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   Author  Topic: I wish you'd been around before.  (Read 276 times)
salamantis
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I wish you'd been around before.
« on: Jul 27th, 2003, 11:34pm »
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    I suffered from clusters for nearly a quarter-century, from the age of 19 to the age of 42.  My clusters were seasonally oriented; I would go through a large cycle in the spring, and a (relatively) smaller one in the fall.  At the peaks of my cycles, I was having as many as a half-dozen 90 minute headaches a day, and this of course filled the onsets of my cycles with indescribable dread,  suffering terribly while still knowing all too well what horrors were inexorably approaching.  They were like having boiling alcohol pouring forcefully down my sandpapered right eye as dull rusty serrated knives  coated in merthiolate rhythmically raked the right side of my head, from the center of my forehead to the base of my neck.  But much worse than that.  Think total pain.
     I have done the aimless and clumsy dog-kennel running round wherever, and I have pounded my temple like a drum, both more times than I care to count.  I have many times gone into the hospital, been given injections and then second injections, and then been told that a third injection would be dangerous, and that I was about to go to sleep for half a day, after which I have typically checked myself out of the hospitals and driven myself home, because the narcotics did not kill my pain, but just took an intolerable edge off of what was nevertheless still dreadful.  The hospital having done all that it could for me, I wanted to, if I must continue to suffer,  continue that suffering at home.  I once calmly and quietly asked my mother, in the family kitchen, if she could find me an icepick with which to dig the pain out of my head.  The request made perfect sense to me at the time.
     Once I had to break an addiction to painkillers, mid-cycle.  I had gotten to the point where I was consuming a 20 pill bottle of 50 milligram mepergan fortis a day, waitiong until I could feel the pain beginning to come on yet again, then breaking the capsules in my jaws before I swallowed them, in a desperate and mostly futile  attempt to maintain a partial insulation from the pain.  When the doctor notices that I had recently been filling my standing prescription daily, he cut me off completely.
     My natural defences were denuded by my excruciating-years-in-the-working dependence upon the drugs to furnish my pain centers with numbing dopamines.  I faced the rest of that cycle naked.  For what was actually about two weeks, but which seemed like far beyond forever, I rarely left the bathroom, day or night.  The door was closed and the light was off, and I spastically alternated myself between dry-heaving in the toilet and cringing under a cold shower.
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Re: I wish you'd been around before.
« Reply #1 on: Jul 28th, 2003, 12:12am »
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Welcome Home.
Look here for the latest cluster info. Good Luck.

 
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Linda_Howell
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Re: I wish you'd been around before.
« Reply #2 on: Jul 28th, 2003, 1:25am »
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 And some here have ridiculed me for my anti-narcotic stance.  Thank you for sharing that with us Sal......
 
I rest my case.
 
 
Hope you're doing  better.  LindaH
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« Reply #3 on: Jul 28th, 2003, 3:11am »
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....whew....you write well.
 
and todays another day...where are you at "pain management" wise now?
 
Yer presence here may be mutually beneficial. Feel free to join us as we all make it through the CH night together.
 
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den
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Re: I wish you'd been around before.
« Reply #4 on: Jul 28th, 2003, 7:36am »
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Linda you are my hero for enduring the way that you do... and you will probably live a long life.  The medication is consolation for some but having to go through a lifetime of CH is too long to use the RX that most use.  This is the reason Dave wanted 02 and thanks again for helping him with the 02.  We love you and hope to see you again some day Ree... ps keep in touch...
 
Salamantis: Welcome  if you can think of any ways to help here you are welcome to jump in as part of our support system.  We can use alot of help.  again Welcome ~~~Ree
 
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Re: I wish you'd been around before.
« Reply #5 on: Jul 28th, 2003, 7:48am »
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Chilling. The way you describe the pain makes me flinch. When not in cycle my brain makes me forget about the pain like a bad distant memory. Stick around. What are you treating your CHs with?
 
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Re: I wish you'd been around before.
« Reply #6 on: Jul 28th, 2003, 10:48pm »
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Wow....what a post..stick around, I am sure you can be of help to someone facing the road you have already hauled...or better yet...help them avoid it all together with management & abotrives...Welcome aboard..
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Shari
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Re: I wish you'd been around before.
« Reply #7 on: Jul 28th, 2003, 11:05pm »
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A warm welcome salamantis....looks like you fineally found home.........stick around and help this crew row up river to a place called 'CURE'.......Pam that is always lookin for an answer
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