oh boy, this is gonna get long...

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Posted by stavi ( on May 25, 2001 at 14:11:56:

In Reply to: Cluster, Depakote, Bipolar and The Cure posted by Gordon on May 25, 2001 at 12:32:42:

You said:
"Now it seems as though it is about an inner circle of friends who have started
Social Club for Clusterheads.…Let the beast feed on the inner circle."

No, I'm sorry, but no matter how hurt your feelings are that not everyone here agreed with you, there is no excuse for wishing this kind of pain on anyone. Ever. That's just plain hate.

I certainly don't consider myself one of the 'regulars' here. Some people may recognize my name, others may not. But I have to say if it wasn't for this so called "inner circle", I wouldn't be approaching my 11 months (11 MONTHS!!!) pain free mark!

I don't post regularly, but I read this board every damn day. When I first found this board well over a year ago, I read every post, skimmed every archive, and checked out every link available here. And what I have learned in the past year is this: We really don't know how clusters work, but we do know that when it comes to treatment, what works for some doesn't work for others. Many people here have found great success with Verapamil. Good for them! It didn't do a damn bit of good for me. There is a huge list of medications that work for some, don't work for others. It's all par for this cluster course. My doctor wasn't comfortable keeping me on Depakote, because I am a woman of childbearing age, and some studies suggest that stuff isn't too great for babies. It was my choice to make - but for me, not a risk I am willing to take. Every person has their comfort level in regards to the best form of treatment for them. And I respect that.

I am glad that you have found relief with Depekote. But before you go burning bridges and wish cluster pain on people, think about this. Some people have wonderful results with a drug for several cycles, then BAM! It stops working and they are back to square one. It's a scary fact of life we all have to face. It's part of this disease. Or maybe a change within your body makes it impossible for you to continue taking it. It's horrible to think about, but not at all impossible. Some people aren't comfortable with the side effects of certain drugs. I, for one, am not. I urge you to check out this link: http://www.fda.gov/cder/ogd/rld/18723s28.PDF
If you know the risks and are comfortable with them, good for you and I wish you the best of luck and constant pain-free days! I know I am enjoying mine, and I truly want the same for each and every clusterhead!

I think you may be on to something with the bi-polar angle. I say dig as deep as you can, and keep us all informed. It is the only way we will ever find answers. I also happen to agree that not every clusterhead is bi-polar and visa-versa. But if it's something you are willing to research, then everyone benefits.

That said, in the thread further down the board where Margi posted the info hallucinogenics, I gotta tell you that thanks to the information I received from folks here, I owe my 11 pain free months to the shroom treatment. You stated that you would rather sleep through your cycle with legal narcotics and leave the shrooms for play. If you do the research (like you said, the search engine is there for you to use), you'll see that it only requires one sub-hallucinogenic dose to get 6 months of relief. And it's much less toxic then narcotics and not at all addictive. In fact, it's counter-addictive. Now, if you don't feel comfortable trying it, I fully respect that. And if you do wonder into your cow pastures, I can only hope it works for you like it did for me. A lot of people are finding success with this treatment. It's worth keeping an open mind about. I'm not trying to convince you to go this route at all, I just want to point out that when people make light of something, it's detrimental. So keep an open mind, research what you believe and find pain-free days!

Okay, down from the soapbox I come!

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