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enli

Questions? Questions?

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HOW LONG?
Can this last? 1.5 grams MM per month since April and NO CH’s! Has been very stressful period with too many funerals and not much in the HAPPY realm. Just wondering if anyone would care to look into the future or past and give insights on how long this ZERO CH ACTVITY might last? Does the beast ALWAYS find a work-around or are there people who actually keep it away for extended lengths of time? When looking back over the last two years, don’t want to think about how BAD my life would have been had I not listened to all of you and gotten on this path of self medication.

UVM STUDY
Have been contacted and, with my niece, have signed up for study. Will I have to stop self medicating for CH to participate in this study? Not something I would look forward to, but would consider. Will be 67 in December, is the upper age limit 65? People over 65 not capable of having cluster headaches? Wish it were true!

ATI NEUROSTIMULATION
My niece sent me link to this site and I was wondering if anyone here has insight as to its trials in the US? Searched a couple of message boards and found mention of the procedure in 2013 (European trials), but not a lot of discussion of its potential use. Why use this abortive mechanism when busting can eliminate the need? Sounds like a temporary “quick-fix†instead of a viable cure. But for those who won’t try busting (my niece) or it doesn’t work for them it could be another weapon in this war of pain.

May be too many questions, but it’s rained for two days and I was bored! Looking forward to hearing from ya’ll!

ENLI

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G'mornin Enli! It has been awhile since I've seen your name here!

Unfortunately you do have to agree to not using any treatments other than those in the trials with the exception of O2 I think.

I'm 68 which has disqualified me for all of the latest studies as well (well, you know we grow out of CH in our late 50's. ..pfffttt)!

Nice to see you again and glad you're having success with busting!

Dallas Denny

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Hiya,

 

How long it'll last is a good question, and I've not seen a lot of comments on the topic. Often, I think, when people find a working solution they drop off the forums as they no longer need our help. I know I tend to only poke my head in from time to time during the good times, but am here almost daily when things get bad. The down side of this is that we don't get a lot of long-term reports of positive outcomes. 

 

Also, how quickly does your body adjust to meds? Mine adjusts pretty quickly, and I have to change things around every 6 months or so.

 

I do have a saying: No two clusterheads are the same, and just as soon as you figure your's out, it changes. 

 

The beast is pretty good at finding a new way in. Not to be pessimistic and be a downer, but stay vigilant. 

 

MG

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