CHfather

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.

Great to hear from you, Purp! You have a place in my heart, and I'm glad to read that you are in a relatively good place compared to when you were first posting here.

Unless you're receiving insurance from a government agency (Medicare, VA, Medicaid), your insurance should cover it. As Jon' and 'Denny say, welding is a very viable alternative. You gotta have O2!! You ask about prescription meds, so starting there (nothing new that I know of) . . . Verapamil is commonly prescribed as a preventive. Short-acting (not timed-release) is better. Prescriptions can go up to 960 mg/day or sometimes more before they are effective; most doctors don't prescribe that. You should be monitored as you start it and as you ramp up. I'm always puzzled about Maxalt. Is it just in pill form? Pills usually don't work well, but you say the Maxalt is effective. Nasal spray and injections generally work more reliably and faster. Many people are convinced that triptans extend cycles and make attacks worse, so getting O2 and using energy shots and other abortive strategies is pretty important. Among other "home-remedy" abortives are sucking ice water through a straw so it's hitting the roof of your mouth (to cause "brain freeze"); deeply breathing very cold air from an air conditioner or freezer; and standing in a bathtub of very hot water. Here's a link to info about the D3: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 I'm gonna say that 90% of people who do the regimen correctly get some relief from it, and I'd say maybe two-thirds, or even more, get exceptional relief. It is not likely to help you right away, but the sooner you start it, the sooner it will help. There's also a thread here about vitamin B1 being very helpful: https://clusterbusters.org/forums/topic/5417-b1-oral-high-dose-thiamine/

You might take a look at this thread: https://clusterbusters.org/forums/topic/5417-b1-oral-high-dose-thiamine/ Are you doing Benadryl along with the D3 loading?

This is valuable information, thank you. Just to continue the comparison, 5-Hour Energy has 215 mg of caffeine (!), and costs about $48 for 24 at amazon ($2/bottle).

Thank you. I'm curious -- Is there taurine in that supplement? Asking because some/many think that caffeine + taurine is more effective than just caffeine.

The message from fella here talks about relieving a knot. https://clusterbusters.org/forums/topic/5325-neck-muscle-tension-connection/#comment-54530 As I remember it, there were others who had massagy/pressury strategies for dealing with it. You could type the word knot into the search bar on the upper right of the page and see what else comes up.

gods', I am familiar with EMDR. It has been very helpful for me related to trauma and stress (remember -- I don't have CH (my daughter does), so I can't say about helping with CH specifically). As I understand it, tapping can be a form of EMDR. I tried briefly to find a simple article or youtube video about how to do EMDR and/or tapping, for anyone here who might be interested, but I didn't find anything quickly. I am sure there are many things out there, so anyone interested should probably do a little searching.

Basic finding: Oral steroids generally more effective than occipital nerve injection of steroids as transitional treatments. Half or fewer of the subjects received full temporary relief of symptoms with either method (50.6% with oral prednisone, 36% with injections). https://www.docguide.com/greater-occipital-nerve-injection-versus-oral-steroids-short-term-prophylaxis-cluster-headache-retro?tsid=5 OBJECTIVE To investigate our experience with oral steroid and greater occipital nerve (GON) injection with steroid as transitional treatments for cluster headache. BACKGROUND Cluster headache is a primary headache disorder characterized by multiple episodes of intense unilateral pain with autonomic features. During cluster headache attacks, transitional therapies are useful while prophylactic dosages are initiated or increased. There are limited data comparing the efficacy of oral versus injected transitional treatments. METHODS We retrospectively reviewed charts for patients evaluated with cluster headache at our center and captured episodes of transitional therapy utilized from 1995 to 2014. Treatment benefit was categorized into complete, partial, or no response. RESULTS Forty-three patients received transitional therapy over a total of 151 encounters, of which 140 were available for analysis. Encounters featured oral steroids (81, 57.9%) and GON injection (59, 42.1%). Of the 40 patients with treatment response data available, 24 patients received only one type of transitional therapy and 16 patients received both therapies. More encounters featuring oral steroids versus GON injections led to at least a partial response (82.7% vs 64.4%) and to a lesser extent a complete response (50.6% vs 35.6%). Among 16 patients treated with both therapies, 8 (50%) responded to both and 6 (37.5%) responded only to oral steroids. CONCLUSIONS Our single-center, retrospective data suggest the majority of patients with cluster headache responded to both prednisone and GON injections for transitional treatment, with a higher response to oral steroids. Our results may inform study design for a randomized trial, which is warranted.