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        New Message Board Archives >> Jul-Sep 2003 >> newbie
        
(Message started by: timw1969 on Aug 4^th, 2003, 3:06pm)

Title: newbie
Post by timw1969 on Aug 4^th, 2003, 3:06pm

hello, my name is Tim. im new to this site. i ve had these headaches for over 4 years. i just now got diagnosed with cluster headaches after trying to tell the doctors for years. first they said migranes, then absest teeth then stress then tmj. ive had x-rays, cat scans mris, and blood work. ive tried the typical migrane meds several anti depreants anti cunvusive medsnothing seems to be working. ive been reading through your website for some ideas for my doctor that we can try. ive gotten to the point that my work made me take a 30 day leave of absence to get this figured out and if i dont they want me to resign. because ive missed so much work. my fiance is supportive to a point but she to is tired of it. and i can understand that. of coarse none of this helps. ive gotten to the point that i just want to hear someone say ive been there and know what your going thru. I want my life back. if anyone has anything helpful please let me know. thanks for listening to me whine. tim

Title: Re: newbie
Post by BillyJ. on Aug 4^th, 2003, 3:18pm

Hi Tim,
ive been there and know what your going thru.
all of us here have been there,YOUR NOT ALONE anymore!
Start reading!Lots of info here.heres some key
words for you-Imitrex,verapamil,Oxygen,use the search
button and start with those,feel free to ask questions
Also check this to be sure your diagnosis is right
http://www.clusterheadaches.com/quiz.html
welcome aboard,now grab an oar,
PF2All,
Billy

Title: Re: newbie
Post by Joanie on Aug 4^th, 2003, 3:30pm

Hi Tim,

Welcome to the board! You've come to the right place.....we definitely understand what you're going through. There's lots of good information here, along with some of the best people you'll ever meet.

Stick around!

Joanie

Title: Re: newbie
Post by simplevox on Aug 4^th, 2003, 3:37pm

Hi Tim. I just found this board last year and I have had these headaches for 8 years. I understand your situation. I am engaged and just recently moved in with my fiancee. He is trying very hard to be supportive, but it is wearing him down also. He has some immature friends who are making it hard on him too when he tells them he needs to stay home with me instead of going out partying when I'm in a cycle - nice friends, eh? I keep telling him that it's good that he's seen this side of me now so he knows what he is getting into.

I take Verapamil (120 mg) and Depakote (500 mg) daily and then Zomgi (5 mg) when I get an attack. I have been getting hit daily for a few weeks now and I will go back to the neuro this week. She will probably put me on a 10 day dose of steroids which will relieve the pain for a few days while she ramps up my Verapamil dose. I guess it takes a few days for the higher dose to take effect. Good luck to you. I'm glad you found the site.

Title: Re: newbie
Post by Miss_Deleny on Aug 4^th, 2003, 7:15pm

Hi Tim and welcome!

I don't have CH but my Fiance' does and I know what your Fiance' is going through. I would suggest for her to come here and look around, and read all she can. It helped me to understand alot more about CH and what is happening to my loving man!

Since finding this site, we have a better understanding and have become closer knowing that we are not alone out here and that there are people that are going through the same things as we are.

This is a very supportive group here that really cares about one another. And there is so much information out there to help both of you understand what CH is, what is being done about it and what things you can try to ease some if not all the pain.

~April~

Title: Re: newbie
Post by Jackie on Aug 4^th, 2003, 7:19pm

Tim,
You've come to the right place for understanding and support. There is a ton of information here and on the OUCH site.....study up when you feel up to it. There might be something there that could help you. If you get stuck...ask...we'll help you the best we can.

It will get better......keep the faith.

Good Luck,
Jackie

Title: Re: newbie
Post by Charlie on Aug 4^th, 2003, 7:21pm

Welcome and sorry you had to find us.

Been there, done that. It's a horror.

Look around and you'll find some good ideas to help cope with this beast.

Here is a technique that has helped many:

Dr. Wright’s Circulatory Technique

This technique significantly helped to shorten my cluster headache attacks.

It involves concentrating on trying to redirect a little more circulation to the arms, hands, or legs. It can described as a kind of internal “flexing” or “push.” 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. If you do, it never will. Every now and then it can 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 this method. The doctor, while holding his arm at his side, 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 the same day. 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 dealing with this horror, I always gave it a try as I had nothing to lose but pain. I am not sure what mechanism is triggered by this method but whatever it is, at least indirectly kills the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes real concentration.

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 beast. 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.

Give it your best shot and I wish you the best of luck fighting this demon.

Charlie Strand