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        New Message Board Archives >> 2003 Posts >> Newbie Cluster Sufferer
        
(Message started by: Russ_T on Apr 14^th, 2003, 7:56pm)

Title: Newbie Cluster Sufferer
Post by Russ_T on Apr 14^th, 2003, 7:56pm

Greetings Board :) I'm a Newbie Cluster Sufferer with first onset 4 years ago and now "they'rrrrrrrre baaaaack." ::) This episode has lasted about 4 months, and the neuro has tried a variety of meds including Depakote, Doxipine, Prednasone, Varapamil, Axert, Demerol, Turadol, Naproxin, and many over the counter meds...and nothing is working! Had O2 treatments with temporary relief, as well as Ladicane - nope, nada, didn't work either. Had an MRI and EEG - both within normal limts and only thing MRI showed was my sinus problems, which is typical in the Ohio River Valley where I reside. I'm really concerned about all these meds and the long-term effects, especially since none of them are working. Any suggestions?

Please excuse the spelling errors - the fatigue and lack of sleep (thanks to the clusters waking me up a couple of times each night.) Oh, how I long for a complete night's sleep in my bed...instead of pacing the floor at 2:00 in the morning and then painfully dozing on the recliner nightly.

Title: Re: Newbie Cluster Sufferer
Post by Woobie on Apr 14^th, 2003, 8:08pm

Welcome to the board. You'll find a lot of helpful information and people here... and hopefully something that will work for you.

Sorry you're having to deal with the beast.. that bastard!

Welcome to the jungle!

Tina :-*

Title: Re: Newbie Cluster Sufferer
Post by cootie on Apr 14^th, 2003, 10:05pm

Hi Russ_T.........there's alot of info here........hopein ya stick around Pam

Title: Re: Newbie Cluster Sufferer
Post by Charlie on Apr 14^th, 2003, 10:36pm

Welcome to the fold. That's quite a salad you've had. I can't speak to drugs as I've only taken Inderal and that was long ago. Most CH drugs are newer.

Just wanted to say hi and that you're welcome. Stick around. Tons of good stuff and people who understand. Here is something I found very helpful:

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: Re: Newbie Cluster Sufferer
Post by JDH on Apr 14^th, 2003, 10:39pm

Hi Russ,
Sorry to hear you're hurting.
There's a lot of good info here so read all you can.
If you're concerned about the amount of meds you're taking you might want to give the oxygen another chance. A lot of us have had success with it.
pfdan's to you,

Jim

Title: Re: Newbie Cluster Sufferer
Post by cluster0557 on Apr 14^th, 2003, 11:19pm

Welcome, and wow to all the meds. Sounds way to familiar.

It is dejavu to what Iwent thru last year with med after med after med trying to 100% prevent the beast.

I finally gave it up and realized the beast is with me for a while. At least the last 18 months.

Only things that have helped me are high dose of Verapamil 240mg SR 3 x Daily and simple Melatonin 9mg at night with 10 mg Sonata. Everything else has made me worse sometimes with and without Cluster.

O2 also works for me if I catch the beast when he is awakening.

Like others before me said stay on the board and ask lots of questions. There is tons of experience with the beast here and the sounding board does help.

Title: Re: Newbie Cluster Sufferer
Post by Russ_T on Apr 15^th, 2003, 6:09am

:) Thanks for the warm welcomes. With a minor change in medication, I am celebrating a PFN for the first time in about 2 months, and hoping to have a PFD (not getting hopes up yet for the PFD.)

On the brighter side, I like music and dancing, but not with the Beast leading. I always take the lead when dancing :D

Title: Re: Newbie Cluster Sufferer
Post by echo on Apr 15^th, 2003, 7:59am

Welcome to the MB Russ. Sorry you needed to search us out. I too can relate to those 2am dances. It getes really old.

Hope you have PFDN very soon.

Title: Re: Newbie Cluster Sufferer
Post by cathy on Apr 15^th, 2003, 3:16pm

Hi Russ_T
Sorry your having to join the family but glad you've had a chance to celebrate a pf night here's wishing you a lot lot more.

W E L C O M E

Cathy :)

Title: Re: Newbie Cluster Sufferer
Post by catlind on Apr 15^th, 2003, 5:31pm

Hiya Russ,

Sorry you are having such a rough time. Lots of things to help can be found amongst the black squiggles.

Grab an oar and start rowin.

Cat

Title: Re: Newbie Cluster Sufferer
Post by Callico_Kid on Apr 15^th, 2003, 11:54pm

Russ,
Glad you found us, and sorry you're here. Check our all of the info available and don't be afraid to ask. There are a lot of CARING knowlegeable folks here. "This too shall pass."
jc

Title: Re: Newbie Cluster Sufferer
Post by Scotty_Dog on Apr 16^th, 2003, 3:35am

Welcome aboard Russ,

That 2 AM dance sucks the most.

About the meds and long term side effects, I have done the dance so doped up that I could do little more than drule and cry. I too have been a real enigma to the doctors for 20 years until this year. An old treatment not tried worked for me. The one thing that is hardest on your body in the long run is Lack Of Sleep! That can do some magor ageing on your system that you will feel in a few years. Just stay focused on getting pain free for now and deal with side effects after that.

Pain Free Soon I pray for you.

Scott

PS: Just for your information, we CHers have a, Strange kind of humor, but you will get use to it.

Title: Re: Newbie Cluster Sufferer
Post by Drk^Angel on Apr 17^th, 2003, 2:26pm

Welcome to the board! Sorry that the beast has jammed a red hot, rusty pipe in your cranium, and hooked it up to a high voltage cable to zap the Hell outta it. Welcome to the family! Good luck!

PFDAN................................... Drk^Angel