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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Brand new diagnosis
        
(Message started by: Yikes on Mar 6^th, 2005, 9:13am)

Title: Brand new diagnosis
Post by Yikes on Mar 6^th, 2005, 9:13am

Hello cluster headache people.

Here’s my story. I was sick for three months with varying forms of flu for the past 3 months prior to January. Five weeks ago, I visited the doctor after experiencing brutal headaches, always when I lay down for bed (9-10pm), behind my right eye, with an excruciating thump in time with my heartbeat. They would happen 3-4 days a week. At the end of the second week putting up with this, I went to the doctor. The doc put me on steroids and antibiotics and ordered an MRI to check sinuses. The pills seemed to clear up the headaches, and I felt great after that.

The MRI found my sinuses to be grossly clear, with the incidental finding of white spots, which is usually indicative of MS. I had to wait for the last 4 weeks to see the neurologist, while holding on to my scans and initial report of possible MS. The initial report freaked me out quite a bit, so I read up a bunch on demyelinating conditions and was prepared to discuss this at length.

When I finally got to the neurologist, he gave me a series of motor skill, reflex, depth perception, sensory and strength tests and concluded that my nervous system was in stellar shape. Probably do not have MS. The Neurologist said I suffer from Cluster Headaches and low blood pressure.

He said “Cluster headaches used to be known as "Suicide Headaches" because people used to beat their heads against the wall, attempting to ease the pain.” He gave me injectable Imitrex to be administered at the onset of the headaches. When the headache periods occur, I'm ordered to stop any alchohol intake, eat salty foods, and drink water in addition to the pain relief medication. Also to go my doctor the next day and get a short term steroid prescription.

He said there's no statistical data on their frequency, but that they often happen 3-4 days of the week for periods of 3-5 weeks. He said it might happen in a few months if not another year from now, possibly longer. Regarding the white spots, I’ll have a second MRI tomorrow to determine if the spots are recent or residual from a previous injury or childhood virus and go from there.

Its nice to know there is a community of people out there who suffer the same way. I’ve never had such a bad headache. When the headaches were happening, my right eye was lazy and tearing, I was in serious pain, crying, pacing, punching my own temples - it just seemed like my body was reacting with adrenaline like a fight or flight response. Thank god I have a loving wife – I have no idea how things may have gone differently without her.

Anyway – that’s it! Thanks for letting me be here!

Title: Re: Brand new diagnosis
Post by Bob_Johnson on Mar 6^th, 2005, 9:44am

I'm pleased that you have found a doc who appears to understand clusters!

The steroid will abort a cluster cycle rapidly but it's usual to start a long term preventive med at the same time. When the steroid is withdrawal clusters will usually return.

Suggest you print out this excellent piece and use it as a tool to talk about treament options with your doc. It's written by one of the better headache docs in the U.S.

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

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

Title: Re: Brand new diagnosis
Post by Yikes on Mar 6^th, 2005, 10:52am

Thanks!

I will share this with the Doc, this is good info - was wondering about what options there were for preventative.

Title: Re: Brand new diagnosis
Post by TonyG1 on Mar 6^th, 2005, 8:25pm

Welcome to the club pain Yikes! (Exclusive membership! ;)) Sorry you're here for the CH reason and you're in pain! :( You've come to the right place as the cluster ppl on this board are a wealth of knowledge !

Wishing you many PFDANs!

T.

Title: Re: Brand new diagnosis
Post by jokrs2 on Mar 7^th, 2005, 12:39am

Welcome Yikes. You,re certainly in good company ;;D. Hope you're situation improves quickly. Lots of great people with great advice in here. Praying for your complete healing. Joe

Title: Re: Brand new diagnosis
Post by Gator on Mar 9^th, 2005, 2:35am

Welcome to the funny farm. Sorry you are suffering through this. The best advice I ever got was to read everything in the links to the left, read all the links people give you in the threads and IM's and read the various boards. There is tons of info on this site. More almost every day. Education is the key to treatment. You will have to know more than the docs, which is usually easy as most docs - even most "specialists" know little about clusters. You may well end up teaching whatever doc you settle on about CH.

BTW, Cluster Headaches are STILL known as Suicide Headaches and not because people bang their heads. It's because some people commit suicide to escape the pain. Lots of us have been there, way to close to the edge of the precipace looking down into the abysmal pit of death. How I/we fought off the drive to take that last final step varies from person to person. For me, at that absolute last minute of my life, I realized the pain wouldn't stop with my death. It would live on in my wife and kids. Suicide is not an option for me any longer.

Sorry to be so morbid. I'm just in a mood. This is a serious disease. One that without adequate treatment and support could end in it's nickname. Get all the info you can get and ask questions. Come here and vent, rant, kick and scream or whatever. There is usually always someone here to talk with. Also come here and share your successes as well. You never know who you may help.

Again, welcome. There is no better place in the world for information and support for cluster headaches.

Title: Re: Brand new diagnosis
Post by tazreenie on Mar 9^th, 2005, 2:20pm

Yikes, I am also new to this site, I feel great relief, there are people out there with great advice, and understand what pain we endure. But hope someday there will be a cure to help everyone anywhere.
I wish you the best !!
:) tazreenie