Anarchist to Abolitionist: A Bad Quaker's Journey

Fun With Cluster Headaches 2: Electric Boogaloo

El Cajon Pass (elevation 3,777 feet) is a mountain pass between the San Bernardino Mountains and the San Gabriel Mountains in Southern California. It was created by the movements of the San Andreas Fault. Located in the Mojave Desert, the pass is an important link from the Greater San Bernardino Area to the Victor Valley area of the Mojave Desert, and passages northeast to Las Vegas.

The El Cajon Pass is where I experienced my first cluster headache, back about 1990.

Wikimedia

I was driving my family north, back into the Mojave, after some excursion that escapes my memory. Maybe we went camping or something. I don't know. But in heavy traffic, at around 50 MPH, about half way up El Cajon, I felt what can only be described as the most intense pain I had ever experienced to that time, in both eyes at once, along with the sensation of a spike being driven into the back of my head.

I was completely blind at 50 miles an hour in the center lane of three north bound lanes, while experiencing what has been called by some a "Suicide Headache". They call cluster headaches "Suicide Headaches," because so many people suffering clusters have killed themselves by drilling holes in their heads, or using power hand saws to remove their own skull caps. It's not really suicide, the victims are trying to relieve the incredible pressure they feel, and the pain makes them delusional. That's what I was experiencing on the freeway that day. Somehow, I was able to get to the shoulder of the highway. It lasted about fifteen minutes.

I had one more cluster attack a few months later. Then I was free of them until autumn of 2002.

Fast forwarding to 2002, and after Homer's woman busted me in the head with the Dayton phone book, I began a cycle. At first, the clusters would hit randomly, and last anywhere from a few seconds to about fifteen minutes. Then, they slowly transitioned to only happening at night, around the time of the morning when the original concussion actually occurred.

By December 2002, they had developed a predictable pattern. At around 1 AM, a cluster would hit, waking me up and knocking me out of bed, onto the floor. It would last fifteen minutes and stop. Then, at about 4 AM, another would hit for fifteen minutes and then stop.

In addition to the cluster headaches, my neck, left arm, and shoulder, were hurting more and more every day. The first strike of the phone book had reawakened the vertebrae damaged from the crashes back in 1996.

By my doctor’s advice, I began physical therapy on my neck, but that seemed to make it much worse. My doctor had never heard of cluster headaches and had no experience with concussions. I still hadn't heard of cluster headaches, and didn't associate the concussions with any of these problems.

By January of 2003, my left arm was almost unusable. I couldn't turn my head, and the nighttime clusters had caused sleep deprivation, sparking daily migraine headaches. About mid-January, my doctor declared me disabled and unable to work. I can't explain how that made me feel. All my life, no matter how bad a situation was, I could always just leave and get work somewhere else. Now I was trapped. I could do nothing and I didn't know what was happening to me.

The intensity of the clusters was such that I had clinched my teeth so hard, that I had sheared the tops off of two molars and cracked several others. I began sleeping with a mouth guard, and that helped, but eventually I crushed all of my molars from the clinching. Additionally, my mind was failing me. I was confused very often, and my reading comprehension was falling off quickly.

Under my doctor's advice, I went to specialist after specialist. They x-rayed and used magnetic imagery, they injected my spine with dye and viewed me from every possible angle, and they all agreed I needed spine surgery, yet none of them could address the headaches. They all assumed it was because of the vertebrae in my neck, except one neurologist who was convinced my symptoms were psychosomatic. Eventually, I was sent to two different psychiatrists, who both proved their profession is quackery and their very existence as humans was a waste of carbon.

By sometime around late February or early March 2003, I found a cluster headache support group on a web site. For the first time, I read about cluster headaches and I became armed to deal with the ignorant doctors.

The cycles of pain and anticipation of that pain, kept me awake some twenty hours a day. After several months of this, I was in a severe state of sleep deprivation, and not one of the doctors was bright enough to realize it. I took this information to my primary care doctor and educated him about cluster headaches. At first, he prescribed 20mg of Kadian, a powerful time released opioid, twice a day. Eventually, I was up to 200mg twice a day.

The Kadian had no effect whatsoever on the clusters, but we expected that from the start. The Kadian killed the neck, shoulder, and arm pain, and allowed me to sleep. And sleep was what I needed the most. With daily traction on my neck and light stretching and exercise for my left arm and shoulder, the non-cluster pain became manageable within a few months, and the migraines became rare. However, the clusters locked into a new cycle that repeated every night, starting around 4 AM. There would be a fifteen minute cluster followed by fifteen minutes of no cluster. Then, either the clusters would be over for the night, or I would have another fifteen minute cycle.

In addition to the clusters, something else was happening. My balance was wavering, and I was beginning to develop a rhythmic shake in my left arm. At times, the muscles would stiffen and contract, distorting the arm. Also, I was developing serious memory issues and mild hallucinations.

After six months on temporary disability, I applied for permanent disability on an insurance policy from Met Life that I had been paying on for years. And what do you know? Our old friend fascism reared his ugly head.

When I bought the disability insurance policy from Met Life, no one explained that, in order for the policy to pay off, I had to first apply for and be granted Social Security Disability Insurance (SSDI). Oh, it's in the fine print, and had I spent four or five hours reading the whole policy, I may have found that clause.

I consulted the best law firm in western Ohio on this topic. I had no choice but to apply for SSDI through the government, or just say good bye to all the payments I had made to Met Life. If the government granted me SSDI, then Met Life would pay me my benefits.

The lawyer that Cindy and I spoke with asked me about my symptoms, so we described them. He asked for more details and I freely told him all that I knew about my condition. That was the most important conversation I had in 2003.

The lawyer asked me if I had ever had a concussion. Both Cindy and I laughed. I told him my concussion count at the time, I think it was about thirty seven if I recall. He was a bit shocked. He pulled a large medical book from his shelf, turned to the page on concussions, and started reading out loud the long-term symptoms. It was a perfect match to what I was experiencing.

After six months of medical care from nine doctors, it took a lawyer to diagnose me during a thirty minute meeting. That same day, Cindy made an appointment with my primary doctor, and we used the words the lawyer had used so that my doctor had the right thing to look up in his medical book.

I was taken off the Kadian and placed on carbidopa levodopa, a Parkinson's treatment. Within two weeks, the shaking and muscle stiffness were almost gone and my balance had improved.

As therapy for my memory and my reading comprehension, I began reading the works of Tolkien starting with the Hobbit. Then, I read all the way through all of his fantasy works. When I finished the Silmarillion, I realized I enjoyed it, but I had no idea what I had read. My memory was so bad, so I just read it again. And again. And again. And again. I forced my brain to find new connections and new neuron paths. I demanded of my brain, that it work.

At the same time, I fenced off about an eighth of our back yard and dug a garden. I threw myself into gardening and woodworking. I gave away the heavy punching bag that I had used for workouts for years, and converted my garage into a woodworking shop. I forced my hands to relearn how to work. Yet, with all the progress that I made, my balance problems continued to get worse and worse. However, the clusters broke their pattern and became fewer and farther between, until they mostly vanished.

Next chapter

First post & table of contents

---

If you would like to read the book in its entirety, you can purchase it with cryptocurrency at Liberty Under Attack Publications or find it on Amazon. We also invite you to visit BadQuaker.com, and, as always, thank you for reading.