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

Here ya go wing_nut! http://www.clusterheadaches.com/wwwboard/messages/63158.html?fbclid=IwAR26DY-Zyy6hVnPkL-YkuVMcXDEiN6cEBAV0r3H8OUvlj9SE6fQKyBSDe54 Dallas Denny

Just smfh....

Lmao! I caught that as well @Brain on fire......let's see now....I learned about welding oxygen from Marc from down in Bastrop Texas in 2007 on DJ's site.....this site went live in Oct of 2009.....this guy came along in his previous incarnation in 2015.....AND I can assure you we was spreading the message far and wide and loud and proud when he got here so I'm really not sure what he thinks he's taking credit for.......BUT THAT AIN'T IT.....and in the eternal words of Potter, I call BULLSHIT!!! DD

https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people

G'mornin Cast Iron and welcome to the community....sorry you need to be here! Excellent first post...you left nothing out for us to question you about that I can see! I do find it sad and ironic that you live in one of the few countries where "busting" supplies are legal and readily available but your personal convictions eliminate that option! However, that being said, I'm afraid your dependence on rather high doses of verapamil to manage your clusters would make it extremely hard for you to titrate down to a level that would be conducive to busting anyway... From the various reports on Emgality both here and on Facebook it seems to me that efficacy thus far is hit or miss....much like most options we have available to us as clusterheads! Sending positive thoughts and painfree wishes from this side of the pond! Dallas Denny

Correct BOF..... it's called Nobism now CJW....Rogier is a fellow clusterhead, member here, and developer of the app...he's been working on and tweaking it for several years and recently spoke about it at a large medical conference in the UK. https://nobism.com/ DD

Agree with the minimalist approach @MRUPE! Although I highly recommend the D3 regimen solely bbased on the "anecdotal evidence" that I've witnessed as it was being documented over the years, I don't personally use it.....when I got here 10 years ago I committed to "busting" as a treatment and didn't want to "muddy the water" by adding the D3 and then not knowing for sure which strategy worked!! When I got here I viewed clusters as a curse but thanks to this place it's become an annoying inconvenience! DD

Lol @jon019.....yuppers. that damned old anecdotal evidence saved my freakin bacon.....damn proud I didn't have to wait for completion of the Yale psilocybin trials to get on board!! DD

G'evenin MRUPE! Batch, who came up with the vitamin D3 regimen, is an old Vietnam era Navy fighter pilot, and a fellow clusterhead with a chemistry degree!! You're correct in that there are no double blind trials, however, Batch has been collecting survey data from the many clusterheads who've had tremendous success with the protocol since he came up with the it almost 10 years ago.....that data shows a efficacy of around 75%! I couldn't begin to tell you how it works but I've listened to Batch speak at our yearly patient conference and I can tell you that there's a sound reason for each of the co factors and that they all work in correlation with each other. Dallas Denny

Clusterbusters Has Exciting News for 2020 Dear friends, For nearly 20 years, Bob Wold has managed Clusterbusters as a volunteer. He takes our desperate calls in the middle of the night, answers emails, travels, organizes, and sacrifices time with his family in order to ensure that every person living with cluster headache has the best life possible. His efforts in education, driving research, and support are unprecedented and unparalleled. In addition, Bob has held a regular job to help support his family. He does all of this, likely working 80 or more hours a week in total, with so much kindness and without complaint. He also lives with the same crippling disease that we are fighting to eradicate. We are living in a special time in the headache community. More attention is being given to research and to our disease. We have received tremendous support from the research community and even more amazing support from our own patient community. It is time for Clusterbusters to make a change. We have a growth opportunity, but we need to focus. Consequently, Clusterbusters is proud to announce that we have asked for and received Bob's resignation from our board of directors. He is no longer our president. Instead, we have hired him as our Executive Director. He will now work under the direction of the Board of Directors full time to carry out the mission and vision of Clusterbusters that he developed in the early part of the 2000s. As the position of President of the Board has been vacated, I have been asked to serve as the President and I have accepted this position. I am so proud to be able to continue to serve this community that has given me so much. Thank you all for your support. As you may know, we have added Ainslie Course to our Board of Directors. We are excited to include her as this will help us to grow and expand our reach. Thank you, Ainslie, for adding your talents and light to our community. We will be continuing to grow our amazing organization. We are so proud of Bob Wold, those who came before us, and all of the accomplishments of Clusterbusters, and we are looking forward to helping to shape a better future for everyone living with cluster headache. Sincerely, Eileen Brewer President Clusterbusters Connect with us ‌ ‌ ‌ Clusterbusters | P.O. Box 574, Lombard, IL 60148 Unsubscribe dennispohlenz@yahoo.com Update Profile | About Constant Contact Sent by eileen@clusterbusters.org in collaboration with

"We're all just walking each other home"...Ram Dass Rest in peace just doesn't seem appropriate so I'll just say safe travels and happy trails.....and Thank you!! DD

https://drive.google.com/drive/folders/1LIQTMO8yOudikkmJ1Wpi0GoEjn9Y5e_D?usp=sharing_eil&ts=5dac9336

Sorry to report that we have lost yet another clusterhead sister who opted for suicide as a solution to escape the pain!! Marie is from France and leaves behind two young children and her husband! We have lost soooo many to this hideous affliction in the past few months!! DD

Good that you have a firm diagnosis Bass! Even better that you're getting an O2 rig together....high flow oxygen be it medical or welding is a clusterheads lifesaver!! The Clustero2kit that you have on order is the Cadillac!! But, to be completely honest, I'm not sure how you'd go about sourcing a standard non rebreather mask from a local supplier without a script for O2.....you might inquire at a durable medical goods supplier. Hopefully someone else with experience will be able to direct you on this matter! Good luck! Dallas Denny

Congratulations on your long "REMISSION"!! But, I have to agree with Chf and BOF....there is no "CURE" for ch to date and your post is highly suspect by saying you're cured and then not elaborating.....but then again, it would be hard for you to elaborate since a "cure" doesn't exist!! DD

Welcome back Brian! DD

@CHfather. I found the old clustercluster.com site in 2007 by clicking the "clusterbusters" in the old ch dot com navigation bar.....it was strictly a website then with all of the info that's in Tommy D's files and there was one of those password protected "Yahoo groups" for discussion......I know the vast majority of us who joined this forum when it went live came from DJ's board because the launch was announced there so have no idea how we would have found this place thru a search back then!! Bless you DJ! Dallas Denny

I'm going to go ahead and post this a few days early as I may not have the time this weekend! This board went live on October 27th in 2009! I joined that day so it will also mark 10 years of active membership here for me as well!! We all owe a deep debt of gratitude to DJ for helping with getting the original yabb powered board up and running!! I can honestly say that being a part of clusterbusters this past 10 years has been by far the most rewarding experience of my life!! DD

Hot damn Brian!! That is some OUTSTANDING FECKING NEWS dude!! When do you arrive in Big D? I'm leaving okieland early Weds morning for my 88 mile journey to Grapevine....all but the first 5 miles of gravel county road is major freeway and tollway driving and I don't even have to go thru the Metromess to get there!! Wooo Hoooo! Almost (but not quite) makes me feel guilty for saying that...lol.....I have two longtime clusterhead friends coming.....Lady A left Scotland for Germany this morning to hook up with Hans and fly on to Dallas.....she's already in the air and they won't get to Big D til early tomorrow!! Yeah, maybe I do feel a little guity!! Stopping along the way to pick up a case of Colorado Koolaid longnecks to go with that pizza!! Safe travels my friend and see ya soon!! DD

G'mornin Clovis! The regulator you have is insufficient for most clusterheads!! When I tried O2 for the 1st time it was with an 8 lpm reg and it wasn't effective! Most of us need a minimum of 15 lpm and many folks use 25 lpm regs. DD