ThatHurtsMyHead Posted March 3, 2020 Share Posted March 3, 2020 All, Just wanted to post a quick note that the main clusterbusters.org website is currently down. I'm told there's an incompatibility due to an upgrade our Host just performed. They're in the process of making the required updates to our website and it should be up soon. Anyone with a direct link to the form isn't affected. Anyone that uses the clusterbusters.org website to get here, won't be able to get to the main site. I'll post additional info here as available. Cheers, J Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted March 3, 2020 Author Share Posted March 3, 2020 All, I just heard from the people that manage the main website. I'm told it could be several days to get it back up. Unsure what the challenge is, but I asked them to change the main CB.org default page to be the message board here for the time being. That way people can still get to us. Hoping to hear back quickly. Cheers, J Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted March 5, 2020 Author Share Posted March 5, 2020 All, The website is back online. There were some challenges getting the old website to work with the changes the host made to the infrastructure. The decision was made to go ahead and post the new site that was in the works. Some of the links are work in progress, so if there's something you need just ask here. I'm sure someone has a copy or can get you what you're looking for. Cheers, J 1 Quote Link to comment Share on other sites More sharing options...
Tony Only Posted March 29, 2020 Share Posted March 29, 2020 Is "Psilocybin and LSD in the treatment of cluster headache" (the busting section) anywhere available to read ? Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 29, 2020 Share Posted March 29, 2020 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 1 Quote Link to comment Share on other sites More sharing options...
Tony Only Posted March 29, 2020 Share Posted March 29, 2020 Thank you CHfather. I am actually looking for "Busting - The Clusterbuster Method" section that used to be here: http://clusterbusters.com/?page_id=26 For some reason it was in my bookmarks by the name of "Psilocybin and LSD in the treatment of cluster headache" Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 29, 2020 Share Posted March 29, 2020 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. Quote Link to comment Share on other sites More sharing options...
Tony Only Posted March 30, 2020 Share Posted March 30, 2020 I'll attach a picture of a section of the website I was looking for. I think it's pretty much the same as the 13 parts in the forums ? Maybe somebody knows better, I thought maybe the website version was more up to date or it had additional content to it. I had been translating it to finnish very slowly over the years and it's far from done. I'll do my best to advice everyone register here and ask any questions they might have. Playing Well Together is asked about most at the moment (from me). I have heard of aborting attacks with different tryptamines mysef but don't have personal experience and know little about this subject. I think many that do this do not repeat or manage to repeat it (maybe due to "shutting the door") unless they use tiny amounts (as in SPUTs). Just yesterday I read here that "According to other reports (1, 2, 3), inhaled DMT can abort an attack in as little as 3-5 seconds." I think reports like that should make researchers jump right into this one. Thank you again CHfather (and for all that you do!) Here's my attachment: https://drive.google.com/file/d/1hiSrF4Oygu3aczlY2NT7lfP5VwlWR1GY/view?usp=sharing Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted March 30, 2020 Author Share Posted March 30, 2020 CHF, I'll look into your posting issues and see if I can fix. : ) I think they still have some fixes to make to the main site to get all the content back. Cheers, J Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted March 30, 2020 Author Share Posted March 30, 2020 CHF, I just made some changes, see if you can attach now? I doubled the attachment size limit. I'm thinking about enabling HTML, but for security related issues (spammers, hackers etc), I have to leave it off. I can though, create a new Advanced / More Advanced group. ha ha. and enable HTML there. Let me do some research, as I think enabling HTML will greatly enhance the regular posters experience on the board. Cheers, J Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted March 30, 2020 Author Share Posted March 30, 2020 CHF, I'm doing some other admin stuff this morning, so went ahead and built the new group while everything was in my head. I removed most of the site restrictions on content and put you in it. Please let me know if you can post etc easier now. If so.. I'm thinking about moving everyone with 1,000 - maybe 500 (?) posts to the new group and setup an automatic promotion. I'll want to get the mods thoughts before I enable it for others. But anyway. Please let me know if it's better. You should be able to paste in HTML and also attachments can be much larger. Cheers, J Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 30, 2020 Share Posted March 30, 2020 (edited) 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.) 5 hours ago, Tony Only said: Thank you again CHfather (and for all that you do!) What I do is not half as much as you do. Edited March 30, 2020 by CHfather Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 30, 2020 Share Posted March 30, 2020 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 Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted March 30, 2020 Author Share Posted March 30, 2020 Attach success!!! : ) J Quote Link to comment Share on other sites More sharing options...
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