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Just checking in. - 5 years cluster free after being chronic 8-10 daily and seconds away from ending it all. This site saved my life and I'm grateful. - took 17 tries of MM dosing every 5 days to finally get relief. ( learned about dosing here) -low histamine diet . I literally don't eat any foods with high histamines. Stopped eating meat as well. -stopped drinking alcohol (major trigger) - lost a lot of weight Initially but I have found foods I can eat to maintain a healthy diet -still maintenance dose at least 1-2 times a month. -if my d3 gets low or I don't maintenance dose I feel signs of pain. (Sickness, allergy season) - I realize food is a major trigger so I'm very cautious and eat very limited items which can be very very difficult at times but I'll rather eat blackberries for example then have a cluster any day. other triggers include - smoke of any kind (this sucks because everyone smokes and this includes hookah smoke) - extreme heat overall, the d3 regimen, avoiding histamines, dosing consistently and avoiding triggers have helped me be cluster free. Ironically, MM helped me with bipolar disorder. I stopped taking all of my bipolar meds. They're truly magic. Am I cured, ABSOLUTELY NOT but am I able to live a normal pain free life yes. At times I am very isolated from the world as I fear being triggered which sometimes is difficult but the fact I can be father to my kids is more important . Clusters have taught me to appreciate everything. Truly living between the headaches. I don't take a day for granted and wanted to send hope to anyone who may need it. -

...this is one of those "it seems like it should work" deals. ...the old CH board (clusterheadaches dot com) sadly nearly forgotten and increasingly hard to navigate (a cursory search found nothing) ...used to have a discussion on this on occasion. nobody ever reported success, and the consensus was "it doesn't work". it always seemed a bit of a knee jerk "no" to something different to me when brought up.... and perhaps some were disinclined because of that... ....we really don't know enough about how O2 works for us to dismiss out of hand any method. whether this could work or not i know not...certainly worth the try. i'm guessing...just like adding caffeine/energy drink to O2 usage enhances effectiveness for aborting a hit for many, perhaps some adjunct like that would be effectiveness enhancer/enabler for continuous low flow prevent.....dunno, but carry on..

We are coming from New Zealand. We intend to do the same or after the conference. It sure would be good to hear of any must see things in Texas! Look forward to meeting ya’ll.

This is what Batch has written about testing: "You will need to see your PCP/GP for lab assays of your serum 25(OH)D3, calcium and PTH. Adjust the vitamin D3 dose to keep the PTH serm concentration between 20 and 14 pg/mL and still keep the calcium serum concentration within its normal reference range to obtain the maximum therapeutic effect. Once at a stable vitamin D3 dose, annual labs are sufficient. It’s important to drink 2.5 liters of water during the 24 hours prior to the blood draw for your labs. Once you’ve established a vitamin D3 maintenance dose that keeps you CH pain-free, an annual set of assays is sufficient." There is more information about why these tests matter at Cluster and Migraine headache treatment protocol - Sept 2023 | VitaminDWiki

CLUSTERBUSTERS 20th ANNUAL U.S. PATIENT CONFERENCE September 11-14, 2025 We are very excited to celebrate our 20th Anniversary Conference with you. Join us for this long weekend of support, education, and community in Grapevine, TX near Dallas/Ft. Worth. Check out the event page for information about scholarships, tickets, programming, and booking a room at Embassy Suites by Hilton Grapevine DFW Airport North. The agenda and more details about the conference will be shared soon. This is a great opportunity for those living with cluster as well as caregivers to socialize and connect about shared experiences in safe spaces. Saturday’s dinner and award ceremony theme will be the Roaring 20’s for those who choose to participate. This conference is also appropriate for Healthcare Professionals who want to learn more about cluster headache and obtain CMEs for their education. We hope to see you there! For more information and to register: https://cbdallas2025.planningpod.com/

In!

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

I was just planning the trip, hotel reservations made and watching flights. We will take the opportunity to explore more of Texas beforehand.

I have both UC & I am CCH since 2012 - ask me any questions you have. And yes I have found stuff that helps. Nothing makes them go entirely away, but I have found ways to lower the intensity and number of attacks, and manage life with this condition. And my other health issues. Feel free to ask me anything.

You are definitely not alone, I also have a 'weird' migraine/CH co-existence that differs a bit from yours. If I'm in a cluster cycle I will have no migraines, however the final dose of a 3-dose bust will often trigger a migraine. If this happens then 90% of the time it means the bust has worked and my brain has flipped back to migrain mode. I'll then have a few migraines over the following months until CH rears its head again. So in my case it's a bit of flip-flopping, I can only recall one instance over the past 17 years where I had a migraine during a CH cycle. The moral of the story is I guess that both these conditions are pretty complicated and not very well understood, and there is almost certainly some cross-over in causes that leads to our individual circumstances. By accepting our individuality it also opens the mind to expermenting with the different busting regimes/tactics and finding something that works for you if the standard regimes aren't quite working or that may go against current thinking. Good luck with your journey...

Well welcome @sanderson. Glad you decided to join us but sorry you needed to. Some of the symptoms you describe do sound a bit like CH. The "don't you dare try to rest attacks" are pretty common amongst us. I didn't notice any mention of unilateral symptoms? I see the comment about the occipital pain which I don't think is as common but definitely not unheard of. The fact that O2 worked for you (and that you have access to it) is great and is something that works for most cluster heads. Although many of us have experienced O2 not working during a full attack so I wouldn't let that rule out the possibility of CH. From my experience with CH, the pain is typically one sided with the daunting and very uncomfortable/uncommon side switch but it's usually always on one side or the other. I am not sure what you have tried to eliminate the occurrence of your pain but I would highly suggest the D3 Reg which you can read all about on here as it has been know to help with various headaches head attack types migraine included. Hope you get some answers and relief soon!!

I too have heard of people trying low flow O2 while sleeping with mixed results. I recall one person stating that just a plain CPAP seems to help with night attacks. Combining the 2 is an interesting idea but I can offer no personal experience, nor can I recall anyone trying such a setup. It would seem that using a concentrator AND combining the room air flow from the CPAP wouldn't give the user anywhere close to the pure O2 we recommend for an abort but as a preventative....I guess it could help? The setup would definitely increase the level of O2 per breath verses room air. Perhaps that might make a difference for some? Please update us as to its long-term effectiveness. This is worth watching.

Yes, with the hospital stay and calcitonin they were able to get my levels to where they needed to be before something really bad happened..... I felt compelled to come to this forum that has helped me so much in the past and give this warning.....please get regular blood tests if you are in the D3 regimen like most of us are

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

I'll be there. My wife has volunteered to work/help, but she hasn't heard from anyone yet about that. Anyone know who we'd contact to see if we need to arrive a day or so in advance?

Last year was my 1st year attending. I had never met anyone with CH before that conference. It was great being around everyone. I learned a lot and hope to attend again this year !

...just remember, one must ask politely

thanks everyone, it just helps to hear that these things aren't necessarily outside the range of "normal"! the validation means A LOT, thanks!

I sure am no diagnostic expert, but the fact that your CH-like attacks do respond to oxygen, you feel them behind the one eye, and they are fast ramping makes them sound to me like yep, some CH really could be mixed in there with the migraines.

I've been to a few new dentists/oral surgeons lately. They give me a big form to fill out asking whether I now have or have ever had any of a whole lot of medical conditions. Of course, CH is not on the list. I have been urging them to add it, or ask about it, since they could save people a lot of misery by not using epinephrine with patients who have CH. Will they do that? Probably not. But unlike virtually all of the conditions that the form does ask about, knowing that a patient has CH could actually matter. Just recommending that maybe you do the same with your existing dentist or any new ones.

Help us share cluster headache facts in honor of Cluster Headache Awareness Day. Let’s continue to advocate and educate others about this debilitating neurological disease. Together we are stronger! Please also join Clusterbusters board and staff this Sunday, March 23 at 12pm ET for an informal chat. Register for free event: https://conta.cc/4kNE20G

Sorry.. I did correct that to say NOT block. Sometimes my brain and hands are not on the same page.

I have had ECH for 12 years and each episode seems a new item. Since sleeping seems to bring on the curse, the on and off of high flow 15lpm was making sleep impossible for more than 90 min. This season my PCP recommended to “bleed” oxygen from my concentrator into the cpap that I started using last year. It has water in it, which adds humidity, a good seal on nostrils and lowering flow from 15 down to 8 seems to work for me. Any others out there doing this ?

Hello fellow cluster sufferer here I recently spent 5 days in the hospital because of the D3 regimen. I followed the regimen down to the T and the doctors said my kidneys were actively failing. They said my calcium levels were critical in my blood and spent a week trying to get them down. I have been on the D3 regimen for about 10 years. I am not here to blame anyone, but I am here to tell y'all to make sure to take your blood tests and get checked out

Y Yes ...get your calcium checked

I recall at least one other report from pretty way back in the day of the successful use of continuous low flow oxygen while sleeping (I'm pretty sure it was with a cannula, to avoid suffocation type risks). With your cpap, you have a different, and also interesting thing going on there. I'm tempted to tag @Racer1_NC on this for any observations, since he is what I would consider a genuine O2 guru.

I am sorry this has happened to you. I very much appreciate your post ! I have been on the D and cofactors for awhile but have only been getting my D levels checked. To be clear I need to get D levels and Calcium levels checked to avoid problems?

Hi Chrissy, a cycle with unexpected changes in what had previously been consistent, reliable behavior of the attacks, such as the time of day they strike, duration, how many attacks per day, etc., is a phenomenon I've seen reported aplenty, and I've experienced this myself. Just when a pattern has been seemingly cemented into place, stuff will suddenly out of nowhere get all switched up. Long remissions after many years with CH is common enough too. Many get caught off guard when the CH does return following an extended remission, having believed their CH had completely burnt out.

While “planning on” attending doesn’t always thoroughly guarantee it will actually happen, Jeebs (staying true to form and referring to himself in the third person) plans on attending! Psssst....I have to whisper this, but last I heard, Dallas Denny is rumored to be making plans to attend also...!

Oh for pete's sakes! This one takes the winner winner polish sausage dinner? Glad your still around @jon019! Thanks for the much needed chuckle!

@MiloS, thank you for this input! I think virtually everyone here would recommend that you start on the D3 regimen right away. It might or might not help during this cycle, but it will help you with future ones if you stay on it. D3 regimen - ClusterBuster Files - ClusterBusters And split those triptans: Getting partial doses from sumatriptan injectors (Imitrex, Imigran, etc.) - ClusterBuster Files - ClusterBusters And maybe try a 5-Hour Energy or some other energy beverage as you start with the O2. This speeds up aborts for many people. Consider the mask made for CH that many people say shortens their O2 abort time by 10% or more. ClusterO2 Kit - Clusterheadaches.com - Online Store And at least keep busting as an option (click on New Users - Please Read Here First in the blue banner at the top of each page).

the anti-inflammatory vitamin D3 regimen has worked very well for people with chronic and episodic CH (https://clusterbusters.org/forums/topic/1308-d3-regimen/), and "busting" (using psychedelics), when done properly (not with microdoses and generally five days apart, not three or four), has also benefitted many to prevent cycles/attacks and provide an end to episodic cycles or remission from chronic attacks. you don't mention oxygen in your posts, but it is a very effective abortive for chronic and episodic folks, and so is DMT. None of these things (D3, oxygen, or DMT) blocks busting, and there are other CH meds that don't block busting. again -- may you never need any of this information, and may your discovery benefit many others.