Posted by drummer on April 05, 1999 at 08:09:49:
In Reply to: My Current Cycle and Treatments and a question about a Drug. posted by Brandon on April 04, 1999 at 18:57:06:
Hey, Brandon, How are ya? (Sorry, stupid question). I'm 15 years chronic. The first 3 years I never saw a Doctor. I just muddled through the attacks hoping they would just disappear. I figured out a way to only have the attacks every other day though. You see I would just drink a lot of alcohol, which always triggered an attack. The following day I would have a hangover, but no attacks again until the next day. This system of "pain management" wasn't really helping my personal and professional life. I lost a few girlfriends and a few jobs during this period. YA HOO!
Please understand that the attacks at that point in my life were 6-9 a day, except on hangover day, and rated between a 7 and an 8 on the cluster headache, (1-10), fun scale.
Anyway, at the start of the 4th year I decided to see a Doctor. He prescribed Calan SR. I have been taking 720mg of this drug ever since. I believe this drug acts as a blood thinner. Once or twice the pharmacy has been out of Calan SR and they replaced that with Verapramil. Verapramil didn't work for me. The Calan SR stopped working the year after I started taking it. I still take it anyway. I guess for sentimental reasons.
YA HOO!
After the Calan SR stopped working I went and saw a neurologist. He prescribed Lithium, which I believe is a drug used in controlling depression. This drugged worked for about 3 months. He then prescribed Depakote. This drug also worked for about 3 months. Each of these drugs had their own unique side affects. The Lithium left me feeling as if I was riding an elevator all day. (dizzy,uneasy, etc.). The Depakote made me shake. I also had to have my blood checked every so often to see what the drug was doing to the rest of my body. YA HOO!
During the time of experimenting with those drugs the frequency of attacks went down to 2-3 a day and only rated a 3-5 on the cluster headache, (1-10), fun scale.
I have since stopped taking the Depakote and the Lithium. My neurologist then prescribed Prednisone and Oxygen. The Prednisone was supposed to be taken on a tapering scale, meaning increasing the dose and decreasing the dose over a period of time. The Oxygen was prescribed to be inhaled at 10 liters during an attack. The only reason my health insurance paid for the Oxygen was for my neurologist to lie and say that I had migraines. You see Oxygen hasn't been proven to assist in managing cluster headaches. I don't know why it's not proven to work. All I know is that it decreased my attacks from an hour to only half an hour. YA HOO!
Again the Prednisone stopped working after a few months and then my neurologist prescribed Ercaf for the attack itself. I love my oxygen almost as much as I love my Ercaf. It seams that although the oxygen lessens the attack it doesn't keep the attack away for very long. Maybe 6 hours until I get another attack. The oxygen coupled with 2 or 3 Ercaf keeps another attack away for about 12 or 18 hours. YA HOO!
Well I just summed up 15 years of my life with these cluster attacks. 2 months ago my neurologist prescribed Neurontin. This drug he says is similar to Lithium with less side affects. So right now I take the 720mg of Calan SR and 2700mg of the Neurontin and the Ercaf when the attack strikes. For now I'm in love with these drugs. I get an attack only once a day. The pain is only a 2-3 on the cluster headache (1-10) fun scale. YA HOO!
My neurologist says I can up the dose of Neurontin to 3600mg a day. The Ercaf should have caused damage to my body by now, (been taking it daily for 9 years), but for some reason I have not had any adverse affects. My neurologist says that cluster guys seem to be able to handle a lot of medication. YA HOO!
The other thing I do, that is a lot of fun, is I use an over the counter arthritis cream called Capzasin-HP. I rub this cream in my left nostril, which is the side of my face that lives through the pain. This cream is a derivative of some kind of pepper that is supposed to eventually deaden the nerve causing me pain. This stuff burns like a son of a bitch but does seem to be deadening the nerve a bit. I put it up my nose 3 times a day. It's funny because the warning on the tube says not to put it on mucous membranes. YA HOO!
Well to make a long story even longer, the Neurontin is working with no side effects. The Ercaf helps with oxygen at the time of an attack. When/If, well probably when, the Neurontin stops working I'll let you know what drug I get next. YA HOO!
Now for my personal opinion. Please remember, I am not a doctor, I just play one on television. Pain killers do nothing to destroy the evil in your head. Like you the demon is very intelligent. It's sole purpose is to cause pain. Since there is no known cause for clusters and the medical community only knows that the pain travels through the Trigeminal nerve and that it seems to stem from the part of the brain that causes depression, they have no choice but to experiment with drugs that affect that area of the brain. Obtain a doctor that you trust and let him start the experiments. After all when you read all the posts on this site, that is all that we cluster guys and gals really do. Experiment, experiment, experiment. YA HOO!
Good Luck
See Ya