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   Author  Topic: guest book entry  (Read 322 times)
maffumatt
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guest book entry
« on: Jun 29th, 2006, 8:07pm »
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Anyone ever heard of this?
 
 
I have been suffering from cluster headaches for 15 years. At first, they were diagnosed as sinus headaches, then a few years later, a new doctor realized I was getting migraines and it wasn't until I kept a chart listing the symptoms, time of day, as well as the day of the week and month that we were able to diagnose not only migraines, but also cluster headaches. That was 10 years ago! I remember going to a search engine and typing in cluster headache and finding absolutely nothing. It wasn't until 2000 that I found this site and finally found some relief knowing that someone out there was suffering the same excruciating pain as I was. Although I was once a chronic sufferer, I now get them every few years. I had tried everything from hot showers, immitrex injections, and epidurals but nothing kept the cycles away more than a few months. It wasn't until '04 that a doctor at the Headache and Pain Center prescribed a heavy dosage of solumedrol (steroid) in IV drips that knocked the cycle off track. The cluster attacks stopped immediately and for the first time I was without any clusters for two years. I am now getting another treatment of solumedrol and I am hoping for another two years at least of no attacks. I don't see solumedrol as an option on this website and I was told two years ago that this was becoming a commonly prescribed treatment for cluster sufferers. I just wanted to mention as something people could bring to the attention of their doctors. Thanks, Aaron
Aaron Phillips <aaron7188@yahoo.com>
Lee's Summit, MO USA
Wednesday, June 28, 2006 at 01:04:15 (EST)
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  Edoubleitk   Edoubleitk1
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Re: guest book entry
« Reply #1 on: Jun 29th, 2006, 9:18pm »
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One of Unsolved's favorites.
 
I've used it before as well
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
unsolved1
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Re: guest book entry
« Reply #2 on: Jun 29th, 2006, 10:50pm »
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Your right Eric  Wink
 
IV Solu Medrol always gives me some relief  Cheesy
 
Doctors often give different dosages depending on the doc. Most IV injections are 125mg ... but can go higher. I've had as much as 1000mg at a time. The only bad thing about this is it won't break my cycle and the more you do, the more serious the side effects become. This can only be used as a 'transitional drug' due to it's side effects. You will blow up quickly and experience other side effects if you use it very much !
 
Glad to hear it breaks his cycle. Hope he stays pain free for a long time. Also hope he doesn't have to use it very much (Solu Medrol)
 
UNsolved
 
« Last Edit: Jun 29th, 2006, 10:51pm by unsolved1 » IP Logged
jon019
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Re: guest book entry
« Reply #3 on: Jun 29th, 2006, 11:44pm »
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Hi Aaron,
 
Oh yeah. After 9-10 months of unremittant hits I got off the "no meds' band wagon and in desperation sought help from a neuro. After 20 min of taking my history, with the appropriate nods and flinches, she had a solu-medrol IV in my arm before I knew it. With a subsequent one week taper of tablets of same and verapamil since, I have been pain free since 9/14/05 (will NEVER forget that date). Initial side effects lasted a couple of days (light headed, feeling "odd"Wink then no others.  
 
Many here have had success with prednisone (me too, 15 years ago). Thanks for relating your experience.
 
Jon
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jon019
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Re: guest book entry
« Reply #4 on: Jun 30th, 2006, 12:21am »
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Sorry Matt, should have responded to you. Yes, been there, done that. Worked for me.
 
Jon
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