Posted by Gordon (63.13.46.202) on July 09, 1999 at 06:35:40:
The Devil has taken me prisoner again! He has abducted me from my family and friends and taken me to his lair. Since I am his captive he will come for me again and again, he will torture me until I cry and beg for release. But he doesn't want my capitulation, surrender means nothing to him. He wants to see the pain! He takes the red hot poker and sticks it in my eye, I breathe deeply and relax, tell myself that he has done this before, hundreds and hundreds of times before over the last twenty years. I know he will not kill me, but I wish he would. I stay composed as the poker sears my eye and penetrates my skull, breathe. He pulls the poker out and relief, breathe, relax quickly, he's just started. In again, deeper, deeper, the pain is unbearable, breathe, breathe, whimper. And then back out, nope, not done yet. Back in deeper and deeper. He continues over and over, the more I endure, the harder he pushes, it continues until I am crawling on the floor groveling like a pitiful beaten prisoner begging to be put out of his misery. 1-2 hours later it's over, what's left is the shell of the man I am, beaten and exhausted from the struggle. Barely able to stand and open my eyes, where am I?, what time is it?, a need for sleep. If I was lucky, I would fall asleep as the torture was ending and I would wake up several hours later feeling alright with no signs of the torture, but I never have been very lucky. The sickness the torture has caused my body will last 2-3 days, unless of course, he selects me again and snatches me from his lair.
I am 44 years old and have had cluster for 20 years. I am episodic and get six week episodes every 8-16 months, the attacks begin occurring once per day on non-consecutive days and quickly increase to several times daily, then several times everyday. There is no doubt what is occurring from the moment of the first attack, there is no other pain sensation that has any resemblance of a Cluster attack. The last three episodes have lasted six weeks to the day. I am on the last day of the fourth week of my current episode. I have just finished a 15-day prednisone burst, 5 Imitrex injections and 70 percocettes, the clusters have not subsided. I typically get 4-6 triggers a day, each one can be a full blown torture chamber. My trigger is a light stabbing pain in my eye, just like the torture only lighter. My hands start to tremble and I feel as though my pulse has quickened, he's telling me he's chosen me and is coming to snatch me from his lair, to take me back to the chamber, back to groveling like a baby. I usually have 20-30 minutes to hide, the race is on. As soon as I feel the trigger, I take a percocette, try to sit in a cool, quiet area and wait to see who wins. If he wins after 20 minutes, the light stabbing will increase dramatically and the torture will begin. I will take 1 or 2 more percocettes, lay on the floor and try to keep some kind of perspective through the torture. Hopefully the drugs will put me out before he does. If I win, the light stabbing pain will disappear and I will be alright for that one. I do not even notice the percocette, no "high" that comes narcotics, nothing. For the last 15 days I have treated each trigger with percocette. I was too slow or asleep a dozen times, five times I used the Imitrex injection and got complete relief within 15 minutes, the rest of the time the Devil took me into his chamber and had his way with me. That makes 60+ torture episodes that he didn't catch me, I was lucky. But alas, all good things must end, the percocette has lost it's effectiveness, I have one Imitrex injection left for this month, AND I STILL HAVE TWO WEEKS LEFT IN THE DEVIL'S LAIR!!!!!!!
Tomorrow, something new, one DHE injection every 8 hours for 72 hours (9 total) self-administered intra-muscular, 160 mg Verapamil per day for 3 weeks, 600 mg Lithium for 3 weeks, and a 50-day prednisone burst starting at 60 mg per day. The 325/5mg Acetamin oxycodone (percocette) has been replaced with 5 mg Methadone, I will use it the same way.
If I am lucky, by Monday, the episode will subside and my life will return minus the last month. But I never was very lucky, so the episode will continue for two more weeks, just as it has done for the last 20 years. I will struggle through the torture, trying to keep my sanity and my life intact until the Devil sets me free again.
I am a righteous man, not a sinner, not a saint. I live and let live, I have never done anything to deserve this, why has the Devil singled me out among so many. I have lost 6 weeks a year over the last 20 years. My perspective has changed also, each month free from the episodes becomes a time to do, to enjoy, to celebrate. I have always been somewhat manic, I put extra fervor into everything I do, but the cluster has driven me more, time is too short.
I found this site during my last episode in October and have found it very gratifying. For 19 years I felt like a fluke of nature, playtoy of the Devil, punished for no reason. I had no idea the specifics of the Cluster Disease. The literature available and physicians I saw treated me like a person with headaches. Cluster does not and should not be considered just a headache, it's a disease, there's not just the actual attack, there's a sickness that occurs after the attack is over, the continual stabbing in the eye, the nausea, loss of energy and appetite. After six weeks of an episode I am physically spent, it takes weeks to recover. I am a short, lean, muscular athletic type of person, I have lost 9 pounds in two weeks, now weigh 117 lbs. I drink quarts of water and take feverfew and St Johns Wort daily. This disease drains everything from me.
It's unfortunate, but I'm glad there are other people like me out there, I'm not alone. I have read and re-read the quotes at the start of this site and it makes me cry, I know and you know, but nobody can ever know what it's like unless they've been there. I'm no stranger to pain, but nothing can ever be so bad. I have been suicidal, I have been in despair, I have fought the Devil for 20 years and would do anything to be free forever.
I'm happy just to be able to write these things and share with co-sufferers, it's 320 am and I'm still awake, it the Devil's time and I want to be awake when he selects me. Goodnight.