Medication Gauntlet Part 1 of ?

Friday, November 25, 2005

I thought writing about how my medical hell that started 4 years up till this point might be a good way for others to get to know what living with cluster headaches are like. I will be going by my old journals, dr. reports, some audio tapes, notes and memory. Hopefully this will turn out well. Lately I have lost the motivation to typical daily blog postings and am looking to do something a little more in depth. I'll start off how my life was prior to diagnoses. Treatments tried/failed. Complications with friends, family, relationship and so on. Basically how cluster headaches have affected my life.

In past 4 year I have had gone through what can only be described as the 'medical gauntlet'. With the hope a single or combination of medications or treatments will allow me to live a relatively pain-free lifestyle. Initial I had hoped, like so many before me, the cluster headaches and epilepsy would go away as quickly as they arrived. Remember, at this time neither one was diagnosed. I was hoped a reduced stress lifestyle would stop whatever was happening to me.

This unique combination of chronic cluster headaches intertwined with epilepsy made diagnoses extremely challenging. But the only way my doctor(s) wanted to find a diagnosis involved a prescription pad intially. Fair enough. Besides, the pain had sent my body into a state of exhaustion. Not being allowed to sleep and too sore to eat. At this point I was quite willing to give up all together.

The thought at the time was the attacks 'atypical migraines with aura'. This would explain the bluish-green spots, the sensitivity to light & sounds. However, the highly localized pain burning sensation in my left eye did not fit the conclusion. Hence the reason 'atypical' was thrown in there, just to be on the safe side I guess. For some reason, the fact that was never taken into account until much, much later. Being awoken during a deep sleep is an indicator to distinguish between migraines and clusters headaches. Migrainers can usually stay in a deep sleep. There are exceptions to every rule of course.

However for myself literally on a nightly basis, a horrific torment caused me to be suddenly awakened out of a deep slumber, screaming, crying, and pounding my fist into the pillow or onto my head. Anything which was rounded and could be push onto my eye socket was used. Glasses, mugs, telephone receivers, cans, fists, ice packs and anything else within my grasp. Sometimes I would go to extremes to get the slightest bit of relief or refocusing my attention. Even bashing my head into the wall. Hence one of the nicknames for cluster sufferers... Headbangers. Sounds nuts I know.

The pain is like nothing imaginable and cannot even be wished upon one's worst enemy. When that avenue for relief did not seem to help me enough, I went to down a different path. I made the pain more intense. To the point when I would not be able to remember what I had gone through the day before. Habits like smoking and drinking are sure fire ways to induce an attack and more it even worse. Every once in awhile I am asked why I would do a crazy thing like make the situation worse. My answer is simple I didn't have any choice. No one would believe me. I was not able to a restful sleep for months and unable to work. My personality changed. Not for the better. And I hope I never, ever hear someone say 'well, everyone gets headaches. Deal with it'(paraphrasing) again!

To be continued....

Courage doesn't always roar. Sometimes courage is that little voice at the end of the day that says: "I'll try again tomorrow."
-Anne Hunninghake



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Medical terminology can cause confusion at the best of times. If there is a word you do not understand all you have to do is double-click on it and the definition will appear! Don't forget to drop me a line by email at with your comments, questions‚ recommended resources‚ concerns‚ & especially your experiences with clusters. Or come find me on my Facebook Profile to add me as a Friend. Whether you are a supporter‚ care-giver or sufferer. I would love to hear from you!

*Please do not use this information for self diagnoses. Writing about my experiences with chronic cluster headaches & epilepsy is a good outlet for me. Consult your Dr. with any kind of headache or chronic pain you may have. The 3rd party links on my site I have found to be a good resource to me over the past few years & dearly hope they will benefit you as well.*

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