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Kristofer

Gammacore for Chronic Cluster Headaches

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Hi I am forty eight, male and have intractable chronic cluster headaches for twenty years.  I have seen the best specialists in the world and ended up having three full trigeminal rhizotomies that did give me three years of no pain but then ch returned.  I have been on the maximum dose of opiates that the FDA will allow for over eight years now. This has managed my pain moderately but how long can I do this.  I am on other meds as well prescribed by my neurologist who found gammacore for me.  I bought it and have been using it for one week now learning the best position for the best results.  I use it three times in three minuter intervals at 40.  I was surprised that it did change the morphology of the pain and brings it down from an 8 to a 3. I then am able to lay down and fall asleep for a few hours before my headaches return.  I use it four times a day and I just don't know if I can justify the $600 dollars a month. I am disabled. Electracore did say it worked 20% of the time in cch. I believe it could replace my use of Actique to break the pain that lasts for over 12 hours  Is there anyone out there that has CCH and is using the gammacore. Thanks for the board.

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Dear Kristofer,

Sorry to hear of your trouble. Some advice- if it is at all possible you should attend the Clusterbusters Annual meeting Sept in Denver. You will find out there are people who have had chronic CH for longer and all sorts of advice from many who have found success from an even worse position (like Bob Wold!). Seriously you need to be there. You need to talk to other chronic CH folks,- how many have you met?

Opioids have no role in cluster headache. Before you construct a rebuttal to that, just think, how bad you are, on opioids and ask yourself, are they working??? Your body has been hijacked (by opioids) currently, but that can be dealt with. BTW The FDA does not have a maximum opioid dose, but may suggest a maximum for certain products like Actiq

With the data we have, Gammacore has been shown NOT to work in chronic cluster headache, in 2 well conducted clinical trials. 

You need the CGRP antibodies, when they are released (theoretically can switch off CH) or BOL (I hear there will be an update soon on the status of this). I presume you are aware of the vitamin D protocol, melatonin etc.

Peace and good wishes,

BMcG

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The doc makes a lot of good points.  Probably the best one is to try and get yourself to the conference.  It might just change your life.  I understand completely the lack of funds problem, you might want to look into the scholarship program clusterbusters has set up to help people who can't afford the trip. 

I have had clusters for about 20 years now as well.  When I first got diagnosed the only things that seemed to help were triptans, opiates and sometimes cannabis.  The opiates worked if I took a whole lot, (at first)... but it did not take that long for the situation to change for the worse.  Before I knew it I ended up in the situation where the only time I was not in pain was if I was on opiates, and even then I was still in a shitty mood.  I never had enough meds, had very little energy and I just went back and forth between cluster headache, migraine, cluster headache, on and on they went.  Most of that changed about 7 years ago when I had my doctor changed from someone who had no idea what they were doing, to someone who actually had a clue.  I was taken off the opiates and put on an intranasal ketamine spray.  It has worked to abort most clusters, when it does not completely abort them the dissociative effect makes it actually pretty bearable.  (This is something that I never really felt was possible, the idea that you can have a cluster headache and think about anything besides the cluster seems bizarre, but for me it has been true) The ketamine also seems to have a preventative effect on the clusters as well.  I get so many less clusters it is ridiculous.  My migraine attacks are still there but don't knock me down as much. Depression has been kicked to the curb. Before the ketamine I was in the ER almost once a month (not that it really helped) but since being prescribed ketamine I have not had to go once.  And while I agree with the doc that you should get off the opiates, I would not blame you if the idea of it scares the hell out of you.  One of the more amazing things that I found with the ketamine was that the lack of opiates never bothered me, not once.  Other people have reported that ketamine has worked as an exit strategy for opiate addiction so this is not so surprising.  Some would say this is just trading one drug for another but it is quite different.  Most times I will go a month or so between ketamine prescriptions and still find that it helps my chronic clusters.  Hope some of this helps.  Any questions feel free to ask.

 

-Ricardo

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