CHfather

Is it an airplane ride that starts setting off the attacks, or just travel in general? Are your headache issues generally well controlled, or satisfactorily controlled, when you are not traveling? Do you mind saying what meds you are using (in part, I'm curious about what works for both CH and HC, or whether you have to somehow treat each one separately)? Vitamin D regimen comes to mind as something that might help. D3 regimen - ClusterBuster Files - ClusterBusters

@Kevin Broderick In this document (same one I sent you earlier with the O2 information), toward the end, there is a section headed "Treatments without O2." Some of them might help you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

I would also say that the effectiveness of this anti-inflammatory suggests that you ought to be doing the anti-inflammatory "vitamin D3" regimen that has helped so many hundreds, or thousands, of people with CH: D3 regimen - ClusterBuster Files - ClusterBusters. In contrast to the anti-inflammatory you're using as an abortive, the d3 regimen is preventive.

I'm glad your new doctor is competent. Any doctor that doesn't prescribe O2 is incompetent when it comes to treating CH. Oxygen is a very good test of whether you have CH. Properly used, it works for virtually everyone with CH, but it generally has no effect on other headache conditions. There's a discussion of proper O2 setup here: Basic non-busting information - ClusterBuster Files - ClusterBusters. It's very important. In terms of using the oxygen, people eventually find their own best ways of doing it, but it is usually recommended that you want to get as much O2 into your lungs as possible, and as much CO2 out as possible, which could mean starting with a full exhale, even with a "crunch" at the end, then inhaling deeply, holding for a second or two, and then forcefully exhaling (with a crunch). As noted at the link above, you want to have a regulator that creates a flow of O2 that allows you to use a process like this (or whatever process works best for you) without having to wait for the bag to fill. Because I have no way of knowing how incompetent your previous doctors were, it's hard to say that a lot of what you have tried (or are taking) was properly tested. Indomethacin, for example, often isn't tested for long enough or at high enough levels to actually determine its effectiveness. Not many big fans here of gabapentin, if only because the side effects are tough for some, and efficacy varies. It is, however, a first-line treatment for TN. Lithium is often used as a last-ditch treatment for chronic CH. I don't think "busting" -- treating CH with psychedelics such as psilocybin, LSD, and certain kinds of seeds -- has been mentioned in this thread. Busting is the reason this site was created, so you can get plenty of information about it if you want, starting with the "New Users -- Please Read Here First" button at the top of each page.

I would say that parts of it sound like CH (pain in eye/jaw; very tight muscles) but many parts don't sound like CH to me (15 attacks/day, 8-hour attacks, pain brought on by "minor" activities such as turning head, opening mouth, brushing hair). To me, some of it sounds more like TN, and some of it sounds more like paroxysmal hemicrania or hemicrania continua. Do you have redness or swelling around your eyes? Do your eyes water when you have an attack? Does your nose run or get stuffy? Do you feel like it's almost impossible to stay still during an attack, like you have to keep pacing around or moving in some way? What medications have you tried? Oxygen? A triptan injection (such as Imitrex) or nasal spray? Steroids? Are you saying none of these consistently help? Have you been given Indomethacin to try? Gabapentin (Neurontin)? Lithium? You might consider the Vitamin D3 regimen, which has been shown to help multiple "headache" conditions: https://clusterbusters.org/forums/topic/1308-d3-regimen/

From your posts, I don't see any indication that you have cluster headaches. What symptoms are causing your doctors to think that you do?

@col, it will probably be good for you to read the general busting advice you will see by clicking on "New Users -- Please Read Here First" at the top of any page.

Are you sure it wasn't nitrogylcerin? That's what is usually used to deliberately trigger an attack. There have been people here who thought that nitrous oxide ("laughing gas") was a good abortive for them.

Yes, it's the epinephrine. This is from the "Triggers" post in the CB Files section: "Anesthetics containing epinephrine (such as Xylocaine) and nitrous oxide have been identified by some people as triggers. Ask your dentist to use something else: Prilocaine seems not to cause bad effects. Another person has mentioned carbocaine as an anesthetic that didn't trigger his CH."

Because an answer seems so important to you, I can tell you that in the last big published study of people with CH in the US (more than 1100 people, mostly members of CB or ch.com), about 13 years ago, this was the report: "55% of the US cluster headache population has had suicidal thoughts while 2% have tried to commit suicide. In addition, 50% of survey responders also demonstrated selfinjurious behavior during attacks." https://www.clusterheadaches.com/yabbfiles/Attachments/Cluster_Headache_in_USA.pdf This doesn't precisely answer first question you are asking, but it might be as close as you can get. Overall, about one in 30 suicide attempts actually result in death. If you would want to try to project those statistics to today, you might want to consider the many recent developments that might affect suicidality, most of which are included in previous posts in this thread (the study that showed effectiveness of "high-flow" oxygen, for example, was published a year before the study I have quoted from). On the other hand, I wouldn't be surprised if the percentages have remained about the same.

Just to follow up a bit more . . . If you have medical tanks (silver), the welding suppliers won't fill them with welding O2. But of course your medical oxygen supplier would. If you have welding tanks (green), and you don't tell them it's for medical use, the welding suppliers would be expected to fill them. If you tell them you want it for a medical use, as I've said they will turn you away. But maybe we're just not understanding your situation.

I'm not sure I am understanding this. Are you asking welding O2 suppliers for medical O2, or welding O2? It seems 100% impossible to me that welding O2 companies would only be supplying doctors -- that would leave a very huge hole in the economy.

Thank you, Busted'. That's helpful information to share. Would you mind saying (1) how long it typically takes to abort an attack; (2) whether you are also using it as a preventive, as the company recommends; and (3) how much you are paying per month (last I heard -- which was quite a while ago -- it was about $600/month)?

erin, probably your best bet for an overall view would be to type paroxysmal into the search bar at the top right of any page. There are no recent regular participants here who have a hemicrania (PH or HC), and I think it's safe to say that for those of us who are active, our knowledge is all second-hand. I assume you are using Indomethacin. my sense over many years of seeing people here with hemicranias is that busting doesn't help much unless it's a pretty constant thing, every five days or every week, which most people for good reason don't want to undertake. But you might get a different idea from what you find from a search. On the other hand, the vitamin d3 regimen has (as I understand it) been quite helpful. You can send a message from here to xxx, who is called "Batch," and he will probably let you know what he has learned about this treatment and PH (to send him a PM, click on the envelope icon (above the search bar) and put xxx in to "To" line).

It's a great story about a brave, brave man. It is remarkably true of people with CH that, as you say, they resist burdening anyone else with their struggles. It's also a sad story to me, because even then there were treatments that could have helped him, but it sounds like he got nothing from his doctors (another common theme for CH). Thank you for taking the time to write to us. I might be mistaken, but I think there has been at least one other person who experienced remission after cancer treatments.