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Topic: new to site/medications (Read 282 times) |
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DrLisa
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I'm thrilled to find this site. 45 yo w/onset of headaches in my teens and pattern became typical of clusters about 20 years ago. I get a bout every couple of years, lasting 2-3 weeks, with episodes up to 8 times in each 24 hours, the usual day-and-night-but-hell-at-night pattern. Went 3 YEARS without any CH, then started again in early April, now going into the 8th week and I'm getting psycho. Had 2 weeklong bursts of oral steroids, which aborted the attacks, but the CH returned within 48 hrs of stopping steroids both times. Got into the usual 2 shots of imitrex a day (my savior) and fiorinal in between, to the point where I was either clustering or rebounding pretty much around the clock, and of no use at work or at home. Got admitted 10 days ago for IV decadron, got 2 dayys of that then home on 60 a day of prednisone again, x 12 days, now tapering. I am totally a head case from the steroids not to mention looking like the Michelin Man. Not sleeping, having bizarre "steroid dreams" (could write a screenplay every time I wake up). I've also been started on BACLOFEN by my neurologist - he says it was brought up at a meeting just about a month ago as being promising for aborting a cluster series and subsequently preventing them.
Has anybody out there had any experience with BACLOFEN? Am I the first guinea pig?
Anybody who can commisserate with the craziness of being on several weeks of high dose prednisone?
I don't mind if you doctor-bash but should probably tell you I'm a pediatrician (not a neurologist!) and not all of us docs are unsympathetic and uncaring.
I'm really impressed with the website and the mutual suport, and I'm glad I found you. Looking forward to hearing people's thoughts...
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| « Last Edit: May 30th, 2002, 1:31am by DrLisa » |
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Karla
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Re: new to site/medications
« Reply #1 on: May 30th, 2002, 6:53am » |
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Hi Lisa, Welcome to the family and sorry your here. I am sorry to hear you are being hit so hard. I usually get 8 ha a day everyday so it doesn't sound like you are rebounding to me. But you know your body best. Trust your instincts. If you do a search on Baclofen you should find it in the archives. You are not the first person to be put on this. There have been various people throughout the year or so. I am chronic so I have no experience in taking steriods. If you need an ear feel free to email me at karlak_13@lycos.com.
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Karla
suffer chronic ch
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Proud Mom of Chris USMC Semper Fi
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NotH20
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Re: new to site/medications
« Reply #2 on: May 30th, 2002, 8:32am » |
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Hey Lisa - you have come to the right spot. Sorry to hear that you are in such pain - but keep the faith for brighter days ahead.
I'm sorry, but I have no knowledge of Baclofen...but I agree with Karla - search this board and the OUCH board and you will find a great deal of information.
I have done the steroid dance way too many times. If you need assistance in writing that screen play during my next cycle - I'll be happy to help 
Have you tried DHE at all? I was hospitalized for 6 days with a DHE IV back in January - after my discharge I only had 2 ch's at home and have been pain free ever since except for some minor shadows ;D
Good luck to you.......
NotH20
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ahlevis
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Re: new to site/medications
« Reply #3 on: May 30th, 2002, 12:58pm » |
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hey Lisa...have never taken Bacofen.... if iit works let us know.... as far as doc bashing....I don't hate 'um just have figured for the most part have no fing idea..... as far as a screen play I'm game Metamorphises was written durring headache cycle.... who knows....
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Linda T
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Re: new to site/medications
« Reply #4 on: May 30th, 2002, 3:09pm » |
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Dear Lisa: Sorry you're in pain. You've found the best place to answer all of your questions. Never been on the baclofen but I have been on pred. This cycle I was on 2 15 day courses. The first one helped the second did not. I think the course was too short to actually feel any of the freaky side effects though.
During one of my previous cycles I was on a 30 day course of pred. That was freaky. Very wired. Only slept about 3-4 hours per night (even though I didn't get any ch). Wanted to do all sorts of things at 3:00a.m. Like bake x-mas cookies, wash curtains and all of that stuff that you NEVER feel like doing. Bad dreams. Moodiness (read: Bitch). I was very glad when the course of pred was over.
Keep us posted on the baclofen. Wishing you PFDAN always, Linda T.
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What a long, strange trip it's been!
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simpson1974
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Re: new to site/medications
« Reply #5 on: May 30th, 2002, 9:55pm » |
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Yes, please keep us posted on the baclofen. That's one I haven't heard of. I was only diagnosed a handfull of years ago, and I've taken the standard stuff... I'm on prednisone again, myself, as of today. Luckily never had any crazy side effects from it... just a severe case of eating everything in site, but that's pretty much the norm for me, anyway. 
Trying Depakote for the first time as of today, as well, so hoping it works for me. Hope the baclofen does the same for you.
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Pinkfloyd
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Re: new to site/medications
« Reply #6 on: May 31st, 2002, 1:16am » |
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Hi doc,
I was on baclofin years ago for my clusters. Sorry to say it didn't do a thing for me.
Now, if your neurologist had mentioned psilocybin as a new breakthrough possibility, I would have been impressed as his (her) keeping up with the latest info.
Clusters are a very specialized malady and I believe that about the same percentage of GP's are experts on clusters as neurologists. JMHO.
Good luck
You want dreams? Try high doses of methadone AND prednisone at the same time!!! I was writing screenplays (and starring in them) while I was *awake.*
Pink
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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SwordAssembly
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Re: new to site/medications
« Reply #7 on: May 31st, 2002, 1:32am » |
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BACLOFEN,
Been there, done that
didn't do squat...
Welcome Doc
John
aka
SwordAssembly
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| « Last Edit: May 31st, 2002, 1:33am by SwordAssembly » |
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kim
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Re: new to site/medications
« Reply #8 on: Jun 3rd, 2002, 8:13am » |
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Hi Lisa,
sorry your having a hard time this cycle. Never tried the baclofen (sp) but you and me and the entire town of clusterville could easily write a television weekly series on the adventures of prednisone............. Prednisone: the Good, the Bad, and the Ugly LOL! What is WITH that balloon face syndrome? I personally was like "Cybil" with "Cerebal Palsy" on pred. ;D
have to agree with you that this website is GOLD! Keep reading and researching around, your bound to get great info and insight on both dealing with and treating your clusters.
Keep posted on the balcofen - let us know.
Smiles and Well wishes, Kim
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clusterdome
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Re: new to site/medications
« Reply #9 on: Jun 3rd, 2002, 6:55pm » |
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Welcome Doc,
I don't believe you're going to get doc-bashed here. At least no more then anyone else that is.
Expect help, support, understanding, new friends that seem like old friends, and a good Doctor joke or two or three or four or more you might like to pass on.
I did or tried steroids to break my cycles alot. My Doc and I don't go there any more. If anything, they made mine worst. Either higher on the KIP or in frequency. My ears got fat! The suckers made me bigger 'almost' (damn shame) everywhere. I also became stranger than I was/am already - - - -Steven King stuff like, "I'm baaack!"
Never did the others. Like everyone else, I'd like to hear how it goes for you and wish you luck. I'm sorry but happy you found us. Welcome aboard!
PFDAN...........................Ed
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