CHfather

I've never known of anyone to use liquid oxygen. I do know that a lot of people use oxygen gas for glass blowing, and I think that would be the same as welding oxygen. Obviously, you want oxygen of a high purity level for inhaling. If you have a regulator, what you want is a non-rebreather mask. They are very inexpensive. There is a better mask, made for people with CH, but frankly if you can get a non-rebreather mask right away -- if you're a member at amazon prime, for example -- I would try that. This one looks fine to me: https://www.amazon.com/Medsource-No-Model-Non-Rebreather-Oxygen/dp/B004Z8V47G/ref=sr_1_1_a_it?ie=UTF8&qid=1499034891&sr=8-1&keywords=non-rebreather+mask I love Twisted-Melon's posts . . . and I think his advice here about dosage is good. But not everyone, including very dedicated busters, has had the success he has had. In my view, you should definitely start the D3 regimen, and look into a pharma preventive. Verapamil doesn't seem to interfere with busting, although it was believed at one time that it did.

This is very courageous of you. It will pay off. Why are you waiting until Tuesday morning? Five days from 2am on Wednesday would be Monday morning at 2am. I don't think most people would recommend ingesting while you're having an attack. It does sometimes happen that people get attacks after ingesting. Not much you can do except ride that out. There's always a danger of what are called slapbacks -- attacks after a dose that can be stronger or at different times than usual, or both. And it's not likely that one dose is going to end your cycle, although sometimes it does. Why don't you have oxygen (as a side note, I have to say it breaks my heart every time I have to ask this question)? Do you also not have a pharma preventive such as verapamil? Are you doing the D3 regimen? You probably should be. Have you tried an energy shot such as 5-Hour Energy at the first sign of an attack? Often it will reduce the severity or sometimes even abort. Some people find that standing with their feet in very hot bathwater helps abort an attack. Melatonin taken at night, starting at about 9mg and working up, can reduce attacks and attack severity for some people. Wishing you the best.

Some folks find that melatonin at bedtime, starting at about 9mg and working up, reduces their nighttime attacks.

We understand the challenge of doing the reading. The thing about the D3 regimen is that while it's pretty straightforward once you get it, it can be a little complicated at first, and you have to make the decision about the "loading" process, so you have to read and then ask questions if you have them. You might have said this already, but do your CH attacks come at night, or typically at a particular time of day? Remember that welding oxygen is a viable alternative for medically-prescribed oxygen.

5k IU is a low dose of D3, which almost certainly won't help you in the short run (or maybe the long run, either). Are you able to see the D3 file that we've linked you to? 10k IU/day is pretty much the minimum, but the early "loading" protocol is much higher than that. It's also important to take all the elements. You might be surprised to know that a 2-ounce 5-Hour Energy has considerably more caffeine in it that the 16-ounce Monster Zero (or almost any other 16-ounce Monster). Caffeine is what you're after, plus taurine, so here's hoping . . .

Good for you for ordering express post on your seeds. Takes forever, otherwise. With 100 RC, you might have to switch to the HBWR for a third dose. Here's the problem, which you probably should have been alerted to before: You will have to stop taking the Imitrex. At least it is very strongly believed that Imitrex will block busting. That's why O2 is so important. Some people wonder whether Imitrex actually will block busting, but it's been an article of faith here for a long time that it will. You could try, I think. Here's hoping (a) your cycle just ends soon; (b) the energy shot helps you (some people like them as cold as possible); (c) the D3 regimen kicks in fast (it sometimes does); and/or (d) you get O2 soon. Any chance you can borrow some equipment from your former volunteer FF associates?

Did you really mean chocolate, MG? Wondering because I know that's a trigger for some people. When C'M gets to processing the seeds, we will definitely refer him to your recipe!

If you're going to go LSA, you probably want RC (rivea corymbosa), which is generally easier to work with that HBWR. Two places considered reliable suppliers of both are www.tranceplants.net and www.iamshaman.com. I'm hoping that by the time you receive them, you won't need them anymore. The file that THMH referred you to is a little conservative about quantities, so please check back with us. There are instructions here for a more complicated extraction using HBWR. Are you not taking a pharma preventive for the migraines? (Verapamil is usually what is used first.) Have you looked into sites like goodrx.com for lower prices on prescription meds? I think you should give the vitamin D3 regimen a good try. Apparently it's very helpful for migraine as well as CH. https://clusterbusters.org/forums/topic/1308-d3-regimen/ Try chugging an energy shot, such as 5-Hour Energy, at the first sign of a CH attack. The caffeine, plus the taurine, helps a lot of people. To abort CH attacks, the most important thing to have is an oxygen setup: tank, regulator of at least 15 liters per minute, and non-rebreather mask. Doctors can and should prescribe this, since it's the #1 medically recommended abortive. But often they don't. Many people with CH (maybe 15-20 percent) set up their own O2 systems using welding oxygen and purchasing the regulator and mask online. Yes, these things cost $ (an initial investment of ~$200), but oxygen is the life-saver for virtually everyone with CH.

capsaicin is the ingredient that is used in this nasal thing. you can buy capsaicin sprays and creams at a pharmacy. be sure you get the nasal spray or a cream that's meant for the nose, not the body -- i think the topical ones are stronger, and not meant to go in your nose. warning: while this helps some people, others are quite miserable with having a burning hot nose in addition to a CH attack. If you click on the screen name of the person you want to send a message to, you'll get a screen that has "send message" as one of the options. or, at the top right of the page there's a thing that looks like the back of an envelope. if you click on that, it opens the private message process. Would you mind listing what you are doing now for your CH? I get that you're going to do the D3 according to Batch's instructions, so you don't need to list that, but otherwise, all medications you're taking with amounts, and any supplements. Do try spiny's suggestion of the energy shot or drink at the very first sign of an attack. 5-Hour Energy is a good choice: even though it's smaller than the energy drinks like RedBull, it actually has more caffeine and taurine.

Thank you for the update, Anita'. I'm sure I'm not the only one who wonders how things are going with you two. I suppose it could have been GammaCore that he got. That's a hand-held device that is used on the vagus nerve, at the neck. There were some clinical results that GammaCore had some effectiveness as a preventive, though it's mainly an abortive (something I guess he might be able to try instead of the oxygen, if he keeps resisting the O2), so I'm not sure what one use of it would have done for him, or would have been expected to have done for him. Wishing you the best.

Jimmy', I'm afraid you're pretty far off from Batch's recommendations. If you go just a little way down the page here -- https://clusterbusters.org/forums/topic/1308-d3-regimen/ -- you'll see a table that lists the ingredients. I have been told that it's very important to follow them closely. Thank you for your empathy. Yes, it's my daughter who has CH, and it is very hard as a parent to know what she's going through. Before she was correctly diagnosed -- so she had no oxygen and no effective meds or alternative treatments -- I sat up with her for many nights during her hour-long untreated attacks. You don't forget that. Like pretty much everyone with CH, she's amazingly strong and courageous.

Jimmy Martinez -- It could be that a complete lifestyle change of the sort described in the thing you quote might help with CH. But I would be very cautious about accepting that person's opinion, for two main reasons. First, and most important, it doesn't really sound like s/he has CH. Read the symptoms. Aside from the stabbing pain and red eye, there's no CH there. Second, if CH is caused by muscle tightness, it's odd (unexplainable, really) that it affects people in the way it does: at particular times of day; particular times of year, etc. I suppose it's possible that the onset of CH might cause the kind of muscle issues described here, but it's a huge stretch to consider that the "cause." There are other things, too, but that's enough for me to be very doubtful.

Big Hitter, to ask again -- Are you doing the D3 regimen? https://clusterbusters.org/forums/topic/1308-d3-regimen/ It can make a huge difference. Back when you were getting rebounds from oxygen, were you staying on it for 5-10 minutes after the attack had been aborted? And were you combining it with an energy shot such as 5-Hour Energy? And was your O2 system and breathing strategy optimized? I've read a lot about these rebound attacks over the years, and there's a report of them from 2011, which almost certainly was not conducted with what we know today to be the best system (high-flow regulator, top-quality mask, and hyperventilation). In what I have read here and at ch.com, many people overcame that rebound effect with one or all of the things I just mentioned. Just a thought. Yep.

Denny is generally correct, but there are some studies that show that CH is sometimes responsive to indomethacin. Here's one abstract (below). So, it could be that since you seem to be someone who has been "refractory to the usual therapy for CH," your doc is giving you the indomethacin to see what happens. If it works, no matter what condition you have (CH or one of the lookalikes), you've learned something valuable. Note what's in the conclusion about time and dosage for CH patients. Indomethacin is hard on the gut for most people. It's often prescribed along with something protective. As I say, there are some other publications that also mention indomethacin sometimes working for CH. From: http://journals.sagepub.com/doi/abs/10.1177/0333102409357642?journalCode=cepa Introduction: Response to indomethacin is an essential feature for the diagnosis of both paroxysmal hemicrania (PH) and hemicrania continua (HC). Cluster headache (CH) is widely considered to be a disease unresponsive to indomethacin. Case reports: We report four patients with CH who responded to indomethacin. Two patients, who were refractory to the usual therapy for CH, fulfilled the criteria for chronic CH. Conversely, two patients had a history of episodic CH and showed response to both indomethacin and the usual therapy for CH. Literature review: We also reviewed the literature for the presence of indomethacin response in patients with CH. We noted a large number of cases labeled as CH by the authors which showed a response to indomethacin. Discussion: Many cases of definite or possible CH were wrongly labeled as PH because of patients' responding to indomethacin. Conclusion: The response to indomethacin in patients with CH may not be as immediate as in other indomethacin-responsive headaches, and many patients may need larger doses.

Thanks to Batch, we have come to realize that there is definitely a connection between pollen/allergies and CH attacks. Could be that the Benadryl is helping a lot (or the shot . . . or, of course, who knows what). I think generally people who take Benadryl at night (particularly two of them, as you're doing) skip the melatonin. But agin, if you can handle the morning grogginess, maybe you don't want to mess with success.

Arch Arch', just some thoughts, which are not really disputing your main points. There is a clinical trial of the effects of psilo on CH taking place now, at Yale Medical School (thanks to ClusterBusters). https://clinicaltrials.gov/ct2/show/NCT02981173 There might be some errors in what I'm about to "report" about BOL after the initial trials, but it is basically accurate. Around 2010, a US company, Entheogen, patented BOL for CH and purchased the temporary rights to it (it's owned by a university, Harvard I think, if I have the facts right) for a specified period of time (5 years?). Then Entheogen tried to raise the many millions of dollars it would need to do real clinical trials of BOL and bring it to market. I think their main strategy for trying to do that was to partner with a established pharma companies. (The first trial of BOL -- also sponsored by ClusterBusters -- was very important, but it was far from being a true clinical trial of the type required to license a drug.) We were often told that Entheogen was on the verge of raising the money, but it never happened, and then its license on BOL expired. The cost of clinical trials is staggering in itself, and add to that the possibility that they might not be approved because of the LSD content of BOL. So, technically, it's true that the pharma companies didn't see how they could ultimately profit enough from BOL to pursue it. I guess it's important to remember the extent to which CH is "under the radar" in the medical world, because I suspect part of the issue would have been, even if BOL got accepted by the FDA, you'd then have to get doctors to correctly diagnose CH in the first place and then know to prescribe the BOL. When you think of how few doctors even seem to know to prescribe oxygen, that seems like it could be a big issue requiring a very costly campaign to educate the doctors about a condition they very rarely see (plus, you would have, like it or not, the problem of doctors not wanting to prescribe something with LSD in it). I feel like all the combined factors led pharma companies away from wanting to develop a treatment for CH. I have a long-time friend, my golf buddy of 20 years, who developed a miraculous drug to combat depression. It works when it is first administered, has no side effects, and treats even the worst depression. It has been in clinical trials for more than six years now, at a cost of hundreds of millions of dollars. And that is even after the FDA gave the drug "fast track" status because the early clinical trials were so impressive. My friend's company was bought by a very big pharma company, Allergan, for about 850 million dollars, and Allergan is now trying to bring the drug to market. Expected to be available in 2021! (The drug is called rapastinel. You can look it up. Here's one recent quote about it from a news story: >>Saunders described Rapastinel, which is under development for the rapid onset action for the treatment of depression, as one of his "personal favorites." The company expects Rapastinel to launch in 2021 with $1 billion to $2 billion in peak sales.<< ) So it's a darn tough road to get a drug to market. (Final thought about rapastinel: It works on the same receptors that ketamine works on, but without ketamine side effects. I am vaguely hoping that since ketamine treats CH, maybe rapstinel will, too.)

chuck', on the previous page of this thread, third post, there's contact info. https://clusterbusters.org/forums/topic/4773-the-jesus-shot/

Unfortunately, yes, flying can often trigger an attack. I wouldn't think that a sumatriptan injector would be refused. It's clearly medical, and it's below the limit for liquids. Maybe others have had a different experience. Once they get past security, a lot of folks pick up a 5-Hour Energy or some other energy beverage to bring with them. Even knowing that it's possible that they will suffer an attack on the way to the conference or home from it, a lot of people come back to the conference year after year. That's how valuable the information is -- and, just as importantly if not more importantly, how valuable the experience is. (Denny's suggestion that you consider growing your own medicine is important to consider. There a cases where one busting agent might not work, but another one does. Having an alternative is a good thing.)

You get RC seeds legally, and possess them legally, by ordering them from a vendor such as www.tranceplants.net or www.iamshaman.com Has he made any progress toward re-trying O2 or starting the D3 regimen? And have you considered the Chicago conference? I feel like that might be the most valuable thing he could do.

Thanks, Arch . . . Did the original Clustermax come with a breathing tube that you could use separately from the mask? (I know the latest iteration, the "ClusterO2 Kit," does. Seems like that might be best of both worlds. But then again, if you're aborting in a couple of minutes, there's probably no reason to find out!

You're the best, Moxie. Glad to read all this. Very interesting that you're microdosing.

Jimmy', I'm with everything these two brilliant moderators have suggested, and emphasizing that no matter how good your neurologist is, it's unlikely that he has studied the D3 regimen, which is fact has been a side-effect-free "game changer" for at least 85% of those who have done it properly (followed the regimen as prescribed). If it's a high pollen season in LA, I'd consider trying Benadryl morning and night (at the dosage recommended on the container) and skipping the melatonin for now (since Benadryl already makes you sleepy). If not, go for the melatonin. You mention "oxygenated water" and I'm not sure where that comes from. You weren't referring to energy shots or drinks, were you?

Verapamil/triptan verapamil/zomig seems like a very common prescription. No negative verap/zomig interaction identified at www.drugs.com. I guess you could call your local 24-hour pharmacy to be like quadrupally sure.

At least the doctor he likes isn't crazy: the prescriptions are sensible. During a cycle, many people need as much as 960mg of verapamil, and I think -- spiny, please correct me if I'm wrong -- that it's generally been observed that the short-acting verapamil is more effective than the extended release. Or it's the other way around! spiny or someone else will clarify. We get that he's doing what he can, and it is important to know that it's widely believed that extensive use of Imitrex will make subsequent hits worse and more frequent, and make cycles longer. Oxygen is the way to beat that -- abort with O2 and you need a lot less trex. But we also get the reluctance to get hopes up and then be disappointed. That's one of the cruelest things that CH does to many, many people. As spiny says, attending the conference could be a great thing for him (and you). Here's a final refrain that you might have read here. If O2, properly tried, doesn't work, then it's possible that he doesn't have CH. Really, "properly tried" is nothing fancy. If he had tanks, a regulator that goes up to 15lpm (or maybe even 12 lpm), and a non-rebreather mask, and there was nothing functionally wrong with the system, in my opinion he should have felt some relief from O2. So you do want, I think, to consider the possibility that he has a CH "lookalike," most likely some form of hemicrania. We've had a few people here who were diagnosed with CH who actually had hemicrania continua (HC). The good thing about that is that it's treatable with a medication called indomethacin. Maybe you might look into HC and it might be something to be suggested to his doctor.

Anita, will you say what meds he's taking, and at what levels? He has oxygen? Is he doing the vitamin D3 regimen, which you can read about here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ The D3 regimen has been very, very helpful for a lot of people. And is he willing to try busting (ending cycles and preventing new ones using psychedelic substances, potentially at levels that cause no psychedelic effects at all)? Many people have come to this site feeling that they were out of options, and busting has given them their lives back. You can read about busting in the numbered files in the ClusterBuster Files section.