Dallas Denny

@jon019 Heard back from Bob late last nite Jon....they're working on that now....he'll either get the info to me or he will update the thread

@jon019 Good question bud....just sent Bob W a text to see if he has any input...I'll update my post when he responds! DD

G'mornin ya'll!! Please take a few minutes to make a public comment about the efficacy of O2 in aborting clusters!! Although this is about coverage for Medicare recipients, most private insurers follow the lead of CMS! They'll be taking comments for 30 days! https://www.cms.gov/medicare-coverage-database/details/nca-tracking-sheet.aspx?NCAId=301&bc=ABAAAAAAIAAA Note: from what I understand this site is not IOS friendly so if you have any issues commenting from an iPhone that's probably why. Dallas Denny

Welcome to the community Nick! Unfortunately, there aren't any answers to your questions that are set in stone! However, the Beast does morph over time......mine were just a few weeks with mostly late evening hits the first couple of cycles but by 1998 they had progressed to 20 to 26 weeks weeks with an 18 to 19 month remission period, and the vast majority of my hits were nocturnal. The good news is that you have a bonafide dx just months after your clusters prevented......7 years from onset was the average when I was dx'd in 91..mine began in 84, so I fit exactly! And, you've found us and believe me, collectively, the active members here know more about clusters and their treatment than most docs! Many excellent treatments available to you in the way of oxygen to treat individual hits in cycle, anti inflammatory vitamin D3 regimen that you can take all the time to lessen frequency and severity, and for some it even seems to prevent cycles......and other remedies you can read about in the clusterbusters files and busting stories section of the forum! Although it can vary, many of the clusterheads I've known for a long time have been dealing with the Beast for 30+ years...36 personally and I'm 73....but, like I say, you've got a leg up on us old farts with what's available to manage clusters today!! Read and ask questions! Be well! Dallas Denny

G'afternoon @omarmosleh! Just curious if you've received any email responses yet? I've seen 2 comments on my Facebook thread so far...I've met one of them at our annual clusterbusters patient conference in 2015 and she said she'd be willing to speak to you....I also chatted with a young man from Alberta who I've been mentoring for the past couple of years and he said he'd get in touch with you as well. I've also reached out to a Canadian doc that I've known for many years, and who has many years of busting experience but haven't heard back from him yet. Thanks for your interest in this project! Dallas Denny

@omarmosleh I know several Canadian clusterheads who bust, with your permission I'll be happy to copy/paste your post and contact info to a Facebook support group for clusterheads where they are members. Dallas Denny

@Phantom99 Aimovig is one of the CGRP class of medications that have been developed over the past several years.....from the reports I've seen it's overall results are much like other cluster pharma meds....works for some and not for others I'm sad to say. Emgality is another one of the CGRP meds and actually has a dosing protocol specifically aimed at clusters...again, doesn't seem to work for all but from what I've seen, it has a higher efficacy than Aimovig. Dallas Denny

Indocin and indomethacin are the same drug.....it's usually prescribed (and works well, usually in just a few days) for a hemicrania continua diagnosis and is also used as a diagnostic drug since it doesn't usually work for clusters....odd that they would prescribe it along with frontline cluster medications! Dallas Denny

@Woobyjay @Desperately Seeking Relief if ya'll maintain a presence on Facebook shoot me a PM and I can put you in touch with several clusterhead friends who live in NY, NH, and Mass.....can't recall any that are in Connecticut but the folks I know usually have at least one meet n greet a year for clusterheads in the new England area! Clusterbusters actually had a cocktail party in the works in NYC but I'm fairly certain that was postponed or canx due to covid. DD

Welcome to the community Bust, sorry you had the need to join us!! Awesome first post! Dallas Denny

G'mornin ya'll I just read a Facebook post put up by our longtime member Godsjoy777 asking for prayers! Karen's husband Calvin is in ICU in Dallas. Dallas Denny

Hi Graci and welcome to the community! To be honest, what you're describing doesn't sound like classic cluster headache to me. Typically clusters are one sided with pain behind the eye, temple and forehead accompanied by runny or stuffy nose and a watery or tearing eye. If your neurologist isn't also a headache specialist, I would advise trying to find one who is.....I'm sorry to say that I'm not familiar with one in your area though! Gabapentin aka neurontin usually doesn't work well for clusters and there's other front line approaches so I doubt that your doctor is very knowledgeable about clusters! Dallas Denny

G'afternoon microdosing Definitely agree with Chfather that the antidepressant did not trigger a cycle for you.....and, I'm also not convinced that microdosing is an effective treatment for clusters. As Vipul mentioned above, high flow oxygen therapy and the D3 regimen are your best bet in managing your clusters. As to Mirtazipine, most, if not all anti depressants in the SSRI class are contraindicated when it comes to busting due to the risk of serotonin syndrome....a quick Google search shows the following: warnings Serotonin syndrome warning:Mirtazapine can cause a life-threatening condition called serotonin syndrome. Your risk may be higher if you also take other drugs that have similar effects as mirtazapine. These include antidepressants or triptans, such as sumatriptan and zolmitriptan. Symptoms of serotonin syndrome include agitation, hallucinations (seeing or hearing something that isn’t there), confusion, trouble thinking, coma, coordination problems, and muscle twitching. They also include stiff muscles, racing heartbeat, high or low blood pressure, sweating, fever, nausea, vomiting, and diarrhea. Call your doctor right away if you have these symptoms. Besides these dangers, the therapeutic effects of busting may well be blocked by the antidepressant. Best wishes Dallas Denny

Welcome to the community Lee! You'll never forget making the conference....4 down and hoping to make Chi Town number 5! Dallas Denny

Hey FunTimes! One name that comes to mind is Giuseppe from the old ch dot com board.....I recall that he has fairly good success with the lithium/verapamil combo! I can't recall any reports from folks that busted while using lithium....I've always just parroted the info we have in our files about it being an enhancer. DD