CHfather

Good! I hope it helps. Doctors usually fax the prescription to a supplier (maybe they have a more modern method of sending them these days). This advice is from this file, where you might want to read, or re-read, the part about oxygen: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ "To avoid frustration, it might be wise for you to contact your O2 supplier before their first delivery to make sure you are getting the right equipment. Many of them are not used to providing for people with CH. You want cylinders (tanks), not a concentrator. At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank). Multiple versions of each tank are better. You need some kind of stand, at least for your larger tank(s). You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask. These are all things they should know to give you to treat CH, but often don’t. When the stuff is delivered, have the delivery person set it up for you and be sure it's working." Virtually all private insurance must eventually cover oxygen for CH -- but it often takes a protracted fight to get it. Medicare and other government programs generally do not cover O2 for CH, although there has been some consideration of waiver to that during the current crisis. See this post if that is relevant to you: https://clusterbusters.org/forums/topic/6975-urgent-request-regarding-oxygen-medicare/

Just as some general information, you can use the search bar at the top right of the page to see what others have said related to questions you might have. Occipital nerve block is often abbreviated as ONB, so I would think that if you put that in, or the whole phrase, you'll see some thoughts. My own thought on this (others might disagree) is that if you can get an O2 prescription and quick delivery, that's where you should start, along with jumping on the full D3 regimen at "loading dose" levels and maybe a prednisone taper. Pred will typically stop attacks for a few days, and sometimes will stop a cycle. My only qualification to these suggestions is that if you don't have CH, the oxygen very probably won't help, whereas it might be (I don't know) that the ONB would work for other conditions. Setting up a welding O2 system is pretty straightforward, and we can pretty much walk you through it in addition to the information in the ClusterBuster Files. I don't know whether "industrial gases" (the category that includes O2) are considered essential services and therefore open. I know that there are Airgas offices in MD just outside DC, and also in VA just on the other side of DC. You can get O2 there, if they're open. Then it's just a matter of buying a regulator and a mask online and connecting up your system.

I agree that it's hard to tell right now whether you have CH. But the anesthetic that is most typically used for dental work does set off severe CH attacks in many people who do have CH. Georgetown's Headache Center is supposed to be good -- but I suspect there's a long wait (if people are even seeing patients now). U of MD has something, too: https://www.umms.org/ummc/health-services/neurology/services/headache-migraine

So, those are all things that have been tested (some of them extensively) related to migraine, because there is a logic that says they should help. This is an odd quote from a journal article about three of your four ingredients: "The prophylactic properties of other agents such as magnesium, riboflavin, and coenzyme Q10 are low at best, but their lack of severe adverse effects makes them good alternative treatment options." Like Pebbles' said, this seems to be arguing (regarding migraine), "They probably won't help much, but they can't hurt much, either." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4359851/ Maybe in combination something good happens. I know we have had enthusiasts for each of these elements at different times at the board, and I think studies have shown that magnesium supplementation can be valuable for CH.

Sorry that I have no answer for this one, Vipul. Maybe D3? Or try busting . . . it probably wouldn't make things worse.

THMH, thanks! As a test, attaching and inserting Goadsby's journal article on CH treatments. Seems to be working!!!!! Peter J Goadsby, MD, PhD, DSc Headache Group, Department of Neurology, University of California, San Francisco, San Francisco CA Cluster Headache is a very severe form of primary headache with a population one-year prevalence of about 0.1 %. Classified as a Trigeminal Autonomic Cephalagia (TAC), it is probably the second most common form of primary headache encountered by neurologists or headache specialists. Cluster headache (CH) comes in two dominant forms, episodic CH, in which there are breaks of a month or more without therapy (80% of patients), and chronic CH in which such breaks are not seen (20% of patients) (1). The medical management of CH may be divided into the treatment of the acute attacks, and preventive treatment, aimed at suppressing attacks during a bout (2). Acute and preventive treatments are begun simultaneously at the onset of a cluster period. New surgical options and neurostimulation have supplanted destructive treatment approaches. (3) Due to the relative rarity of the condition much of the treatment of CH has evolved from clinical experience rather than from randomized controlled trials (RCT). The designation of ‘(RCT)’ indicates that a controlled trial was performed. Many uses cited above are off-license and prescribers are encouraged to examine the relevant information in this regard. Acute attack treatment CH attacks are typically short, from 30 to 180 minutes, and often peak rapidly; they thus require a treatment with quick onset. Medication overuse headache can be seen in CH patients, typically if they have a co-existent history or family history of migraine, and when largely ineffective treatments are employed for acute attacks, such as oral triptans, acetaminophen and opiate receptor agonist analgesics. Oxygen: Inhaled oxygen, 100% at 10-12 L/min for 15 minutes is an effective, safe treatment of acute cluster headache (RCT). Triptans: Sumatriptan 6 mg subcutaneous, sumatriptan 20mg intranasal, and zolmitriptan 5 mg intranasal are effective in the acute treatment of cluster headache (RCT). Three doses of zolmitriptan in twenty-four hours are acceptable. There is no evidence to support the use of oral triptans in CH. Dihydroergotamine 1mg IM is effective in the relief of acute attacks of CH. The intranasal form seems less effective, although some patients benefit from its use. Lidocaine: Topical lidocaine nasal drops may be used to treat acute attacks of CH. The patient lies supine with the head tilted backwards toward the floor at 30 degrees and turned to the side of the headache. A nasal dropper may be used and the dose (1 mL of 4% lidocaine) repeated once after 15 minutes. Preventive treatments The options for preventive treatment in CH are determined largely by the bout length not by the designation of episodic versus chronic CH. Preventives may be regarded as short-term, or long-term, based on how quickly they act and how long they can be safely used. Most experts would now favor verapamil as the first-line preventive treatment of choice, although for some patients with short bouts limited courses of oral corticosteroids or a greater occipital nerve injection may be more appropriate. These shorter term approaches can also be employed as transitional therapy as longer term preventive doses are being increased. In general terms monotherapy in cluster headache is preferred, acknowledging that some patients, preferably managed by physicians with experience, will require more than one preventive. Verapamil is more effective than placebo and compares favorably with lithium. Clinical practice clearly supports the need to use relatively high doses for CH, certainly higher than those used in cardiological indications. After obtaining a baseline EKG, start patients on 80 mg three times daily; thereafter the total daily dose is increased in increments of 80 mg every 10-14 days. An EKG is performed prior to each increment and at least ten days after the dose change. The dose is increased until the cluster attacks are suppressed, side effects intervene or the maximum dose of 960 mg daily is achieved. Side effects include constipation and leg swelling and gingival hyperplasia (patients must monitor dental hygiene closely). Corticosteroids in the form of prednisone 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach. It often stops the cluster period, and should be used no more than once a year to avoid aseptic necrosis. Lithium carbonate is mainly used in chronic CH because of its side effects, although it is sometimes employed in the episodic variety. The usual dose of lithium is 600 mg to 900 mg per day in divided doses. Lithium levels should be obtained within the first week and periodically thereafter with target serum levels of 0.4 to 0.8 mEq/L. Neurotoxic effects include tremor, lethargy, slurred speech, blurred vision, confusion, nystagmus, ataxia, extrapyramidal signs, and seizures. Concomitant use of sodium-depleting diuretics should be avoided, as they may result in high lithium levels and neurotoxicity. Long-term effects such as hypothyroidism and renal complications must be monitored in patients who use lithium for extended periods of time. Polymorphonuclear leukocytosis is a common reaction to lithium and is often mistaken for occult infection. Concomitant use with indomethacin can increase the lithium level. Topiramate is useful in the prevention of CH attacks. Typical doses are 100-200 mg daily, with the same adverse events as seen with its use in migraine. Melatonin may be helpful in CH as a preventive and there is one controlled trial demonstrating superiority to placebo. Doses of 9 mg daily are typically used. Other preventive agents include gabapentin (up to 3600 mg daily) and methysergide (3 to 12 mg daily). Methysergide is no longer easily available, and must always be used with breaks in therapy to avoid fibrotic complications. Divalproex is not effective (RCT). Greater occipital nerve injection: Injection of methylprednisolone (80 mg) with lidocaine into the area around the greater occipital nerve ipsilateral to the site of attack may result in remissions lasting from 5 to 73 days (RCT). This approach can be very helpful in shorter bouts and to provide a general reduction in burden in more prolonged bouts and in chronic CH. Surgical approaches: Modern surgical approaches to CH are dominated by deep brain stimulation in the region of the posterior hypothalamic grey matter and occipital nerve stimulation. In expert hands the results are excellent and appropriate referrals to expert centers are encouraged. There is no clear place for destructive procedures, such a trigeminal ganglion thermocoagulation or trigeminal sensory root section. Further reading 1. Lance JW, Goadsby PJ. Mechanism and Management of Headache. (7th ed.) New York: Elsevier, 2005. 2. Goadsby PJ, Cohen AS, Matharu MS. Trigeminal autonomic cephalalgias- diagnosis and treatment. Current Neurology and Neuroscience Reports 2007;7:117-125. 3. Goadsby PJ. Neurostimulation in primary headache syndromes. Expert Review in Neurotherapeutics 2007;7:1785-1789. American Headache Society • 19 Mantua Road, Mt. Royal, NJ, 08061 • 856.423.0043 • www.AmericanHeadacheSociety.org GoadsbyCluster.pdf

Tony, it looks to me like this is the same as the numbered items in the ClusterBuster Files. As far as I know, these particular documents haven't been updated since tommyd posted them. Now that THMH has made it possible for me to attach documents again, would you like me to copy the 13 entries from the CB Files into a Word document for you? (I think there's a small problem with including the outdated info, but I don't know what to do about that.) What I do is not half as much as you do.

Thanks for letting us know, j. If you do Imitrex again, keep in mind that you can split your injections to take less sumatriptan (which is still almost certain to stop your attack). You injectors are old enough that they might even be the kind that are much easier to take apart. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

Tony, maybe this is what you're looking for???? https://clusterbusters.org/forums/topic/681-1-the-clusterbuster-method-a-quick-rundown/?tab=comments#comment-8322 (Asking this question to anyone who happens to be reading this thread: This document contains this statement about tryptamines: "For aborting attacks, they rival oxygen in safety and effectiveness." This puzzles me. Is this true, but no one does it anymore except on rare occasions (maybe because of the five-day "shutting the door" principle/rule)? From the time I have been here (~10 years), I really don't recall anything being pushed about using them to abort, and they don't seem to effectively do that a lot of the time. Maybe as a SPUT?) Tony, IF this is what you are looking for, it's the first of the 13-part series provided by tommyd back in 2010. You can see all of them in the ClusterBuster Files section. A lot of them are out of date. If you are looking for a summary of busting to share, I think the document under the "New Users - Read Here First" banner at the top of each page is probably as good as we have.

Tony, do you mean the 2006 article by Sewell, Halpern, and Pope, "Response of Cluster Headache to Psilocybin and LSD"? If so, I have it. But I can't attach it here because I have apparently already used up my allotted attachment capacity. Tried to paste it, but the formatting all falls apart, as you can see below. Left in here in case you want to try to wade through the mess. If you PM me an email address, I can send it that way. (It used to be easily located at the main CB page, but that seems quite jumbled now.) Response of cluster headache to psilocybin and LSD Abstract—The authors interviewed 53 cluster headache patients who had used psilocybin or lysergic acid diethylamide (LSD) to treat their condition. Twenty-two of 26 psilocybin users reported that psilocybin aborted attacks; 25 of 48 psilocybin users and 7 of 8 LSD users reported cluster period termination; 18 of 19 psilocybin users and 4 of 5 LSD users reported remission period extension. Research on the effects of psilocybin and LSD on cluster headache may be warranted. NEUROLOGY 2006;66:1920–1922 R. Andrew Sewell, MD; John H. Halpern, MD; and Harrison G. Pope, Jr., MD Cluster headache, often considered the most painful of all types of headache,1 affects predominantly men (0.4% vs 0.08% of women) and typically begins after age 20 years. The disorder is categorized as either episodic, occurring for 1-week to 1-year periods, in- terspersed with pain-free remission periods, or chronic, in which the headaches occur constantly for more than a year with no remission longer than 1 month.2 Ten percent of episodic cluster headaches ultimately evolve into the chronic form, and these are termed secondary chronic. In standard descrip- tions of cluster headache, an attack refers to the actual paroxysm of pain, a cluster period refers to a period of time when attacks occur regularly, and a remission period refers to a prolonged attack-free in- terval.3 Oxygen and sumatriptan are the mainstays of acute abortive treatment, whereas verapamil, lith- ium, corticosteroids, and other neuromodulators can suppress attacks during cluster periods. No medica- tions are known to terminate cluster periods or ex- tend remission periods. The effects of the ergot alkaloid derivative lysergic acid diethylamide (LSD) and the related indolalkylamine psilocybin on cluster headache have not previously been described and may include such properties. Case series. We were contacted by a 34-year-old man, diag- nosed with episodic cluster headache at age 16 years, who re- ported a complete remission of his cluster periods when he repeatedly used LSD on a recreational basis between ages 22 and 24 years. Cluster periods resumed once he stopped. Based on this experience, he attempted to treat his cluster headache by ingest- ing psilocybin-containing mushrooms every 3 months and again achieved lasting remission. On three occasions when he missed his scheduled dose, a cluster period reoccurred. Intrigued by this history, we located—through cluster head- ache support groups and an Internet-based survey—several hun- dred people with cluster headache who reported use of psilocybin- containing mushrooms or LSD specifically to treat their disorder, and we administered a standardized questionnaire (available from the authors). The consent form and study were approved by the McLean Hospital institutional review board. We restricted our analysis to the 53 individuals who 1) agreed to be contacted for evaluation by telephone or e-mail and 2) met International Classi- fication of Headache Disorders-2 criteria for cluster headache and allowed us to obtain copies of medical records documenting a diagnosis of cluster headache by an MD or DO. If the medical records did not support the diagnosis, the subject was excluded from further analysis. The final sample included subjects from across the United States as well as Great Britain, The Nether- lands, and South Africa. We found no significant differences be- tween men and women on demographic indices or headache features (table 1). Notably, 31 (58%) of the 53 individuals reported that they had never used psilocybin or LSD except to treat their cluster headache, and a further 13 (25%) had used these drugs for recreational purposes only in the remote past during adolescence. Results are summarized in table 2 and listed in complete form in table E-1 (on the Neurology Web site at www.neurology.org). Of the 32 subjects with episodic cluster headache, 19 had used sub- lingual psilocybin during cluster attacks; 17 found psilocybin to be effective in aborting attacks (defined as ending the attack within 20 minutes). Only one subject had used sublingual LSD for an acute attack, reporting it to be effective. Twenty-nine subjects had used psilocybin prophylactically during a cluster period; 15 (52%) reported that it was effective (defined as causing total cessation of attacks), and a further 12 (41%) reported partial efficacy (defined as attacks decreasing in intensity or frequency but not ceasing). Five of six LSD users reported cluster period termination. Twenty subjects ingested psilocybin during a remission period; 19 re- ported an extension of their remission period, in that their next expected cluster period was delayed or prevented entirely. Four of five subjects reported similar remission extension with LSD. Of the 21 subjects with chronic cluster headache, 5 of 7 re- ported that psilocybin aborted a cluster attack; 10 of 20 reported that psilocybin induced a complete termination of cluster attacks; and a further 8 reported partial efficacy. Of two chronic cluster headache patients who ingested LSD, both at subhallucinogenic doses, one reported no attacks for 10 days, and the other reported none for 2 months. Interestingly, 22 (42%) of the 53 subjects reported partial or complete efficacy (as defined above) from sub- hallucinogenic doses of psilocybin or LSD. Discussion. Our results are interesting for three reasons. First, no other medication, to our knowl- edge, has been reported to terminate a cluster pe- riod. Second, unlike other ergot-based medications, which must be taken daily, a single dose of LSD was described as sufficient to induce remission of a clus- Additional material related to this article can be found on the Neurology Web site. Go to www.neurology.org and scroll down the Table of Con- tents for the June 27 issue to find the title link for this article. From the Biological Psychiatry Laboratory (J.H.H., H.G.P.) and Clinical Research Laboratory (R.A.S.), Alcohol and Drug Abuse Research Center, McLean Hospital/Harvard Medical School, Belmont, MA. Funding sources include MAPS of Sarasota, FL (J.H.H., H.G.P.), and NIDA, NIH T32-DA07252 (R.A.S.). No funding source had any role in study design; collection, analysis, or interpretation of data; writing the report; or submis- sion of the manuscript. Disclosure: The authors report no conflicts of interest. Received December 20, 2005. Accepted in final form March 10, 2006. Address correspondence and reprint requests to Dr. R. Andrew Sewell, Oaks Building, ADARC, McLean Hospital, 115 Mill St., Belmont, MA 02478; e-mail: asewell@mclean.harvard.edu 1920 Copyright © 2006 by AA Enterprises, Inc. Table 1 Cluster headache characteristics by sex and subtype Headache features Headache type n Age, y Episodic Attack duration, min Attacks/day at peak Cluster period duration, wk Remission period duration, wk Men 26 45 (8) 97 (66) 5.5 (3.7) 13 (10) 11 (10) Women 6 45 (11) 66 (34) 6.2 (3.0) 15 (10) 9 (5) Total 32 45 (8) 91 (60) 5.6 (3.5) 13 (10) 11 (9) 1° Chronic NA NA Men 6 48 (8) 79 (57) 9.8 (7.4) Women 1 38 (NA) 90 (NA) 8.0 (NA) Total 7 47 (8) 81 (53) 9.6 (6.8) 2° Chronic NA NA Men 10 45 (6) 105 (70) 6.9 (3.0) Women 4 46 (10) 139 (64) 7.5 (1.0) Total 14 45 (7) 115 (68) 7.1 (2.5) Data are presented as mean (SD). 1° = primary; 2° = secondary; NA = not applicable. ter period, and psilocybin rarely required more than three doses. Third, given the apparent efficacy of subhallucinogenic doses, these drugs might benefit cluster headache by a mechanism unrelated to their psychoactive effects. Table 2 Reported efficacy of principal reported treatments for cluster attacks, cluster periods, and remission extension Partially Several limitations of this study should be consid- ered. First, it is subject to recall bias, because it relies primarily on participants’ retrospective re- ports. However, 6 participants (11%) provided de- tailed headache diaries that corroborated their recall. In addition, 3 (6%) of the 53 participants tried psilocybin for the first time subsequent to consenting to participate in the study but before being ques- tioned; 2 reported complete efficacy and 1 reported partial efficacy—a prospective response rate consis- Medication Acute treatment Total, n Effective, n (%) effective, n (%) Ineffective, n (%) tent with our retrospective findings. A second consideration is the possibility of selec- tion bias, in that individuals with a good outcome Oxygen 47 24 (52) 19 (40) 4 (9) Triptans 45 33 (73) 8 (18) 4 (9) Psilocybin 26 22 (85) 0 (0) 4 (15) LSD 2 1 (50) 0 (0) 1 (50) Prophylactic Propanolol 22 0 (0) 2 (9) 20 (91) Lithium 20 1 (5) 8 (40) 11 (55) Amitriptyline 25 0 (0) 4 (16) 21 (84) Verapamil 38 2 (5) 22 (58) 14 (37) Prednisone 36 15 (45) 5 (14) 15 (42) Psilocybin 48 25 (52) 18 (37) 3 (6) LSD 8 7 (88) 0 (0) 1 (12) Remission extension Psilocybin 22 (31) 20 (91) NA 2 (9) LSD 5 (7) 4 (80) NA 1 (20) Nine additional individuals had taken psilocybin and two addi- tional had taken lysergic acid diethylamide (LSD) purposefully for remission extension but were not yet due for another cluster period at the time of our evaluation; hence, for them, efficacy could not be scored. may have been more likely to participate. Recruit- ment over the Internet also selects for younger, more educated, and more motivated subjects,4 likely lead- ing to increased reported efficacy. Third, participants were not blind to their treat- ment, raising the possibility of a placebo response. However, cluster headache is known to respond poorly to placebo; controlled trials have shown a placebo re- sponse of 0% to prophylactic medications such as vera- pamil,5 capsaicin,6 and melatonin,7 and less than 20% to abortive medications such as sumatriptan.8 There- fore, it seems unlikely that we would have found more than 50 cases of apparent response to psilocybin or LSD through placebo effects alone. Our observations must be regarded as prelimi- nary, in that they are unblinded, uncontrolled, and subject to additional limitations as described above. Therefore, our findings almost certainly overesti- mate the response of cluster headache to psilocybin and LSD and should not be misconstrued as an en- dorsement of the use of illegal substances for the self-treatment of cluster headache. However, given the high reported efficacy for this notoriously refrac- June (2 of 2) 2006 NEUROLOGY 66 1921 tory condition, it is difficult to dismiss this series of cases as entirely artifactual. Further research is warranted. Acknowledgment The authors thank Nancy K. Mello, PhD, and Kimberley Lindsey, PhD, for their comments on an earlier version of this manuscript, and Robert Wold, Earth and Fire Erowid, for assistance with data collection. References 1. Dodick DW, Rozen TD, Goadsby PJ, Silberstein SD. Cluster headache. Cephalalgia 2000;20:787–803. 2. Headache Classification Subcommittee of the International Headache Society. The International Classification of Headache Disorders. Cepha- lalgia 2004;24 (suppl 1):44–48. 3. Ekbom K. Some remarks on the terminology of cluster headache. Ceph- alalgia 1988;8:59–60. 4. Etter JF, Perneger TV. A comparison of cigarette smokers recruited through the Internet or by mail. Int J Epidemiol 2001;30:521–525. 5. Leone M, D’Amico D, Frediani F, et al. Verapamil in the prophylaxis of episodic cluster headache: a double-blind study versus placebo. Neurol- ogy 2000;54:1382–1385. 6. Marks DR, Rapoport A, Padla D, et al. A double-blind placebo-controlled trial of intranasal capsaicin for cluster headache. Cephalalgia 1993;13: 114–116. 7. Leone M, D’Amico D, Moschiano F, Fraschini F, Bussone G. Melatonin versus placebo in the prophylaxis of cluster headache: a double-blind pilot study with parallel groups. Cephalalgia 1996;16:494–496. 8. van Vliet JA, Bahra A, Martin V, et al. Intranasal sumatriptan in cluster headache: randomized placebo-controlled double-blind study. Neurology 2003;60:630–633. CME

I don't know a lot about methlypred, so I can only say that those dosages sound low, and I feel certain they're much too frequent. Here's what one expert says about dosage and use: "Corticosteroids in the form of prednisone 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach. It often stops the cluster period, and should be used no more than once a year to avoid aseptic necrosis." https://clusterbusters.org/wp-content/uploads/2014/03/GoadsbyClusterTreatment.pd I don't know of a medical O2 tank that is 2000 liters, but that's a big one (M size, I guess), which is good. I've written a bunch about O2 use at this file (same as I linked before), so maybe you can take a look there and see whether you have further questions. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ 10/15 lpm might be fine, or it might not be enough. Your mask might be fine (with some modifications), or you might want to try upgrading to the "Cluster O2 kit." Your breathing strategy might be fine, or you might want to try something different. All addressed in there. I'd also note (quoting from there): "Some people have observed that for some reason when the O2 level in their tank is “low,” the O2 doesn’t work as effectively for aborting, or might not work at all. “Low” in some cases can be as much as a third of a tank remaining. Something to be aware of." Batch has also posted data about how it can take a while at first for O2 use to become fully effective, so that might be a "normal" O2 issue you're having. Another tip for using O2 that might or might not be in there is to look down toward your feet as you use it. Don't ask me . . . but many people find that it helps. With a proper system and techniques, you ought to be getting aborts in less than 10 minutes. Also in that doc are some things people can do when they don't have O2. There are a bunch of them, with caffeine or energy drinks/shots the most common. Also, Benadryl, melatonin, "brain freeze," and some other possibilities. I just don't know what you want to do with the baby in there. I really don't know why the Maxalt and Cambia have those CH exceptions so prominently stated. One of these days I might look into that. You can also look things up using the search bar at the top right each page. Just a good thing to know about.

My gosh, that's a whole lot of powerful stuff you're taking. You have a headache doctor who specializes in working with pregnant women, so I am very reluctant to overstate anything. And you don't say how often you are using the various abortives and possible preventives, so I can only tell you some things we might say to someone on those meds. 1. Most people with CH don't need 6mg of sumatriptan to stop an attack. 2mg is usually enough; I would say that for sure 3mg is enough 90-plus percent of the time. There are ways to get to 2 or 3mg. One is to take apart the 6mg injector. doses. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Others are to use the 3 or 4mg injector for migraine, whose name I always forget, or to get vials and syringes prescribed and measure your own. The less of this you take, the better off you are (more on this below). 2. Here's what the Mayo Clinic says about rizatriptan (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 think some people have had relief from CH with this drug, but it isn't first line. 3. Here's what a neutral website says about Cambia: "Cambia is used to treat a migraine headache attacks, with or without aura, in adults 18 years of age and older. It is not used to prevent migraine headaches. Do not use Cambia to treat a cluster headache." https://www.drugs.com/cambia.html I guess I'd at least want to ask the doc about this and the Maxalt. 4. Depending on how often you are using them, you seem to be taking a whole lot of triptans (including the pills), and (again, depending on how often you are using them) it wouldn't be surprising to me if you're having more and worse attacks from triptan overuse. 5. If you're having any kind of overuse condition -- plus: two cycles of steroids (methylpred) in how long? one a year is recommended -- that could help explain why the O2 isn't working. 6. It would be good to know more about your O2 setup. There are other possible explanations for it working/not working. What size and number tanks of O2 do you have? How high does your regulator go? Are you sure you have a non-rebreather mask? 7. You should very seriously consider Batch's vitamin d3 regimen, which has helped hundreds. With regard to helping people with the regimen, his generosity is exceptional. I'm sure he will have considered its application with women who are pregnant. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people 8. I'd suggest you might look over this file. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ 9. For all practical purposes, I don't see a real preventive in your list of meds. (Typically, that would be something like verapamil.) Your doctor might see some of what you are taking as preventives, and there might be reasons not to prescribe other ones. The d3 regimen is a very effective preventive, but it takes time to reach full effectiveness.

If you put the word reishi into the search bar at the top right of any page, I believe you'll find some experiences, including a woman who said she had found relief from her CH with reishi mushrooms. I don't know what there is about lion's mane, but I remember a guy who kept trying new things and would often have success followed by disappointment. I think he took lion's mane during one of those experimental periods.

We're sorry that you have to be here, but glad that you are here!

Batch is the fellow you're thinking of. It's a shortened version of his last name. So glad you've found good docs and are getting good relief. (Technically, you aren't chronic until you have attacks for a year with only a short period without attacks during that time.) You might find some useful ideas in this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

This file will give you an overview of how CH is treated. It includes a brief description of the busting protocol (the same description of busting that is under the blue banner on each page, "New Users ..."). https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ As Vipul says, oxygen and the D3 regimen are things you should be doing. There are other things described in that file that might also help you (Benadryl, caffeine, higher doses of melatonin, "brain freeze"). Most of us here are not persuaded that microdosing is an effective way to treat CH -- you probably have to get to some threshold dose for it to be effective. I don't think that the Mirtazipine is likely to have brought on your attacks, but others might have a more informed opinion about that. Some antidepressants will block the effects of busting, but I don't know about Mirtazipine. It might not seem much like a happy birthday, but I can say that finding this site with its generous and helpful people is a happy thing for you in the longer run.

I think it would be good for you to read this file. Some things you can do right now (start D3 regimen, for sure); others might need prescription. You might have to fight with a doctor for oxygen, even though it is the #1 recommended abortive. Be ready. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Splitting injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Or, ask for a prescription for vials and syringes so you can measure out your own dose. There's a lot of caffeine in energy shots (the smaller things like 5-Hour Energy). Not as much in the standard bigger drinks (RedBull). You would probably do fine just brewing some coffee and keeping it in the fridge.

FWIW, I know of a person with CH who has resolved all major attacks through busting, but, like you, has mild to intense shadow pain every day. No question that what he has is CH, not migraine.

Batch is the man for D. He is emphatic about his preference: >>The most significant change occurred in July of 2018 with the switch from the oil-based liquid softgel vitamin D3 formulations to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3. Several of us found it faster acting with a higher bioequivalence in elevating serum 25(OH)D3 than the same dose of the oil-based liquid softgel vitamin D3 formulations. << More here: https://clusterbusters.org/forums/topic/6807-new-to-this-forum-–-cast-iron-until-hit-by-ch/?tab=comments#comment-67520

This recommended doctor list is old, and there's nothing specifically listed for Dayton, but you could check in the Ohio section: https://clusterbusters.org/wp-content/uploads/2014/10/OUCH-DOCS-US-07-22-14-NC-OR.pdf I know THE Ohio State University has a headache clinic.

I guess we kind of knew this, but it's still sad to me to see it confirmed. https://www.docguide.com/phase-3-randomized-placebo-controlled-study-galcanezumab-patients-chronic-cluster-headache-results-3?tsid=5 Phase 3 randomized, placebo-controlled study of galcanezumab in patients with chronic cluster headache: Results from 3-month double-blind treatment; Dodick D, Goadsby P, Lucas C, Jensen R, Bardos J, Martinez J, Zhou C, Aurora S, Yang J, Conley R, Oakes T; Cephalalgia 333102420905321 (Feb 2020) OBJECTIVE To report efficacy and safety of galcanezumab in adults with chronic cluster headache. BACKGROUND Galcanezumab is a humanized monoclonal antibody that binds to calcitonin gene-related peptide and inhibits its biological activity. METHODS This study comprised a prospective baseline period, a 12-week double-blind, placebo-controlled treatment period, and a 52-week open-label period. Up to six protocol-specified concomitant preventive medications were allowed if patients were on a stable dose for 2 months prior to the prospective baseline period. Patients were randomized 1:1 to monthly subcutaneous galcanezumab (300 mg) or placebo. The primary endpoint was overall mean change from baseline in weekly attack frequency with galcanezumab compared to placebo. Key secondary endpoints were ≥50% response rate and percentage of patients meeting sustained response. Results from the double-blind treatment period are reported. RESULTS A total of 237 patients were randomized and treated (120 placebo; 117 galcanezumab). At baseline, the mean age was 45 years and 63% were using ≥1 preventive drug. The primary endpoint was not met; mean change in weekly attack frequency was -4.6 placebo versus -5.4 galcanezumab ( p  = 0.334). Key secondary endpoints also were not met. Injection site-related treatment-emergent adverse events were more common in the galcanezumab than the placebo group, with significantly more injection site erythema. CONCLUSION Treatment with galcanezumab 300 mg did not achieve its primary and key secondary endpoints. This study underscores the potential distinct biology of cCH as well as the significant unmet need for safe, effective, and well-tolerated preventive treatment. The safety profile of galcanezumab in cCH is consistent with that observed in trials of episodic CH and migraine.

Lenny, were you able to buy this reg straight from the company, with no prescription or other authorization?

Good for you for making it happen, Luis!! At 15 lpm, the E tank has about 45 minutes worth of O2. Closer to 35 minutes, realistically. So now might be a good time to try to get a bigger tank, or more E tanks.

Luis, You might want to look over the discussion of oxygen here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The guy in this youtube video does a good demonstration of a standard breathing strategy, starting at 3:18. http:// https://www.youtube.com/watch?v=PtFHRIQN17s&t=127s Your mask will not look like his (he is using the one that is made particularly for people with CH), but yours should have a bag on it that fills as you are breathing out and empties as you breathe in. Many people with CH find that it helps them stop the attack faster if they quickly drink some caffeine or an "energy shot" such as 5-Hour Energy as they are starting on the O2.