CHfather

Lyrica is an "advanced" version of Neurontin (gabapentin). At least in theory, it could help with neuropathic pain. Very strong side effects (particularly that Zombie-like business) in some people. Sometimes prescribed for CH itself. If you type lyrica into the search bar at upper left, you'll see a few discussions of it. I don't know whether it has been established whether it might block busting.

What they said, Fab. You have brought sunshine, courage, laughs, wisdom, and inspiration to many folks here, and you are missed. Get well soon, and know we're thinking of you.

You are very wise indeed for someone under 18, spiny.

Complete new drug, which has shown great effectiveness for preventing migraines. A lot of people in the know think this could be a very big breakthrough for CH. Read more about the drug (LY2951742) here: http://www.arteaus.com/role-of-cgrp-in-migraine.html Gotta say again that my heart goes out in huge gratitude to those who will participate in this, who will risk (as I'm reading it) 8 weeks in cycle taking an ineffective placebo. I am assuming/guessing that they'll still be allowed to use oxygen to abort attacks, but I'm also assuming/guessing that any pharma meds (verap, trex) might be prohibited. Just guessing about all that. Obviously, we'll learn more as it's underway.

Quoting this from another thread to start this new one . . . Is there any way of reaching her? Maybe some kind of group message if she can't look at individual ones? This makes me so very sad. Of course, I have noticed her absence, but sometimes those things just happen. She has been such a beautiful life force here. Speaking of which, I have thought (again) recently that if there are two people who I think would get along great in the world, it would be Fab and Pixie-Elf -- couple of life-loving, plain-speaking, people-helping Texas Women with a capital W who have been through a lot more than their fair share. Some day . . . Anyway, if there's a way to reach her, individually or collectively, I'm in.

"Abnormal coactivation of the hypothalamus and salience network in patients with cluster headache" http://www.docguide.com/abnormal-coactivation-hypothalamus-and-salience-network-patients-cluster-headache?tsid=5 >>>OBJECTIVE The purpose of this study was to investigate whether the resting-state coactivation of the hypothalamus, both ipsilateral and contralateral to the headache side, and the salience network (SN) was altered in patients with cluster headache (CH) in the headache attack remission state in the cluster period, and to reveal possible pathogenesis of CH attacks and gain further insight into the pathophysiology of CH. METHODS Resting-state fMRI scans of 21 patients with CH were obtained (13 with right-sided headache and 8 with left-sided headache) and 21 age- and sex-matched normal controls. The resting-state fMRI data were analyzed using independent component analysis to identify the group differences of hypothalamic-SN coactivation between the patients with CH and healthy controls. RESULTS Decreased functional coactivation was detected between the hypothalamus, both ipsilateral and contralateral to the headache side, and the SN both in patients with right-sided CH and in those with left-sided CH. CONCLUSION Our findings suggest that the decreased hypothalamus-SN coactivation may have a role in CH attacks by the defective central pathway of pain control and autonomic nervous system dysregulation. This helps to gain additional insight into the pathophysiologic basis of CH and the nature of the brain dysfunction in CH.<<<     Of course, I don't understand this at all, or at least just barely. There is an interesting article here about the salience network -- https://www.quantamagazine.org/20131205-inside-a-brain-circuit-the-will-to-press-on/ -- and one thing that's encouraging to me is that the salience network seems to be being widely studied, so maybe understanding and treating CH will be caught up in that wider net.

Nice one, T'H'!!

Thanks. Good days and not-so-good ones for the kid. I'm about to post a question in that regard.

Well, I already posted my reaction at your other thread, but I'll say it again -- I am so, so happy to see you back. Sorry for all you've been through, and are going through, and your mom has gone through and is going through; happy that my feariest fears about your absence weren't correct.

Yer makin' an old man cry here, Mystina. I am so completely thrilled to see you!!!!!

T' H', you can read about Flunarizine (which is not available in the US) here -- http://en.wikipedia.org/wiki/Flunarizine. Sounds like a sensible pharmaceutical for your conditions, including this: >>It may help to reduce the severity and duration of attacks of paralysis associated with the more serious form of alternating hemiplegia.<< There's some additional info here -- https://www.nice.org.uk/advice/esuom33 -- including this alert: >>For maintenance treatment, 2 successive drug-free days every week are recommended and flunarizine should be stopped after 6 months and only re-started if the person's condition relapses.<< I can't vouch for this info, but it seems to be coming from an official source. I'm really sorry for all you are dealing with.

March 17, 2015: "Recommendation for vitamin D intake was miscalculated, is far too low, experts say" (Ten times lower than it should be, those experts say. Because of a math error.) http://www.sciencedaily.com/releases/2015/03/150317122458.htm

Well, emd', I'm glad your wife's having some PF days. At the same time, the dread of the pain returning must be terrible for her. First, to follow up on t'a's post, here's a link directly to the D3 thread over at ch.com. Batch's recommended regimen is the first post. If you can stand it, try to read (or at least skim) the whole thread. You can post something at the end. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404 Even independent of her head pain, your wife ought to be getting her D levels up (it's helpful for depression, among other things), but it could very well help with the pain, too. They never tried O2 at all????? In the US, you can set up an O2 system relatively easily using welding oxygen. Hundreds of people do that. If you want to try, let us know. Or maybe be prepared to insist on it with the neuro when you see him/her (we can provide you with peer-reviewed documentation from medical journals that O2 is the abortive of choice for CH). I don't remember what her history has been with sumatriptan injections. If you're going the conventional meds route, it would seem to be a no-brainer to include that. (Most of us here are not enthusiastic about anything that she's being given, let alone the cocktail, but that's the route you're on for now, very understandably. I'm hoping you can get a reliable diagnosis, and if it's CH, that she might want to try busting at some point. Right now, without a reliable diagnosis and with so much going on, I can understand a pharma-based pain-management approach.) My understanding of medical protocol is that both lithium and verapamil need to be monitored when they are first prescribed. In the case of lithium, it's my understanding that doses need to be adjusted; with verapamil, effects on the heart need to be looked at. I guess my only advice here is to be sure to do that follow-up with your neuro, even if she's still PF. Since at least for the moment she is doing conventional meds, it will probably be good for you to post over at ch.com (www.clusterheadaches.com), where there's a lot of familiarity with these meds. (Of course, this is assuming that she has CH.) Maybe one day you/she will want to consider busting. On a personal note, I was once in the hospital with a very painful non-CH (non-headache) condition. The pain was nonstop and very severe, and it was just horrible. The hospital's pain-management specialist saw me every day and we tinkered with a regimen to control the pain. It was very comforting to have an expert helping me, and to be trying things that seemed to help. Then, suddenly, before we had really created a fully successful plan, I got discharged because I had been there longer than my insurance thought I should be. I'm a fairly tough guy, but I cried and cried and begged to be allowed to stay for a couple more days. No deal. I got discharged with a huge regimen of awful stuff (tons of oxycontin and gabapentin, among other things) that might or might not help me. Maybe your wife isn't feeling as bad as I did, but it was one of the darkest days of my life. After two days at home feeling like a suicidal zombie, I flushed it all down the toilet and decided to look for other solutions (which I eventually found, thank heaven). Not recommending that your wife do anything that drastic -- just encouraging you and her that there are still many possible solutions out there, however depressed and frightened she might be feeling right now.

If it's the tripping and similar side effects that he hates, he should switch to seeds. No trip. You can get them quickly and legally (though preparing them is illegal). Demerol seems pretty crazy to me, even for pharma meds.

Shya, I remember that you said before that oxygen doesn't work for him. But I don't remember whether you got a proper setup to really test that. That's the #1 priority. See the CB O2 Page under the MENU tab on the left side of the page. I don't recall that he was really trying much (but maybe he had already tried it all already). D3? (https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Energy drinks? Seeds, if MM wasn't really all that helpful? If it's true that busting and O2 don't really help him, then I would look for an alternative diagnosis, such as hemicrania continua.

This is not "news," really. It's a ten-plus year-old report. But I hadn't seen it or had forgotten about it, and it's relevant to discussions that take place here: Objectives.—To document the relationship between the use of subcutaneous (SQ) sumatriptan (sum) and a change in frequency pattern of cluster headache (CH) in six patients. To discuss the clinical and pathophysiological implications of this observation in the context of available literature. Background.—Treatment with SQ sum may cause an increase in attack frequency of CH but data from literature are scant and controversial. Methods.—Six CH sum-naïve patients (three episodic and three chronic according to the International Headache Society (IHS) criteria) are described. Results.—All six patients had very fast relief from pain and accompanying symptoms from the drug but they developed an increase in attack frequency soon after using SQ sum. In all patients, the CH returned to its usual frequency within a few days after SQ sum was withdrawn or replaced with other drugs. Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache. Conclusions.—Physicians should recognize the possibility that treatment of CH with SQ sum may be associated with an increased frequency of headache attacks. http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2004.04132.x/abstract

Rim', I wouldn't jump to that conclusion. People with CH are constantly trying to connect events and see causes, but CH is so variable that you can very often be wrong in your guesses. As you can see from the posts above, some people with CH do very vigorous training and believe it helps them; others believe it brings on attacks. They could all be right. When you have your CH stabilized, and you are doing the D3 reliably and maintenance dosing with seeds or truffles or whatever you have, I'd strongly recommend that you go back into training.Â

I agree with THMH (though it seems that they are dumping prednisone in there along with anything else they can think of). It would seem like you would start with the two most likely things to work (if she has CH), pred and O2, and maybe the one most likely to work if she doesn't have CH (the indo she's taking), and see what happens. This is somewhat contrary to my earlier suggestion of trying indo along with the amitrip that they decided to give her . . . but it seems there must be a limit to how many drugs you can stick into someone at the same time.  Again, this is just my non-doctor reaction. They might be perceiving it as a big enough crisis that it needs to be attacked in that way.

I don't really know what to say, emd', except that I sure hope that something in that cocktail works. What a terrible trial, for the two of you. Just to be clear, has oxygen still not been tried? That's just so completely puzzling to me. Maybe she is, as you said in your first post, just too depleted to use it effectively? Has anything been said about that? The lithium and gabapentin doses are both pretty low (for CH). I'm not saying they should be higher, since I'm sure there must be some concern about putting all this into her system. But typical lithium dosage is 600-900 mg/day (in divided doses), and gabapentin can go up to 3600 mg/day. I'm not a doctor, and I guess you have to trust that these folks know what they're doing. Can't tell you how much I hope that something works, and then what it is that's working can be sorted out.

t'a', all that they basically mean to me is that people might be getting closer to understanding the genetic basis of CH, which I figure could be a good thing. I thought it was at least mildly interesting, for example, that they looked at the Clock gene, which is related to circadian rhythms, and apparently didn't find anything abnormal there. And the two places they did find issues -- "mutations in the ADH4 gene and a novel rearrangement involving NRXN3 gene might be related to CH in a subset of cases" -- are both related to processing that common CH trigger, alcohol. NRXN3: "Genetic variation at this locus has been associated with a range of behavioral phenotypes, including alcohol dependence" (http://www.ncbi.nlm.nih.gov/gene/9369). ADH4: "Scientists knew that the human ability to metabolize ethanol—allowing people to consume moderate amounts of alcohol without getting sick—relies on a set of proteins including the alcohol dehydrogenase enzyme ADH4." (http://news.sciencemag.org/biology/2014/12/ability-consume-alcohol-may-have-shaped-primate-evolution (This ADH4 connection was previously recognized: http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2009.01569.x/full) For an interesting story about ADH4 and your countryman (??) Ozzy Osbourne ("He had a change on the regulatory region of the ADH4 gene, a gene associated with alcoholism, that we've never seen before"), see http://abcnews.go.com/Health/Wellness/genetic-mutations-ozzy-osbourne-party-hard/story?id=12032552 All this is just chatter from me in terms of actual meaning of the study -- I just think that its existence is a good thing.

shocked, Thanks so much for this and all the other interesting and valuable information you post here. Very much appreciated.

Anything '61mom likes is good enough for me. I'm in.

no, i think you're right. but the device is small and portable, so you could have it for lots of occasions when you don't have O2 (on an airplane would be pretty great). also, like i say, i'm not sure what the "prophylactic" effect is. maybe it's just like O2, where it can sometime hold off subsequent attacks when you're using it to abort one attack, but maybe it's a broader thing than that, where it somehow acts as a generalized preventive (not fully effective as a preventive, but maybe somewhat effective). and maybe, since this is an early-stage device, they might figure out ways for it to be more effective over time. a big shout out to those who participated in testing this, because it was placebo controlled, so some people were using a device that didn't work, and enduring full-blown attacks for the sake of the science. to me, that was really courageous and generous. i think our friend b.g. (who's not here much but still active at Facebook) was one of those people.

I just posted this on another thread, but it's relevant here. There's a letter in this week's New Yorker in response to this article. The author wrote this (in part -- there's more there): Â Â Â "As a former director of the White House Office of Drug Abuse Policy, I now feel a sense of shame at having failed to try to reverse the Nixon-Ford policy that placed most psychedelics on the DEA's Schedule 1 list, prohibiting their use. Congress would almost certainly have blocked this change, but had we been able to lift the ban on scientific research into medical applications, doctors would probably now have a far better understanding of brain function, and the unnecessary suffering of many terminally ill patients could have been alleviated."

Speaking of treatments not approved by "the man," there's a letter in this week's New Yorker in response to that Michael Pollan article about psychedelics that I posted a while ago. The author wrote this: "As a former director of the White House Office of Drug Abuse Policy, I now feel a sense of shame at having failed to try to reverse the Nixon-Ford policy that placed most psychedelics on the DEA's Schedule 1 list, prohibiting their use. Congress would almost certainly have blocked this change, but had we been able to lift the ban on scientific research into medical applications, doctors would probably now have a far better understanding of brain function, and the unnecessary suffering of many terminally ill patients could have been alleviated."