CHfather

Sorry you're in such a bad way and a tough spot, Steveo. From what you've written, I'm assuming you have no access to a doctor. I'm kind of gathering that you're in the UK (although the times in your message aren't consistent with that). If that's where you are, what about getting truffles from the Netherlands? I think they'll fill a mail order, or maybe you would have some way of getting them directly?? (Assuming that you don't have any resources among your acquaintances for busting substances.) If you're not familiar with busting, it's using psychedelic substances, potentially at subpsychedelic levels, to treat CH. You can read about it in the numbered files in the ClusterBuster Files section. You would have to be off the Zomig, but it sounds like that might be going to happen anyway. In the short run, when it sounds like you have practically nothing, you could try drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack. That can reduce the severity of an attack, or sometimes even abort them. In the future, you might consider asking for injectable sumatriptan instead of the spray. With most injectors, you can split the doses and make the stuff last longer. (If you've been using the Zomig with most attacks, it is probably making your situation worse, with rebounds, etc. Ultimately, of course, you want to be as pharma-free as possible.)

You'll have to show me how you did that link, rendering silly my many months of whining and complaining -- but don't show my right now, because I'm busy watching the return of Mystery Science Theater 3000 on Netflix.

I wish there was more new to report (and others may be more on top of this than me). 1. Batch, as I understand it, is now recommending relatively small daily doses of benadryl as part of the D3 regimen, to be increased to full recommended dosage during high pollen seasons. 2. Batch has recommended a new O2 strategy, which you can find by putting "red neck" into the search bar. Someone here said it really worked well for him. (One new frustrating thing is that this new message board doesn't handle internal links, so I/we can only tell people where to look things up, rather than linking to them. Also, can't (or at least I can't figure out how to) attach things or post images. Otherwise I'd be posting Jeebs-as-Borat images to introduce you to the newer folks. But I digress.) 3. dlnmerced put together advice for creating LSA from HBWR that many people seem to find helpful (over in the CB Files section; also posted at FB) 4. The group put together a nice list of "triggers" (not necessarily instantaneous) that had some surprising entries for me. 5. Moxie is apparently doing a lot better, and hasn't been heard from much. 6. Many seem to think that the clinical trials about monoclonal antibodies are quite promising, and, as you probably saw, there's a psilocybin trial going on at Yale. 7. A fellow said that putting his feet in the bathtub with very hot water helped reduce/abort his attacks; some others seem to have found that helpful, too, at least for temporary relief. 8. Another fellow said that drinking a combo of water, fresh lime, and baking soda helped him during attacks. He hasn't reported back and I don't know whether others have also had positive experiences. My daughter enjoys it at least as a "break" during an attack, though she won't say for sure that it makes any difference. 9. A very helpful fellow has suggested that the only major CH med that blocks busting is probably triptans. Not verap, not steroids. I don't know if anyone has tried busting while on steroids. 10. In addition to the stalwarts, many very helpful newer folks have helped fill the unfillable Jeebs void. I would list them, but then I'd leave some out. Most kind of come and go, but when they're here, it's great. 11. I don't know the status of DALT. Maybe you do from FB. I'd say that in reports here, there were as many disappointing trials of it as positive ones. It's my vague understanding that it's hard to get now, but maybe I'm wrong about that. 12. There was something -- DMT, I think -- that someone significant (maybe Flash under a different screen name?) said was what he used, and it worked great. I was interested, but the topic just kind of fizzled. 13. Registrate will be unhappy if I don't mention his app. He's worked really hard to create it, get it right, and try to get it into use. 14. We pooled our funds to buy a tiny drone to track the whereabouts of disappeared but still beloved members. The basic drone itself was relatively inexpensive, but it was pricey to get the kind that turns into a giant corkscrew and flies up the butt of any said member who fails to respond to three or more PMs. Well worth it, I believe.

You can use a lot less Imitrex per injection (2mg instead of 6mg). Take a look at the "Extending Imitrex" file in the ClusterBuster Files. I don't know about that coldness with the O2 . . . maybe others can comment. You can inhale through your mouth only, and the "ClusterO2 Kit" has a breathing tube that can be used instead of a mask. Don't know if that's helpful.

Marty', typically prednisone is a "bridge" medication to give you some painfree time while the verapamil takes effect. (That seems like a very long taper to me, but I might be wrong.) What dose of verapamil are you taking? It's not unheard of for people to need ~960mg/day to be effective when they are in cycle. What about Imitrex as an abortive? Can you say more about that oxygen thing? Cold air from the mask bothered you? I suggest that you look at the vitamin D3 regimen in the ClusterBuster Files section of the board, and while you're there, took a look at busting (the numbered files), too. In the short run, a 5-Hour Energy might work better than just the coffee (most people like them very cold, but you might not), and speaking of hot, some people have found that it helps them to put their feet into a bathtub with water that's about as hot as they can stand.

Ecaseson, a lot of folks find that starting on the O2 with an energy shot such as 5-Hour Energy helps. Have you tried the D3 regimen (in the ClusterBuster Files section of this board)? Higher-flow regulator, which you can get at amazon, and better mask do make a difference (http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit) If you enter "red neck" into the search bar at the top right side of the page, you'll see a breathing strategy recommended by Batch, an O2 guru, which has helped many people.

A lovely message, Shadawn. Thank you for taking the time to let us know.

I think you'd capture it more generally with "capsaicin" or, probably better, "hot peppers." Sinus Buster is a product. Of course, as we've seen, people administer the peppers in a range of ways, from eating spicy food to sticking one thing or another in their nose.

Thanks, CDog -- good to know.

Yes, lots of people have tried it, usually with a dried form of capsaicin or a capsaicin cream. 90% of the reports here have been that you get a burning nose in addition to a CH attack.

dre, As I understand it, anything less than 6mg for CH is considered "off label." Migraineurs can get 3mg or 4mg injectors. Your "why" question . . . I suspect that the only trial for CH used 6mg, so it became the standard . . . and why should the pharma companies really care if that's too much: it works and people just accept the side effects and have to live with the insane costs. All that is my understanding/opinion. A doctor can choose to prescribe you a 4mg injector, and some people can get prescriptions for vials of sumatriptan and syringes, so they can measure their own doses. All this should be considered, as Rod says, in the context of the risk that triptans extend cycles, create rebound attacks, and may make "regular" attacks worse. If/when you're ready to try busting, let us know. The numbered files in the ClusterBuster Files section are good for the basics, but a little out of date in some regards. Just a quick note about RedBull. If it works for you, there's no reason not to continue. Many people do prefer energy shots, such as 5-Hour Energy, in part because they're easier to chug quickly. An energy shot, small as it is, actually contains more caffeine and taurine than most of the 8oz drinks.

:-)

if you are used to the large "m" or "h" tanks, you can get smaller, relatively portable "e" tanks for car/office. if you find yourself breathing deeply and then having to wait for the bag to refill before you can inhale again, you need a higher-flow regulator. you might also want to look at the very different O2 strategy recommended by oxygen expert Batch. I can't link you to it, but if you put the phrase "red neck" into the search bar at the upper right side of the page here, it will take you to the thread where it is described. be sure to look at that post about "extending imitrex," too. it is rare for people to need more than 2, or at most 3, mg per injection.

The bad news is that for most people things don't get better on their own with age/time. For some they do -- maybe you'll be one of them. The good news is, holy cow, gosh, there are plenty of things that will help you. Most people would put oxygen #1 on that list, as an abortive for your attacks. Pharma meds such as verapamil as a preventive and injectable sumatriptan as a backup abortive are often effective. You really need to become familiar with oxygen and meds. In the ClusterBuster Files section of this board, you could look over "Bob's Big Pocket Guide . . ." Find the places that seem most relevant to you and start there. For strictly pharma stuff, google [Goadsby treatment of cluster headache] for a clear discussion. A list of recommended doctors appears as the first post at the top of this board ("General Board"). A good doctor makes a difference. Many docs won't/don't even prescribe oxygen, which is pretty close to malpractice given that all medical references list it as the #1 abortive. (You can set up your own oxygen system using welding oxygen, as about 20% of people with CH do, but an O2 prescription is a nice thing to have.) The vitamin D3 regimen that is described in that same ClusterBuster Files section has helped hundreds of people. Give it some very serious consideration. Busting is highly effective. Read the numbered files in the CB Files section to learn more about that. Try quickly drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack. It can reduce the severity of attacks and sometimes even abort them. Strong cup of coffee might work, but the energy shots are generally better. Melatonin at night, starting at 9 mg and working up, helps many . . . CH still sucks, but you could be feeling a whole lot better.

dre, It is almost unheard of for O2 not to work if the mask you mention is used along with a high-flow regulator (25 lpm or higher) and a good breathing strategy. You should definitely try it. (The energy shot, such as 5-Hour Energy, taken while getting on the O2 helps (or some form of caffeine, at least)). Your doctor might have reasons for not going above 360 on the verap, but up to 960 is standard CH treatment. If you google [Goadsby treatment of cluster headache] you'll see an example from a leading CH medical expert. PF wishes.

dre, just a few thoughts. You don't have oxygen?? You really, really want that for aborting attacks. We can tell you more before your appointment (your doctor should have prescribed it already) if you're interested. The D3 approach should help you, though the effects are rarely rapid. Takes a few weeks. Does the document you're going by include Benadryl? The author of that document, Pete Batcheller, is now recommending Benadryl twice daily, at the full prescribed level during allergy seasons and lower levels when it's not allergy season. You can split your Imitrex injections to use less with each injection. See the file "Extending Imitrex" in the ClusterBuster Files section of the board. Many people here will tell you that verapamil didn't fully work for them until they get to around 960mg/day. Of course, many here will also tell you that ultimately "busting" is the best way to achieve your goal. You can read about busting in the numbered files in the ClusterBuster Files section.

Hey, Pixie . . . Thanks, and it's always nice to see you around these parts. Hoping things are going well for you,

The folks there might be able to help you. That group is not well liked here, but that has to do with "politics" more than whether people there can answer your particular question. (Leaders of CHSG tend to fight against the alternative treatments -- "busting" -- discussed here, which is not appreciated.) The group I was suggesting is just called "Cluster Headaches." The top, pinned post at that group is about 5-MEO-DALT.

Kev', I would suggest that you also post your questions at the "Cluster Headaches" Facebook group. More people will see it there. You have to request membership in the group, so it might take a little while. I tried to put a link here to the group, but the system won't let me.

Thanks, urs. I will look into it.

Thanks, Pebs.

Thank you, Andi'.

:-)

Jcf', I hope what you're doing now is going to help you. But . . . . Does "tried everything" include the vitamin D3 regimen that has helped hundreds of people (see the ClusterBuster Files section of this board)? Does it include busting (see the numbered files in that same section)? Is your oxygen system optimized -- high flow regulator, top-quality mask, best breathing strategies? If you were on verapamil, was the dosage high enough -- 960mg/day or more -- to actually work? Usually a mess of meds just creates a mess.

CH girl, it would be good for you to start a separate thread, but I'll make a few suggestions here. The vitamin D3 regimen, which is described in the ClusterBuster Files section, has helped hundreds of people, You should definitely strongly consider starting that. Also in the ClusterBuster Files section, you will see a file called "Extending Imitrex." That will show you how to use less sumatriptan with each injection. There is pretty strong evidence that sumatriptan can cause rebound attacks and possibly extend cycles, so you at least want to minimize your use of it. It's pretty common for people to also take a pharmaceutical preventive. Usually that's verapamil. Have you tried that? If you don't abort your attacks within 10-12 minutes using O2, you should probably consider upgrading your O2 system, with a higher-flow regulator and a top-quality mask. Can tell you more about that if you're interested. Busting has helped many people here manage their CH better than pharmaceuticals. You can read about busting also in the CBFiles section, in the numbered posts.