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whitestone
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This curse must be broken
« on: Oct 8th, 2004, 10:44am » |
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Hey all. I am comforted, and deeply saddened at the same time that there are other people like me.
I had my first bout cluster headaches when I was 8 years old. I would wake up in the middle of the night, beat my head relentlessly, find a hard toy to press into my temple and try to sleep.
From then, I didn't experience them again until I was around 12. From the ages of 12-18, I experienced them atleast every 6 months, for sometimes 4 months at a time. These were the insane ones. My neurologist gave me oxygen and imitrex. At school, one would come on sometime after lunch, sometimes, and I would literally stumble down the hall, in tears, trying to get to the office, as fast as possible (for my oxygen) but wanting to beat my head on the wall first...this curse, it's like you want to curl up in a ball and die, but that hurts more than you could imagine, and it seems like adrenaline is pumping through you...you could pick up a car and slam it on your head...but you are so week at the same time. I do think that my adrenaline is pumping like crazy when these thing hit, because I am so desperate to find relief. Oxygen worked when I was a kid. Imitrex, on the other hand, I was taking 4 of those gawdawful pills for one headache, up to 4 times a day (I think the limit is 2).
After high school, I joined a tour and went around the nation singing...and what a better time to meet the devil head to head. I only had a short bout, 14 days, but that was half of my tour and I almost cancelled the rest of one of the best experiences of my life. I was with 35 other people who simply thought I was insane.
Then, there's college. Trying to sit in class, having had no sleep, and another one pops up...At this time I had the nasal spray for Imitrex...nasty stuff that slides down the back of your throat and makes your head weigh 700 lbs. This would abort the headaches, but you always knew another one is coming. In college, my roommates would find me in the morning, asleep, with my head outside on the porch, in the middle of winter, with myself, covered by several blankets, inside...trying to numb the pain when, finally, I guess, it went away and I slept from exhaustion.
Now, I'm 25 years old. I hadn't had a bout for nearly 4 years. I've had several phantom clusters but no serious bouts. I had thought that I was over this. I really did. I believe in the Almighty, and really thought I was healed. Until about 4 weeks ago. I woke up at 1 am...went downstairs and grinded my head between two bars on our fouton. For some reason I always go downstairs...it seems more bearable down there...I don't know if it is the air temp. or what...or maybe I can thrash around and not wake my family. My wife woke up with me one night, as I was violently dry heaving while banging my head against the toilet seat. I was flat out bawling. I don't throw up often with these monsters. I try to explain to her that I want to cut the side of my head off, that I wish I had a gun that I could shoot through and blow this one little part out, if I knew I'd live, I would have shot myself years ago. They're back. There is no explanation, and it is like a demon's talons are in your skull. Even before I told my wife this, she told me that she was praying for me and saw this eagle like creature sinking it's claws into my head. Then it would leave, fly around me for a period of time and come back. Last night was my first pain free night in four weeks. Dear God, let this bout be over.
A couple months ago, my oldest son, 2 1/2, woke up screaming in the middle of the night. My wife and I could not calm him down. Then, he started beating his head and saying "head hurts." I was, in lack of a better word, totally pissed. Not HIM, not NOW. I don't know if he was having a cluster, but I know that as his father, I won't allow it. I prayed, screamed, yelled, and so did my wife...then all of a sudden, he quited and said "head better." This hasn't happened again, nor will it.
Also, my grandfather was kicked out of the military for banging his head against a wall...I know this hasn't any hereditory traits, but can it?
Frankly, I believe it is a curse, and frankly it has got to be broken. I'm believing for complete healing, and as soon as I get it, I'm believing I'll be able to share w/ others. Anyone out there to believe with me? I was not created to live like this.
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thomas
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Re: This curse must be broken
« Reply #1 on: Oct 8th, 2004, 11:05am » |
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Very sorry to hear about your son hurting, it truly does feel like a curse at times.  
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nani
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Re: This curse must be broken
« Reply #2 on: Oct 8th, 2004, 11:46am » |
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So sorry about all of this Do what you have to do with God ... I truly beleive that He can help you in many ways... but PLEASE don't wait to get your baby to the doctor. Get him to a pediatric neurologist ASAP and see what they can do for him.  If God has done nothing else - He has given you the strength to deal with this.
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thebbz
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Re: This curse must be broken
« Reply #3 on: Oct 8th, 2004, 7:45pm » |
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WS,
Reading your post, having a little deja vu. Hope the cluster is over . I understand you not wanting this to effect your son . Deal with that right off. All the best to you and yours. 
BB
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floridian
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Re: This curse must be broken
« Reply #4 on: Oct 9th, 2004, 7:59pm » |
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on Oct 8th, 2004, 10:44am, whitestone wrote:
Also, my grandfather was kicked out of the military for banging his head against a wall...I know this hasn't any hereditory traits, but can it?
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There is a genetic risk factor - if your immediate blood relatives have clusters, you are at a higher risk (5x-20x I think). But most kids of clusterheads do not have clusters. It seems that a person needs the genes AND some other factors in their life to get the headaches.
It is a curse, but it has physical causes (as does muscular dystrophy, cystic fibrosis, and other diseases). You didn't mention taking any preventive meds in your post - you should research those and find a good doctor to work with. Verapamil and lithium are the most common preventives. Some people have results with melatonin (some episodics, very few chronics ) and topomax is another that comes to mind. Magnesium supplements have also proven to help 40-50% of people with clusters.
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Bob_Johnson
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Re: This curse must be broken
« Reply #5 on: Oct 11th, 2004, 12:09pm » |
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Hope you noticed there is a section on children & clusters here.
Please buy!---
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
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And explore....
WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.
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Bob Johnson
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TxBasslady
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Re: This curse must be broken
« Reply #6 on: Oct 12th, 2004, 1:28am » |
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Check out the posts on Melatonin. It works for alot of us here.
I agree that the Melatonin probably doesn't work as well for chronic sufferers, but for those of us who are episodic, it has worked quite well for alot of folks here.
I have not tried the magnesium in conjunction w/the Melatonin, but I have been told that it works. Right now, the Melatonin has stopped my nightime hits. Guess when it stops working....I will take the Magnesium w/the Melatonin.
It's tough to stop the Beast.....but you can control alot of the pain.
Lots of great support here on this board. So many good folks willing to share what info they can, to help.
Hope you get some relief....
PF vibes,
Jean
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