Dallas Denny

@standardized17493 I'm not positive about the hemicranias but with clusters the autonomic symptoms can vary from patient to patient....some folks get a stuffy nose while others have a runny nose....some experience a weepy eye while others don't!! FWIW, I do personally know a young lady with hemicrania continua who has had great success utilizing the "clusterbusters protocol" with Vitamin M as her busting substance!

Oh shit @standardized17493, my bad bud!! I definitely meant indomethacin and not gabapenten!!

So, it's great news that you've seen and been diagnosed by a neurologist and good that you've had an MRI to rule out other nastiness!! But to be honest, this does not sound anything like clusters!!! However, it does sound more like one of the hemicranias.....the good news is that gabapenten is an effective pharma solution in most cases!! It also sounds somewhat indicative of Trigeminal Neuralgia but I'm unsure about treatment options for that disorder. I would most definitely try to get a 2nd opinion, preferably from a certified Headache Specialist Neurologist!! Another long time member here, @CHfather, is a supporter of his clusterhead daughter who lives near DC so he might be able to chime in when he sees this thread and give you some direction on finding another neuro in your area. DD

Welcome to the community @standardized17493 but sorry you had the need to join us! My oh my, you are indeed a newbie clusterhead!! Do you have a doctor's diagnosis of cluster headache? If so, congrats for getting the dx so early in your journey with clusters.....the Beast has been my episodic companion for goin on 43 years and it took 7 years for me to get the diagnosis!!! I'm going to assume that you do have a docs dx since you've obviously managed to get an O2 script and have sourced the clusterO2mask and a 25 psi reg!! So, sounds like you've got all the right equipment and it's evident that you've researched the correct breathing technique with your "deep in/exhalations" comment. In the past 16 years I've only run in to 2 clusterheads for whom O2 didn't work or made the attack worse so what you are describing is rare in my experience!! The first thought that comes to mind is the possibility that you've been misdiagnosed!! Clusters are just 1 of 5 types of headaches under the TAC (trigeminal autonomic cefalalgia) umbrella. Please relate the specifics of your attacks, timing, duration, ect, and if your doc prescribed a trial of gabapenten to rule out hemicrania continua or paroxysymal hemicrania. Dallas Denny

Welcome to the community @Nikola, sorry you have the need to join us!! Unfortunately, the short answer is there really isn't a definitive answer to your question!! ive been a episodic clusterhead since 84.....42 glorious years now......before I got here 16 years ago my cycles we're fairly predictable.....18 to 19 month remission and 5 to 6 mo cycle usually beginning in August. But I know many folks that get 2 cycles per year and always have.....the untreated Beast truly has a mind of it's own!! Couple things you might look at here are high flow oxygen for aborting individual attacks, and the anti inflammatory vitamin D3 regimen to lessen the frequency and severity of attacks. Dallas Denny

@Nikkk I'll echo Craigs kudos for offering your time and skills!! I've lived long enough to become the elder statesman of the forum having been here since our go live date 16 years ago and counting!! That was Oct of 2009 and at that time the only online support sites were OUCH, clusterheadaches dot com which i think DJ launched in 1998.....and DJ was instrumental on getting us online as a yabb powered sister site. Although I've become the senior member, the jeebster AKA @Bejeeber and @CHfather got here in short order! I think Im safe in saying for all 3 of us that those years of the forum before Facebook were vastly different than they are today!! I've made several appeals at past conferences for folks that I personally know and who were once active members to take a little time and comeback and be a part of this community to no avail!! Although we transitioned to the current forum software probably 10 years ago, it is still a "static" type of board vs the "dynamics" of Facebook. As a result the forum has become just a few active members who support the few clusterheads who happen to find us before they find the many support groups on the "Book"! I was able to have a conversation with our fearless leader Bob at our Conference in Dallas this past September regarding the future of the forum.......I walked away from that conversation not anticipating any upgrades!! However, I can't speak for Bob and will definitely bring this thread to his attention!! The real tragedy is that this is the only place that you get reliable, time proven advice on the "clusterbusters protocol" while in the Facebook groups the term "busting" has become so bastardized that the information and advice is often worthless!! I used to keep my eye on those groups but eventually got tired of sounding like a broken record as I tried to offer correct information when I saw bullshit advice being given and finally just gave up posting there!! As to an app, although I've never used one, I know that there are several out there in use......in fact we had a member here several years ago that developed an app called "Nobism" if I'm remembering correctly......but I haven't heard anything about it either here or Facebook in at least a couple years! Once again, kudos and welcome to the community!!

Welcome to the community @danawright65, but sorry you had the need to join us! Unfortunately, when you have to deal with getting a (correct) script from a doc, and then deal with O2 suppliers, it can be difficult!!! My solution in 2007 was the procurement of a welding ox setup.....I paid $300 for a large ( 4 ft tall by 9 in diameter) cylinder, $50 for a welding ox regulator, and $25 for a clusterO2 mask from our sister site clusterheadache dot com. And I pay $23 for a refill/exchange. Now for the drawbacks.....cylinders this size are really heavy and difficult to move around, and you can't let the welding supplier know that you intend to breathe it. Same O2....the only difference is that med ox tanks go thru a vacuum process prior to refill. Dallas Denny

Got to meet so many folks, several from the board that I've interacted with for years! The big take away for me? At the 2010 conference in Portland we had one neurologist in attendance....our own bostonheadachedoc....this year we had several including one of our longtime members son who became a neurologist as a result of his Dad's clusters!!

About to start registration and presidents reception!! Supposed to be around 80 first time attendees!!

Welcome to the community and congrats on finding some relief!!

Yes, I think most if not all of the participants in the cluster buddy program are folks who interact with clusterbusters on Facebook.....I'm not aware of any participants from this forum.

Thanks for the post and the reminder that these tests are an integral part of the D3 regimen and very important!!

Ummm yeah, I reckon I'm up for the 80 mile drive to hang out with a bunch of clusterheads!!