Posted by Debra on August 25, 1998 at 21:42:25:
In Reply to: Am I the only one? posted by JJ on August 21, 1998 at 16:43:04:
My heart goes out to you. I have suffered with CH for almost 30 years and in all that time I have tried about every remedy that exists. The only thing that really worked to prevent the headaches for the most part was prednisone, but after taking it on and off for 10 years in the 1980's I developed adverse side effects and dcided I just couldn't put my body through what the prednisone did to me anymore. Since my clusters are episodic (every 1 1/2 years for about 3 months) I get a break from the agony and can regroup. Also I usually do not get more than one attack per day or night, sometimes I'll skip a day or even two. I am about 6 weeks into my current cycle and have been getting more attacks in the middle of the night than usual. Anyway what I would like to express to you and other headache suffers is that what I am trying to do and have been for the last 6 years is to manage my headaches without the usual drugs that go into the body and leave us not feeling like ourselves! I feel that this illness has been a terrible cross to bear and I am not willing to loose anymore of the real me to being under the influence of prednisone (artificial well being), Tylenol w/Codeine (spaced out), sleeping pills to counteract the prednisone so I could get 4 hours of sleep!, potential liver damage from sansert, etc. Verapamil, cafergot, oxygen, didn't work. What I do to treat myself is really pretty simple. Of course it does not prevent the headaches, but helps me to get through them intact. Mine are usually about 1 hour, sometimes 3 at the most.
At the first sign of trouble I run to the kitchen and drop an Alka Seltzer plus into about 1/2 cup of water, while it is dissolving I quickly take my Lidocaine nose drops and lay on the couch with my head lying over the edge and turned to the right (side I have CH on) and drop 1/2 dropper full of Lidocaine in my right nostril and hold that position for about 2-3 minutes. Then I run to the kitchen and drink the Alka Seltzer. If I feel that the headache may not get full blown I just continue to keep busy as if nothing is wrong. If the headache gets going more I take a cold pack out of the freezer and lie down on the couch and press the cold pack on the side of my head. Sometimes crying alittle helps, I think the endorphins released help to block the pain. Also deep breathing helps sometimes to shorten an attack. I just recently got a prescription for Imitrex 20mg nasal spray, but I haven't tried using it yet. After the attack, I know that I'll be okay, and off I go - many times with a shadow headache or washed out feeling for awhile if I've had a long bout, but I love being me (except for the CH part) and feeling like myself. I guess because I've dealt with this since I've been 16 years old I've accepted that this is just part of my life and the less it affects my day to day life the better I can cope with it.
Anyway, I apologize for the length of this message. I thought you migth like to hear about another perspective on our problem. I know the pain is horrendous, and if I had multiple daily attacks as some people I probably couldn't stand to just treat them as they come. Well ,thats my story. Good luck to you , hope you find some relief.