Good News: Cluster Headaches
Cluster Headache Demon
I had my first cluster headache about 15 years ago. I didn’t know it was a cluster headache, I just knew it hurt so bad I wondered if I was dying. Incredibly intense, burning, searing pain on one side of my head and neck. To the point, I could barely walk. I didn’t find out what it was for many years. When I did and found the nickname was “suicide headaches”, I knew why!
At first I thought it was a freak. But I started getting them at the same time every day. Over the counter pain medication did nothing. One night I took a total of 16 aspirin + tylenol + ibuprofen. The pain is so intense it drains you, and you are exhausted the next day. The headaches are completely incapacitating. You can’t do anything. I doubt I could drive a car safely.
After several doctors visits, xrays and catscans, one doctor thought it was sinus related, so I had sinus surgery. By the time the surgery happened the headaches had mysteriously disappeared, after putting me through hell for several months. They returned several years later, so the surgery was a waste of time.
At the worst, I was getting the headeaches several times per day. Certain patterns emerged. One thing that triggers a cluster headache is sleep. Whenever you enter REM sleep, you are wrenched from your sleep with the worst headache you ever had. It will last 1 to 2 hours, and then go away. Often you can get back to sleep but sometimes you are awoken with yet another headache when you hit REM sleep again. This happens every night. Its a known symptom of this disease.
There are some obvious implications here, like sleep deprivation. I countered that with caffeine. I drank about 2 pots a day at the peak in order to stay on my feet and be able to work. I lived in constant fear the headaches would get worse (but how could they be ANY worse!), or become more frequent.
Another “trigger” for me is alcohol. A half a beer would put me on my knees. No brainer: I quit drinking totally. There was no choice. When I am not in an “episode”, I do drink, but never in an episode.
So the pattern was several headaches per day, often at the same time every day, and they would last for weeks or months, and then go away for years.
During the onslaught of one episode, I was researching pain medication online, and ran across “Cluster Headaches”. I never heard of them. I went to Wikipedia, and couldn’t believe what I was reading. It fit me to a tee. I was incredibly relieved to know what I had, and that I was not alone.
The bad news is that there is no cure. There is some understanding of what happens during a headache and some treatments are available now. But on one knows why they are so episodic. I go 2-4 years between episodes. The episodes have gotten much shorter and the headaches are not as bad now. Still an ass-kicker but not as bad.
Now the good news: I saw a neurologist recently, and commented on the declining length and severity. And he told me that was true, that they would probably get less frequent and less severe.