CHfather

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.

Please remember to ask the dentist not to use anesthetic with epinephrine. If you do have CH, it will almost certainly trigger attacks.

Perhaps Batch @xxx will have suggestions.

I probably have said this before, but there's no harm in starting the vitamin d3-based anti-inflammatory protocol now. Since you're looking just to build up your level over time (to help prevent or mitigate a next cycle, if there is one), you don't have to do anything "drastic" like the loading process. D3 regimen - ClusterBuster Files - ClusterBusters

I think all of your doubts about the sinus headache diagnosis are justified. I agree with all that the others have said. Let us know what your CBCT shows. Sinus and teeth are such common misdiagnoses of CH. I looked at the Mayo Clinic page about sinus headache, and you don't seem to have had most of the symptoms. Under the heading "Treatment," this is the first thing it says: "Most people who assume they have sinus headaches actually have migraines or tension-type headaches." (https://www.mayoclinic.org/diseases-conditions/sinus-headaches/diagnosis-treatment/drc-20377584) They then go on to talk about treatment for migraine and tension headaches. The characteristics of yours, as we have said, suggest CH. If you DO wind up getting any kind of dental work done (which I think we all would advise against without a second opinion), be sure to tell the dentist not to use any anesthetic with epinephrine -- it's a wicked trigger for CH. I'm gathering that you are not having symptoms now? It's nice to know you can go back to this guy if you start getting them again, but I would also schedule an appointment, as the others suggest, with a neurologist from a headache center if that is feasible for you. Considerate as this doctor might have been, I do not trust him. You know pain. This was more painful for you than a burst appendix, and your restless reaction to the pain was typical CH reaction. In my opinion, you probably have CH. You are not a baby or a wuss. As Jeebs says, get things lined up now, just in case.

Of course, welding O2 is always an option, maybe even as a backup or supplemental system for what they give you (for example, so you go through the Es less quickly and maybe they stop hassling you about a concentrator, and meanwhile you're building that relationship with the delivery person or some executive at the company).

This might help you prepare for your neurologist appointment (and some sections might help you cope while you are waiting). https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Do everything you can to get oxygen. Even though it is the #1 recommended abortive, many neurologists don't prescribe it (almost never for a good reason -- they just don't). And you probably should start the D3 regimen now (there's a link to it in the post I gave you in the first line up above).

A small new study shows reactions in the brain in people who were given psilocybin in a controlled setting. https://www.nytimes.com/2024/07/17/health/psilocybin-psychedelic-mushrooms-brain.html?unlocked_article_code=1.8E0.Lz64._rRTbzGppix-&smid=url-share

Great news, stella'! (In the US, Vydura is Nurtec.)

We hear about this from time to time. It seems like it's usually in Canada. Have you explored options with the pharmacy/doctor, such as sumatriptan in vials, with syringes, so you can do it yourself, or the lower-dose autoinjector, Zembrance, which has plenty for stopping a CH attack? Or a triptan nasal spray? Important info for when you get the Imitrex/Imigran: Extending imitrex - ClusterBuster Files - ClusterBusters Some people get Imitrex prescription filled when they are out of cycle to stockpile it. It lasts a long time.

I'm sorry that I can't answer your basic question about whether you can use psilocybin while on antidepressants. For the purpose here, there are two questions: (1) the one you asked, which is whether there will be side effects from taking both; and (2) whether taking antidepressants will interfere with the effectiveness of the mushrooms for treating your CH. I think the answer to (1) is no, but I am not certain. Here's one seemingly serious report that says that: https://psychable.com/mind-and-body/should-you-take-psychedelics-if-youre-on-anti-depressants But #(2) is just as important, and I do not know the answer to that. The old guidelines here only say weakly that one type of antidepressant, SSRIs, "may" interfere https://clusterbusters.org/forums/topic/687-6-playing-well-together/. BUT if you decided that you were not likely to have side effects, then you could try the shrooms (or LSD, or seeds) and see what happens. Because there are so many different kinds of antidepressants, it might be worthwhile for you to say the name of what you are taking, in case someone has specific experience with that medication and busting, or maybe with the category of medication and busting. I thought when you wrote in your first post "I have also tried D3 regime, also mushrooms,lsa,benadryl," you were saying that you had already tried mushrooms and seeds (the source of LSA) and they didn't work. This is not an "or" question. If you decide to try mushrooms, you can do both the D3 regimen and mushrooms. Lots of people do both. And yes, you should start the full D3 regimen as soon as possible. I think @BoscoPiko has a link to the latest information about that.

Here is an important tip about your Imigram injections. You can use much less and still stop your attacks. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ For shadows, many people find that ginger helps. You can take it in capsules, or brew tea, or eat ginger candy or drink (non-alcoholic) ginger beer. Given what you have said, I can't see why you wouldn't try Emgality. However, we have a lot of experience here that when people say they have "tried" things, very often they have not tried them in the most effective way. Often, for example, they are prescribed wrong. With verapamil, for example (which you don't list but which I assume you must have tried), an effective dose might have to be 960mg or higher, and very few doctors prescribe at that level. From what I have seen, lithium and verapamil can be effective (with side effects) when they are prescribed at the right levels. The same rule is true for non-prescription items. People often say here that they have tried psychedelics, but they haven't done that according to the most reliable protocol -- every five days, at a high enough dose, with no "blockers" such as triptans. I'm not saying that you didn't do busting correctly or you didn't do the full vitamin D3 regimen correctly -- I have no way of knowing. But because those things are very helpful for most people, I am just suggesting that you be sure you did them right. Since you say you have tried "everything," I'm not going to start suggesting things just because they are not on your list. I think ketamine is more commonly used these days than it used to be, so maybe that's new enough to mention, and some people report getting relief from nerve blocks. There probably are other "newer" things that I haven't thought of.

Goadsby led the gold-standard clinical trial of oxygen, for which we can all be grateful, and he seems to be a leader in pharmaceutical treatments for CH, but he indeed has been hostile to busting. It will be nice when clinical studies prove him wrong.

That won't be enough, probably, and it is strongly believed that the cofactors (calcium, zinc, etc.) are important. The post I linked you to in my original post has a link to details about the D3 regimen that is used here. Just FYI, you can look up many things here using the search bar at the top right of every page. For some things, such as D3, there might be so many entries that it's a bit overwhelming.