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   Author  Topic: no longer chronic  (Read 21268 times)
miapet
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Re: no longer chronic
« Reply #225 on: Mar 7th, 2005, 8:54am »
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iwannabeer .. .*YAY* glad you got the quote thingy down . . .if you are only taking the drug for CH, and not for epilepsy, than I would suggest detoxing off it . .depending on how much you're taking, taper off it?  does o2 work as an abort?  If it does, use it while you're detoxing!
 
*YAY* Renee! I love that people can share their knowledge about drug interacions, as so many have tried so many things!  Thanks for keeping up with our thread!
 
*positive light and energy*
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Re: no longer chronic
« Reply #226 on: Mar 7th, 2005, 6:03pm »
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Thanks for the info Renee!!!
And thanks for everything!!!
I love reading this thread........
HArd decisions to make yet will be made at some point.....
I have a new doctor that I will be seein over @ NECH so it is atleast a biggie that I finally get to deal with someone that "understands"......
The fungi remains on the mind yet I want to see what this guy can do.......
 
Love ya all!!!
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Re: no longer chronic
« Reply #227 on: Mar 7th, 2005, 11:35pm »
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on Mar 7th, 2005, 6:03pm, E-Double wrote:
The fungi remains on the mind yet I want to see what this guy can do.......

 
As long as he doesn't bring up Goats, you're good to go. Once yer done fooling around with the medical diatribe, chew a fistful of shrooms. Or two. Or not.
 
We'll be at this for a while,
RJ  
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Re: no longer chronic
« Reply #228 on: Mar 8th, 2005, 5:52am »
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Miapet - So happy and glad "D" is still doing well and painfree. Keep it going!!!!!!!!!!!
 
E-Double - The alternative treatment has turned out to be the medication with the best and most effective results in alleviating my clusters I've ever tried. I only wish I would have tried it sooner - would have saved me years of unnecessary pain brought on by the beast.
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Re: no longer chronic
« Reply #229 on: Mar 8th, 2005, 1:38pm »
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E-Double . . .I know there are many things that contribute to a person's decision on if or when they will do shrooms or not . . .  
 
BUT, for the life of me, I don't understand the willingness to continue searching for that cure, in the current medical field, when there are posts after posts of people not having success with 'traditional' treatments.  Why is it okay to take off-label scripts that a:  don't work   b:  are harmful to various body parts    c:  cause rebound h/as    d:  etc e:  all of the above  ????  
 
I know I'm stirring up a hornets nest but, I don't see how walking around in a zombie state to phucked up to do anything about the h/a that's slamming you and to phucked up to know that it's been happenng for days/months/years/you fill in the blank .. . .when, just trying the fungi may be the answer y'all have been looking for .. . .I mean, what the heck, it can't do any worse than any of the other drugs that docs so willingly have y'all try .. . and it MAY DO GREAT!!!
Tomorrow, I will proclaim 42 weeks of p/f time .. .this thread, let alone this p/f time with the man I love, would have never happened without the fungi.
 
Mr. Happy . .. you're right . . .*sighs*
 
Chillrmn1 . . .here here . . .sooner would have rocked . .but now is just fine too!  Glad you're doing well!
 
*positive light and energy*
miapet
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Re: no longer chronic
« Reply #230 on: Mar 8th, 2005, 2:45pm »
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Quote:
Why is it okay to take off-label scripts

Question:  What is an off-label script?
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Re: no longer chronic
« Reply #231 on: Mar 8th, 2005, 4:12pm »
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an off-label script is a prescription that is used for something other than the FDA approved conditions.  
 
Some examples (I presume, haven't checked with the FDA) are Olanzapine and Ritalin for CH.  I doubt that the drug companies have tested these meds for clusters and jumped through hoops to get the FDA stamp of approval.  
 
It is legal for a doctor to prescribe a med for anything if he believes it will help with that condition.  The pharmaceutical companies, OTOH, can only advertise a med for approved uses.  
« Last Edit: Mar 8th, 2005, 4:15pm by floridian » IP Logged
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Re: no longer chronic
« Reply #232 on: Mar 8th, 2005, 4:29pm »
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thanks Flowreeda.  Guess that makes Imitrex one of the few on-label scripts for clusters.
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Re: no longer chronic
« Reply #233 on: Mar 8th, 2005, 8:11pm »
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on Mar 8th, 2005, 4:29pm, Bob P wrote:
thanks Flowreeda.  Guess that makes Imitrex one of the few on-label scripts for clusters.

 
It's the only licensed med for CH in the UK and Prof Goadsby is now on record as saying that it "probably" extends cycles.  
 
         Filbert.
« Last Edit: Mar 8th, 2005, 8:12pm by Filbert » IP Logged
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Re: no longer chronic
« Reply #234 on: Mar 8th, 2005, 10:13pm »
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on Mar 8th, 2005, 8:11pm, Filbert wrote:

 
It's the only licensed med for CH in the UK and Prof Goadsby is now on record as saying that it "probably" extends cycles.  
 
         Filbert.

Glaxo's clever little trick...
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miapet
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Re: no longer chronic
« Reply #235 on: Mar 9th, 2005, 9:34am »
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Floridian, Filbert, and Vig . . . thanks for taking care of that!
 
Well, we hit42 WEEKS PAIN FREE
!!!
 
Wishing everyone well in their battles with the beast~
 
*positive light and energy*
miapet
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Re: no longer chronic
« Reply #236 on: Mar 9th, 2005, 9:44am »
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Quote:
It's the only licensed med for CH in the UK and Prof Goadsby is now on record as saying that it "probably" extends cycles.

Realized that the first time I used the jabs.  I'll stick with cafergot and O2.
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Re: no longer chronic
« Reply #237 on: Mar 9th, 2005, 10:35am »
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BobP . . .o2 rocks!! PLEASE be careful on the cafergots . . .I know, lots of people don't have problems . . .but one person having a circulatory issue is one more than I like . . .. (just watch out, k?)
 
*positive light and energy*
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Re: no longer chronic
« Reply #238 on: Mar 9th, 2005, 10:51am »
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Been painfree for 39 months now.  Hoping I never have to go back to any of this crud.
 
I've used cafergot tabs for about 30 years to treat my clusters.  Usually average 20-30 tabs a week.  That's 2 to 3 times what the literature says is max.  To date the worst I've had is cold fingers and toes from the reduced circulation.
 
I knew a guy here at work who also used cafergot.  He woke up one morning to find his toes turning black.  Landed him in the hospital for a few days.  It is dangerous stuff.  I continually check to see if my toe and finger nails are still pink.
 
If another cluster does start I'll use:
 
1.  O2
2. Fungi
3. Kudzu
4. Amerge or Frova
5. Cafergot
 
in that order.  We'll see what happens.
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miapet
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Re: no longer chronic
« Reply #239 on: Mar 9th, 2005, 4:33pm »
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BobP, *YAY* and *happy dance* .. .I hope you never have to use any of the things on that list!!!  Congratulations on being pain free!  
*positive light and energy*
mia
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Re: no longer chronic
« Reply #240 on: Mar 12th, 2005, 12:37am »
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Hi,
 
This thread is just inspiring.  Remember that all the meds you take are all off-label , including verapamil, depakote, topiramate, etc. etc.  Could the psylocibin be the first  "labelled" CH treatment?  In the mean time, keep on the white thumb working.  
Join the dance, the dance of liberation!
 
Thank you D and miapet for your story, positive light and energy you give us !
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Re: no longer chronic
« Reply #241 on: Mar 14th, 2005, 8:47am »
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bluesunshine, you're right, all of those drugs are off-label .. .and we hope the fungi will be labeled for ch too!
 
As for spreading positive light and energy, and trying to inspire other people . . .we decided to post our results here in an effort to show others that there is hope . . .
 
*positive light and energy*
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Re: no longer chronic
« Reply #242 on: Mar 16th, 2005, 9:33am »
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43 WEEKS PAIN FREE

 
Wishing everyone pain free time, no matter what your method of battle is .  . . ..  
 
*positive light and energy*
 
miapet
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Re: no longer chronic
« Reply #243 on: Mar 16th, 2005, 12:19pm »
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Truly amazing mia Cool
 
Tell D I'm still trying to catch him, but he's still got a bit of a headstart Grin
 
-Lee
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Re: no longer chronic
« Reply #244 on: Mar 16th, 2005, 12:23pm »
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I'm happy dancing for you guys, mia!!!!  shore  WhoooHooooo!!!
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Re: no longer chronic
« Reply #245 on: Mar 16th, 2005, 12:52pm »
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Lee, we're excited for your success!! and we have no problem sharing the ability to be p/f and counting the weeks!
nani . . .thanks *g* . . .it's good to have dancing partners!
 
*positive light and energy*
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Re: no longer chronic
« Reply #246 on: Mar 17th, 2005, 9:45am »
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hahahaha edited to erase my brain cramp *L*
*positive light and energy*
mia
ps, thanks vig! hehe
« Last Edit: Mar 17th, 2005, 3:55pm by miapet » IP Logged

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Re: no longer chronic
« Reply #247 on: Mar 17th, 2005, 2:54pm »
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Hey everyone.  This is my first time to post on this board although I have been reading the site for quite some time.  I am a chronic as well with 3-5 headaches a day for the last 4 years.  
 
I am seriously considering this treatment and I have read the clusterbuster website but I was hoping someone who is knowledgable would have a conversation with me about it.  I am very nervous about even the possibility but im desperate at this point.
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Re: no longer chronic
« Reply #248 on: Mar 17th, 2005, 4:44pm »
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Miapet
I just want you to know you are my inspiration. I've been following this thread from the beginning. Very happy for your sucess. I admire the way you have let others know about this treatment and suspect you have no idea how many you have helped. Thank you
               Sophie Smiley
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Re: no longer chronic
« Reply #249 on: Mar 17th, 2005, 5:51pm »
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Well said Sophie!  Ditto Smiley
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