Clusters - The journey

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Posted by Kyle ( on August 07, 2000 at 15:10:28:

In Reply to: New to Clusters posted by Kevin Bridgers on August 06, 2000 at 21:33:04:

Hi Kevin - i have been suffering with clusters for 9 yrs. now and i am here to tell you and your wife that they, when you experience your first cycle, are frightening!!!

I am nearing the end of a cycle right now and would like to suggest a few remedies that have helped me! First, DONT BE BRAVE!!! fight this beast with everything that the doctor/neurologist will allow! As youre aware, the pain is something that i seriously would not wish on my worst enemy - i have never experienced this kind of pain and cant imagine what could feel similar!! I didn't want to go with the meds. that were prescribed to me initially - as i told my wife "I would rather experience the headache than mask it and not know what it is doing!" Dumb, Dumb, Dumb!!! Hit this thing with anything you can!!
I have been on inderal, fiorinal, prednisone, lithium, tylenol 3 with codeine - you name it!!
The "cocktail" of choice for this bout has been Imitrex tablets (also available in a nasal spray and injector) and 100% pure oxygen! The oxygen was prescribed to me in the very beginning and only with this cycle did i get the scrip. filled! It has been invaluable to me! If you can catch the CH in the beginning and immediately start inhaling oxygen - it has been successful in aborting the CH for me and allowing me to get back to sleep! I take the Imitrex tablet (50mg) before going to bed and that has at least held them off at times if nothing else!!

Keep in mind that this demon breaks through whenever he damn well feels and certain drugs that worked for one cycle for me dont help with others - the nature of this beast! Try anything you can ( I've gone so far as to go jogging, putting my head in the freezer etc.) Anything that i thought might help!! he cycles are intense, draining and mind numbing - get used to it - they last anywhere from 1-2 months - you just have to learn to deal with it as best you can - and celebrate BIG when the cycle ends!!!

Keep an eye on the message board and join in the chat rooms now and again - i have found this website to be a lifesaver - especially during a cycle!! My wife has always been very supportive and i love her dearly - but how can they possibly understand and help?? It's just not something that most people except sufferers themselves can truly understand - and very unfortunately so, no human being can help us in the middle of a CH except to get out of our way!!

Best of luck to you!!!!!!
Give your wife a huge hug and thank her for trying to understand - too often these things destroy the very people around us as well as ourselves - hang in there!!!!
Pain free days and nights to you!!!

Kyle L. Blankenbiller

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