Posted by Joe Stone (216.160.142.162) on August 16, 1999 at 16:15:46:
Achem. Knock Knock, is this thing on? Ok folks. I have received countless emails about the topirimate or topamax research study I've been involved in and would like to give you all an update. Many of you have been asking for information about this new drug in posts as you've been hearing about it in the media as of late. A little over 2 weeks ago I began a research medication study with Dr. Jack Klapper in Denver for the drug Tompirimate or Topamax specifically to see it's effectiveness for clusters. The drug is manufactured by Ortho-Mcneil Pharmaceutical and is classified as an anti-convulsant. First of all let me tell you about Dr. Klapper. He is the real McCoy. No BS. I've been going to various docs for almost 18 years for my clusters and he is by far and away the most knowledgeable and compassionate. He is an associate of the now famous Dr. Goadsby among others in the field and is considered one of the best. I've done my homework. I went into this study as skeptical as always. In 18 years, I've had no luck. He on the other hand was very excited and told me that this was the most promising cluster medication he had come across. Before I go on I want explain that most of us that suffer from these devils are willing to pin our hopes on just about anything if someone tells them it worked for them so I ask you, please, please don't let your hopes get too inflated yet. The research is still fresh and information is still coming in as we speak. It's good to have hope but please remain cautious.
Dr. Klapper gave the me initial study results published sept. 3rd 1998 and in those results, out of 10 cluster patients who were given topamax, within 1-3 weeks, 9 of the 10 sufferers had gone into remission and cluster duration was reduced in all. Those statistics are hard to believe I know. I urge you to remain cautious. Information regarding those results can be obtained from Dr. Wheeler, Neurologic Center of South Florida, 8940 N. Kendall Dr., Ste. 802E, Miami, FL 33176.
I have been on the medication as I have stated for about 2 weeks. I am in about the 3rd or 4th week of my bi-annual cluster cycle that lasts generally about 8-10 weeks. I began the dosage at 25mg at bedtime for 1 week with no result. The second week the dosage was increased to 50 mg once in the morning and then at bedtime. Since the dosage was increased to 50 mg, I have not had a cluster in 6 days. It is possible that the interruption in my cycle is due to something else. But I certainly am excited about the possibilites. During a cluster cycle I will get a cluster almost every day until late in the cycle so this certainly is abnormal.
I do not recommend that everyone rush out to their neurologist to try this medication as it is still in the trial stages although I realize the agony so many of you experience. I am afterall a bit of a guinea pig. The only side effects I've noticed thus far is slight short term memory loss but that could be all those years from playing in a blues band.:) I am posting this message because we all need hope. It is my hope that this new drug is all that the research says it is but after all my years of experience with these intelligent little bastards, I will remain guarded and urge you to do the same, but also hopeful. I will continue to keep you updated on my progress and also on any more information I receive on the medication. I have put DJ in touch with Dr. Klapper and his research associate Chris Spangler and hopefully they can form a new partnership to further our cause. Thanks again DJ for all you do, nice talking to you for the first time, won't be the last. Good luck to you all. Have you looked out the window lately? The suns still rising.
Joe Stone