CHfather

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.

I think spiny is right that there's no harm in trying indomethacin, mostly because the ineffectiveness of oxygen at least suggests that it could be something other than CH. Like CH, hemicranias are tricky -- sometimes they respond to CH meds such as triptans, and other times they don't.

Have the people who deliver your O2 set it up for you and, if they know, show you how to use it. (They probably are just delivery people who won't know how to use it, but do have them set it up, so you can be sure it's working properly.) You might want to call them and check on what they intend to bring you. Most medical oxygen suppliers have very little experience with CH patients, and the prescription is often very general and vague. You should get at least one large tank (an M or H tank), about 3' tall, and at least one smaller tank (an E tank), around 2' tall. The smaller one is for portability -- taking it in your car, for example. The taller tank uses a different regulator than the smaller one. The regulator(s) should be at least 15lpm -- you could ask whether they have a 25lpm one. And you should be getting at least one non-rebreather mask. (Prescriptions do typically specify lpm and mask type.) You do not want a concentrator -- a machine that makes O2 out of room air, and you do not want nasal cannula. Often, they'll bring just one or two E tanks, each of which lasts less than 45 minutes. It will be easier for them if they bring you at least one M or H tank, so they don't have to keep coming back to resupply you. And you might see whether they're planning to bring you a stand for the tanks, or at least for the big one. Some of this stuff will of course add to your bill or co-pay. Since maybe your cycle is passing, you might want to just get the basics now so you're not paying for things you don't need right now.

Recommended doc list: https://clusterbusters.org/cluster-resources/

So, I'm doing some guessing here. Zembrace seems to be 3mg of sumatriptan in an autoinjector. The typically prescribed injection med for CH is Imitrex, which is also sumatriptan but comes in a 6mg injector. Then people often take apart the injector and give themselves either 2mg or 3mg injections. So I'm saying that one way to look at it is whether Imitrex would be cheaper for you if you got the injectors and then took them apart. I looked at www.goodrx.com, which is a discount program for pharmaceuticals, and the prices there for Zembrace seem astronomical. It's not like Imitrex is inexpensive . . . You can also have vials of sumatriptan and syringes prescribed and create your own doses. Again, I'm sorry that I just don't know what the cost of that would be. I would say that you could discuss these options with a pharmacist who could probably help you figure out what might be best. Finally, at zembrace.com there's some kind of discount card, but I couldn't make sense of what the deal is. With all that said . . . You really want to be aborting attacks as much as possible with something other than triptans (there's research and experience saying that triptans extend cycles and create rebound attacks). In particular, you want oxygen. You really, really want to have oxygen. And most folks here would strongly recommend that you try the vitamin D3 regimen that is described in the ClusterBuster Files section of this board. Finally, 480mg of verapamil can be a relatively low dose for people who are in cycle. Up to 960mg is acceptable according to the medical experts.

Regarding the trex injections, yes they are typically 6mg (although there is a 4mg version). Info on breaking into the autoinjector is in the file "Extending Imitrex," which is on p1 or p2 of the ClusterBuster Files.

Ginger tea or authentic ginger candy are known to help some people with shadows. Best way to make the tea, in my opinion, is to boil some cut-up pieces of ginger, though some use powdered ginger (which you have to keep stirring to mix well). The recommended kind of candy (available at amazon) is made by The Ginger People. Ginger beer/ginger ale, too: Reed’s Extra Ginger Brew, Ginger People’s Ginger Beer, Natural Brew Outrageous Ginger Ale or Blenheim 1903 Hot Ginger Ale. Next I'm into "I think" territory, but I think energy shots, such as 5-Hour Energy, help some people with shadows, and I think oxygen is very helpful for some people, too. You might look at Bejeeber's post near the end of this thread, and possibly Cenzo's at the top of the thread, for an additional idea or two. https://clusterbusters.org/forums/topic/4968-newbie-ch-relief-with-your-thumb/#comment-51941 Another poster (urs) has said white tea got rid of his shadows. He said this about white tea: >>white tea differs from all the others. the same leaves are sun dried but NOT fermented or even further processed<<

Alex, I don't think there's been much progress on pharmaceutical preventives. The in-cycle standard for verap can be twice what you're now taking (960). You should check out the vitamin D3 regimen in the ClusterBuster Files section here as an excellent potential long-term preventive or at least reducer of hits and severity. If you used oxygen as an abortive 13 years ago and it didn't help, please note that we have learned that higher flows and the mask specifically designed for CH (and some other strategies) make O2 effective for practically everyone who who uses it these days. A bunch of other smaller tactics that help have been identified, mostly by the "citizen scientists" at sites like this. Quickly drinking an energy shot at the first sign of an attack; taking melatonin at night, starting at about 9mg and working up; taking Benadryl (recommended dose) morning and night during high pollen seasons (not Benadryl and melatonin, though) . . . High pollen seems to exacerbate CH. And of course, there are many here who will tell you from experience that busting is the best preventive/cycle-ender.

Would love to hear next that you are trying something that is helping you (or that you're considering something and have some questions). That's what we're here for.

No oxygen??? (You don't want to use meds, that's your business. But oxygen is so benign and effective.) Have you tried the D3 regimen (in the ClusterBuster Files section)? Please let us know how your taper goes. Good luck.

There are people with CH who have obtained SSDI disability. For most, it was a multi-appeal, multi-year process, but I gather that some got it pretty quickly. No kind of headache is specifically covered by the SSDI guidelines. The Budget Director of the Trump administration said just within the last few days that he'd like to see more people thrown off disability (the ones that "don't deserve it," of course). You can get the basics here: https://www.ssa.gov/disabilityssi/ Lawyers who handle disability cases can't charge you, except for basic things like copying, unless you win your case. In previous discussions of this here, some people have said handling your case yourself is the only way to go, and others have said they were glad they had a lawyer. I remember one or two saying they were glad they had an experienced local lawyer who knew the judges who rule on these cases. There are many big law firms that do mostly disability cases. Since it's free to ask, you might consider calling some to see what they advise you. I have figured that because of the payment situation, they might not want to take a case they don't feel confident of winning.

I feel no hostility at all toward you, not one drop. I am trying to be helpful, and you do seem to be deflecting that, which is now making me a bit frustrated. I assumed that before telling me to google "vitamin d3 regimen injections" you would have made sure of that, but in fact that search discovers not one single reference. I'm not saying you didn't have D3 injections; I'm not even saying that you didn't do the actual D3 regimen or some version of it. I have no idea. But all you have to do is look at the file that I've referred you to. If it really is the same as what you've done, then clearly I'm wasting your time. If it isn't, you might consider it. You came here interested in busting (treating attacks with psychedelics). I've told you where to find references at this board to busting, and suggested that you get back to us after you've looked them over. That's still my suggestion. Because of the background conditions that Jeebs and I have mentioned, I'm not going to tell you to just go for it, and I'm not going to try to stop you.

I'm surprised that more people here aren't a little crabby, given what they live with. I wish you had a solid, reliable diagnosis. I'm only saying that some things that are at the top of the list for CH, such as inhaled oxygen, don't work for migraine, and even for the more common condition, migraine, lots of neurologists do lots of weird prescribing and people never try the core preventives and abortives. As I have said, pretty much everything you need to know about treating "headache" conditions with psychedelics is in the numbered files in the ClusterBuster Files section. Many people have found that that treatment also helps migraines. If you decide to try that method, given the cautions that have been suggested, you might get some further advice here. And I'll say again that the D3 regimen, which has the additional advantage of being legal, has been very helpful for people with chronic "headache" conditions. (I put "headaches" in quotes because these horrible things that you are suffering and the people here suffer ain't "headaches" in any real sense.)

Junco, I was really specific, carefully so, that I wasn't criticizing you. In part, my observation (as I said) had to do with misdiagnosis, because we have had some people come here with cluster headache diagnosis for whom "nothing worked," because they were being treated for the wrong condition; typically, they had some form of hemicrania, but on other occasions it was other things. Beyond that, yes, I was suggesting that after six years of reading about cluster headache treatments, I have found that there are pharmaceutical and also non-pharmaceutical treatments that have not been tried by people who believe they have "tried everything." How much of that applies to migraine, I can't really tell you, because this is a cluster headache site, and that's what I know about, except from the relatively small number of people who discuss migraines here. And how much might apply to you, I of course have no idea. Melatonin, magnesium, octreotide, certain antidepressants, licorice root, kudzu root, pasireotide, lithium, topamax, gabapentin, low histamine diet, masturbation, sometimes indomethacin. on and on . . . all things that have helped some people some of the time with cluster headaches. I have to keep emphasizing cluster headaches. Heck, some proportion of the people who come here thinking they have "tried everything" haven't had effective oxygen, which is the #1 medically recommended abortive for CH. The vitamin D3 regimen, which as I said you can actually read about in the ClusterBuster Files section, is not "vitamin injections."