CHfather

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."

Hoping for good results -- and good for you for pushing for the indo now. Fingers and toes crossed. If she has CH, the amitrip (Elavil) might help, but I'm afraid it's not likely. Here's a thread on that topic (that refers you to another thread) from a few years back: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1352170054/7

I think we've seen these results before, but maybe not in an official journal. http://www.docguide.com/initial-use-novel-noninvasive-vagus-nerve-stimulator-cluster-headache-treatment?tsid=5 (Full text of abstract below.) Two things that were of interest to me. One is that 7 of the people testing this were "refractory to drug treatment." It doesn't say in the abstract what the results were for those seven, but at a minimum three of them got some relief. (And I don't know whether "drug treatment" includes "oxygen treatment.") This might be something to recommend to folks who are refractory. (Of course, I'd go for busting first. It's so darn tragic to me how many people are suffering and suffering but don't/won't try busting.) Second, it says that prophylactic use resulted in fewer attacks. So I'm wondering whether this could be used as an additional preventive, even if not as a first-line alternative to oxygen. This is a case where I'd love to be able to read the whole article. Initial use of a novel noninvasive vagus nerve stimulator for cluster headache treatment; Nesbitt A, Marin J, Tompkins E, Ruttledge M, Goadsby P; Neurology (Feb 2015) OBJECTIVE To report our initial experience with a novel device, designed to provide portable, noninvasive, transcutaneous stimulation of the vagus nerve, both acutely and preventively, as a treatment for cluster headache. METHODS Patients with cluster headache (11 chronic, 8 episodic), from 2 centers, including 7 who were refractory to drug treatment, had sufficient data available for analysis in this open-label observational cohort study. The device, known as the gammaCore, was used acutely to treat individual attacks as well as to provide prevention. Patient-estimated efficacy data were collected by systematic inquiry during follow-up appointments up to a period of 52 weeks of continuous use. RESULTS Fifteen patients reported an overall improvement in their condition, with 4 reporting no change, providing a mean overall estimated improvement of 48%. Of all attacks treated, 47% were aborted within an average of 11 ± 1 minutes of commencing stimulation. Ten patients reduced their acute use of high-flow oxygen by 55% with 9 reducing triptan use by 48%. Prophylactic use of the device resulted in a substantial reduction in estimated mean attack frequency from 4.5/24 hours to 2.6/24 hours (p<0.0005) posttreatment. CONCLUSION These data suggest that noninvasive vagus nerve stimulation may be practical and effective as an acute and preventive treatment in chronic cluster headache. Further evaluation of this treatment using randomized sham-controlled trials is thus warranted. CLASSIFICATION OF EVIDENCE This study provides Class IV evidence that for patients with cluster headache, transcutaneous stimulation of the vagus nerve aborts acute attacks and reduces the frequency of attacks.

Yes, I heard that report on NPR also, and I thought it was very good. Depressing, though -- how much education is needed regarding so many invisible disabilities, even though you can bet that every one of those people who doesn't acknowledge invisible disabilities has a friend or relative who has one. I kept hoping that CH might get mentioned. In fact, the opening story sounded like it just might be someone with CH. Thanks for posting, alley.

I think of busting as using the substances that Jeebs refers to, to either end a cycle for someone with episodic CH or to achieve remission for someone with chronic CH, and then to prevent recurrences. To me, this is the primary meaning of "busting." But I guess I would also say that when those substances are used to abort individual attacks, through the SPUT method, that is also a form of busting. Which leads me to conclude that I think of busting overall as using those substances to deal with CH -- primarily by ending the pattern of attacks (chronic or episodic) and preventing recurrences, but also sometimes to abort individual attacks.

Wow. Terribly sorry to read this, em'. I'm certain that it is also torture for you to see this happening to her. They didn't try oxygen in the hospital? Or prednisone? I'm not the doctor, but gosh, why not, really, do the indo at the same time as the anti-depressant? Aren't we more interested in attacking her pain right now than following the scientific method? If her pain is reduced, couldn't we then stop one and see what happens? If the indo were going to work, it would work right away. It is a more direct attack on a possible condition (HC) than the indirect approach of the anti-depressant. Every once in a blue moon, we encounter someone who has been helped by some kind of anti-depressant, but that's very rare. I'm just blabbing my opinion here, and expressing my frustration. I hope whatever is done works great.

em', I tend to agree strongly with you, tangerine, and Pete -- looking for a different diagnosis seems very sensible. The good thing about indomethacin is that it's generally a simple test of CH vs HC (not 100% of the time, but often enough). There are a whole lot of "headache" conditions that might be looked into. Given her situation, I would think that a headache center would be a good idea.

Bob, you might have missed our very concerted effort last year to edit the Wikipedia entry about CH (to try to include some reference to psychedelics). They're very strict about their medical entries. In any event, I don't see what's new in that Wikipedia entry. In fact, the quote from what Ajax posted -- "may be the most painful condition known to medical science" -- is just a rephrasing of Goadsby's quotes from above.