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jimmy
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hello again
« on: Dec 3rd, 2007, 11:08am »
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Huhhi,
 
during my 11 tear career as a sufferer i am coming off a two year remission (that was fun) but now i'm back since early august and haven't had more than a two or three day break. i've had some left over imitrex so i was able to hide it from the job and certain people who don't believe the severity of the pain. anyway, i'm now down to my last 4 shots so my neuro gave me depikote 500 mgs and fiorecet,  they do keep the level down but not enough for me to hide it from work. i will lose my job eventually,  i've read about radiosurgery, its a non invasive beam where they burn the part of the nerve that they think is causing the pain. it seems to have good results. has anyone tried this and if so what kind of results did you experience. thank you all for this web site. pfdan
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Bob_Johnson
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Re: hello again
« Reply #1 on: Dec 3rd, 2007, 11:29am »
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Get off the pain med. You know this is not the most effective route for CH. Print both these articles and give to your doc--for your sake.
 
Ask him about using Zyprexa (mentioned in Rozen article) to abort attacks. Pill, works nearly as quickly as Imitrex for many, and, on a per cost basis, quite affordable. He can give you some samples to try and you will know, with one or two doses, whether it works for you. The idea of not having access to an abotive is bad news.
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HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
================
Treatment guidelines from Europe
 
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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:  
EFNS guidelines on the treatment of cluster headache and other  
trigeminalautonomic cephalalgias.  
European Journal of Neurology. 2006; 13: 1066–1077.  
 
Download free full text:  
http://www.efns.org/files/guideline_49.pdf  
(Thanks to "cluster" for link.)
 
 
« Last Edit: Dec 3rd, 2007, 11:30am by Bob_Johnson » IP Logged

Bob Johnson
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Re: hello again
« Reply #2 on: Dec 3rd, 2007, 12:25pm »
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Listen to Bob, the pain meds will cause you more problems in the long run then they will solve. Read the info Bob gave you with the following idea in mind. You can't cure these things but can manage them enough to keep your job using a 2 pronged approach.
 
1: a good preventative medication. That is something you take while on cycle to reduce the severity and the frequency of your attacks. I use 1200 mg a day of lithium. I'm in law enforcement so very limited as to what I can take and still work. The lithium works wonders as a prevent for me. Other common prevents are verapamil at fairly high doses and topomax.
 
2: A good abortive strategy. The headache hits, now what. You've discovered imitrex, it's awesome but expensive and I use it only as a last resort. Your first line abortive should be oxygen. I can abort in as little as 6 minutes. Read the link on the left. To work you must breathe pure oxygen, at a high flow rate, using a NON RE BREATHER mask. Nasal canulas and re breather masks are worthless. You need to get 100% 02 to your lungs for it to work.
 
Other common abortives are energy drinks, Monster, Rock Star, any containing the combo of caffeine and taurine, many can abort using just this. Strong coffee works for many.  
 
I can understand the frustration that would lead you to consider surgery. It is a drastic step to take, has a relatively low success rate with many many side effects up to and including death. Most people kind find enough relief using the info Bob has provided you to avoid the surgical routes.  
 
Stick around, ask lots of questions and read a lot. Accept the fact you will soon know more then your doc about this thing and will have to manage your own care. Everyone here is here to help, good luck.
 
Guiseppi
 
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Linda_Howell
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Re: hello again
« Reply #3 on: Dec 3rd, 2007, 7:11pm »
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Get off the pain med. You know this is not the most effective route for CH.

 
Thank you Bob.   As far as the surgery route of  ANY kind?  I think you will find that most  of us who dealt with this for many years stay away from even considering this.  
 
There are other options, like those above.  Zyprexa, 02 et al.
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jimmy
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Re: hello again
« Reply #4 on: Dec 3rd, 2007, 9:34pm »
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thank you all for your replies Grin. My next question may 0ffend some but please know this is not my intention. I just want relief so I can continue to support my family. Is anyone familiar with the exprimental stuff going on at Harvard Medical in Boston, and if so how can I get in it?
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thebbz
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Re: hello again
« Reply #5 on: Dec 3rd, 2007, 10:04pm »
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jimmy,
You didn't mention many traditional treatments.
http://www.plainboard.com/ch/chtherapy.pdf
Many get by with 02, caffeine, and the occasional prevent.
You need a treatment and work plan. This will help with your job. Timing is everything but with the proper meds and plan you should be able to hang with work.
Why right to experimental? Have you exhausted all the traditional stuff?
thebb
all the best
Oh ya ...and listen to Bob.
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Re: hello again
« Reply #6 on: Dec 4th, 2007, 12:35am »
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  ". . . burn the part of the nerve they think is causing the pain."
 
  Well . . .  the nerve they "think" is causing the pain is the trigeminal nerve.  I think on the OUCH site there is a good illustration of the head, showing the nerves, blood vessels, etc.  When our blood vessels dilate, they put pressure on the nerves running right beside them.  Find the trigeminal nerve, and you can trace your pain . . . eyes, sinuses, teeth, etc.
 
  From everything I've read on this site over the past 5 1/2 yrs . . .  tri nerve surgery of any kind, if it should be done at all, should only be considered after all other options have been tried.  It has been reported a high percentage of patients who've had a tri-nerve "cut", DID get relief on the affected side, only to have the beast come back on the other side . . . to be left still with CH, plus the "deadness" of the "cut" side.     So put that out of your mind right now . . . . you've come to the right place and the folks on this board will give you the ammo to battle the beast.
 
  Be Safe,   PFDANs
   
 
     Richard
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Re: hello again
« Reply #7 on: Dec 13th, 2007, 7:32pm »
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My hubby Kevin had TN surgery in 2003 with good results to begin with only to have the headaches switch sides.  He is numb on his left side, and now he is taking Lyrica 150 mg twice daily with better results.  Do your homework before taking this kind of measure.  Kevin is a happier person since his surgery, but, everyone is different.  Good luck, Leah.
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BarbaraD
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Re: hello again
« Reply #8 on: Dec 15th, 2007, 8:59am »
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I had TN surgery back in 99 with NO results. I had a numb left side and STILL have headaches on the left side, so .... I would NOT recommend surgery. At the time I had it I was OUT of options. Months later, I found topamax (the ONE drug I had not tried). It worked..., so BE VERY CAREFUL until you exhaust ALL of your options.
 
From your post, it doesn't look like you've tried many prevents or aborts. My suggestion is that you find a good neuro (one that actually knows something about CH) and get on a prevent (get off the narcs - they only cause rebounds and compound the CHs). Imitrex is a good abort (as is cafergot - ergotomine). Lithium; verapimil; topamax - work well as prevents. O2 is what "most" of use as a FIRST defense. Used properly it will stop the headaches for "most" of us.  
 
Nothing is "standard" for ALL of us. You will probably have to try several things before you find what works for you, but surgery is NOT the answer until you exhaust everything else.  
 
Hugs BD
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Re: hello again
« Reply #9 on: Dec 15th, 2007, 8:03pm »
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on Dec 3rd, 2007, 9:34pm, jimmy wrote:
thank you all for your replies Grin. My next question may 0ffend some but please know this is not my intention. I just want relief so I can continue to support my family. Is anyone familiar with the exprimental stuff going on at Harvard Medical in Boston, and if so how can I get in it?

 
I don't think you'll find that people will be offended by that question.  
 
If you're talking about a clinical trial of hallucinogens in the treatment of cluster headache at Harvard, I'm sure there are others here with knowledge of how that trial is shaping up.  
 
Last I heard, it was still in the planning stages.  As far as I know, there has been no call for volunteers to participate in a study.  
 
Best wishes,
 
George
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Ah! The foreigners put on such airs
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And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
ttnolan
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Re: hello again
« Reply #10 on: Dec 16th, 2007, 2:07am »
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Let me say three things about CH... oxygen, oxygen and oxygen. Until you've tried it, you're wasting your time with everything else. If it works for you like it did for me it will make you reevaluate the things you are willing to put yourself through. Also, I may be alone on this one but Amerge (naratriptan) has been granting me the occasional good night's sleep or pf day when I need to dazzel them at work to keep from getting canned. It's expensive and I would use it sparingly. My experience is triptans can loose effectiveness with heavy use and cause rebound in some cases. Stlii damn good stuff compared to the alternatives... and yes listen to Bob. Good prevent stratigy is a must.
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