Posted by Carl D (208.4.16.121) on August 30, 1999 at 11:27:16:
Hello all. Yes, I am back. I'm not leaving the board because of...well, you know. I am resolving to ignore the hate posts, the attackers, and all of the people who have nothing better to do than pick a fight...Here's a tip though - it's called WCW...look it up. And if anyone still wants to hassel me or send lovely death threats, please send all bashings to WWW.KISSMYASS.COM - thanks.
The demon seems to be getting winded. My attacks are slowing in frequency (2 to 4 A day) and last night I only had about a 4 and fell back to sleep afterwards.I woke up shadowing this morning. Last two days the shadows have been light, and so have the H/A's. One brutal one Early Sunday morning, a light one in the afternoon, and none until I went to bed. I won't jump for joy though, as this has happened 3 other times in the last 18 months, where I thought I was going out of cycle (maybe even 2 days H/A free) and then BAM! Started getting slammed again. I'm hoping, I'm praying - and taking a different course of action.
A man named Lance Griffin E-Mailed me about an experimental treatment he devised after doing research on clusters (he is also a sufferer). He realized (like some of us) That the treatments the Docs prescribe can actually do you more harm than good. What good is it to be finally free of CH's when your on an organ donor list waiting for a new liver or kidney? He has his own company called "BIOMAX FORMULATIONS" and sells alot of vitamin supplements and such. He contacted me about a treatment he researched and developed to use for himself. While the materials are costly and have to be imported from Germany, he created a nasal spray from a substance called "Methylcobalamin". It is a derivative of B-12 and works as a cleanser for the brain, so to speak. After researching this stuff, I found out it is also used to treat Bell's Palsy, Parkinsons, and other Neuro disorders. Lance told me most neurological disorders are linked to what is called "glutamate sido toxicity" and the Methylcobalamin actually fights this. Well, His cycles run like clockwork:6 weeks in - 4 1/2 months out. So he started this treatment a couple of weeks before he anticipated his last cycle. He said he had not even a twinge of a CH. He has also tried this with two other H/A sufferers (CH?) with success. After reading my posts, he got in contact with me to see if I would be interested in trying this for myself. If goat urine taken intraveniously seven times a day will take away clusters - I'm There. Call me crazy - but only the chronic ones will understand what I mean. When there is no end to the pain in sight, you start digging tunnels. Anyway, I began this alternative treatment yesterday, along with a sleep enhancer called "Slumber Spray" (melatonin and serotonin). Still tossed and turned thru the night, but I just started. May take time to build up. Research has shown that CHeads have lower serotonin levels than most people, which can result in sleeplessness/insomnia. The Methylcobalamin is in nasal spray form, and is used four times a day. No side effects. Thats what I like the most. I will love it if it works, only drawback is this stuff isn't cheap. Like I said, it is imported from Germany and then has to be transduced into a soluble form for the nasal spray. I will keep you updated to let you know how well it works.
And now, I would like to apologize for my vulgar display of attitude on this board. Not to excuse it, But I have gone thru hardcore sleep deprivation (to the point of hallucinating and feeling like I'm made of lead) Hardcore pain (which I'm sure you can relate) and have had nowhere else to turn. CH's have ruined my life, and robbed me of time. CH's can be very cruel, as some of you know, when no one around you understands and your familiy is dumbfounded. It can be very discouraging - to the point of wanting to give up. Some may look at Elaine in a negative light for her actions, but in my eyes she has done what any normal human being would do if they reached that breaking point within themselves. I remember a story of a POW who was tortured for a long period of time and he said all he could think about was death. The end. When you go thru torture on a daily basis, it can mess you up. I think Elaine is very strong and once she is past this - will be ten times the person she is right now. Trials build character - so I'm told. Everything happens for a reason - so I'm told. But when it comes to CH's and the suffering that goes with it, I don't need to be told. Just trying to put it all into perspective and take this evil thing and make some good come out of it.
Ok, so now I am rambling. And I feel good. Better than I have in awhile, though I still am having light shadows. I feel spunky. Ready to go out and beat up the ice cream truck that keeps playing the bell version of "Louie Louie". Glad to be alive today. It's a beautiful day... hope it gets even better than this.
Remember, if you wish to contact me, click on this blue link, if you wish to send hatemail/bashings, those are all being taken at a new source. Please send all of that stuff to the following address: WWW.KISSMYASS.COM. Thanks, and God bless.
"I'm the root of all thats evil yeah but you can call me cookie" Carl D