Posted by Bill 47 (165.121.37.46) on October 15, 2000 at 11:47:40:
Well, here I am, another newbie to a board as a fellow Cluster Migraine sufferer. Condolences to all who endure these headaches, and to the families who support them. I sit here now, with an icebag on my head(close to the right side), and chocked full of pain meds, slowly coming out of the pain.
For 35 years, I have been dealing with Cluster Migraines. The medical community has given me a wide variety of tests, and no physical causes found. I have experienced a wide variety of medications, and no real relief. The last time I experienced the usual CM attack, was in 86. My usual cycle was about once a year to a year and a half, for a period of three months duration, from occasional, to high intensity, back to occasional, til they were in remission. In 86, it was so bad, that I had made four trips to the ER. But since then, I have experienced only mild CM's, and the cycle seems to have altered. Three years ago, I went through three weeks of CM's, and they never went to full intensity. Now, since three weeks back, they came on so sudden, and with such intensity, I was caught completely off guard. It wasn't so bad at first, the Excedrine seemed to do the job. But by the beginning of the second week, they increased in intensity of pain I went to the doctor, and added Tylenol-3 to the mix, and that works. I also was given an appointment to see neuro. He added Imetrex inhalers, and Gabapentin to the mix. Imitrex works, but I had to go from three gabapentins a day to four. Plus, this week, they added Verapamil-SR to a new mix.
Previously, my ability to use biofeedback(of a sort), along with my meds, sufficed to make my passage easier through the pain field. But late last week, it seemed to get more often and more intense. It caused me to lose three days from work, because I was getting virtually no sleep at night. Like clockwork, around the hours of 11PM, 2/3AM, 4/5AM, they hit and hard. Friday(meaning thursday night), I finally got 5 hours sleep, before a CM hit, and I was able to fend it off with quick results.
So far this weekend, I am managing to get more sleep, but the CM's keep hitting, like while we were out shopping for items for a dinner dance that we are putting together, celebrating our 25th anniversary, next Saturday. I have to keep my meds with me, and water as well. What's funny,is that I carry a virtual medicine bag with me, replete with a bottle of water, even while we go shopping. It has come in handy too.
With my use of imitrex, for the first time, I have been able to "manage" the pain aspect, without having to rely on the ER. But the problem is, that my HMO is restricting my ability to obtain imitrex under their coverage. I was allowed five refills, at the cost of $7. Now, with my last refill sitting in the bathroom, my option for future refills is that I pay the full cost of $110/bx, of six inhalers, with the directions, of use per headache, but only a max of two a day. But when you get 3, 4, or 5 attacks a day/night, what can one do? So I will just have to save these, for those times when it is really needed, and hope that Excedrine/T-3's can handle the job. To say the least, after so many years of begging for something to deal with the pain, I finally find something, and they place restrictions on it, by reason of cost. And that is exactly what my Neuro doctor said, it was because of the COST, despite that my premiums are far more than the cost of this drug. So here, is a clear example of how these HMO's have stepped in between needed healthcare as determined by the doctor, and muffled his interaction with the patient. Now, everytime I have an attack, as I did this AM, at 3:30, and still have remnants of it in my head, I curse these HMO's with every surge of pain experienced. And yes indeed, I have written them a most strongly worded e-mail, with copies to my regular doctor and my Neuro doctor. My wife say's that it is ok, we can pay the money for the refills, but that I feel is still wrong. We have been paying them premiums for the last 17 years, and hardly ever made any heavy demands. But now I find something that really does help me to beat down the severe CM pain, that allows me to "MANAGE" the pain, and they want to play their stupid economic games. I don't know how much longer this series will last. I am doing everything I can, diet, rest, TRYING to monitor stress, following medicine routine, and trying to get enough sleep. But they continue to come on and sometimes I catch it early enough, and sometimes...
Anyway, sorry to be long on this, but right now, knowing that I am amongst others, who know the situation first hand, and feeling pain, and anger, not to mention that I think I have added to the stock prices of Kleenex as well(yes, I still can laugh a bit too), I could unload a bit.