CHfather

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.

Since you're new to it, this overview might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/. At the end of that post you can read the basics about busting, which is why this site was originally created. How much D3 are you taking, and are you taking any other supplements with it (calcium, for example)? Yes, that's how it works for most people. That's one very good reason to optimize the resources you do have (D3, oxygen, triptan) and be sure you know what else is available to you.

@Sub There's a discussion of shadows toward the end of this document: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Ginger is often very effective. In addition to the ginger items discussed there, some people take ginger capsules. @Shaun brearley wrote recently: "I take 2 ginger capsules every day even out of cycle, Organic root ginger 1100mg each capsule, can order them on amazon." (Since you mention that you're new to CH literature, other sections in the link above might have some helpful info for you.) You can look for other posts about shadows (as devonrex says, there are lots of them) by putting the word into the search bar that is at the top of each page.

There's a list of food triggers here: https://clusterbusters.org/forums/topic/4568-triggers/. This is the first time I remember a mention of cooking oil.

Can't comment on the mechanical aspect (the fluttering), but I would say that iIf you are saying you're doing, or aiming at, 30 in/out cycles per minute, which sounds to me like hyperventilating, I'd say that's not the typical way of doing it. If that works for you, I'm surely not going to tell you it's wrong. The more typical model is deep inhale/hold a second or two/full exhale with crunch to expel as much air as possible. (Here, too, people discover variations of the tempo that works best for them.) I think I do remember seeing @Racer1_NC demonstrating and kind of fast inhale/exhale in a video . . . so I could be wrong about how common that method is. Batch, another oxygen expert, reccomends ten 3-second very deep/forceful in/out cycles with room air, followed by a deep inhale of the pure O2 and holding it for 30 seconds with a crunch exhale, and then back to the room air hyperventilating for 30 seconds, then back to O2 from the tank, etc.

The general belief here these days, I think, is that verap at 360/day or less surely will not completely block busting, and might not interfere at all. At 480, it is believed to get more iffy. Because for a long time verap was an absolute no-no, we don't have a lot of data about all this, but it seems reliable. (Also, of course, CH/busting are not exact sciences to begin with, and also, I think fewer people are using verap, relying on the D regimen to do the preventive job.) Just a note: It has been recommended by Batch (known here as xxx) to be sure to separate the calcium in the D3 regimen by at least 6 hours from taking verapamil, becuse verap is a calcium channel blocker. Sure, you can bust before sleeping. I'll leave it to the greater experts to comment on the practicalities of this. MM dose recommendation these days is typically 1 - 1.5 grams of dried shrooms. The key issue is to be sure you get enough, since there is no real way to tell whether that has happened (slapbacks suggest that you got enough, and a light trip or a more serious trip also indicate that you got enough). If you're comfortable with MM tripping, I think most people would suggest that you start toward the higher end of the range. If you're not comfortable with tripping, you can either just do it anyway (with safeguards making a good trip more likely -- set and setting, and maybe some kind of sedating medication), or you can start lower. I keep harping on the fact that in the early days, this was the recommendation: "the range for a cubensis dose will be from about 0.5 grams to 1.5 grams. With more powerful species such as Psilocybe azurescens or Psilocybe cyanescens, a quarter or half a gram will be enough." (https://clusterbusters.org/forums/topic/683-4-the-psilocybin-mushroom/) Those pioneers were not making this stuff up, but unlike today, they were more concerned with minimizing tripping (and the early research articles invariably referred to a "subhallucinogenic" dose as being sufficient). I think today's recommendations are higher for the reason I stated -- being sure you got enough so you don't "waste" a dose, with less concern about whether or not there's a trip. But the trip is not therapeutic; it's a side effect of the therapy. That's why I favor RC seeds. You can read more about busting protocol (and RC) by clicking on "New Users -- Please Read Here First" within the blue banner near the top of each page.

In the "Treatment of Cluster Headache" that document he created for the American Headache Society, Dr. Goadsby says "1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach." That was a few years ago. The 2023 European Academy of Neurology treatment guidelines for CH, of which Goadsby was one of the authors, refer to "the use of at least 100 mg prednisone (or equivalent corticosteroid) given orally." (I can only see the abstract of this article so I don't know what the taper is.) In a 2020 study, patients were given "100 mg oral prednisone for 5 days followed by tapering of 20 mg every 3 days," so that's 18 days. Another study in 2021 used that same protocol. A comment on one of those studies mentioned "historical ambiguity about the optimal oral corticosteroid dosing regimen." But maybe the higher initial level and/or longer duration than a typical approach is what is being used now. As with many other treatments for CH (including busting), maybe the dosages creep up as people decide to throw more at this condition than they might otherwise have considered at first. Sorry that busting isn't working for you this time!!!!! Have you considered switching substances (from MM to L or seeds, for example), which does seem to help many people?

A good reminder. Thank you.