Posted by Brandon on April 04, 1999 at 18:57:06:
Hello all,
Please bare with me on this one, this post a little long here.
It's been a while since I posted here as I'd been healthy for while and then very unhealthy and very unable to bare staring at the computer screen (it aggravates my clusters).
Well here we go - first here's my short medical rundown:
I've been suffering since January of 1987, a month before my 15th birthday, so that makes it just over twelve years now. I don't know how I've survived so long. I was diagnosed with Cluster Headache just over 6 years ago. I am periodic, and usually get the clusters on the right side, but they come on the left as well. I don't notice any difference in severity, except that maybe the cycles on the left side last a bit longer than the right. They also come sometimes at the same time as was the case with my current cycle. They usually come in the early winter, around mid to late December/ early January and can last anywhere from four weeks to five months, which is the longest they ever lasted, back in the winter of 96/97. They will usually go away for anywhere from a 6 months to a year and a half. Depending on how long they last when they come, I'm usually alright for the entire mid-Spring through late-Fall, when I have to start to begin to go into my Cluster diet again and avoid all my triggers (none of which seem to even remotely bother me when I'm not in a cycle - is this unusual?)
Okay, so I've been in this CH cycle since mid-December, it started on my right side, and then the left started up about four weeks later. At one point they were switching off, one on the left, one on the right and so on. Thank God they never came on both sides at once (this used to happen to me when I was younger). The right side has now subside for the past month and a half, but the left side lingers on.
I went to my health plan's treatment center two months ago, to try to get some sort of pain killer as I had had 5 clusters that day and had taken 5 20 MG Imitrex nasal sprays, which is way above the amount you're supposed to take , and couldn't take anymore ( my current doctor tells me it is alright to use more than the 60MG, for the nasal spray, limit in a day as Sumitriptan leaves your body entirely within two hours). That doctor wouldn't give me anything for the pain, but he did give me an injection of hydracortisone, and started me on a four week cycle of Prednisone. Later that night in the middle of my sleep, I had a CH attack and had to go to the emergency room. They shot me up with demerol,; that didn't really help. The cluster lasted all night, 8 hours, and didn't go away completely until I got home that morning at 7:00AM and had breakfast.
It was a week after that that I went to see my current doctor. He is a not just a neurologist, but a headache specialist and also works at the headache clinic at Mt. Sinai hospital in Manhattan. He knows his stuff, and I have come to trust him over the past few months. About three weeks into my Prednisone cycle, the Clusters came back, severely. My doctor then started me on Depakote. This was disatrous. The higher he made my daily dosage, the worse my clusters became; increasing in both frequency and severity. He stopped that and put me on a 10 day cycle of Dexamethasone. This was wonderful my headaches went away - until I came off of it. So, I started another 10 day cycle of Dexamethasone along side Three Calan Sr a day. The headaches stopped again, only the Calan caused a severe reaction - I had severe joint pains, couldn't walk, couldn't move, couldn't bare the pain. I once again had to get rushed to the emergency room in the middle of the night. There they gave me a shot of an NSAID (Non Steroidal Anti Inflamatory), I forget the name, but it was like a stronger version of Advil, and two Tylenol with codeine and a prescription for Vicodin HP, similar to Tylenol with Codeine, for the pain. I had to use it for over a week.
So, my doctor took me off the Calan and steroids to see how I would make out. The headaches came back within 4 days. He started me on another 10 day cycle of Dexamethasone. The clusters went away, until I stopped. this time it took them only 2 days to come back.
So here is where I stand now, and finally, if you've had the patience to read through this, is my question about the medicatiopn I am currently on. I am in the middle of another 10 day cycle of Dexamethasone, and on yet another preventative - this time Neurotonin, generic name Gabapentin. It is another anti-convulsant like the Depekote, which made my clusters worse. I can't seem to find any information on it though. I was wondering if anyone knew anything about this stuff? Also, I'm not so sure I trust it, as from what little information I can gather, it is similar to the Depekote. I can say this so far - after 2 days, I have had no clusters, but my head feels as if I could get a bad cluster, but the steroids are keeping them away. I don't know if this has anything to do with the Neurotonin or the bad weather we've been having. My doctor told me if I have any problems with the Neurotonin to just stop taking it. I think I'll give it one more day as the weather is to clear up, and see how I feel. Untill then, if anyone has any information on this drug, I'd really appreciate hearing about it.
Thank you for taking the time to read my rather elongated post.
Cheers and remission,
Brandon
bduhamel@banet.net