CHfather

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'.

I can't say whether you have CH or not (as you note, you have some typical characteristics such as the regularity of the attacks and their location and nature, but not all of the physical symptoms), but here are a few answers to your questions. Amitryptiline (Elavil) is sometimes used to treat CH. In a 2015 study, the results were like yours -- pain reduction but not complete elimination. It might have been prescribed to you also because of the stress in your life that you mention. It's not a first-line treatment for CH, but it's not completely unusual. As you say, 15mg is a pretty low dose. You can start the D3 regimen without the blood test. Measuring D levels in the blood is part of a standard bloodwork panel, so it might show up in the tests your doctor ordered. I'm going to bet that Batch will be here soon enough to show you the simplified version of the regimen, or someone else will (or I will when I have more time). The most important abortive treatment for CH is oxygen. Between the D3 regimen and O2 -- and busting, if you choose to try that -- it's very likely that you can avoid being on any substantial medications for the rest of your life, as you fear. You should also have something, most typically injectable sumatriptan, for breakout pain if you experience that. Verapamil might help you as a preventive (D3 is better for most people, and healthier), but it takes a while (a week to 10 days, maybe) to take effect, and usually the initial dosages aren't high enough to be fully effective. I'd urge you to look over this file and pursue the links to get a pretty full sense of the treatment landscape, including the basics of busting: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

As preparation for the big reveal, folks might want to put the word parasite into the search bar at the top of the page. The post-reveal follow-up assignment will be "Compare and contrast …."

Here's a link to the JAMA article about high-flow O2: https://jamanetwork.com/journals/jama/fullarticle/185035

This is from the American Headache Society, 2018, regarding Indomethacin for hemicrania: >>>Indomethacin (Indocin) is a medication that fights inflammation, similar to ibuprofen or naproxen, but indomethacin is unique in that it is the only medication that functions as a key in the lock to stop HC. Usually indomethacin is started at a low dose, such as 25 mg, taken 3 times per day with meals. The dose is then increased until the head pain is relieved. Doses can sometimes reach 75 mg 3 times per day or more before the pain is fully blocked. When taking this medication, stomach protection against ulcers and bleeding is generally required. Proton pump inhibitors, such as omeprazole or lansoprazole, or H2 receptor antagonists, such as ranitidine or famotidine, can provide such protection. Most people tolerate indomethacin, particularly in lower doses. Unfortunately, others are unable to tolerate indomethacin at all, or in the doses needed to relieve their pain.<<< https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf I'm not saying you should be taking it or shouldn't; just that this seems to be what's needed to give it a reasonable test (and possibly tolerate it).

Gosh, it's sickening to read this over and over, year after year. First of all, he can prescribe it whether or not you can get your insurance to cover it. You do have the option of paying out of pocket. Secondly, sometimes insurance coverage is a breeze, and sometimes it can be a battle. My belief is that most doctors -- including most neurologists -- don't know how to write a prescription for O2 for CH, or they have no patients with high-flow oxygen and don't know what to expect, so they make up excuses for not prescribing it. The only alternative explanations are that that they either have no idea about the suffering of CH and/or don't give a crap about it and/or think it's fine to damage you physically and financially with Trex instead. In any event, you can try to pursue the prescription, or you can set up a system with welding O2, as discussed in the file I linked you to. I'm a person who has a lot of curiosity about Indomethacin. If it's not too much to ask, how much were you prescribed? And would you please check back in to report on whether it's helping you? You know, I imagine, that Indomethacin is not typically prescribed for CH (because it almost never helps CH), but for conditions that look like CH but aren't. It's hard on the gut, so it should be taken along with something to protect the stomach lining (Prevacid, Prilosec, that kind of thing). It's sometimes prescribed early in treatment to either rule out those other conditions (hemicranias) or rule them in. I'm usually an advocate for Indomethacin, but I gotta say you sure sound like you have CH.

You can inject it in your abdomen if you have a little fat there to grab (I'd be happy to loan you some). But as jon' says, it's a short needle -- the autoinjector goes in only about a quarter of an inch. However, if you use the method described here for splitting doses -- https://clusterbusters.org/forums/topic/2446-extending-imitrex/ -- you'll be injecting by hand, and you'll probably be better able to pick the spot where you want to inject. Virtually no one needs 6mg; most people only need 2 or maybe 3. (Again, as jon' says, getting it prescribed in vials so you can more easily measure out your own doses is a nice way of doing it.) Are you doing all the sensible stuff that makes it so your need for Trex will be rare? Oxygen, D3, etc? Considering busting? This file might be helpful for an overview: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

So, here's the first line of a long page of pharmaceutical information about Maxalt: "Rizatriptan is used to treat acute migraine headaches in adults and children 6 years of age and older. It is not used to prevent migraine headaches and is not used for cluster headaches." I can't think of an injectable preventive (as you mention) that is typically used for CH, except for the new drug Emgality. Sumatriptan (Imitrex) is an injectable abortive. Verapamil is not likely to have any significant effect after a week (it takes time to get into your system), particularly at that very low dosage. With your relatively short cycle, I would think that a course of corticosteroids (prednisone, usually) would be the best way to handle it for now. In the long run, D3 and oxygen (and perhaps other things, including busting) will be the best preventive and abortive strategies. I would urge you to read this post and the related links in the post so you have a better sense of standard treatments and other options, including busting: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It's a little puzzling to me that your experience seems to have been that energy shots and melatonin have possibly made it worse. A small percentage of people have reported here that one or another of them seemed to make their attacks worse, so it's not impossible at all that they both would have that effect for you. Like I say, it's just a little puzzling to me. Edited to add: Just saw BOF's latest post. The information at the blue banner, about busting, is reproduced verbatim at the post I linked you to, so you can read it there.

D'K, What you are saying is not sensible. There is no one person here who has some kind of huge following that could produce the results you say you want. You post what you have learned, one person at a time tries it (or doesn't), they report on the results, and that either inspires others or doesn't. Why would you not want to help just one person, if that's all you reached? And very few people here have the clout with a doctor to get an off-brand prescription. This site was created because one person tried an alternative treatment that probably 95% of people with CH ridiculed and/or attacked. He put it out there, and some other people tried it, and it worked for them as it had for him. They really did have to "BELIEVE," to use your word, because it involved obtaining and consuming illegal, hallucinogenic substances. Whatever you have to offer has much better odds of being tried and adopted than that did, if it works. So, I say with no real disrespect, you either have to put up or shut up. That's how it works here. I doubt that anyone is going to beg you.

You can get overnight delivery on a non-rebreather mask from Amazon, I'm sure. But that's a lot of $ for one day's use. You can get masks without a prescription, so maybe you could find one at a medical supply store. Some people have had success with O2-related things by asking at places that carry O2, so it's possible that a nearby firehouse, EMT station, hospital, walk-in clinic, etc., might give you one or sell you one. They probably pay about two bucks or less for them, so it's not a big deal if they're willing. I feel like I've read that some people in a pinch have actually sucked O2 from tubing attached to a regulator, without a mask. I'm not recommending that, but maybe someone will chime in. You'd need to get tubing that attaches to your regulator, of course. You should be splitting your injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Don't know if you need it but more about O2 here https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ and in here https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

You can start by trying to get an O2 prescription from a doctor and then having it filled by an oxygen supply company, or you can set up a system using welding oxygen. If the first route is straightforward and affordable, it's probably the sensible way to go (if you have a competent doctor who will prescribe O2; and if you have insurance to pay for the doctor visit and the O2, or you can pay out of pocket for those things), but welding is simpler and ultimately no more expensive, particularly since you are probably going to pay for a higher-lpm regulator even if you get one from the medical O2 supplier. Welding O2 is discussed here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ There's a lot about O2 here, plus some things aside from O2 that might help you until you get O2: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

That's a nice story. Glad it worked out. There are several threads here about Emgality. You can find them by typing emgality into the search bar at the top right of any page. Mixed results, but it's good to see that you got the right prescription (three injections). We will all look forward to hearing from you how it works for you.

You're keeping this cure a secret, or are you going to tell us what it is? I can guarantee you that you will be met with great skepticism, but the only way to test it beyond yourself is to describe it and see if anyone tries it with the same success you had.

Well, the original report, from authors at Harvard Medical School (at least that's where Halpern was, I don't know about Pope, and Sewall was either at Harvard or Yale then), was here: https://www.ncbi.nlm.nih.gov/pubmed/16801660. You could certainly argue that Yale would not mess with research into psilo and CH without a sound basis, and Yale Medical School is now leading a clinical trial into the effects of psilo on CH. https://clinicaltrials.gov/ct2/show/NCT02981173

Andrew, Please read the post I linked you to. You can fight with your insurance company for O2 and perhaps win -- many have -- or you can get a prescription and pay out of pocket for the O2 without insurance, or you can do as many do and set up a system using welding oxygen. This study, from 10 years ago, met all the criteria for a medical test (randomized, double-blind, placebo-controlled) and showed the effectiveness of O2 for CH: https://jamanetwork.com/journals/jama/fullarticle/185035 Every medical resource about treatment of CH lists O2 as the #1 abortive, along with injected triptans. In short, your insurance company is full of shit. One way or another, YOU NEED O2. IT WILL CHANGE YOUR LIFE. If you read the previous post I linked you to, you'll see that you can split Imitrex injections (if injections are what you have) and get full relief from much smaller doses. I don't know why prednisone stops attacks while you're taking it but doesn't end cycles, but that is the common experience. If you're saying you weren't in cycle until after you took the pred, I also have no explanation for that. Often it's used as a bridge to give verapamil time to get into your system. Usually it's administered for more than the few days you mention. D3. O2. Compensatory strategies as discussed in that other post (e.g., energy shots; melatonin; Benadryl). You need to take control. Not easy to do when you're suffering, but it's what is needed.

Thanks, Andrew, and welcome. Verapamil is not nearly enough, and probably not even the best preventive when compared to the D3 regimen. Please be sure to read this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It includes the info that's at the blue "Read This First Banner," along with a bunch of other stuff, some of which might be useful to you.

For sure, you're doing O2 all wrong (thanks in large part to your astonishingly misinformed doctor). The idea is that you want to fill your lungs with O2 as quickly as possible , hold it in for a couple of moments, exhale as much as you can, and immediately fill them again, hold, exhale fully, repeat. In order to do that you need a flow rate that fills your the bag on your mask quickly when you start and that makes sure the bag is full as soon as you exhale, ready for you to inhale. 8 lpm won't do that for most people. So you need a different regulator, which your O2 supplier should provide (just as the O2 supplier should have provided the mask, for heaven's sake). You can buy your own regulator, but you have to be sure you're getting one that fits your tanks (different size tanks take different types of regulators). In a different post I think you said your tank was "tall and skinny." How tall? I wish I knew how to insert an image here, so I could just ask you what your regulator looks like. I would have guessed that you didn't actually have a tank, but a concentrator, a machine that makes O2 from room air, but I feel pretty sure you have mentioned a tank. There's a lot of info that might help you in this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It includes a link to info about the D3 regimen. I'd urge you to read that post and get back to us.

start with a big exhale, so your lungs are as receptive to your first inhale of o2 as possible.

FWIW, methylprednisolone is only slightly stronger than prednisone, about a 5/4 ratio. Otherwise, it's the same thing. So depending on the dosage, you might not be taking any more corticosteroid, or the same, or less than if you were prescribed plain old prednisone. There was a time when there was some research on injections of methylprednisolone for CH, and that seemed to help, but the general conclusion was that it reduced attacks but wouldn't break a cycle in most cases. As the previous posters have said, a doctor that doesn't prescribe O2 just doesn't seem like a CH expert. I hope you're doing the D3 regimen and taking steps to get O2.

nick, I don't know whether there's anyone from Scotland here. I think I vaguely remember a woman from Scotland at the Facebook page that is called "Cluster Headaches (Trigeminal Autonomic Cephalagia)." There are some people here who are active at that FB page who might be able to tell you more. I remember the name of the person I'm thinking of as something like Ainslie Course. You should also look up the website for OUCH-UK. It's my understanding that they can be very helpful, particularly for obtaining oxygen. [I see jon' just posted about that.]

Big', welcome to the forum. You might get some direct replies to your question, but you might also get a broader sense of experiences and opinions by typing ketamine into the search bar at the top right side of any page. Are you doing the D3 regimen that has helped hundreds in big ways? https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people Considered busting? (click on blue banner at the top of the page)

Given your descriptions, you might consider looking at hemicrania continua (HC) as a possibility, which would involve finding out whether the drug Indomethacin takes the pain away. https://www.ninds.nih.gov/Disorders/All-Disorders/Hemicrania-Continua-Information-Page It doesn't sound like you have used the standard CH abortives, oxygen and triptans. If you did try oxygen properly and/or triptans (Imitrex; sumatriptan; etc.) in a proper form (nasal spray or injection), and they didn't work, that would strongly support an HC diagnosis. Some people with CH have pretty constant pain in the form of "shadows," but I think that's pretty rare, even in people with chronic CH. That verapamil didn't address your pain doesn't say much either, unless you took it in strong-enough doses over a long-enough period of time. Prednisone usually at least stops CH pain for a while, but not always. So that med history doesn't really tell us much, but it does again lend itself toward at least checking into HC.