CHfather

The question here, as I understand it, was what medical conditions tend to occur simultaneously with CH and migraine, and which are more typical of CH. The answer (full text of the abstract is below): >>>>>Chronic sinusitis (p = 0.001), malignancy (p = 0.012), diabetes mellitus (p = 0.021), glaucoma (p = 0.038), as well as another primary headache disorders were more frequently present in patients with cluster headache (p = 0.001), than in migraine patients. In the multivariate analysis, chronic sinusitis (OR = 7.6, p = 0.001) and diabetes mellitus (OR = 4.2, p = 0.035), adjusted by gender, age and duration of headache, are more frequently associated with CH than with migraine. Comorbid disorders in CH patients were frequent and similar to those noticed in migraine patients, except chronic sinusitis and diabetes mellitus.<<<<< Batch was kind enough to inform me about this study in a reply to my first-ever post over at ch.com, and I will tell you what he had to say about it: >>>>>The interesting thing about the comorbid disorders we've noted with respect to the anti-inflammatory regimen is they all have the potential to lower arterial pH. The sinusitis reported by Zidverc–Trajkovi JJ et al. is also of interest as it may be an indication of an inflammatory reaction that could easily encompass the sphenopalatine ganglion and possibly spread to the trigeminal ganglion as the two nerve bundles are directly connected to each other by a branch of the trigeminal nerve. What all this points out to me, is that as cluster headache sufferers, we need to make sure a more holistic approach is taken in treating our disorder to include looking at other comorbid disorders that can easily prevent CH medications from working effectively. In short, unless the comorbid disorders are treated at the same time, it's entirely possible the medications prescribed for our CH will not have the desired therapeutic effect.<<<<< In part, he's trying to sort this out in relationship to his D3/O-3/CC-based regimen, which (along with the lemonade) is partly aimed (as I understand it) at lowering arterial pH. His post is at http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1299970139/7#7 Comorbidities in cluster headache and migraine 2011, N° 1 (Vol. 111/1) p.50-55 Jasna J. Zidverc-Trajkovic, Tatjana D. Pekmezovic, Ana L. Sundic,Aleksandra P. Radojicic1 and Nadezda M. Sternic Headache Center, Institute of Neurology and Institute of Epidemiology Clinical Center of Serbia, Faculty of Medicine,University of Belgrade, Belgrade, Serbia Abstract: The aim of this study was to investigate the most frequent comorbid diseases occurring in patients with cluster headache (CH) and, for comparison, in migraine patients. Over a period of eight years 130 patients with CH and 982 patients with migraine were diagnosed according to ICHD-II criteria. In all patients the presence and type of different diseases were assessed from medical records and coded by the ICD, X revision. Odds ratios (OR) with corresponding 95% confidence intervals (95%CI) were calculated by logistic regression analyses. Comorbid disorders were present in 56.9% patients with CH and in 56.7% migraine patients. Chronic sinusitis (p = 0.001), malignancy (p = 0.012), diabetes mellitus (p = 0.021), glaucoma (p = 0.038), as well as another primary headache disorders were more frequently present in patients with cluster headache (p = 0.001), than in migraine patients. In the multivariate analysis, chronic sinusitis (OR = 7.6, p = 0.001) and diabetes mellitus (OR = 4.2, p = 0.035), adjusted by gender, age and duration of headache, are more frequently associated with CH than with migraine. Comorbid disorders in CH patients were frequent and similar to those noticed in migraine patients, except chronic sinusitis and diabetes mellitus. http://www.actaneurologica.be/acta/article.asp?id=15021〈=en&mod=Acta

The url for that D3 thread at ch.com is http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/50

Yury, I don't think this question has been fully answered yet . . . but it seems like you can try it without detoxing. The thread over at ch.com is long and winding, but clearly there are folks having success with D3 while using some conventional CH meds, such as verapamil. What levels of D3, O-3, and calcium citrate are you planning to take?

There's a little more information, including this >>>It's unclear what the underlying mechanism may be, says Dr. Hakim, but it's unlikely to involve any direct anti-inflammatory action. "An apparently more plausible hypothesis may be related to vitamin K," he suggests, "which seems to exert biologically relevant actions on dendritic and neuronal metabolism."<<< at http://www.medbioworld.com/news.php?topic=0&article=20110422clin010.xml This is of course follow-up to an earlier "accidental" observation about warfarin for CH and a small follow-up study: http://www.ouch-us.org/medications/warfarin.htm

Jl, what you're suggesting here is the same as what many uninformed people think about the use of psychedelics to treat CH -- that somehow you "trip" and that makes you unaware of the pain (or something). This article previously posted by shocked presents a different picture about MDMA and PTSD: http://www.oprah.com/health/PTSD-and-MDMA-Therapy-Medical-Uses-of-Ecstasy/8 I'm not loving the tone of this thread, and I'm not surprised that you might be feeling kind of defensive, and of course you're right that "PTSD is no cluster headaches" . . . and at the same time, maybe there's something for all of us to learn from this. This tangent is mine . . . You write,  I've said here, and 1961mom has said more eloquently, that something a lot like PTSD is probably very common among people who suffer from CH. I don't see how it couldn't be, and of course what makes it so much worse is that while maybe "typical" PTSD arises from past incidents that can be assumed not to be highly likely to happen again, CH is all too fecking likely to happen again. So I suspect that most conventional forms of PTSD therapy (like the one described in that article) will not help CH sufferers much. But if something helps my daughter and you and the folks here and elsewhere to cope with what I see as the many PTSD-like challenges of living with CH, I'm all for learning more and assuming less.

Thank you, wb, for this post. All information is helpful. I'm just curious about whether you dosed at all during this cycle. Doesn't sound like it, but I wanted to be sure. I am not a superstitious guy, but I do fear the fecking jinx, so I won't say anything more.

yury, my daughter was once prescribed clonazepam for her CH, so i did some looking into it. i don't claim to be an expert, but here's what i found. in a couple of very small, quite old studies, clonazepam was considered an effective treatment for cluster headaches (in one case, combined with lithium). http://www.ncbi.nlm.nih.gov/pubmed/1104361 http://www.ncbi.nlm.nih.gov/pubmed/10498239 but today, from what i have read, it's only an "exceptional" treatment in limited circumstances, for example: http://www.ncbi.nlm.nih.gov/pubmed/18563291 it's more effective for trigeminal neuralgia. it's an anticonvulsant/sedative,anti-anxiety drug, so, yes, it might "calm you down." some people with CH have taken it for sleeping problems, but i've never seen anyone say it helped their CH. it's not listed at all in the european standards for treatment/"prevention" of CH, at least as i read those standards: http://www.guidelines.gov/content.aspx?id=10471 as mystina said, and as is reinforced in the wikipedia page she linked to, abruptly quitting clonazepam can lead to nasty withdrawal symptoms.

Scott, not sure if you're asking me . . . and not sure I know the answer. From what I've read at the ch.com thread, people experiment with D3 dosages between about 15000IU and about 7000IU, depending on their tolerance and also the perceived effectiveness. So, you're at the lower end there, but not far from the 10000IU that seems to be the norm. The calcium that's recommended there is "calcium citrate." Don't know whether that's the same as what you're taking, though it is apparently often formulated with magnesium and zinc (and some added D3). In one of his posts at ch.com, the popularizer of this regimen, Batch, says this: >>>I had originally attributed several week long CH remissions to a buffering regimen of calcium citrate tablets that also contained vitamin D3, magnesium and zinc washed down with homemade lemonade... However, upon review of my logs I found there were two more factors that came into play during three of these remissions. The first was increasing the dose of the calcium citrate tablets up from three to four/day. The other was two of the week-long CH remissions occurred while I wasn't taking the calcium citrate tablets but I was taking the Omega 3 Fish Oil while spending a good bit of time outside in direct sunlight wearing shorts and tank top working in the yard. I connected the dots last October while I was here in Bremerton, Washington working on the house. I realized that the CH remissions I'd attributed to the calcium citrate and citric acid buffer were more than likely due to the increased level of vitamin D3 from sunlight so I stopped by Costco and picked up a bottle of 2,000I.U. softgel capsules and started dosing at 10,000I.U. a day along with three of the 1000mg Omega 3 Fish Oil softgel capsules. . . . <<<< Here's a link to that post, or the general vicinity of it; it's reply #37 on this page: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/25 In several other places in that thread, Batch also says that he attributes the effectiveness to the D3/fish oil (or even just the D3 itself). So I'm not sure what the citrate adds -- but I suppose there's no reason not to take it. He also talks in that thread about lemonade/margaritas (!) as a regular strategy to change his pH. Looking forward to hearing how this works for you -- hope it's great!!! Oxygen will be very good, too: That I know.

Thanks!

Kaboom, do you mind talking specifically about what you're doing with the D3? I'm trying to put together one of my "summaries" as a reference for others, but the testing is all over the map. It seems particularly important for this site to know how it's being done while busting, and how it is (or at least seems to be) working. (And also, okay, my daughter's cycle is probably imminent, and I want to be able to give her my best advice when (if) it hits. So a personal thank-you to you, in addition to whatever can be compiled for the larger audience.) So . . . You're taking two 5IU D3s a day, I figure -- are you taking them with food (that's recommended)? How much O3 fish oil? And the "etc" -- is that the recommended 2 calcium citrate tablets with magnesium, zinc, and additional D3? Are you doing anything else, like the lemonade-drinking, to shift from acid to alkaline? Are you doing any of the self-testing for acidity that Batch describes at the ch.com thread? Thank you! Jerry

Kika, I think your fears are completely rational, and your preparation is admirable, and that your fears will prove to be unjustified. As I have mentioned, you can start with a relatively low dose (say, 20 seeds) which is virtually guaranteed to have no psychedelic effect. As I recall, you are out of cycle now. I wonder (others, please chime in) whether you might want to test such a low dose now, when you are still out of cycle. That would give you the advantage of learning something about the effects without "wasting" a low dose and the subsequent five-day waiting period while you are in cycle.

DG, did he stop as a test, or because in some way he didn't like them? Seems like a sound, not-risky regimen (and possible long-term preventive), maybe at slightly lower levels, regardless of whether one's in cycle or not. (I've been taking lower levels of those things and I think I feel better for it, and I've encouraged my daughter to take higher--but not highest--levels in case there's a long-term beneficial effect.)

Dan, I once appeared on a highly-rated TV quiz show, on which I came in a distant second out of three contestants. Between the time the show was taped and the time it aired (a few months), all I could remember was how stupid some of my answers were, and I increasingly dreaded the broadcast. When it finally came on, I wasn't much dumber than most people who don't win on that show -- and nobody cared anyway. My friends were still my friends (maybe a little impressed that I had qualified and appeared, but they had known that for a long time). My main concern was not to humiliate my daughter, and I appear to have avoided that. I expected that at least some folks in the smallish town where I lived then would acknowledge that they had seen me on the show, but not a single person did. Maybe they felt sorry for me and didn't want to rub it in, but more likely they either didn't see it or didn't connect me with that person. Since in your case the producers have no incentive to make you look bad, my advice is not to worry. I wouldn't be surprised if it opens up a whole career in modeling for you. And we all are grateful!

I suspect this was more of a subtle pun/joke than a serious question -- though I like that you give serious answers. The more common version begins "Hey Ward, a little . . . etc."

Gosh, I'm one of those guys who might cut the handle off the toothbrush so I could lift it more easily. Bless you! And thanks again for your generous presence here.

Like everyone says, dosage is a highly individualized thing, also affected by the quality and freshness of the seeds. I'm no expert. My thought would be that 50 is definitely too few to buy (if that's what you're asking about--you might take 4-5 doses at an average of maybe 40 or more per dose), and maybe a bit too many for a first dose (if that's what you're asking about). Re the first dose, I'd ask that at your other thread.

Thanks, Lt2--and thanks also for the licorice root/taurine idea, which makes good sense (and, yes, Les did say the LR could be used as an abortive). For whatever it might be worth, there's a portable backpack-based oxygen system on p24 here: http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final.pdf

my daughter volunteered today that she might come. of course, she's the ch person in the family, so i guess that means she'd be bringing her dad.

plenty of golf, including some nice ones very nearby. no trysting tree or ocean dunes (or bandon dunes), but nice enough. of course, the way things are going it might still be snowing then. i'd be happy to arrange some day-before or day-after golf, if there's interest.Â

Kika, more has been written at Len Genser's licorice root thread since I created this summary, but I don't think the basics have changed, so for what it might be worth: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 If the idea is appealing to you, then you could read through the thread, or the last 20 or so posts. I wouldn't disregard the D3 either, given the success stories. Although the thread at ch.com is long, complicatedly ADD-unfriendly, and imprecise, the rudiments are extremely simple. Since I want to summarize them for my own purposes at some point, if you want me to I'll create a summary of that one for you. Just let me know. But it's basically give or take 10,000 international units of D3 (depending on tolerance and efficacy), taken with food. The "author" of that treatment, Batch, also mentions 1-3 thousand mg of Omega3 fish oil and some calcium citrate tablets containing magnesium and D3, but some people are doing well on just the D3, and it's my impression that Batch is agreeing that while the others are nice and probably beneficial, it's the D3 that really matters.Â

Lt2, I really appreciate your clear and thorough updates, which are really important for those of us facing decisions about ways to deal with CH. Thank you. I recall that in a post you were critical of those who say "oxygen, oxygen"; and I am clearly one of those people. So, with some trepidation, I'm wondering why you choose not to use it. No judgment whatsoever -- you're clearly capable of making that decision for yourself. I just figure it might make me a little smarter to know about your choice. Or maybe it just doesn't work for you? Thanks, if you choose to reply.

We (my daughter and I) chose RC for three reasons. First, I had read Dr. Sewell's poster about HBWR, and then checked with him about comparable effectiveness of RC, and the evidence that it would probably work seemed pretty compelling. Second, we understood the likelihood of psychedelic effects to be much less than with acid or shrooms. Third, we figured that if RC was a lower-effectiveness busting product, she could always step up to the others later. We chose RC over HBWR because the preparation was extremely simple (HBWR is not), and also because we figured the possible "dud" seeds in 40 or 50 or 60 seeds would compromise the treatment less than one possible dud HWBR seed out of a dosage of 2 or 3. We did have access to reliable sources of both psilo and LSD, so that wasn't an issue. She started with 10 seeds just to see what the effects would be (nausea; tripping; etc.). No effects, of course -- and, really, a busting opportunity wasted, since we then had to wait five days. She subsequently took 30, and one off-schedule, long, severe post-dose hit suggested that it was having an effect. Her symptoms lessened after that post-dose k8-9 doozy, and after 2 more doses of increasing numbers (50, then 60), she was PF. (She drank the sludge, too.) (She also started using RedBull and O2 for the first time during that cycle, and that combination aborted any HAs very quickly.) She never experienced anything but a relaxed feeling, leading to sound sleep, post-dose. She had virtually never taken any of the standard CH meds (somehow just endured two 10-week cycles a year for many years), which might have led to a "clearer" system and more receptivity to the LSA. With all that said, if we were starting again I might be strongly tempted to encourage her to try D3 and licorice root before trying LSA (those apparently-sometimes/somewhat-effective treatments weren't popularized last year). Les Genser says the licorice root is out of your system in a day or two, so you can bust quickly if it's not working, and I haven't seen any evidence that the D3 obstructs busting. So I'm thinking why not go there first? The D3 seems like it might have some long-term preventive effect as well, and so one can just take a sizable amount every day and see what happens.

Thanks for your kind mention, 61mom, and so glad to read of your success. Love your borrowed quote! Although I don't live there any more, my daughter and I enjoyed our happiest years living in Oregon. I'd move back to PDX in a second if it were feasible.

Whenever I've used Jstor it's been possible to email things to myself.

My last words on this subject: (a) then don't tell them; and/or ( find a doctor who is not an imbecile. I guess my only hope is that some day you're going to do this. And my great sadness is that then you'll wonder why you waited so long. Been there, seen that.