CHfather

Thank you, Joy'. Rozen is a serious CH researcher. Seems like a strange hypothesis to me, but he knows more than I do. I don't even know what the first principle means -- "the need of double lifetime tobacco exposure" -- but I guess I might understand it if I read the whole document. Appreciate your posting this.

Thank you for all this, Sam'. Too technical for me to understand, since I don't need it, but worth understanding for anyone who does need it and for whom it's the best alternative. I'm inclined to think that welding O2 is a simpler way to go, but again, for some people maybe not. It's not clear to me how you get the tank filled with pure O2, but maybe that's your next topic. Or are you saying that you used "an O2 cylinder" (as you say in your post) and not a SCUBA tank, and attached a SCUBA regulator to that? BTW, in case it isn't six years before your next cycle, are you considering the vitamin D3 regimen? You probably get a lot of sun in your job, but it still might not be enough to prevent or treat cycles: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

We'll hold good hopes for the ketamine. There are people here who have it prescribed as something they take regularly. If you put the word ketamine into the search box at the top right of the page, you'll see some of those. I think that if you put the words ketamine and ricardo into the box, you'll find a report from one of the long-time members here. Regarding O2, you can get a mask that allows him to breathe through a tube, so the nose isn't involved. Many people do it that way. It's also just a better mask system, made specifically for CH. Our very strong overall experience is that people who have found that oxygen didn't help much did a whole lot better with a higher-flow regulator and a better mask (and sometimes with better breathing technique). If you think about looking into this more, let us know.

You might get some responses here. The hot spot for DALT talk historically has been the Facebook group called "Cluster headaches (trigeminal autonomic cephalagia)." Just checking over there now, it seems a lot less focused on DALT than it once was, maybe because DALT is much harder to acquire than it once was (as I understand it). That's a closed group, so you have to apply for acceptance, but in the past that has happened pretty quickly.

Thing about the redneck bag is that it doesn't really solve the no-mask problem. But it does mean you use the O2 less often, and that might mean the mask is less important and you can get what you need in the short run from the cannula tubing. Batch's recommended hyperventilation approach is described in the redneck bag entry. Basically, it's ten 3-second inhale/exhale cycles using room air, then a deep inhale of the O2 that you hold for 30 seconds and exhale forcefully; then ten more 3-second inhales/exhales; then back to the O2. The 3-second things are a deep quick inhale followed by a forceful exhale (forceful exhale would in all cases include a stomach "crunch" to get as much air as possible out of your lungs). Batch has some cautions and indicators in that file, which you should look at.

Also . . . Are you trying cold 5-Hour Energy shots at the first sign of an attack? (Maybe you've already answered this.) Did the doctor prescribe any Imitrex? Do you know what type of Verapamil you're on? Many people say the fast-acting (as opposed to the timed release) works better for them? What's your dosage? Is he going to monitor you and raise the dosage?

If you have Amazon Prime, or probably if you pay extra for fast shipping, you can have this mask (or one like it) in a couple of days: https://www.amazon.com/MEDSOURCE-Adult-Non-Rebreather-Oxygen-Mask/dp/B004Z8V47G/ref=sr_1_3_a_it?ie=UTF8&qid=1532090532&sr=8-3&keywords=nonrebreather%2Boxygen%2Bmask&th=1 Also, I think you can remove the cannula end and suck O2 from the tube, or maybe just suck it from the cannula (???) I'm pretty sure I remember someone talking about that. Not ideal, but maybe it would work. I have also read of some people getting masks from local medical supply stores. Might be worth a couple of calls. I also remember someone going to a firehouse where there were also EMTs and asking for a mask and getting one. Good for you!!! Needless to say, your O2 supplier is disgraceful, and probably should be reported to some state regulator ….

This is evidence that the new monoclonal antibody treatment for migraine, which is an antagonist of CGRP, ought to also be effective against CH. CGRPs induce CH experimentally, suggesting that they are factors in bringing on CH attacks; if they are counteracted, it should prevent/help prevent attacks. Effect of Infusion of Calcitonin Gene-Related Peptide on Cluster Headache Attacks: A Randomized Clinical Trial; Vollesen A, Snoer A, Beske R, Guo S, Hoffmann J, Jensen R, Ashina M; JAMA Neurology (Jul 2018) Tags: calcitonin (human synthetic) calcitonin (pork natural) calcitonin (salmon synthetic) Migraine Read/Add Comments | Email This | Print This | PubMed | Get Full Text Importance Signaling molecule calcitonin gene-related peptide (CGRP) induces migraine attacks and anti-CGRP medications abort and prevent migraine attacks. Whether CGRP provokes cluster headache attacks is unknown. Objective To determine whether CGRP induces cluster headache attacks in episodic cluster headache in active phase, episodic cluster headache in remission phase, and chronic cluster headache. Design, Setting, and Participants A randomized, double-blind, placebo-controlled, 2-way crossover study set at the Danish Headache Center, Rigshospitalet Glostrup, in Denmark. Analyses were intent to treat. Inclusion took place from December 2015 to April 2017. Inclusion criteria were diagnosis of episodic/chronic cluster headache, patients aged 18 to 65 years, and safe contraception in women. Exclusion criteria were a history of other primary headache (except episodic tension-type headache <5 days/mo), individuals who were pregnant or nursing; cardiovascular, cerebrovascular, or psychiatric disease; and drug misuse. Interventions Thirty-seven patients with cluster headaches received intravenous infusion of 1.5 μg/min of CGRP or placebo over 20 minutes on 2 study days. Main Outcomes and Measures Difference in incidence of cluster headache-like attacks, difference in area under the curve (AUC) for headache intensity scores (0 to 90 minutes), and difference in time to peak headache between CGRP and placebo in the 3 groups. Results Of 91 patients assessed for eligibility, 32 patients (35.2%) were included in the analysis. The mean (SD) age was 36 (10.7) years (range, 19-60 years), and the mean weight was 78 kg (range, 53-100 kg). Twenty-seven men (84.4%) completed the study. Calcitonin gene-related peptide induced cluster headache attacks in 8 of 9 patients in the active phase (mean, 89%; 95% CI, 63-100) compared with 1 of 9 in the placebo group (mean, 11%; 95% CI, 0-37) (P = .05). In the remission phase, no patients with episodic cluster headaches reported attacks after CGRP or placebo. Calcitonin gene-related peptide-induced attacks occurred in 7 of 14 patients with chronic cluster headaches (mean, 50%; 95% CI, 20-80) compared with none after placebo (P = .02). In patients with episodic active phase, the mean AUC from 0 to 90 minutes for CGRP was 1.903 (95% CI, 0.842-2.965), and the mean AUC from 0 to 90 minutes for the placebo group was 0.343 (95% CI, 0-0.867) (P = .04). In patients with chronic cluster headache, the mean AUC from 0 to 90 minutes for CGRP was 1.214 (95% CI, 0.395-2.033), and the mean AUC from 0 to 90 minutes for the placebo group was 0.036 (95% CI, 0-0.114) (P = .01). In the remission phase, the mean AUC from 0 to 90 minutes for CGRP was 0.187 (95% CI, 0-0.571), and the mean AUC from 0 to 90 minutes for placebo was 0.019 (95% CI, 0-0.062) (P > .99). Conclusions and Relevance Calcitonin gene-related peptide provokes cluster headache attacks in active-phase episodic cluster headache and chronic cluster headache but not in remission-phase episodic cluster headache. These results suggest anti-CGRP drugs may be effective in cluster headache management.

tim', Gotta say that I had the same reaction as jon', including the sense that you obviously have had to work hard and endure a lot to arrive at your current cocktail, so maybe it's the best there is for you. But I hope you get another opinion. It's hard for me to imagine, for example, what that very small dose of verapamil is doing for you in the face of that large dose of lithium. Many people here have found that the vitamin D3 regimen is as effective, or more effective, than any pharma preventives. Some take verap along with it. And you might know about "busting" (the reason for the site's name), which involves using psychedelics (sometimes at levels where there are no "trip" effects) to treat and prevent CH. Like jon', I'm just sayin . . . . D3: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Info about "busting" is in the numbered files in the ClusterBuster Files section.

Ms A', what are you doing right now for your CH? You said in a different post that triptans didn't help you. Was that in pill form, or as a nasal spray or injectable? Do you have oxygen at home now? There's a lot you can do for yourself without a physician, for example the D3 regimen, but other strategies, too. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

I don't think they can legally refuse to provide it for that reason. O2 is a medically recommended and clinically proven treatment for CH. Call Humana. The process of fighting with insurers isn't fun, but I'd at least give it a serious shot. I'd check with your doctor's office, too. People have said that the battle seems particularly difficult in some states (Florida and New York come to mind). That might be a result of how O2 providers and insurance companies are regulated in some states -- I don't know. If you have a prescription, you ought to be able to get medical O2 and the related equipment (regulator and mask) by self-paying, but that might be real expensive. Another thing I don't know. As Tiaan said, you can take the alternative route as many have done and use welding O2 (which might even be less expensive in the long run, although there's more hassle because you have to return the tanks for refills yourself rather than having the a medical O2 supplier bring you the new ones and take away the used ones). It's hard for many people to appreciate how essential O2 is to managing CH, so either way, please don't give up. The welding O2 route is straightforward -- buy or rent tanks from a welding supply company (look it up online), and buy your regulator and mask online. If you decide to do that, let us know, and we'll tell you more.

Thank you. Valuable information, clearly stated. This has probably been discussed before, but do you not have oxygen?

You take both Benadryl and melatonin? I've been curious about whether people could handle that. How much of each do you take at night?

Tiaan, there are some reports here from people who have used Gammacore. if you put the word gamma into the search bar at the top right of any page and search "all content," you'll find quite a few remarks about the device. As I noted in one post, there's some high praise, a lot of okay-but-nothing-special, and some downright negative. At least at the last time it was discussed, it was pretty darn expensive. I hope you catch this cycle fast and knock it out. Check in the search bar for "boron" and also for "thiamine." Some people are having good results adding those supplements. And if you're not adding Benadryl to your D3 regimen (I assume you're doing that), consider it. Sometime allergens cause flareups.

The melatonin might help (melatonin levels get low in people with CH when they're in their CH cycles). It helps a few people here, but usually at much higher doses than 5-10mg, though that's roughly where you should start. It isn't to help you sleep -- you're not going to sleep through an attack -- but to help prevent attacks or make them less bad. I would consider trying the Benadryl and not the melatonin, but others might recommend the melatonin. It's not a good idea to use both at night. Excedrin Migraine would really only help because of the caffeine in it. There's very little indication that nortriptyline will help, either. The meds typically prescribed for CH are verapamil as a preventive and a nasal or injectable triptan (such as sumatriptan) as an abortive. I would say that most people here would tell you that the most effective preventive is the D3 regimen, and while the triptans do abort attacks quickly for most people, they also are considered to worsen subsequent attacks and perhaps extend cycles. These prescriptions are just simple look-it-up-in-the-book-or-the-online-reference for any medical "professional" who cares. Wake-up attacks are awful, and there are times when your attack is so far along that the "secondary" things like energy shots, etc. just can't make a huge difference. I will say that most people, though not all, can actually go back to sleep after aborting an attack with caffeine. I hope something helps you tonight, and that you get to see a competent medical professional soon. If you want to push back on the clinic doctor or the NP, we can give you the peer-reviewed medical studies (the main one being from the Journal of the American Medical Association) that prove the effectiveness of oxygen. But again, all docs and medical professionals have books or online resources where they can quickly look up prescribing advice if they're not too lazy or uncaring to do so, and those all recommend O2. A competent neurologist would probably order an MRI to rule out other causes. It won't show whether you have CH, though.

It's stunning how cruelly ignorant doctors can be. I wish I could say that your situation is even unusual, but it's more common than actually getting a prescription for oxygen. How soon will you be seeing the neurologist? You have a better chance of getting oxygen there, but it's far from guaranteed. I would consider calling the neurologist's office and asking whether s/he prescribes O2 for cluster headaches. There is an alternative that a whole lot of people with CH -- at least 20 percent -- turn to, for many reasons. That's using welding oxygen. It's something you can just go buy, and you can get all the other stuff you need (mask and regulator) from the internet. My daughter has used welding O2 for ten years; Dallas Denny uses it, too. If you want to go that route, let us know. If your doctor will just write the %$#@@^ prescription, of course, you can get medical O2 on your own. I'm willing to bet that one reason your doctor lied to you is that she doesn't know how to write an O2 prescription for CH and was embarrassed to admit it. Denny gave you the prescription wording. Do you have walk-in medical clinics near you? If you have anything in writing showing that you have CH, you can go to one of those clinics, tell them/show them that you have CH, and ask for an O2 prescription. As with your neurologist, it's best to call first and ask whether they'll prescribe it. Did the doctor prescribe anything? Please try the energy shot at the first sign of an attack. It does help a lot of people. Many prefer it to be very cold. Here are some other things to try to abort an attack. Drink ice water through a straw so the water runs against the roof of your mouth. The idea here is to induce a kind of brain freeze that will sometimes counteract an attack. Some people get relief from standing in a bathtub of very hot water, and some like to move from that bathtub to a cool room and then back to the tub. Some people find that inhaling cold air from an air conditioner will relieve an attack. I'm so sorry from your awful experience today. But it's going to get better.

Hope you get that O2! Let us know, and let us know specifically what else the doctor prescribes. Start the D3 regimen: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Check your triggers (MSG is a big one for many people, and young people tend to eat a lot of MSG, in things like ramen dishes (Cup O' Noodles, etc), flavored chips, etc.). https://clusterbusters.org/forums/topic/4568-triggers/ Try an energy shot such as 5-Hour Energy at the first sign of an attack. Allergies tend to flare up CH, particularly at times of year when there's a lot of pollen. Some people find that regular doses of Benadryl (25mg 3 times a day and 50mg at night) helps a lot. It'll probably make you quite drowsy, though.

I don't see that any ADD meds are listed as blockers in the "official" list in the ClusterBuster Files ("Playing Well Together"). There's a post here from someone who thinks Adderall interfered with his busting: https://clusterbusters.org/forums/topic/5148-busting-help/?tab=comments#comment-53289 There are probably other Adderall-related posts that you can find using the search bar at the top right of the page. This is all anecdotal and guesswork, unfortunately -- even the "playing Well Together" list, which is from 2010, is not really reliable. Since you're probably going to have to bust more than once, you'll have to take that into account when deciding about stopping and continuing meds. Wish I could be more helpful!

It is generally agreed here that you need to be off triptans and other blocking medications for five days before a bust. I say that is "generally agreed here" because some dissenting views have been expressed lately, saying that while triptans might block busting, there is no need to be off them for five days. I don't think anyone can say what is "true" about that, so many of us still recommend the five-day "detox." It is said here that you could use a triptan right after busting and it won't "unbust" you, but you'd have to wait five full days after taking it. As with Denny, it's my understanding that the D3 regimen and busting are compatible. You've probably answered this somewhere already, but what meds are you taking (for CH and anything else, since some non-CH meds are also believed to block busting)?

When my daughter was inaccurately diagnosed as having trigeminal neuralgia, she was prescribed Neurontin (gabapentin). It helped. For her, the side effects were unacceptable. Dr. Goadsby, the CH expert, says that gabapentin can be an acceptable CH preventive (he says up to 3600mg/day). I'm assuming that all this would also apply to migraine. Good luck, Moxie! No chance of getting Aimovig from your generous NHS??? https://www.nbcnews.com/health/health-news/new-drug-uses-antibodies-stop-chronic-migraines-without-side-effects-n866696

Most O2 suppliers don't know anything about CH, so they are likely to give you the wrong stuff. If you get a prescription and decide to go forward, call the supplier before they deliver anything. Be sure that they understand that you need at least one large tank (an M tank or an H tank), at least one smaller tank (an E tank) for portability, a regulator that goes up to at least 15 lpm (the prescription will state a flow rate, probably 15, but if you can get the doc to write it for 25, that would be great), and a NON-REBREATHER mask. Let us know how that goes. The mask will work but you could also order a mask specially designed for people with CH, which many people find to be a very big improvement: http://www.clusterheadaches.com/ccp8/ There have been two people here who underwent a lot of hormone replacement therapy because they were transitioning. As I'm remembering, one felt certain that that therapy made the CH worse, and one found the opposite to be true. That's what I think I remember. You could try putting "hormone replacement" into the search bar ) top right of the page) and see what comes up.

++ What Jon' said. Gabapentin sometimes helps, but many people find the side effects hard to take (general dullness, lack of coordination, etc.). I agree with Jon''s hesitancy about verap and gabapentin at the same time. And I agree with him about browsing around the site -- maybe start with the ClusterBuster Files section. (If you're going to be using Trex, there's a tip on the second page of those Files about how to get 2 or even 3 injections from one injector. You can also get trex in vials, with syringes, and measure out your own dosage. 2 mg is enough for most people; 3mg is almost always plenty.) If you have a question about a specific thing, you can try typing it into the search bar, top right. Oxygen (which should be prescribed to you, but if you're in the VA system (I don't know how it works for active-duty spouses) might not be because the government doesn't recognize O2 as a CH treatment even though all the medical literature puts it at #1). There are other ways to get O2, but first ask for a prescription. Like Jon' says, do the D3 regimen. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 (It was invented by an ex-Navy guy.) Drink down a cold energy shot as soon as you feel an attack coming on. Many other things to consider, but those are all good places to start.

Cylinders (not a "concentrator," which makes O2 from room air). A regulator that ideally goes up to 25 liters per minute (lpm), (but a supplier will probably only give you a 15 lpm regulator), and a NON-REBREATHER mask. You need a prescription from your doctor. That prescription is provided to an oxygen supply company. They bring you your stuff. There is a lot more to be said about all this, so come back when you get the prescription -- before you get the delivery. I'm being optimistic. Even though O2 is the #1 abortive in all the medical reference books/sites, and it works very well and has no side effects, doctors often don't or won't prescribe it, and some people have big issues with insurance coverage. If any of those things occur (no prescription, no coverage), there are still options. So come back then, too.

++ to what Fun' says, particularly, in the short run, about the value of O2, and in the long run, about D3. Based on the study results, I'd definitely give Aimovig a shot. I had understood that it's pretty expensive. I'd say there are real concerns about the other things -- not that they might not help you, but that they have substantial side effects, including rebounds. Here's some info about ergotamine: https://www.webmd.com/drugs/2/drug-6780/ergotamine-tartrate-sublingual/details If you take the verap, you might have to get up to pretty high doses, as much as 960mg/day, before it really helps. Here's a useful reference about meds: https://clusterbusters.org/wp-content/uploads/2014/03/GoadsbyClusterTreatment.pdf

It's my understanding that crushing pills is not a good idea. They're definitely insistent in the Maxalt product instructions about not crushing, breaking, or chewing the solid tablets. Do you mind saying how long it takes you to abort with the orally disintegrating one and with the solid one? Probably "it depends" to some extent -- how quick you take it after an attack has started, etc. But in general. I thought of another non-pharma "treatment" that has helped more than a few people. Batch (inventor of the D3 regimen and all-around CH hero) has noticed a correlation between high pollen periods and CH attacks. He recommends Benadryl, taken 25mg 3x/day and 50mg at night. Can make you kinda groggy, of course. And that also reminds me that some folks find that melatonin taken at night, starting around 9mg and working up, helps with nighttime attacks. Don't take all that Benadryl and all that melatonin at night together though. That would be beyond groggy.