It's that time again!
        
(Message started by: Saint on May 11^th, 2006, 4:30pm)

Title: It's that time again!
Post by Saint on May 11^th, 2006, 4:30pm

Well, it's cluster time again. I've been in remission for about 4 months, my last major attack occurring between November and January of this past year.

I woke up two days ago feeling like my left eye was going to explode out of my face and start a revolution. It's always the left eye. I took that day off from work, as I normally do when my Cluster attacks start. Luckily the last two days haven't been so bad. The pain wasn't too bad yesterday, but the aura's have been with me pretty much non-stop. When I got to work yesterday I could barely see at all, although today it's a little more bearable. I work as the Internet Helpdesk at my local college, and in my spare time I do web development. That's right, I spend all day, every day, in front of a computer screen. My brother can always tell when I'm having an attack because I'll go around the house turning the brightness and contrast way down on all of our computers. I have also been known to shove pillows and all sorts of other plush items in windows to block out as much light as possible.

This attack hasn't been so bad thus far, not compared to my last one. It lasted about two and half months, and left me curled up in a corner most nights, crying and grabbing at my face. I discovered a good way to relax last time, though, and it was to simply get a hot wet wash cloth and cover my forehead with it while I tried to lay down. I've found that it really helps to alleviate some of the pain, and can sometimes reduce the pain portion of my clusters by up to an hour. Of course, Excedrin and lots of caffeine also help.

I've been having cluster attacks for about 7 years, since I turned 18. I went into remission about 5 years ago, and didn't have an attack for about a year and a half. God, that was nice. Now it seems like they're hitting me at least two to three times a year, sometimes more, and usually lasting from a few weeks to a few months. I wish I could just take that time off of work, but I really don't want to get laid off. I can bear with a little pain, if it means I'll be able to pay my rent. Ya know? :'(

Anyway, I just wanted to say hi and introduce myself. It's not often that I find people that understand what I go through; it's nice to finally find a community that I can relate to.

Title: Re: It's that time again!
Post by Kris_in_SJ on May 11^th, 2006, 7:53pm

Hi Saint.

Welcome. Are you formally diagnosed as a clusterhead? If so, is it your choice to only use Exedrin and heat? There are a number of really effective medical treatments available these days to shorten cycles and abort attacks. Oxygen is one of most effective abortives out there for many of us. Even comes in little portable tanks you can keep under your desk at work.

Perhaps you could tell us a little more about yourself and the treatments you've tried. I've never experienced any kind of "aura" or problem with lights, though a few have mentioned it.

Hugs,

Kris

Title: Re: It's that time again!
Post by Charlotte on May 11^th, 2006, 8:08pm

I get sensitive to light, also. A lot of people also have migraines and ocular migraines, along with ch.

Have you ever tried triptans? There have been some advances since your last round. Do you have a good dr who listens and is willing to learn? If not, get one, no matter what it takes.

Also, some people have had luck with verapamil. There are alternative treatments, too.

Read as much from the links on the left as you can.

Charlotte

Title: Re: It's that time again!
Post by Charlie on May 11^th, 2006, 10:23pm

Welcome to the madhouse.

Pay attention to these people. They know how to deal with this horror. When I had mine, I wanted to sit and squrim in the dark with cold air blowing in my face and dead quiet. I was dangerous when people tried to deal with me at the time.

Forget the Excedrin. It's like trying to knock out an elephant with a peanut.

Here is what worked for me:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie

Title: Re: It's that time again!
Post by Bob_Johnson on May 13^th, 2006, 9:27am

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf