CHfather

I don't know that this subject has come up before in this form. Obviously, you want to be able to have oxygen at the office, and with you in the field. I don't even know this, but do you mean an ADA application as opposed to an FMLA application? Have you thought about why you almost always have an attack after each intake appointment? Many people think CH attacks are associated with stress, although that's usually a more general thing, and not such a one-to-one correlation. Are these appointments usually at the same time, and that time corresponds to when you get cluster attacks? Do you think there's something in the environment where you do them that triggers attacks? (You might look at the list of triggers in the ClusterBuster Files section of the board, though I'm not sure it will help.) Overall, are you treating your chronic CH effectively? Doing the D3 regimen (see the post about that in the ClusterBuster Files section)? Got some pharma that helps (verapamil/sumatriptan)? Would you consider busting (numbered files in that same CB Files section)?

There's a recommended doctor list as the first post in this General Board. You ought to at least look at that and see if there's anyone near you. At the least, try to get to a headache center, since many other docs, including neurologists, are quite clueless about CH (which sounds like it definitely could be what you have). Standard meds for treating migraine are the same as for CH -- verapamil as a preventive and sumatriptan (preferably injectable) as an abortive. Have you been prescribed those? (Of course, oxygen works for CH but not well for migraine. Oxygen can be prescribed, but you can set up an oxygen system on your own using welding oxygen if it comes to that.) The vitamin D3 regimen, described in the ClusterBuster Files section, is very helpful for CH and for migraine. You should very seriously consider doing that. You can try quickly drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack. Melatonin at night, starting at 9mg and working up if you need more, helps many people with CH.

Well, here's the thing. It's not melatonin's effects as a sleep aid that lead to it being recommended. It's not to try to help you sleep through an attack. When people are in CH cycles, their melatonin levels are low. And melatonin is related to the regulation of the hypothalamus, which is considered by many to have a role in CH. And in some studies and many reports, melatonin reduces CH attacks. So it's the chain of logic about its possible physiological relationship to CH, supported by some actual research and experience, that's behind the recommendation of melatonin.

What they said.

urs, if you haven't seen these, you can click on them (thanks, Jeebs) Alteration in nature of cluster headache during subcutaneous administration of sumatriptan Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients On the other hand (and these subjects were overusing triptans). . . Sumatriptan overuse in episodic cluster headache: Lack of adverse events, rebound syndromes, drug dependence and tachyphylaxis

I would just click the "like" button, but this is far beyond that. Thanks so much.

Thanks for the guidance, Jeebs. I was just copying and pasting the links; never noticed the link thingie. MST3k is good. Of course, if you're jonesin' for some and you don't want to splurge on Netflix. there are tons of full-length older episodes on youtube, if you can tolerate non-HD. (Heck yes, I'm old but I'm hip. I can say "jonesin' " with authority.)

Well, for most people pred taper only works while on the taper, and sometimes/often only at the higher doses (not while actually tapering down). Its principal purpose, as Pebbles suggests, is to tide you over until verapamil can kick in. If you can't get to a doctor, hence can't get verap, the effects of the pred might wear off before or during your travels. Sometimes the pred will kick the cycle, or the cycle will be ending anyway, but we have story after story here of only temporary effects from tapers. The best option is to get to your doctor and get proper prescriptions for everything . . . but that sounds like it might not happen, and even then, it's possible that a sensible doctor won't prescribe verap if you're going to be traveling for a while, since verap needs to be monitored in early stages. I would still seriously consider busting if I were you. Not to add to the bleakness, but I suppose you might know that air travel triggers attacks for many people. At least, be sure you have energy shots/drinks with you on the plane; even better, small amounts of some busting substances placed under the tongue will help abort attacks (though of course having them at the airport is a bit risky). Too damn bad that the UK banned rivea corymbosa seeds -- but you could probably also get those from the Netherlands, too. Try to make arrangements for O2 in Las Vegas (and Greece, if possible). Check with your O2 supplier there, because they might be able to make arrangements for you. At the least, bring your prescription with you and maybe you can get it filled by a supplier in LV.

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,