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Hi everyone, Clusterbusters would like your help determining what locations work best for you for conferences. We have a very short, 4 question survey which will take about 2 minutes to complete. We'd really appreciate the feedback. Thanks. https://goo.gl/forms/0zPHwUC2Hll6JR8C3

Mark, Freud means that many people here are using psychedelic medicine to treat their cluster headaches. We call it "busting." There are many prescription drugs that interfere with the psychedelic drugs, and they must be avoided when treating with psychedelics. From what I have read, some people respond to lithium. The first line preventative is verapamil, and lithium is a second or third line treatment. Everyone is different, and lithium might work for you. It certainly is not out of left field, and it doesn't surprise me that your neuro wants to go to lithium if verapamil didn't work. However, I have never taken lithium and would leave discussion of that to people who know more about it. Whether you are busting or not, oxygen is your first line abortive. You indicated in your original post that it did not help much. There are some people who don't respond to oxygen, but the vast majority do. And it is a real life saver for a lot of people. There are CH sufferers out there that only use oxygen, no other abortives or preventives. Also, the best practices regarding oxygen have changed over the years. Most of those changes involve an increase in the flow rate. Oxygen should be used for 15 min. at onset of attack at a flow rate of AT LEAST 15LPM (25LPM is preferred) through a non-rebreather mask. If you have not had success with oxygen, and you have not used it with those flow rates or mask, you really should try it again. Many people who thought oxygen didn't work for them ended up finding out it did work, but they were given bad instructions by their doctors. This happened to me, and when I got it right, my whole life changed.

https://www.docguide.com/sphenopalatine-neuralgia-independent-neuralgia-entity-pooled-analysis-case-series-and-literature-rev?tsid=5 "The clinical characteristics of SN [sphenopalatine neuralgia] might mimic cluster headache with the exception of cluster pattern and treatment response to oxygen. The typical duration of pain episodes in SN was several hours to several days; and in some cases, pain was persistent."

If I can get my cycle to quit, I'll do whatever out-of-episode prophylaxis is available - I've burned through almost everything else. Over the past 20 years, I've been on Topamax, Depakote, Keppra, Verapamil, Lithium, Lamotrigine, Lacosamide, and Oxcarbazepine. I've done 1 g Depacon Infusions with Solumedrol. I did Botox every 3 months for 1.5 years. I've done occipital and temporal nerve blocks. The beast always returned. I recently has about a 2 year break - on zero drugs - after a MM bust and having a little left over for every 2 month boost x 4 rounds. Which brings us to now - I have excellent insurance, and the Aimovig Ally program will keep my costs down for at least a year - so if I don't see any adverse events from doing the monthly shots, I'll keep doing them until the HAs return, then re-evaluate. If my episode doesn't break from the dex, I'll be busting again. As to the mechanism of action of the CGRP inhibitor - it is supposed to reduce number of hits and intensity. CGRP is a "messenger" type neural chemical, whose message is typically "pain". It's one of three secondary chemicals that intensify migraine pain, after the activation of the serotonergic receptors at the outset of the headache. It's entirely possible that this mechanism will have more relevance to chronic cluster than episodic, but we'll see. As to the cost - nobody should be paying $7000/year for this or any drug. If you have any sort of commercial insurance, there is co-pay assistance through Amgen. If you don't have insurance, you should apply for full-on patient assistance programs. Paying full cash price for branded drugs can be avoided most of the time. Start with pparx.org if you need help. Lenny