One Of The Worst Pain A Human Can Experience: Cluster Headaches

January 25, 2018 | 1 Comment » | Topics: Life Experiences

Imagine waking up in the middle of the night and feeling a drill in your eye. This is not a metaphor. Imagine feeling like somebody has pierced a hot metal rod through your neck and rammed it up into your brain. Again, this is not a metaphor. This is what a  ​cluster headache feels like. 

Cluster headaches are also known as “suicide disease”, as sufferers have been known to take their own lives when they can’t bear the pain any longer. The condition affects 0.1 percent of the world’s population and I’m in that exclusive club 

My cluster headache is chronic. I had 4–8 attacks per day for 11 years, and 1–4 attacks per day for the last year. For a few years, I used sumatriptan and oxygen to relieve the pain for a long time. Currently, I use oxygen exclusively. I am treated by a team of doctors, including a neurologist who specializes in disorders like CH. I have yet to find any effective preventative medication, and I have tried everything except the implant. Oxygen is the only treatment that has been effective. It works almost every time.

The pain is the easiest part of CH. It hurts- a lot. It starts in my teeth and feels like I’ve broken them. Early on in my experience with CH, I actually pulled out a tooth during an attack. Obviously, it didn’t help. From my upper teeth, the pain increases and moves to the part of my head above my ear (my left side for the past few years, but was my right side previously). At the same time, it occurs at the base of my skull and behind my eye, on the same side. This pain comes from the inside of my head. When it happens, I envision the hand of an angry person with a blunt object, like the handle of a hammer, frantically jamming the tool against the inside of my skull, holding it in a fist and rubbing it between my temporal area and eye, angrily, like a child messily uses crayons on paper. In order to keep my head in the right place, this angry, hammer wielding torturer I have coconcted uses a piece if iron rebar, jammed through the base of my skull. This is what I envision during an attack. It might technically be a hallucination. Generally, I will be moaning, rocking, or pacing in circles and holding my head and face with both arms/hands. I always use the same hand/arm position, I think. My face gets red and puffy. My eye and nose runs. I get deeply confused.

Back to the pain not being the worst part. The truth is, the pain is an epic nightmare that words do not sufficiently describe.

But the worst part is the panic and fear that accompanies it. I do not have words to describe the secondary effects of physical pain that is so intense. A cluster headache is more than just extremely intense physical pain. Cluster headaches can wake people out of anesthesia. That kind of pain changes people. Imagine going to sleep knowing that you will wake up an hour later in this type of pain, every night, every nap, no matter what. I’m not talking about anxiety over future attacks, though. What I mean is that there is very little known about CH, and it is my own belief that the mechanisms behind/related to CH also trigger a unique type of mental anguish during attacks. It’s like a focused mix of sadness, rage, and terror. I don’t really know how to describe it. It’s a unique feeling, and I only experience it during an attack.

Hot baths give me attacks, so does warm weather, cold air, bright light, single sources of light, white light, many smells, loud noises, certain high pitched noises, exercise. Chewing my food triggers an attack oftentimes. I’ve had CH on trains, in public, at work, at school, on the freeway, in restaurants, meetings. I don’t know life without cluster headaches anymore.

I’m not trying to make you feel sorry for me, just to explain my experience. CH has opened my perception of things. On one hand, I wrestle with agoraphobia due to the attacks, and always have an oxygen tank with me. In the other hand, I know that my experiences with exceptional pain places me in a cadre of individuals who endure something that the vast majority of people can’t comprehend. I don’t go around telling people what I go through with my headaches. I’m sure they would think I’m exaggerating or pining for attention. I’ve told a few people, and they don’t understand. Cluster headaches are so rare. Most people hear “headache” and try to relate their experiences with migraine. It offends me, but I know they are just trying relate.

 

 

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  • Jonathan Arndt

    My heart goes out to you big time brother. I am one of the few that knows exactly what you are talking about as I have had 4 in my life. After reading your piece I am so grateful that it’s only been 4 I truly feel so bad for you! The last one was in January of 2014 and I honestly thought I was having a stroke and dying. My whole family was there and I was saying my goodbyes. You described the hellish experience to a tee! I didn’t really experience the teeth pain but it started at the base of my skull and traveled to the top of my skull. It followed A PERFECT LINE down the center of my head and the entire left side felt like it was being run over by tank tracks! I remember vividly the feeling of the water building up behind my left eye to what seemed to be the size of a baseball and then all of a sudden just pouring out of my eye. Even in the midst of the worst pain I’ve ever experienced in my life, I remember being amazed by how my eye gushed water! I earned a ride (definitely NOT free!) to the ER was given quite a few strong drugs and rode it out. The doctor finally came in and told me that I had a “suicide headache” and it was called that because people have been known to kill themselves due to the pain, like you said. I know that I have come close to having more because mine seem to start due to extreme tension at the base of my skull but fortunately I have avoided having the experience a fifth time so far. I’ve got to say that people should know what a fucking stud you are for having so many and not giving up! Like you said, absolutely nobody will ever understand that level of pain unless they experience it. God bless you sir and keep hanging in there, you are an inspiration!!