Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> Jan-Mar 2003 >> Montel, New Thread, US Sufferers
        
(Message started by: juvy on Mar 24^th, 2003, 3:41am)

Title: Montel, New Thread, US Sufferers
Post by juvy on Mar 24^th, 2003, 3:41am

Okay guys/Gals in the US,

Http://www.montelshow.com/show/tell.htm

at www.montelshow.com is a place to send them your story. I've sent mine and hopefully you guys will do the same. I've posted what i sent below. I'm sorry it's so long. Hopefully with lots of responses CH may get it's day in the sun.

Cheers,
April

Montel,

I heard via our message board that you found out about Clusterheadaches. I thought I might give you some information on what it is like to suffer from this disease. I have a version of Clusterheadaches known as Chronic Paroxysmal Hemicrania (CPH). From the onset of the pain being everyday to a proper diagnoses took 2.25 years.

It started as a little thing. A knife pain slashing through my head lasting maybe 2 seconds. This happend maybe once every few weeks, then every week, then every day. Soon it was several times a day. It felt like some one was inside my head stabbing me repeatedly with a knife.

I never knew when or where the onset was going to occur only that it was. I was afraid to go far from my house. My work performance dropped. My quality of life went from everything is wonderful to should I end it all just to stop the pain? Most times I felt as if there was a war going on inside my head.

During my struggle to live my life as best as I could and to hide my pain from those around me, I had to deal with doctors who didn't know what was going on and couldn't help. When I stopped sleeping due to the pain, my doctor sent me to a sleep center and a Neurologist.

It took the Neurologist 2 years to dianose the problem. CAT scan showed nothing. MRI showed nothing. The symptoms weren't migrains. He put me on medication after medication hoping one would work.
In April of 2002 I officially went on sick leave from work. Most days I couldn't leave my bed much less my house. My Neurologist decided I had Clusterheadaches. And prescribed medications that were suppose to help. I had O2 bottles delivered to my house and Imitrex in my cabinet.

It didn't work. The pain just got worse. I spent most of August 2002 curled up on the floor, holding my head and crying. I seriously think that if it wasn't for the love of my fiance and my family that I wouldn't be alive today. There was nothing in my life but pain and I didn't see the point of living that way. The only thought greater was that my family was losing both my grandfathers to cancer and I didn't want to cause them more pain and loss. So for their sake I held on. Thankfully, I didn't have to hold on for much longer.

Finally in December 2002, (after telling him that if he didn't find a cure or something to help, he would be attending my funeral) my Neurologist sent my case to the Medical University of Leiden, in The Netherlands. They suggested Indometacine. My diagnoses and my cure had finally come. I still have attacks every month but the pain isn't as severe. As I like to tell my Fiance, "It's do-able."

The major difference between CPH and Clusterheadaches is there isn't a cure for Clusters. Imitrex and O2 help some when the pain comes but you still have to deal with the cycles of extreme pain.

Another major difference in my story than the others is that I'm an American living in The Netherlands. My insurance doesn't have HMOs or certain medications they don't pay for. I pay them every month and they pay for my medication. No ifs, ands, or buts about it. In the United States, most insurance companies only pay for a certain amount of imitrex. So if a clusterhead's supply is up, they suffer the pain without the medication to help.

I do apologize for the long "letter" but I know what it is like to spend what seems like an eternity in pain. The suicide for Clusterheadaches and undiagnosed CPH is very high. Hopefully with awareness we can bring forth hope to those who think they suffer alone. Maybe one day science can even find a cure. Most of all insurance companies need to be made aware of the suffer they cause when they deny someone their medication. To them it's a matter of money; to us it's a matter of life.

With kind regards,
April Brown

For more information on Clusterheadaches please visit www.clusterheadaches.com

Title: Re: Montel, New Thread, US Sufferers
Post by SommelierCH on Mar 24^th, 2003, 5:36am

You go girl!!!

David J.