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I do. I'm not sure if you would like the whole text or just want to make me aware. I will try and upload what I have. The GammaCore has some favorable data and shows some promise especially in episodics. Still waiting for "real world" impressions. Many new technologies get initial enthusiastic thumbs up only to find subsequent use dampens the enthusiasm. The non invasive nature, portability and potential as a triptan substitute make it attractive. My biggest beef is the planned obsolescence of the unit. In the US it stops working 33 days after activation. For episodic use that is frustrating because you might buy one to have handy use it a few times and go out of cycle and 30 days later it is garbage. external stim.pdf

Electrical stimulation is vastly over rated. (this is true even in non cluster headache conditions) Batch is right on. When you look at the data for implantable simulators and external simulators it is practically unimpressive. Basically it works partially some of the time. With implantable you run the risk of a complication that leads to not reversible changes and with the external the subscription model makes it financially unsustainable without insurance subsidy. All for partial relief some of the time. When you ask the "general population" of users there are very few long term happy campers. Better to explore options with better preventative track records like D3 or psychedelics. External stim (gamma core) may play a "special teams" help for thinks like unavoidable air travel but even then the 33 day model planned obsolescence model they employ makes it a bit unpractical.

I wouldn't hold my breath... Neurostimulation, i.e., GON, DB, SPG and VN Stimulation all suffer from the same problem. They only work ~ 40 % to 70 % of the time while the CHer is awake and able to actuate the remote controller before the pain gets too high. No joy while sleeping... In short, they only address the symptoms and not the contributing factors...

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

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