Tonight's picture was taken in December of 2008. Mattie was in his fifth month of treatment and had both limb salvaging surgeries behind him. You can see Mattie's left arm was still in a cast. His right leg looked just like his arm.... in a cast. Cancer transformed Mattie physically from an elementary school aged child back to being a toddler. Which frustrated him greatly. That day, Mattie hobbled over to the piano, holding onto pieces of furniture for balance until he got to the piano bench. He then sat down and started creating music. It was a memorable and priceless moment!
Quote of the day: Constant kindness can accomplish much. As the sun makes ice melt, kindness causes misunderstanding, mistrust, and hostility to evaporate. ~ Albert Schweitzer
It is 6:45pm, and I have been moving all day long. This isn't a rare occurrence, but as I am now firmly in week two of what I thought was a migraine, all tasks and requests at this point are a chore to me. I started my day by seeing my neurologist. I have the pleasure of seeing him every six months and have for years. He has seen me at more stable points and of course on a day like today. I typically try to block out some information, but I also am an episodic cluster headache sufferer, which is what I am dealing with now. People like me are RARE, big surprise and there truly is NO KNOWN antidote to relieve this kind of pain. So what is a cluster headache?
First of all the population prevalence of cluster headache patients is 0.1 to 0.4%. This is considered a rare disease and works out to a minimum of 400,000 sufferers in the U.S and over 7 million worldwide. Cluster headaches are called the “suicide headache” from a long history of patients taking the ultimate step to stop the pain. Approximately 15 to 25% percent of cluster headache sufferers are chronic; they can experience multiple headaches every day for years. Cluster headaches occurring in two or more cluster periods lasting from 7 to 365 days with a pain free remission of one month or longer between the clusters are
considered episodic.
Cluster headache is a neurological disorder characterized by recurrent, severe headaches on one side of the head, typically around the eye. There is often accompanying eye watering, nasal congestion, or swelling around the eye, on the affected side. These symptoms typically last 15 minutes to 3 hours. Attacks often occur in clusters which typically last for weeks or months and occasionally more than a year.
Needless to say my typical rescue medications I take are NOT working. So the next recommended form of treatment is steroids for a week. I filled the prescription, but given I watched Mattie on steroids, I am not eager to take them unless absolutely necessary. Mattie became angry and aggressive on steroids, so much so, that in his medical chart was noted.... do NOT give steroids. Steroids are typically given to cancer patients to manage chemotherapy side effects, but in Mattie's case other alternatives were necessary. As for myself, I am waiting for the cluster cycle to end, in hopes of getting a reprieve.
To read more about Cluster Headaches, go to:
http://medcraveonline.com/JNSK/JNSK-03-00092.pdf
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