CHfather

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.

Goadsby: “probably the worst pain that humans experience” Goadsby, Peter. Interviewed on Health Report. Radio National. Transcript at http://www.abc.net.au/radionational/programs/healthreport/cluster-headaches/3568262#transcript Also Goadsby, in a medical journal (with a co-author): "It is an excruciating syndrome and is probably one of the most painful conditions known to mankind." http://pn.bmj.com/content/1/1/42 Also Goadsby, also with a co-author, also in medical journal: "Few, if any, medical disorders are more painful than cluster headache." http://www.bmj.com/content/344/bmj.e2407

Whooli, I'm so glad you're getting relief. I remember when you first came here. I'm am so sorry that we didn't mention HC and indo back then!!!

There are several folks here who use, or have used, ketamine. Their situation was similar to yours -- tried everything -- and their results, as I remember, have been similarly positive. I'm pretty sure one of them will respond. I'll just say what I "know." There was an excellent presentation about ket at the 2013 conference. Here are two things I remember, which I might be wrong about (but don't think I am): (1) the stuff gets kind of addictive, psychologically if not physically, and it can be hard to manage that; (2) a "holiday" from ket is strongly recommended (I don't remember how regularly--every six months, maybe?), and that period can be rough. Of course, ket has shown very strong effectiveness as an anti-depressant, which doesn't hurt. (Brief article about that here -- http://www.webmd.com/depression/news/20140923/ketamine-depression. A new and very effective anti-depressant that will come onto the market in a year or two has the same anti-depressant mechanism as ket, without the side effects. Some of us hope this might also work for CH. Info about that, if you're interested, here: http://www.nimh.nih.gov/news/science-news/2013/ketamine-cousin-rapidly-lifts-depression-without-side-effects.shtml.)

Fab, here's a link to the page: http://www.thesun.co.uk/sol/homepage/woman/health/health/6335377/Ten-illnesses-so-bad-they-scare-doctors.html However, I can't see it without joining (free for one month), so maybe you could copy it and paste it here. Or not.

A topic we've discussed here from time to time. You see the part where they say that some CH is responsive to indomethacin, and also the warning at the end that responsiveness to indomethacin is not a great diagnostic criterion for what type of headache someone has. I suppose I'm cautioned to be a little more careful when this subject comes up. http://link.springer.com/article/10.1007%2Fs11910-014-0516-y

Any experience with spontaneously combusting drummers?

http://www.docguide.com/sleep-cluster-headache-beyond-temporal-rapid-eye-movement-relationship?tsid=5 BACKGROUND AND PURPOSE Cluster headache (CH) is a primary headache disorder characterized by severe attacks of unilateral pain following a chronobiological pattern. There is a close connection with sleep as most attacks occur during sleep. Hypothalamic involvement and a particular association with rapid eye movement (REM) sleep have been suggested. Sleep in a large, well-characterized population of CH patients was investigated. METHODS Polysomnography (PSG) was performed on two nights in 40 CH patients during active bout and one night in 25 age, sex and body mass index matched controls in hospital. Macrostructure and other features of sleep were analyzed and related to phenotype. Clinical headache characterization was obtained by semi-structured interview. RESULTS Ninety-nine nights of PSG were analyzed. Findings included a reduced percentage of REM sleep (17.3% vs. 23.0%, P = 0.0037), longer REM latency (2.0 vs. 1.2 h, P = 0.0012) and fewer arousals (7.34 vs. 14.1, P = 0.003) in CH patients. There was no difference in prevalence of sleep apnea between patients (38%) and matched controls (32%, P = 0.64) although the apnea index in patients was numerically higher (mean apnea-hypopnea index 10.75 vs. 4.93). No temporal association between nocturnal attacks (n = 45) and particular sleep stages was observed. CONCLUSIONS To date, this is the largest study of sleep in CH. It is demonstrated that REM sleep is affected which is in line with our current understanding of CH and hypothalamic involvement in the regulation of this sleep stage. Further, fewer arousals were found in CH patients but no association between apnea events or specific sleep stages. The findings support a central role of the hypothalamus and arousal systems in CH.

http://www.newyorker.com/magazine/2015/02/09/trip-treatment?mbid=social_twitter

Bob, Google Translate does an adequate job of translating into most languages. It certainly would be understandable, or at least would only require minor modifications (so no one has to sit there translating the whole thing). We have had some people here who speak Spanish. If no one volunteers, I could use my rudimentary Spanish skills along with Google Translate to create what I'm pretty sure would be a workable translation.

John has been a tireless advocate. If you've been to a conference, you've met him. He's a regular at Headache on the Hill. He used to post a lot here, but he's more involved at Facebook now, and dealing with a lot of challenges. You can endorse him for a WEGO Award here: https://awards.wegohealth.com/nominees/1441

I have no idea what prolactin might have to do with CH, but I remembered this study, in which prolactin was one of three things studied in relation to CH. http://www.docguide.com/hypothalamic-dopaminergic-stimulation-cluster-headache?tsid=5 Maybe it might have some relevance to your neuro. There's also this information, from a thread that I also do not understand: >>cluster headache has been a documented SYMPTOM of prolactinoma<< https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1392933260/1 Note that the poster is not right about bromocriptine being the same as BOL-148. This "information" might all be useless. If so, I apologize for wasting your time.

It's also not in his professional interest to talk about having a potentially debilitating condition, as opposed to saying that with verap or whatever he's taking he's "just fine." Tough to get hired for a demanding movie schedule if people are afraid there will be times/days when you can't show up or won't be at your best.

Gosh, I'm sorry to read that. I've reached the limit of my puny O2 expertise. Maybe someone with more wisdom and experience will have a suggestion. I know that some people drink an energy shot or energy drink after they've aborted an attack with O2, and say that helps keep the next ones from coming on. (Many, or most, do the energy shot/drink at the beginning of using the oxygen, to speed up the abort, but, as I say, some do it at the end for preventive purposes.)

You're far from the first person who has faced this problem, nss'. I don't know whether anyone here has successfully dealt with it. If there's anything useful to tell you, someone here will do so, but you might also ask over at www.clusterheadaches.com, where there are a whole lot more sumatriptan users. Just two additional thoughts: There's no reason at all for you doctor to think after a month and a half that you're going from episodic to chronic -- and that happening would bear no relationship to not having trex injections. That's just crazy talk. (If anything, there are more than a few people who attribute becoming chronic to over-reliance on trex.) For future reference, many people extend the life of their injections using the method described here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1361807077.

So glad you're past that dark point now. Would you mind telling us more about your oxygen setup? Rebound headaches are very rare from O2. You want a non-rebreather mask and a flow rate of at least 15 lpm. For most people, if they stay on the O2 for a while after knocking out the present attack, it also tends to prevent subsequent ones. O2 is such a good friend of so many with CH, it would be good if you could find a way to make it work for you.

you want to talk to "Batch," the guy who knows this stuff inside-out. check your PMs (top left of the page, where it says "you have X new messages.") i'm sending you his email address. if he doesn't reply quickly -- which he almost certainly will -- let us know.

From Batch: >>CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free and then had this test have had an average 25(OH)D serum concentration of 81.4 ng/mL. (203.5 nmol/L), min = 34.0 ng/mL, max = 149.0 ng/mL.<< That's a pretty big range, and it appears that you're very near the top of it. This calculator says you're right that 350=140: https://chronicillnessrecovery.org/calc/index.php So, I'd go with spiny's advice to drop it back to 5kIU, but stay on top of it.

Fascinating! Would it be cool or what if this explained things! BTW, didg, congratulations on having achieved God Member status!