My Little Cluster of Clouds

Those close to me over the years are aware that I suffer from a neurological disease known as Cluster Headaches. Labeled a disease from the lack of treatments and understanding about the disorder. The causes, the treatments ( and the insurance companies understanding the difference between these and migraines ) are all up in the air and still very much a mystery.

I write this blog not as another form of factual information on ‘what you can try to ease your pain’ or ‘what worked for me’ because to be quite honest, everything that has worked for me at one point, stopped working and I had to switch gears and try something else. No, this post instead, is just to let you know that you are not alone. I will provide links in this post to helpful info, but I won’t tell you ‘this will work’ and ‘that won’t’ as each individual is different and YOUR cycle is YOUR cycle.

Wikipedia : Cluster headache, nicknamed “suicide headache”, is a neurological disease that involves, as its most prominent feature, an immense degree of pain. “Cluster” refers to the tendency of these headaches to occur periodically, with active periods interrupted by spontaneous remissions. The cause of the disease is currently unknown. It affects approximately 0.1% of the population, and men are more commonly affected than women.

My introduction to this little nightmare started when I was around 21 ( typical right? ). I remember it hit me out of nowhere, the pain so intense and indescribable, all I could think was that I had a tumor or an aneurysm and that I was dying. I was young, invincible and now facing a hungry dragon no one had warned me about. In tears, I crawled from my room to my parents in the living room and was rushed to the emergency room. The headache lasted around 2 hours and was gone before anyone at the hospital saw me ( another typical ). So we left. The very next day, same exact time, the dragon showed again. This prompted a scheduling of a Neurological appointment.

The symptoms:Pressure always on the left side of my head, started at temple and behind the eye. The pain/pressure traveled until it met the pain/pressure at the back of my head. Once this happened, nothing mattered. Left eye closed, water drains out. Screams, constant movement trying to get away from a pain that follows you and tests your will to live. These have pushed me to my breaking point. I have found myself within seconds of shoving a sharpened pencil into my eye. I have tried to shove my finger behind my eye and pull it out to relieve the pain. Funny, isn’t it? The idea of pulling your eye out would feel better than what one of these feel like? Like I said, indescribable.

The Neurologist smiled and said, ‘I don’t have to run a single test on you. What you have is text book.’, and so my life with Cluster Headaches began.

My first Neurologist, I later found out was incompetent. The initial diagnosis as it turns out was the only thing she got correct. Then the Dr. that followed liked to try combinations of treatments to see what worked. This was all well and good until the meds didn’t work as planned and this prompted him to increase the dosages to the point where I was on Prednisone, Verapamil ( 240 mg ) 2 times a day and Depakote ( 750mg ) 2 times a day and toss in one Topamax and you had a cocktail that rivaled some nice memories in college. The stress on my brain from his treatments actually extended my cycles. I have only been lucky a few times and had a cycle end within a few weeks. Most last 2-3 months. My current Neurologist is at Kennestone Neurology in Marietta Georgia. They are very kind, understanding and seem to know what they are doing. Although my Dr. is Villasana, I have never met the man. I always see the APRN Heidi Meyer. You know she has actually called me from her home over the weekend to see how I was doing? Seriously, when is the last time you have had or even heard of ANY physician doing that these days?

Her approach was a ‘less is more’ approach and it seemed to work much better. The first few cycles I had only lasted a couple of weeks and were gone. Quick and virtually painless. This last cycle however, I have not been so fortunate ( and I have only myself to blame which I will explain in a bit ). Started Nov 2010 Stopped Dec. 2010 then it came back after 2 weeks and I am still dealing with it as of this blog. I reached days where I had 5 headaches in a single day. Imitrex shots were the only abortive thing that has always worked for me ( I am one of the lucky few ). My research later showed me that consistent Imitrex shots can cause rebound headaches so while one shot would abort the current headache, it would cause another in a couple of hours due to the stress it caused. I also read stories of people who developed heart issues from these injections. So I started getting concerned. Then I came across another article in a forum that gave instructions to take the shot out of the injector, scrape off the label so you can see the plunger and mark off the syringe in 3rds. Then take a Q-tip and only give yourself 1/3 dose manually using the Q-tip as the plunger ( I know, sticking yourself sucks but compared to the pain of a cluster, not a problem in my book ) at the time of a headache. I noticed it worked. 1/3 dosage aborted 99% of all headaches 1% being the really aggressive, pissed off headaches and then you just have to use the full shot. It takes just a bit longer for the shot to stop it, but I was not getting the rebound headaches any longer and my shots lasted 3 times as long. Those of you that use them know how valuable they can be and also know about the limitations your insurance company puts on your prescriptions per month. They think these should be treated like normal migraines where as a migraine sufferer can get a single headache once every couple of days or weeks where as we can get 4-5 a day!

Once I started following the above steps, and injecting in my arm using the Q-tip and only giving myself a 1/3 dosage, I called my Neurologist. She also changed me from the Depakote to Topamax, which in the past, the Topamax made me loopy, but I can deal with it after what I have been through. I mentioned earlier, the extension of this cycle was my fault. Well I will say this, as I mentioned earlier, the cycle left…and came back. It came back becuase I was not taking care of myself and at the time, I was not respecting the beast. I love a good stout beer, I also love a good scotch. Both of which I did not pause the consumption of while dealing with these headaches. Once the cycle left without skipping a beat I continued my routine. And now I am paying for it. There is a reason we are told to avoid vaso-constrictors. Nuts, grapes, wines, tyramines, aged cheeses, chocolate…the list goes on. Once the cycle gets pissed off, at least mine, any of these things can trigger one. Just catching second hand smoke, perfume or the temperature getting too warm. If I get too congested. Now get this, during this cycle I also got a sinus infection, can’t take antihistamines!

Anyway, if you have stayed with me thus far, bless you as I know this was not a short blog and you found this because you or someone you know has these and trust me, my heart goes out to you and anyone with this disease. I just hope, knowing that there is someone else out there sharing the same pain, failures, hope and understanding brings some kind of peace to you.

Here’s a list of things I have tried over the years. If you see something you have not tried, talk to your Neurologist about it.
1. Oxygen ( in combination with Lithium )
2. Lithium
3. Prednisone ( as initial treatment for every cycle along with one of the below mentioned )
4. Depakote
5. Verapamil
6. Topamax
7. Imitrex injections ( as needed )
8. Diet without Tyramines and preservatives. For a nice list of foods you can eat and foods you should avoid ( some may or may not affect you, but once my cycle got bad, I noticed even a slice of cheddar cheese triggered a headache ). This list helped me a lot )
b. Tyramine

More Helpful links
Info on Wikipedia

2 thoughts on “My Little Cluster of Clouds

  1. Kyle says:

    Some have said sub-hallucinogenic doses of psilocybin helps to abort these headaches, as well as potentially increase the remission period.

    1. timkelley says:

      I have read this as well. The key, I think, is mushrooms rather than LSD. In small doses, spread out over days, not taking it to get high or really ‘feel’ much. Many people have reported amazing results.

      Article 1

      Seems like a How-To Guide

      Yet another article…

      Thanks for stopping by and reading and taking the time to comment! Hope your day finds you well.


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