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Gator
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Baclofen Revisited
« on: Apr 25th, 2005, 11:07am »
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Okay, I have struck out on every preventative med tried so far and an occipital nerve block did nothing.  The new neuro has prescribed Baclofen.  From my reading in the past posts here and from clinical trials, I see that it helps some, does nothing for others and makes still others worse.
 
I am to take Baclofen 10mg - 1 per day for a week, then 2 for a week, 3 and finally 4 per day.   As of now (Week 1 - Day 3) the attacks are triggered much easier and the shadows have become almost constant.  I know it takes several days to get into the system, but this regression is killing me.  This is only the third post I have been able to make in almost a week, because the computer monitor is triggering in like 10 minutes where I can normally go 30 or so.  Television is out of the question.  I don't make it to the first set of commercials before I get that feeling of impending doom.  Even working in my woodshop is a pain in the ass.  Hard to get anything accomplished when you can't concentrate on what you are doing.  This sucks.  I'm back to watching my frickin fish for entertainment again.
 
Too soon to tell if it is going to do any good, but so far I'm not liking this.
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Re: Baclofen Revisited
« Reply #1 on: Apr 25th, 2005, 1:32pm »
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So sorry to hear you are still suffering so badly Mike.
I have gone the Occipital Nerve block 3 times.  The first it did nothing.  The second 2 times I was inpatient recieving dhe for almost 2 weeks when we tried it again.  I was PF that day.  The pain doctor did the nerve block twice in a row to make sure he got the occipital nerve properly.  I highly doubt it was the DHE (after 2 weeks on it, the pf the day of the blocks?! it had to be the blocks or coincidence I dunno)  Just wanted to throw that out to ya.  From what the pain doctor explained, it's very difficult to get that Occipital nerver right on.
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Re: Baclofen Revisited
« Reply #2 on: Apr 25th, 2005, 3:55pm »
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Hiya Mike,
Sorry the SOS is still occurring and at an even higher rate.
 
I could only find one article regarding the use of Baclofen....on the OUCH site...though I'm sure you've read it...
http://www.clusterheadaches.org/library/medications/baclofen.htm
 
I forgot who posted ( meds lol) but some newer person just posted something on using it.......I'll search for ya.
 
Hugs to ya big guy!!!
 
E
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Re: Baclofen Revisited
« Reply #3 on: Apr 29th, 2005, 12:57am »
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Thanks E.  I saw that and all the ones I could find on this board.  After my experiences with all the other meds, I'm skeptical at best, but at least we keep moving forward.  According to what I've read it takes a few weeks to get fully into your system.  It sure as hell isn't helping yet.  So far it's making matters worse, but then it does for some.  Damnit!
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Re: Baclofen Revisited
« Reply #4 on: Apr 29th, 2005, 4:52am »
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I really feel for you...at times I have found the medication as bad as the beast....I expect the pain..with the side effects you keep thinking..what next?
 
It does take a while for meds to get into your system..but half the time I stop taking them..and back to the docs for the next suggestion.
 
Hope you soon find some relief.
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    headcase
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Re: Baclofen Revisited
« Reply #5 on: Apr 29th, 2005, 6:56am »
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Hi Gator,
 
I've been on Baclofen for about 6 years. However, I am taking it for MS and not CH.  Seeing I still have both what do you think?
 
Take care and be strong
 
Marta
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Re: Baclofen Revisited
« Reply #6 on: Apr 29th, 2005, 7:02am »
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For the life of me I dont see how a muscle relaxer could prevent an attack. Make it more bearable maybe but prevent it?
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Re: Baclofen Revisited
« Reply #7 on: May 3rd, 2005, 10:26pm »
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Don, I just don't know, but it's one more thing to try.  I've done most of the "traditional" meds alone and in combination with no luck.  
 
Week 2 - Day 4: 4 days now of 10mg 2x per day.  Still having near constant shadows and the hits keep coming.  So far, I'm not impressed.  Doc wants me to stick it out for a month.  
 
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Re: Baclofen Revisited
« Reply #8 on: May 10th, 2005, 12:48am »
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Okay, Week 3 - Day 4: Upped dosage to 10mg 3x per day 4 days ago.  Not only is it not helping to prevent attacks, I am still having the near constant  shadows between hits, attacks trigger easier and I'm even getting extra hits.
 
Geez, I'm getting tired of this shit.  I'm about ready to perform my own deep brain surgery ala .44 magnum.  
 
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    headcase
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Re: Baclofen Revisited
« Reply #9 on: May 10th, 2005, 4:08am »
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Yo Gator,
 
Why did the doctor put you on baclofen?  Like I wrote before I've been on it for the last five years because of my ms.  It hasn't affected the CHs, they're still happily dancing away.
 
On the bright side (?). you've nearly finished your month's penance.  Did you torture your doctor in a previous life or is he maybe your long lost evil twin.
 
You take care, ignore the .44 (although I know there have been many times that if I had one I would have quite happily blown the left side of my head out) and smile when you can,
 
Thinking of you
 
 
Marta
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