CHfather

As jon' says, what you choose is what you choose, but many of the people who have benefited from busting have been in that premier league of sufferers. The idea that "meds are the only viable option" for you is both silly and true. Psilocybin, LSD, and LSA used to treat CH are "meds" in the same way that what you are taking are meds -- except that psilo etc. in effect have none of the side effects that you are very reasonably concerned about. Psilo will be an official "med" within a few years, you can bet on it. The D3 regimen, which is supplements but not "meds," has helped people who are in that same premier league as you, and who are actually chronic as opposed to be said by their doctors to be chronic. Overall, I think you are putting much too much reliance on things your doctor says and beliefs that you have adopted. As jon' says (or suggests), your doctor is letting you kill yourself with triptans, and overuse of triptans is shown to make attacks worse and cycles longer. I think you might be in a situation where what you think is helping you is actually making things worse, causing you to then use more of it and continue the cycle. This also doesn't make sense, at least to my way of thinking. Chronic is chronic. If you have time off from attacks, you're not chronic. It doesn't really matter for treatment purposes (except, for example, that lithium is usually recommended to be prescribed only to chronic patients because the rebound attacks if you stop taking it are so severe). Prednisolone is what prednisone is metabolized to by the liver. The dosage and duration you're taking of prednisolone are essentially the same as they would be with prednisone, and the effects seem to be about the same. Prednisolone is generally more expense. It's primarily the caffeine in RedBull that seems to be beneficial for aborting or reducing a CH attack. Many people use sugar-free versions of energy drinks with good effects. But if RedBull increases the severity of your attacks, then it's clearly not for you. (It's very unusual for that to happen.) I have to wonder whether your O2 system is optimized. Do you have a flow rate of up to 25 litres per minute? Are you using an effective mask? (at the least, a non-rebreather mask, but better would be the mask specifically designed for people with CH). Is it O2 from a cylinder or tank (not from a "concentrator")? Are you breathing deep, holding, and then expelling all the air you can from your lungs? Fully effective O2 is the key to better treatment of your condition, in my opinion. Sandomigran is indeed a somewhat effective preventive, but it's low on the list of recommended prescriptions because of the side effects. You probably arrived at all this by trying a lot of things that didn't work, so, again, if it's what you choose, it's what you choose, and we can all hope that the dike will hold for you. I'll say again that if you can get your O2 working better, you'll have the option to consider alternatives to this and all those (other) triptans you are using, and I think that might be a good thing.

I'm sorry the Indomethacin didn't work for you. Regarding SIBO, all I can say is yikes, and if that also happened to you, I'm sorry to hear that, too. https://www.ncbi.nlm.nih.gov/pubmed/28770351

Well, I don't know what your high standards would call for regarding melatonin, but here's report of a randomized placebo-controlled study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5012937/: "In a randomized placebo-controlled trial consisting predominantly of episodic cluster headache patients (18/20 with episodic, 2/20 with chronic), melatonin 10 mg orally, when introduced early in a cluster period, i.e. 2nd to 10th day, was superior to placebo at decreasing cluster attack frequency." Some other references in there as well. No adverse side effects reported. Worth trying? Up to you. Regarding the D3 . . . more or less what Denny said. Do it; don't do it; up to you.

Yes, although there can be an initial loading period when the D3 amounts are much higher. The other assorted vitamins/minerals are important. You are correct. No formal control group, placebo, etc. The anecdotal evidence from more than a hundred users is, however, extremely compelling, and what research there is is very nicely done. Maybe this file might be worth reading in that regard (or maybe not). https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

When the great tommyd created the first Clusterbuster Files entries back in 2010, he wrote that there was an "ongoing debate" about whether the taurine has an effect, or whether it's just the caffeine that is impacting the attacks (or shadows). I don't think that debate has been resolved, since some people get good results from caffeine alone, and I'm pretty sure that the V-8 energy drinks that some people prefer don't have taurine in them. Some people even think it's the niacin in those drinks that helps, more than the taurine. So if by "just a taurine supplement" you mean taurine alone, without caffeine, I suspect -- but can't say for sure -- that it would be ineffective. I know that some people have taken taurine pills and caffeine pills, but don't ask me why, or how helpful it was. (I'm guessing that the reason that the Red Bull doesn't make you shaky is that the 8 oz. version has roughly the same amount of caffeine as a cup of coffee, about 80mg. A 5-Hour Energy shot has 215mg of caffeine!)

Scott -- Sorry that's happening and really unable to answer you main question. I did want to mention that when oxygen level in a tank gets lower, it can become ineffective unless you increase the flow rate (or change to a new tank). Just thinking that might be a reason why your O2 isn't helping you right now. Hope it might help.

B'T', I will recommend that you look this over. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It has some links (such as to the D3 regimen) and some ideas about things you can do (such as energy shots and Benadryl) while you're acquiring what you need -- oxygen being, indeed, as kat' said. foremost among those things. The basic info about busting is also there (same as what you would see under the blue "New Users ..." banner at the top of each page). The new medication, Emgality, has helped some people, so when you get a doctor appointment, you might ask to try that. Regarding doctors, most here have found that doctors at headache centers are much better at prescribing that other doctors, including general neurologists.

M-60 takes a 540 regulator. It's a fairly big tank, weighing more than 20 pounds empty (an E weighs about 7 pounds empty).

Short answer to your question is probably not, since it's pretty much a myth that turkey is full of tryptophan. There's just as much in chicken or beef, and more in nuts and cheeses. However, tryptophan is much studied in relationship to CH, in part because tryptophan levels are higher than normal with people who have CH. You can find lots of studies by googling [tryptophan cluster headache]. Here's a recent one: https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-016-0620-2 Most of them are way too complex for me. For some reason (I think because tryptophan affects serotonin), back in the day people took tryptophan pills or tryptophan precursor pills to try to prevent CH attacks. From what I have read about that, they had no real effect. Turkey wasn't listed in the "Triggers" document in the Files section here, or in the follow-up posts. All that doesn't mean you're not onto something. It could be that turkey affects you in that way, but also, maybe there's something you typically eat when you have turkey that is affecting you. For example, stuffing mix might have a lot of MSG in it, or fried onions (as many people put on "festive" dishes) can be full of MSG, as can the chicken broth or soups that some people use at special times of the year. MSG is a trigger for many. Or it might be one of the other food triggers listed in that post. (Small related personal story. I suffered really brutal attacks of pancreatitis with no recognized cause. They would come, stay for anywhere from a day to several weeks, and then go away. That went on for many years. One night I got an attack after having eaten some very bland Chinese food. I realized it wasn't spicy food . . . and that's when I could track back over the course of all those years to see that it was MSG that had been causing those attacks. Very unusual, but not unheard-of. The worst part for me was that after the first really bad attack, the doctor gave me the wise advice to go on a diet of clear liquids. So I ate canned chicken soup, and every time I did, I got an awful attack. Many canned chicken soups, like the ones I was eating, are full of MSG.) So keep looking.

nate, No time like the present to get things lined up and in gear. D3 regimen, oxygen, etc. Busting (see blue "New Users" banner).

ddove, of course, as FT says, you'd be a lot better off with oxygen as an abortive, but at least please consider splitting your sumatriptan injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

Yep. Glad to see that about the DHE! I've read people here talking about good results from DHE infusions, but know nothing about that.

I've seen a few saying 75mg 3/day (225/day total) would be the high dose.

Hoping you are getting closer to success, Siegfried. I have wondered why Indo, but not other anti-inflammatories, is the best treatment for hemicranias. Found this today, which partly resolves my curiosity about that: "Indomethacin is one of the cyclooxygenase 1 inhibitors with the highest penetration rate in the blood-brain barrier.1 Indomethacin, but not other NSAIDs (ie, naproxen and ibuprofen), was found to inhibit nitrous oxide-dependent vasodilation. Other medications that could be considered for HC include topiramate, lamotrigine, naproxen, lithium, onabotulinumtoxinA, and melatonin." It's from a good recent article with good additional references: https://www.clinicalpainadvisor.com/home/topics/migraine-headache/hemicrania-continua-diagnosis-and-treatment/ (Melatonin is frequently mentioned in the literature as having a structure very similar to Indomethacin.)

@EyecePick, thanks for letting us know. I sure hope this helps you. Same to you @Siegfried. I would add that while it is indeed very unusual for headache to respond to both triptans and indomethacin, it might not be completely unheard of. Table 1 here shows that a small percentage of people with PH did respond to triptans, at least to some extent: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5519518/ Can't say that those people also responded to Indocin, but the fact that some hemicrania patients responded to sumatriptan as an abortive, and one achieved full relief, at least seems to mean that it's not impossible. And there is this one reported case of a woman who was thought to have CH and sumatriptan injections stopped her attacks within 15 minutes, but then it was realized that she had CPH and Indocin virtually eliminated her pain. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2170242/ With all the complexities of diagnosis and treatment in this area, I'm disinclined to hold to any absolutes.

Just a small thought about this. As tank pressure levels get lower (as you have used more of the O2 in the tank), there comes a point for many people when O2 loses its effectiveness. Our solution has been to switch to a new tank, but turning up the lpm rate on your regulator, if you're able to do that, can also have a positive effect.

This isn't Jilly from Philly, is it (a member from long ago)? That's a horrible prescription you got. Gabapentin might help, but it's not a first-line prescription and most people feel crummy from taking it (and 1800mg is a lot). Sumatriptan pills basically don't help, and the verapamil is too low, as BOF said. Prednisone taper would have made sense to cut the pain for a while. And your doctor has not been looking very hard for a medical O2 provider -- there are plenty of them in Philly and as auto' said, they have to supply you if you have a prescription. As auto' said, google [medical oxygen Philadelphia] and start calling. Welding O2 is a possibility, but you shouldn't need it. There must be some suppliers that are familiar with CH, but when you call, tell them what you need -- tanks/cylinders, not a "concentrator"; a big tank ("M" or "H" tank) for home and at least one small tank (E tank) for portability; a regulator that goes up to at least 15 liters per minute (you need one for each type of tank because the regulators are different for big tanks and small tanks); and a non-rebreather mask. The prescription should have specified a flow rate for the regulator(s) and the non-rebreather mask, but I don't have enough confidence in this doctor to believe s/he did it right. You should start the D3 regimen right away -- and either find a better doctor or educate the one you have. Quite a bit of info here, including a link to the D3 regimen: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

I agree with you that hope is always low-key, but I will hope along with you. In what I have read about Indomethacin, recommended dosing is all over the place in terms of both quantity and duration. Do you mind saying how much you're taking? You're taking it along with something to protect the stomach lining (a proton pump inhibitor or something else), I imagine. Have you looked at octreotide as an abortive? I've seen it listed many places as an alternative when triptans aren't working, but I don't think I've seen anyone here who actually has used it. But then again, maybe it'll turn out that you do have CPH. (Also reminding you again about the D3 regimen.) Fingers and toes crossed for you.

Thank you for taking the time to post this. It seems like folks in Florida often have challenges with getting O2 (even when it has been prescribed). This is a big help.

I'm so very sorry to read all this EyecePick. You know your way around all this, so forgive me for this suggestion, but if oxygen properly administered doesn't work, and sumatriptan barely works, and other CH treatments also don't work, is it possible that you have hemicrania continua? I'm sure you know this, but hemicranias look like CH, but typically don't respond to CH treatments, but do respond to the drug Indomethacin. I would only ask in addition whether you've tried the D3 regimen. Grabbing at straws in the hope that something might be found for lasting help.

Inhibits absorption of CGRP. https://www.emgality.com/what-is-emgality/how-it-works People with CH take higher doses than people with migraines.

I only have about 25 questions about this research, but it's new and it's substantive, so here it is. https://www.docguide.com/safety-and-efficacy-sphenopalatine-ganglion-stimulation-chronic-cluster-headache-double-blind-random?tsid=5 Safety and efficacy of sphenopalatine ganglion stimulation for chronic cluster headache: a double-blind, randomised controlled trial; Goadsby P, Sahai-Srivastava S, Kezirian E, Calhoun A, Matthews D, McAllister P, Costantino P, Friedman D, Zuniga J, Mechtler L, Popat S, Rezai A, Dodick D; Lancet Neurology 18 (12), 1081-1090 (Dec 2019) BACKGROUND Chronic cluster headache is the most disabling form of cluster headache. The mainstay of treatment is attack prevention, but the available management options have little efficacy and are associated with substantial side-effects. In this study, we aimed to assess the safety and efficacy of sphenopalatine ganglion stimulation for treatment of chronic cluster headache. METHODS We did a randomised, sham-controlled, parallel group, double-blind, safety and efficacy study at 21 headache centres in the USA. We recruited patients aged 22 years or older with chronic cluster headache, who reported a minimum of four cluster headache attacks per week that were unsuccessfully controlled by preventive treatments. Participants were randomly assigned (1:1) via an online adaptive randomisation procedure to either stimulation of the sphenopalatine ganglion or a sham control that delivered a cutaneous electrical stimulation. Patients and the clinical evaluator and surgeon were masked to group assignment. The primary efficacy endpoint, which was analysed with weighted generalised estimated equation logistic regression models, was the difference between groups in the proportion of stimulation-treated ipsilateral cluster attacks for which relief from pain was achieved 15 min after the start of stimulation without the use of acute drugs before that timepoint. Efficacy analyses were done in all patients who were implanted with a device and provided data for at least one treated attack during the 4-week experimental phase. Safety was assessed in all patients undergoing an implantation procedure up to the end of the open-label phase of the study, which followed the experimental phase. This trial is registered with ClinicalTrials.gov, number NCT02168764. FINDINGS Between July 9, 2014, and Feb 14, 2017, 93 patients were enrolled and randomly assigned, 45 to the sphenopalatine ganglion stimulation group and 48 to the control group. 36 patients in the sphenopalatine ganglion stimulation group and 40 in the control group had at least one attack during the experimental phase and were included in efficacy analyses. The proportion of attacks for which pain relief was experienced at 15 min was 62·46% (95% CI 49·15-74·12) in the sphenopalatine ganglion stimulation group versus 38·87% (28·60-50·25) in the control group (odds ratio 2·62 [95% CI 1·28-5·34]; p=0·008). Nine serious adverse events were reported by the end of the open-label phase. Three of these serious adverse events were related to the implantation procedure (aspiration during intubation, nausea and vomiting, and venous injury or compromise). A fourth serious adverse event was an infection that was attributed to both the stimulation device and the implantation procedure. The other five serious adverse events were unrelated. There were no unanticipated serious adverse events. INTERPRETATION Sphenopalatine ganglion stimulation seems efficacious and is well tolerated, and potentially offers an alternative approach to the treatment of chronic cluster headache. Further research is need to clarify its place in clinical practice.

Hope the no headache today is a good sign -- and thank for posting. Getting a solid perspective on how valuable Emgality might be seems important.

You can stop despairing, Emmalou. The target nmol/L is around 200. In some places, including the US, it's measured in ng/mL, and with that measurement, the target is around 80. At 86 nmol/L, you are right about where most people start.

Thank you for keeping us informed, DeYo'.