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        New Message Board Archives >> 2004 Posts >> It's back
        
(Message started by: soccormom55 on Dec 14^th, 2004, 4:35pm)

Title: It's back
Post by soccormom55 on Dec 14^th, 2004, 4:35pm

What can I say...I am very upset that I am back here at this site...I have not been here for over 3 years and guess what happened last week...their back and the worst I have ever had them...I am 31 years old an have suffered w/ CH for 10 years...3 of them being CH free and I can not take Imitrex or anything that is similiar to Imitrex because three years ago, Imitrex was the cause of my heartattack...My new "headache specialist" Nuerologist..saw him for the first time last week, put me on Predisone and Tapomax for preventive, which I must add is helping a little, but he is putting me on aother 5 day round of Prednison...but I really can't take anything to abort them...I have tried o2 and it did not work, but I read up on o2 info from this site and I think I was doing it all wrong...will try again tonight! I hate it..I hate it...I forgot what is was like to get them and they really suck! I could not believe it when I got my first one again...I was like...you are kidding, this is just a severe sinus headache, but I knew better and the worst thing is that I am w/ someone who has not witnesses me when I get them and I feel so sorry for him...last Friday he almost kicked the sh*t out of the Pharmacist because he wasn't filling my prescription fast enough....good guy...leaves me a lone when I get them...I feel like a zombi...like I was hit by a mack truck...does anyone have muscle pain after...I do...my whole body hurts because I tense up so much when I get them...well I must go, but I will be back...and I must say...It's not good being back here!!!!

Title: Re: It's back
Post by Jonny on Dec 14^th, 2004, 4:41pm

3 years?

Where ya been?

Title: Re: It's back
Post by soccormom55 on Dec 14^th, 2004, 4:45pm

I haven't had a CH in 3 years...and it's back and it sucks!

Title: Re: It's back
Post by Jonny on Dec 14^th, 2004, 4:50pm

Ive been here everyday for over five years supporting people in pain when I myself am not in pain.

Sorry the beast is on you again.

Title: Re: It's back
Post by don on Dec 14^th, 2004, 5:00pm

Bummer the CH has returned.

Lot of people could have used your PF support the last three years.

Hope its a short cycle for you.

Title: Re: It's back
Post by Charlie on Dec 14^th, 2004, 10:07pm

Sorry about all you're going through. Here's an idea that anyone can try in place of drugs if need be. It worked for me most of the time. Not easy but better than the beast:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
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.

I hope this technique is helpful and I wish you the best of luck

Charlie

Title: Re: It's back
Post by john_d on Dec 14^th, 2004, 10:42pm

your description is intense, I am feeling it soccermom :'(. big, big vibes to you sister

Title: Re: It's back
Post by K-9 on Dec 15^th, 2004, 12:31am

Hey Smom, I'm sorry you're getting hit again. You're not alone. Hang in there and definitely figure out the oxygen thing since that would be safer for your heart.

Chuck

P.S. As for the first couple of posts here, don't let them guilt ya, I have a tremendous amount of respect for those who do stay around during PF times, but I also respect and understand some people's need to get out of it. They are great, and so are you, to each his own!!!

Title: Re: It's back
Post by don on Dec 15^th, 2004, 4:58am

Quote:

P.S. As for the first couple of posts here, don't let them guilt ya,

Remember you said that.

Title: Re: It's back
Post by Jonny on Dec 15^th, 2004, 5:11pm

on 12/15/04 at 04:58:52, don wrote:

Remember you said that.

;;D

Title: Re: It's back
Post by Tim_Z on Dec 15^th, 2004, 6:44pm

Yeah I did that. When my cycle was over I got back to my life and all of the things I thought I was missing out on. Well there is much to learn here, something new is going all the time, even if it's not CH related. I love this place, it really is a family. Even if it's dysfunctional like my other ones.

The only normal people are the ones you don't know very well.

Vibes headed your way Soccormom.

Tim

Title: Re: It's back
Post by marlin on Dec 15^th, 2004, 7:20pm

shit, 3 years. I bet you thought they were gone for good. I was getting cocky myself this past remission. Even my father said the beast was gone for good. POS snuck back in my life. I'm sorta lucky... They only last 5-6 weeks, the imitrex works and this past cycle the pred taper knocked the cycle dead. I waited on the pred for almost 5 weeks so I was probably at the tail end anyhow? But hey, get the O2 cylinder out of the garage and crank up the pred taper. You may be PF by Christmas :)

Title: Re: It's back
Post by Jeepgun on Dec 16^th, 2004, 11:02am

Hang in there, Socca' Mama! Vibes and wishes for an end to the pain... :'( Three years pain-free!! Wow! That's a pretty good run. Hopefully, after this cycle is over with, you will go pain-free for GOOD! Anyway, stick around and soak up the vibes. :)

-Frank