Clusterheadaches.com Message Board


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

        New Message Board Archives >> 2004 Posts >> 24 Years with the Beast
        
(Message started by: Glideman on Apr 6^th, 2004, 4:16am)

Title: 24 Years with the Beast
Post by Glideman on Apr 6^th, 2004, 4:16am

This is my first time on this site. I have been fighting the monster for many years, had one 13 month stretch with a shot of Prednisone in the back of the head but that only woked once.I have had some minor and limited results with about every other drug out there,right now Doc's tryin Topamax,so far its not working,its been a 5 week run and gun, I've been up since 3am because I was dumb enough to think I could sleep.I go to sleep and 45 min. to an hour later I'm up with a full blown banger. I've been here before but as I get older this is getting much harder to deal with. Hey I just had to vent to someone that understands,I'm a single Dad with 3 kids to raise,just feelin pretty low.Well time to start the work day,later.

Title: Re: 24 Years with the Beast
Post by Pegase on Apr 6^th, 2004, 7:57am

Im with you... U'll find a lot of support here... Good vibes And Pain free days for you... I cant imagine you have to deal with 3 children alone and have to fight the beast at the same time...

Dont give up...

Pegase

Title: Re: 24 Years with the Beast
Post by deacon on Apr 6^th, 2004, 8:42am

Same as above. Wow, three kids and fighting the beast, I feel for you.

Hang in there.

Deacon

Title: Re: 24 Years with the Beast
Post by Jeepgun on Apr 6^th, 2004, 8:44am

Man.... You have a tough row to hoe. Don't let this fucker get you down, though. Stand in the middle of your living room with a big stick, screaming at it, "YOU WANNA PIECE O' ME!!??" ;;D

At least you're here, among people who truly understand. *HUGS* Hang in there... For yourself, for your children... "This too shall pass."

Meanwhile, welcome to the Clusterheads Club. Glad to have you here, although I'm sorry for the circumstances that bring all of us together... :-/

Title: Re: 24 Years with the Beast
Post by stuey on Apr 6^th, 2004, 10:56am

Keep fighting. Hopefully they can try you on verapamil SR. It's the only thing that stopped my cycle. Stuey

Title: Re: 24 Years with the Beast
Post by echo on Apr 6^th, 2004, 10:59am

Kick the SOBs ass!!

Hang in there -- it will end! They always do.

Title: Re: 24 Years with the Beast
Post by bobkip on Apr 6^th, 2004, 11:18am

Welcome to the family Glideman. You'll find lots of support here and please consider joining OUCH at clusterheadaches.org.
I've been battling the beast for 50+ years and it hasen't killed me yet; as a matter of fact, I think I might be winning. I was pf for 2 1//2 years, the longest I can remember and started a cycle mid last January that lasted into March. It was the shortest cycle ever.
Have you tried pure oxygen? It works wonders for me and many others with none of the side effects that many of the meds have.
Best of luck, come often if only to vent.
Kip

Title: Re: 24 Years with the Beast
Post by Luke63 on Apr 6^th, 2004, 11:54am

Glideman....you're in smack dab in the middle of a bunch of people who love and care. Also right in the middle of alot of info. You can do it.....be strong...we're here for oyu...we're not leaving!!! luke

Title: Re: 24 Years with the Beast
Post by Charlie on Apr 6^th, 2004, 5:43pm

Welcome to the madhouse and I'm sorry you have to deal with this horror. If your kids will let you, try sleeping in a recliner. I'd usually have one less attack a night. Try some rather violent exercise when getting hit. It has something to do with circulation which seems to help. Here is another circulatory thing that worked for me:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this method but whatever it is, it 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 a slight expanding of the artery into your arm while at the same time literally 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 Strand

Title: Re: 24 Years with the Beast
Post by Woobie on Apr 6^th, 2004, 8:43pm

Welcome home Glideman!

;)

Title: Re: 24 Years with the Beast
Post by Jeepgun on Apr 7^th, 2004, 8:42am

I sh*t-canned the Depakote last night and started on Verapamil. I also got a course of Prednisone, but I am going to wait and see if the V-mil does the trick. I also got a couple of ampules of injectable Imitrex, and last night I used the first one when I felt a nasty cluster coming on. Holy shit!!! Instant RUSH!!!! It was like every drop of blood in my body was playing NASCAR to get up to my head. Ten seconds later, the headache wasn't even a memory. It was gone, gone, gone! :)

Title: Re: 24 Years with the Beast
Post by stuey on Apr 7^th, 2004, 10:08am

Imitrex is wonderful aint it.

Title: Re: 24 Years with the Beast
Post by Jeepgun on Apr 7^th, 2004, 11:28am

on 04/07/04 at 10:08:37, stuey wrote:

Imitrex is wonderful aint it.

Hell yeah!! Imitrex RULES!!! (well, all except for the price, I mean) ;;D :-/