Somedays I Have All the Fun

Tuesday, November 14, 2006

These passed 5 days have been nothing short of the most exhaustive and painful I can recall in recent memory. The clusters have burned themselves deep, deep into my ocular regions. Going from the left then to the right and back again. The ice packs feel like they are evaporating on touch. The back of my neck is swollen and tight. My nose and eyes will not stop watering.

The worst part of this cycle, besides the sheer intensity(an easy 9-10 on the ever reliable Kip Scale), is the lack of sleep, easily less than 4 hours in 5 days. There have been times when I have been unconscious but it is not restful or allow for R.E.M. Unfortunately, I know situation all too well from past cycles. Last time this exhaustive battle went on was a tad less than 5 years ago for 5-6 months straight. I would go day after day without sleep or at the very best collapse from exhaustion to a shallow straight of sleep. Not the best when the body desperately needs serotonine to aid in the battle. This is how I came into the land of clusterheads.

How I kept my sanity during this time is anyone's guess. Maybe I didn't. The amazing part is I survive. Why this happening again has me a little concerned. However, this time around I know what I am dealing with and am for more prepared to go at it alone if I need to unlike last time when I needed support and found none. But we are alone battling this monster aren't we? Each attack is directed at us and no one else. Not to say other do not feel the impact but they have the option of walking away in is too much. There is very little anyone from outside the arena can do. It would almost be worse to be a supporter ... almost. Maybe when I am not under siege I will reconsider this. However, right now my ice packs are calling me to get ready for the scheduled 4 o'clock bout. And in this corner...


He who joyfully marches to music in rank and file has already earned my contempt. He has been given a large brain by mistake, since for him the spinal cord would suffice.
-Albert Einstein



Oh crap Paul, my thoughts will be with you, and sending your strength over the miles. I hope this cycle is much shorter then the last one of this magnitute!!

By Anonymous Anonymous, at 14 November 2006 at 17:45  

There's very little to say that helps, but I hope this cycle is short. I enjoy your site--you'll be in my thoughts.

By Anonymous Anonymous, at 14 November 2006 at 22:02  

Paul, I hope you're feeling well very soon. Your statement was so well-put, regarding caretakers and all. I'll be sayig a prayer for you

By Anonymous Anonymous, at 7 December 2006 at 14:12  

I know all about this! I too am a sufferer and I agree with the support being almost as bad as being the one of us in pain (but not really).

I am guessing you made it through at this point. I just had my first attack ever and it was 11 weeks long, I thought for sure I was dying and was never going to see my 1 year old baby grow up.

Good luck man, so far Imitrex inj and inhalers work fast and Topamax/Verapamil PM seem to have slowed the severity. (Durring full attack narcotic meds i.e. oxycodone made my head feel like it was going to explode, after further review traditional narcotic meds are no good for us with the cluster) Go figure.

Good luck man,

By Anonymous Anonymous, at 29 December 2006 at 06:46  

Thanks for all the prayers & good wishes. It is true most opioids aren't the most effective at treating clusters. Medications like oxycontin & morphine have not proved useful for me. There was one wild card in the bunch called Demerol. It is a bit differently than other opioids. The blood vessels relax for some reason(I'm doing this off the top of my head). Fentanyl is a long lasting(72 hours) derivative of Demerol. According to the neuros & pain clinics I've been too they tell me it is probably the best solution for since I am unresponsive or have bad reactions to the normal(and not so normal) treatments. All I know is the combination of meds I'm on has kept me sane & alive. Its not perfect but I have very little choice.Cheers,

By Blogger Versilleus, at 3 January 2007 at 00:49  

Hi Paul, I know it may sound like a new age hippy but can you get access to a natural healer? I've seen some amazing results with these people on all types of ailments even where doctors have given up. I wish you all the best.

Help With Your Migraine!

By Anonymous Anonymous, at 3 January 2007 at 06:16  

On November 13th, my husband went into yet another cycle with CH's. He has had episodic CH's since he was 19. He is now 46. Right before Christmas he was getting the nightly wake up calls. He was out of Imitrex, the insurance company would not pay for any more until January 13th, we were out of money, and so we were running to the Emergency Room at 2, 3 & 4 in the morning. I made an appointment with our family doctor (he has to wait until February to see the neurologist again) and she put him on continuous nocturnal oxygen, and gave him samples of Relpax to chew at the first sign of an attack. We were issued a little machine that makes its own concentrated oxygen. It's called an oxygen concentrator. 2L/min of oxygen into two tubes that go in his nose. It stopped the night headaches. He has not had one night headache since. He gets them during the day, but at least he is getting a full nights' sleep. Try it if you can talk your doctor into it. Different things work for different people. You never know what will work for you. If we hadn't been so desperate, I would have thought this was too easy. . . and I'm not sure we would have tried it. Up until this time, he stopped only one headache (during the day in the ER when he caught it at the very beginning) with oxygen. Today is January 5th. I think the headaches are subsiding. He has gone 2 days without one.

By Anonymous lynn gagnon, at 5 January 2007 at 20:05  

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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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