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nkolb
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Newbee with question re:Haldol
« on: Jan 20th, 2003, 12:41pm »
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Hi all, Newbee here. 45 year old male. After 20 years of suffering from episodic CH I finally typed “cluster headaches” into google and found you all. What took me so long I’ll never know, but I feel like I’ve found my home. I’ve read your stories and, though I know it won’t ease your pain, I curse your demon as I do my own. You all have my respect and my hopes for relief.
 
For those wanting to know my story here it is (those interested only in my question can scroll to the bottom):
 
I had my first “weird” headaches in 1983, suffered for a few weeks, and then they went away. I never knew what caused them or sought treatment. The next year they returned much stronger and still I did nothing, mistakenly thinking that a strong man can weather the storm. My third bout forced me to seek “medical attention” (an oxymoron) and like many of you I was misdiagnosed and/or shunted off to the next ill-informed doctor who prescribed naprosin or other ineffective medications. I had teeth pulled by an overenthusiastic dentist. Finally, I found a neurologist who diagnosed me with CH and prescribed amytryptalene. It may have worked or not - too long and too many drugs ago to remember. The next  year found me desperately wandering the streets of Manhattan at night, clutching my head and dripping snot from my right nostril, tears pouring from my half-closed right eye and whimpering in pain. Wandering New York City in the middle of the night looking like a target is not a good idea - yet somehow I survived and the CH went away for another year, and another. In 1994 I had my first Kip 10. I was working for a network in Lillehammer on the Winter Olympics and all the television personnel were housed in a complex with tiny rooms (impossible to survive a cluster in an 8X6 foot cell), so I would wander the ski jumps and mountaintops of Norway all night, breathing in the cold dry air seemed to help too. I had my 10 there, and I apologize to the people of that beautiful country for all the screaming and thrashing about and for falling down that icy slope into that ravine where I had to be rescued. Back in the US I was “treated” once again. Prednisone didn’t help and made my blood vessels burst, Lithium had no effect and made me so sick I had to quit my job, I tried several more but forget their names - none provided any relief.
 
After that, I found a lovely neuro who honestly tried to help. She tried me on Prozac, Imitrex (which unfortunately I can’t tolerate or afford), and O2 (which didn’t work for me either), but she was patient, understanding, available at all hours to lend sympathy and support, and willing to try new things. She gave me my first CT, MRI, and was the first doctor to take a decent history and assure me that I wasn’t dying of a brain tumour. I thank her for that.
 
Since then I have moved to Canada with my life-partner, who is a doctor (psychiatrist). He has stuck with me through all my episodes and, though I know he doesn’t really understand the pain, he has been my saviour, friend, and strength. We also have a 3 year old son and I don’t know how I’ll ever let him see his “papa” in such pain. Can I hide it from him for his whole life? (Dammit - I’m sure gonna try!) I seem to have settled down into a pattern of episodic clusters , one bout every 2 years, always starting in January and lasting until March. Between bouts I am completely free of all shadows, can drink and live normally. Unfortunately, the severity is way up. I now start at Kip 5 several times a night and, at their peak, I have Kip 10s 8-10 times a day with only momentary breaks in between. They each last 30 minutes to 2 hours. You all know the torture so I won’t elaborate on it.
 
Anyway, on January 6 it started again. Two years - like a sadistic cuckoo clock...
 
Which brings me to my QUESTION? Two years ago at the height of my pain and despair, with 10’s pounding me all day and night, my partner decided to use the heavy artillery. I have always been un-abortable (once started nothing stops them) so we concentrated on breaking the cycle. He dragged me screaming to the emergency room where he convinced a friendly ER physician to put me on a Haldol (haloperidol) drip (5ML i think). He thought it might at least calm me down and moderate the “panic” I felt. It worked. I remember sitting on the gurney cart, naked to the waist and sweating profusely, feeling this blackness draining from my body. I never felt “medicated” or “high” at all, just a tranquility, a change of mood. I had shadows for several weeks after that, but no headaches. Of course I realize it may have just been the end of my cycle, but am hopeful to try it again this bout, and hope to report that it works a second time. I will keep you informed.
 
I have searched this site and OUCH for Haldol (haloperidol) and found nothing significant. Does anyone have any experience (good/bad) with it. It is a very common drug for psychiatric disorders like manic/depression, schizophrenia, etc., but I have found no information on its use in CH. Any information at all would be appreciated.
 
Thanks for listening to me and good luck to all.
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echo
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Re: Newbee with question re:Haldol
« Reply #1 on: Jan 20th, 2003, 1:22pm »
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I can certainly relate to what you are dealing with, as will many others here on the MB.  I do not have any experience with Haldol or any information to share.  There are several members of the CH MB who have amazing abilities to bring up reams of information on nearly anything.  Be patient - I'm confident that the "search engines" of the board will be assisting you shortly.
 
Welcome to the family.
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Re: Newbee with question re:Haldol
« Reply #2 on: Jan 20th, 2003, 1:41pm »
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google.ca is as good a place as any to start.
 
I just went to the 'Advanced Search' and filled in the following:
 
Exact Phrase: cluster headache
At least one of the words:   haldol haloperidol
 
220 hits - lots of stuff to get started with!
 
I'm at work right now, but when I have a chance, I'll see if anything makes sense.
 
Good Luck and PFDAN
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Mark C
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Re: Newbee with question re:Haldol
« Reply #3 on: Jan 20th, 2003, 2:57pm »
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Welcome to the board nkolb,
It just so happens about 12 or 15 years ago I had a buddy who worked at our local "asylum" where chronic, never to released mental patients were held. He was a Pysch-Tech, or handler as it was then. Haldol is what was in the syringe when a patient became "combative". Properly administered it would render a 185 lb man, in a rage,  to putty in about 30 seconds. I have taken it, in smaller doses, for CH. At the time I didnt know it was CH, just that my head hurt real bad. I dont remember it rermoving the pain but it would sedate me to a point of greater comfort. For me it was the same effect as other narcotic meds I have tried. They may not remove the pain, but they will remove me. In the heat of battle I will take what I can get. I am a firm beliver of better living through chemistry, its just that I believe the hypothamus dont respond well to numbing meds. Triptans have saved my life, that is my experience, but if you find relief in ANYTHING, please use it....... safely.  
PFDAN's
Mark
 
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Karla
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Re: Newbee with question re:Haldol
« Reply #4 on: Jan 20th, 2003, 5:12pm »
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I have tried this Haldol for another condition and it did nothing for my ch.  However, it wasn't by iv either.
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Karla
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Re: Newbee with question re:Haldol
« Reply #5 on: Jan 20th, 2003, 6:18pm »
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I had no idea that they use haldol for clusters.I am failier with that medication ( 2-of my childhood friends have mental disorders ) one takes it in pill form,the other one is being forced to take it ( he is in the D.O.C.) and refuses to take it,so the state of calif. had to take him to court to get the green light to inject him with the haldol ( each shot last appr. 8 - weeks "TR"Wink. Mark are you sure that ,that was haldol and not thorazyne( i cant spell very well ) you were talking about
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yes a newbie,unfortunately not to the beast!!!Chronic - Clusterhead
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Re: Newbee with question re:Haldol
« Reply #6 on: Jan 20th, 2003, 6:25pm »
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nkolb - welcome to clusterville. 20 year veterans are looked to for their experience. I hope you stick around and offer advise to newbies.  
I've only had this horror for six years, so I feel like I have a lot to learn. Never heard of Haldol being used for CH.
Pull up a chair
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