CHfather

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 The numbered files in the ClusterBuster Files section are good for the basics, but a little out of date in some regards.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.

Well, since your O2 seems to be losing effectiveness, I would consider all those things. Some folks say the mask alone gives the 10-20% quicker aborts. Others have said that they get at least as good results from the "red neck" system I suggested you should look up. Higher flow rates are mostly important if you are prevented from using a fully-effective breathing method because you have to wait for the reservoir bag on the mask to refill. For some people, MM doesn't work but other substances do (LSD and LSA/seeds). The seeds are easy to get and legal to possess, and simple to process, and they generally have no psychedelic effects at all at levels needs to treat CH. The conferences are generally considered life-changing, or at least dramatically life-improving, events by people who attend. Info in the "Conferences" part of this board.

Shay, thank you for being a supporter!!!! I would suggest that you (or he!) start a thread in one of the other forums here (Share Your Busting Stories is a good one, even though you probably don't have a busting story to tell). Let us know -- as specifically as possible -- what he's doing for his CH (meds with dosages; other treatments); what seems to help and what doesn't. There are likely to be a bunch of things he can do to make his situation better. Isolation is very common, with many underlying factors, but knowing that his CH is more manageable is definitely a very good way to start changing that.

CarAB, Many/most people have found that they benefit from upgrading their O2 system (if you haven't already done this -- it seems like you're well on top of things). A regulator of at least 25 lpm and the mask made specifically for CH can make a substantial difference (http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit) You might know this, too -- Many people find that quickly drinking an energy shot, such as 5-Hour Energy, at the first sign of attack can be helpful on its own for reducing the severity of an attack or even sometimes aborting an attack, and is particularly effective if done just as getting on the O2. There's also a recently-developed breathing strategy (by one of the best thinkers about CH treatments) that is working well for many people. Unfortunately, I can't link to an internal thread here, but you can find that technique if you enter the phrase "red neck" into the search bar at the top right. Almost no one needs the full 6mg of sumatriptan from the standard autoinjector (it sounds like you might); mos6t can get an abort from 2 or 3 mg. If you want to try reduced dosage (I can see many reasons why you might, but also why you wouldn't), there's a file called "extending imitrex" over in the ClusterBuster Files section (might be low on page 1 or on page 2). Unfortunately, I think three weeks of indomethacin is a long-enough trial period.

CarAB, how often does O2 on its own work for you? Or does it only work, when it does, along with sumatriptan injections? I'm sorry that we (or at least I) can't help you with the sleep disorder things. (I'm sorry that pituitary tumor thing didn't work out, because as you say, that is a recognized cause of CH pain.) Have you considered the D3 regimen (described in the ClusterBuster Files section of this board). Has an alternative diagnosis, such as a hemicrania, been considered? Have you tried indomethacin (a strong anti-inflammatory that doesn't work on CH but does work on CH "lookalike" headaches)?

Thanks, CDog.