Posted by Greg from Cincy on October 28, 2001 at 08:23:16:
After a 3-year remission (my longest in 26 years), I aggressively attacked the cluster cycle that began Sept. 15, 2001, with the help of an able and accommodating neurological team at the Cincinnati Headache Center.
My last cluster cycle went three months, longer than my typical two-month pattern, and I finally was prescribed lithium. As with all meds, who knows whether the lithium helped. I was just relieved that I was not crossing over into becoming chronic.
(By the way, I am unusual in that for years my clusters were all left orbital; in recent years, my cycle begins right-orbital, then switches over to the left, which is the sure sign the attacks will get worse in frequency and intensity.)
This time, my doc agreed to come out swinging at the first bell: lithium (building to 300mg daily) and prednisone (60mg daily). I got my big oxygen tank at home and smaller canisters for my car and office. For rescue meds, I was armed with lidocaine spray (which soon became ineffective as the cycle progressed and was replaced with Stadol spray), DHE (Migranal nasal spray), Imitrex spray (I was in a clinical trial for this three years ago at the Headache Center) and Zomig 5mg tabs, as well as a sedative for sleep (much needed when I reached the point of averaging 3-4 hours nightly because of attacks).
(I asked my neurologist why is it that lithium usually is prescribed only when the doc thinks the cluster patient is becoming chronic? If it can be effective in ending a cycle, why not try it at the beginning? He agreed. Why not? he said, so we went with it up front.)
As I reached the peak of my cycle, with a couple of monster attacks (9 on the scale) and numerous rebound attacks through night and day, I found the following drug combo is working. I'm not just geting relief during what usually would be the peak of my cluster cycle. It appears to be retreating after only five weeks. And I have tapered the prednisone to only 15mg daily, on my way to getting off of it entirely.
Med combo: Lithium (100 mg 3x), prednisone (15 mg daily). Zomig 5mg tablet at bedtime with mild sedative.
I have had some mild attacks that are quickly subdued with oxygen (7 liters per minute, per Kudrow's guidelines). I've had a couple of those days with the constant throbbing and mild pain that are more typical of migraine, and a 5mg Zomig tab relieves that.
Of course, I know what works for one sufferer may not work for all or any of my fellow sufferers. But it may be worth discussing with your doctor.
I also realize all too well the expense involved. Even though I have prescription coverage, the co-pays are a big hit to the wallet. I can get only 3 Zomig tabs per prescription ($20 co-pay each time), but my insurer so far has not limited refills. I asked the pharmacist how much it would cost if I bought 30 Zomig tabs "out of pocket." The answer: $500!!
I wish all of you the best in your struggles with this demon condition!
Greg from Cincinnati
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