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Showing content with the highest reputation since 03/26/2020 in all areas

  1. 3 points
  2. 2 points
    Thank you all so much - I am actually FIVE days cluster free!!!!! After having these for so long, I know to be cautiously optimistic but I am celebrating for now... Thank you again for all of the help and guidance and I am so glad to have connected with this group to know how to better fight this battle. Just so grateful!
  3. 2 points
    All, I have to brag a little here. I've been planning for 2 years to remodel my master bathroom and get rid of that old (never used) bidet (pronounced biday). I've decided that when I finally do remodel, that Bidet is staying.... All the TP hoarders can choke on their rooms full of TP. I'll be nice and clean without it. ha ha. Though I still don't really know how you're supposed to use it. I'm sure there's a video on youtube. ha ha Love to all, Cheers, J
  4. 2 points
    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.
  5. 2 points
    I will also point out that this area is a community, no, a family. Family has differing views, opposed perspectives and divergent talents. Family also loves, supports and looks out for each other. I may not like what you are saying but I will defend you right to say it (unless I know it is harmful). Bringing up topics that are in our face and impacts us all is what family does. It’s ok to offer opinion because that is what we do everyday. Each person who knows what a thread is about has the option of not clicking on it. We all need time off of certain topics when the stress mounts. Just like we will all need a break from those in quarantine with us when this is over. Keep you distance family members
  6. 2 points
    Hey all, I will jump completely Off Topic and just say how much I appreciate everyone of you. There has always been a few individuals in cluster communities around the world doing so incredibly much for the others. You are helping people and saving lives every day. You are awesome !
  7. 1 point
    Cluster headaches predate cell phones, artificial preservatives and food additives.
  8. 1 point
    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
  9. 1 point
    I was allowed Benadryl when I was pregnant. Getting your O2 optimized will be awesome for you most likely. A bit of work to abort, but very much worth the effort! And a great way to go when pregnant. CHF has covered that well, as he is prone to do! ATB and welcome to our community!
  10. 1 point
    Stay safe and healthy out there.
  11. 1 point
    I have no guidance, but I wanted to say congratulations... and I'm sorry that you have CH at the same time. Wishing you a safe and otherwise uneventful pregnancy!
  12. 1 point
  13. 1 point
    Thanks to the emergency personnel in Finland for help with oxygen! I'm not in Finland but know the value of assistance.
  14. 1 point
    I can't connect cell usage to my CCH but I saw a beer weeks ago & still have nightmares of being triggered.
  15. 1 point
    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.
  16. 1 point
    New York hospitals treating coronavirus patients with vitamin C THIS IS HUGE! https://nypost.com/2020/03/24/new-york-hospitals-treating-coronavirus-patients-with-vitamin-c/ This is fantastic news! I've passed it to Fox News and the White House portal. If Fox runs a segment on this news, it might just get President Trump to tell the US and the World about vitamin C infusions as a here and now, inexpensive treatment for COVID-19 patients that doesn't require FDA approval or CDC consent. No need to wait, supplies are readily available! The next step is getting President Trump to tell the public they can take vitamin C and vitamin D3 to help prevent COVID-19 coronavirus infection. This will be Awesome! This is also the risk mitigation factor President Trump needs to end the lock-down sooner and get our great Nation back to work. Take care, V/R, Batch
  17. 1 point
    CHfather, I started this thread with one of the goals preventing exactly what you’re experiencing. Angst over the unknown and information overload are always problematic. If you go back to my first post, I started providing information about what was happening and things to do like taking vitamin C and vitamin D3. Why? Because none of us knew what would happen next with the COVID-19 coronavirus and that taking these two vitamins had a high probability of preventing infection, gave us something known to offset the unknown. Knowledge. Confidence. Then I tried to put what was happening into prospective. If I reported something disturbing, I backed it up by saying I wasn’t running around with my hair on fire. Perspective. For those of you who have never met me in person, I’ve a shiny pate, although I do cultivate under my nose what grows wild elsewhere. Humor. I related the fact that my wife and I have not had a single case of the flu and less than a handful of colds since starting the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and cofactors in October of 2010. Confidence. In another life, I’ve gone through NBC training and sat through highly classified briefings on the after effects of NBC warfare that made what little hair on my head stand up and were so disturbing it did require a shopping cart stacked with bales of TP. Perspective, Facts and Humor. Regarding your quote of my words, I wouldn’t change a thing… That said, hind sight is always 20:20. I should have added, “take your vitamin C and vitamin D3, drink another beer…” Missed opportunity. Perspective. Reality. We’re all along for the ride during this pandemic as there’s little we can do to change the course of events, or the needless loss of lives, but we can try. Accordingly, I try not to get my tail in a knot or let my hair catch fire over something I can’t control, so I what I can do, then watch to see if things turn out like I expect. There are things to do. Last week, I took a week’s supply of vitamin C, vitamin D3, a couple gallon jugs of orange juice and a big bag of 3 oz paper cups to the local Fire and Rescue station’s Fire Fighters and EMTs. I also provided a paper on how to mix the vitamin C with fruit juice and two pages of study result graphics illustrating the safety and efficacy of these two vitamins in preventing viral infections like colds and flu. I didn’t say it would prevent COVID-19 corona virus infections, but they got the point, smiled and said “this should work just fine” and thanked me. I’ll do it again in a week as it appears it will be Easter before the lock-down ends and the end of April before this pandemic runs its course and fizzles out. Finally, regarding your comment “This ain't a COVID-19 website” Correctamundo! We’re inundated with pandemic news 7 X 24 daily. If my posts have increased the angst during this pandemic, then I’ve screwed the pooch. I'll come out of afterburner and throttle back. Take care, V/R, Batch
  18. 1 point
  19. 1 point
    Hey Microdosing, Great question and you're OK! There's a very simple reason why the nostril on the hit side gets the gush and stuffy during a CH. The pain and neruogenic inflammation during an active CH hit triggers the eye on the hit side to water. This starts happening between Kip-5 and Kip-7 pain levels for most CHers and the flow increases as the pain goes up. The tearing caused by CH hits ≥ kip 5 drains down the nasolacrimal ducts at the inside corner of the eye next to the nose on the hit side. The saline tear fluid exits these ducts into the nasal cavity, as its name implies. That means tears from the eye start running out the nose. The lining of the nasal cavity on the hit side reacts by swelling and this gives us the stuffy feeling. So much for today's lesson on anatomy and pathophysiology of a CH. There is a solution to this problem... For the CHers who know what I'm about to say... Wait for it... I would start taking the anti-inflammatory regimen. You can download the posted version of this CH and MH preventative treatment protocol at the following vitaminDwiki.com link. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 For reference, readers of my webpage at vitaminDwiki.com have downloaded 47,321 copies of this CH and MH preventative treatment protocol since 21 Jan, 2017. That's an average of 40 downloads a day. Word on the efficacy of this regimen is getting out. Even if you're not ready to start this regimen or you're satisfied mm are controlling your CH effectively, taking 3 grams/day vitamin C and at least 5000 IU/day vitamin D3 can help build a strong immune system. MM can't do that. Vitamin C supports your immune system. Vitamin C helps to kill viruses and reduces the symptoms of infection. It's not a COVID-19 "cure," but nothing is. It might just save your life, though, and will definitely reduce the severity of the infection. If someone tells you it's not proven, consider two things: 1. Nothing is proven to work against COVID-19, because it is a new virus First identified and named by the WHO 11 Feb Its genome first sequenced on 25 Feb, No RCTs of the COVID-19 coronavirus have been completed, but a lot have started. 2. Vitamin C has worked against every single virus including influenzas, pneumonia, and even poliomyelitis. See the following link for details. https://orthomolecular.activehosted.com/index.php?action=social&chash=a5e00132373a7031000fd987a3c9f87b.150&s=b6603c369765a26b8432c6fde3807447 Take care and take vitamin C, V/R, Batch
  20. 1 point
    Wouldn't hurt to have it in the U.S. I never thought of calling an ambulance just to use their oxygen or get it noted in my records. I can see how it could make it easier to get oxygen.
  21. 1 point
    Hi Dlions20, Occasionally we are seeing people here in their 70s asking on how to treat their first CH cycle after a remission of sometimes 20-30 years So I would say, never consider this thing as "done" or you can be in for a nasty surprise later on. And when you are pain-free, always consider it as a remission and enjoy that time :) siegfried
  22. 1 point
    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.
  23. 0 points