Living with the Beast

Hello family and friends. I have been thinking about starting a blog for many years to record my life, opinions and theories. Being the procrastinator that I am, it just hasn't happened until now. My current condition has pushed me here to try and share what it is and what its like for many other sufferers. First things first, I'm not writing this to get sympathy, or for anybody to feel sorry for me. It just helps to know that people might understand in some way. When I tell people I suffer from clusters, they assume it is a migraine. While I do not intend to take away from migraine sufferers, these are nothing like the standard migraine headache. Let me explain.

Back in 95-96 around the age of 20, I was told I "may" have cluster headaches. At the time I was a painter in the Santa Rosa area. I started getting these weird headaches of the likes I had never had before. At first I thought maybe stress, maybe my diet, or something of the sort had set them off. My sister suffered from migraines in her younger years, so to me it was not too far fetched that I too could be suffering from the same. The one day while working, I had a headache so intense, so excruciating, that I was unable to speak or function at all. One side of my face became blotchy, and my right eye swelled shut. At this point I was sure something was seriously wrong. I now know, as bad as they were, that the headaches that started them off, were mere shadows of what was to come A tumor, a blood clot? what could possibly account this this amount of pain?

After several days of experiencing two of these headaches a day lasting about 45 minutes each, and constant shadows in between, a had had enough. Not having insurance, I ended up at a walk in clinic. At the time of the visit, I was not having a headache, and they told me there was nothing they could do. The doctor did know of clusters, (which now looking back, surprises me) and told me that may be what I was experiencing. I left with a list of migraine triggers, and a prescription for ibuprofen, which of course did nothing. a couple months in to crossing triggers off the list, they just stopped cold turkey. At that point, I had made it to MSG on the list. Maybe it was the MSG? Maybe it was the paint fumes that I breathed every day? I was just glad they were gone and wanted to move on and put that part of my life behind me.

A few years later I was living in Lancaster cali and working as a mechanic in an auto shop. One night, without warning, I was awoken with the all to familiar sensation of an ice pic not only being stuck in to my right temple, but as if it was being stabbed in, and ground around against the back of my eyeball. I guess it wasn't the paint fumes after all *eye roll*. I hadn't thought about the "beast" since my last cycle had ended, expecting to never experience them again. I was told by the doc at the walk in clinic, that I probably had clusters, but myself not having internet access back in those days, I had never researched them, and had no idea they might/would come back. That night was the worst, but not because of the pain. As I rocked back and forth, crying, grasping, and beating on the right side of my head, rolling around on the floor, pacing an angry pace, moaning, yelling out to "Just stop!" pleading to "please please just go away PLEASE!"  it finally hit me, it was back. The fear that thought brought to me was almost, almost, as bad as the pain. I knew if it was anything like last time, they would get worse, a LOT worse. On a kip scale of 1-10, this was maybe a 7. (I'll explain more about the kip scale in a few.) Were they here for good? Could anybody help me? The answer was no. While no, they were not here for good, at the same time, I couldn't get help. That cycle lasted for about four months if I remember correctly, hitting every morning and evening after work at just about exactly the same time everyday, as if it was a scheduled beating.

The next couple of cycles were in 2000 while working with my father in AZ as a framer, Then again a couple of years later while back in Cali working as a mechanic again I had gone to the emergency room, had CT scans and lots of tests of the sort. It wasn't until 2004 I seeked help from a neurologist. Again not having insurance, I went ahead and paid for this visit. She again gave me a list of migraine triggers (keep in mind, these are not migraines) a prescription for depakote, (which most in my family know is a seizure medication) and some sample of a tripton medication. None of this worked, though I must admit, I never bothered with the depakote, simply because of what I learned soon after.

It was at this point, I finally started doing my own research. It had never occurred to me that the answers I wanted were at the tips of my fingers. I was told the condition was rare, so I just didn't think there would be much information out there. To my pleasure, I found a couple of support groups. "Support" let that sink in for a moment, all these years, I knew nobody that had clusters. The doctors were just a plain waste of time, I had become hopeless. While I would not wish this pain on my worst enemy, I remember reading testimonials of other sufferers and crying thinking, "Thats it! thats exactly it!" and  "finally, I know where to find people that can relate." I read everything there was to read, and learned way more then I thought I ever would from these groups. I called the nero I had recently visited and asked her for a prescription for oxygen, which is used to abort an on coming cluster. She refused explaining that she didn't believe in those treatments. *sighs*

I learned there are two type of sufferers, episodic, and chronic. I thank the stars everyday that I am not chronic, for they deal with the beast on a never ending bases. Episodic sufferers, like myself, get them in "clusters" every few years for most. I learned of the kip scale which is a scale drawn up by a gentleman by the name of Bob Kipple. This gives one an easy and quick way to explain to those around me of my current level of pain with just having to speak a number. It is as follows.

Pain level 0
No pain, life is beautiful
Pain level 1
Very minor, shadow's come and go. Life is still beautiful
Pain level 2
More persistent shadow's
Pain level 3
Shadow's are getting constant but can deal with it
Pain level 4
Starting to get bad, want to be left alone
Pain level 5
Still not a "pacer" but need space
Pain level 6
Wake up grumbling, curse a bit, but can get back to sleep without "dancing"
Pain level 7
Wake up, sleep not an option, take the beast for a walk and finally fall into bed exhausted
Pain level 8
Time to scream, yell, curse, head bang, rock, whatever work's
Pain level 9
The "why me?" syndrome starts to set in
Pain level 10
Major pain, screaming, head banging, ER trip, Depressed, Suicidal.


Notice the last word there for a kip 10, suicidal. These headaches are often referred to as "suicide headaches" which I can totally understand. They are also clinically noted as "The worlds most painful disease on the planet known to medical science" as Quoted by Dr. Peter Goadsby.

Last night was a kip 7. But my cycle just started again a couple days ago, they'll get worse I'm sure. As I am writing this, my hands are shaking because I am hopped up on energy drinks, the taurine they contain can help keep the beast at bay, I've aborted two today so far, but you can only drink so many of these, plus they don't always work. Currently I am at a kip 2. Anymore then that, I doubt I'd be able to type this, let alone be able to think clearly enough to be writing. Even when not having a higher level headache, the shadows stay around pretty much through my whole cycle all day, everyday. They keep one in constant fear, and serve as a constant reminder that the beast will be by for a visit sooner rather then later.

I hope my coworkers, friends, and family take the time to read this. Not to feel sorry for me, not because I expect any special attention. But because not only do I get tired of trying to explain it, and feeling like I am whining, It's nice to know that maybe, just maybe, they'll understand why I will be a bit off for the remainder of this cycle.

Thanks all,
and to any other sufferers that may be reading this, I wish you a pain free day.


Below I thought I'd add a clip from the documentary "clusterheads" There are many such clips on youtube, but I don't feel bad posting this as it was in the movie.