CHfather

I agree. It should be easy enough to track abuse, without penalizing use by those who need them.

Sorry, Tom! Click here for an answer to your specific question, and also some suggestions you might consider if this continues: https://clusterbusters.org/forums/topic/5377-cluster-and-old-age/

SORRY! Some thoughts: Energy shots (5-Hour Energy) at first sign of attack (they don't keep most people up at night); melatonin at bedtime (start with about 10mg, maybe, and go up or down as appropriate); feet in very hot bathtub to at least slow down an attack; sip ice water through a straw aimed at the roof of your mouth, with the objective of creating "brain freeze" (or try holding something cold, such as frozen juice concentrate, against the roof of your mouth with your tongue) Stay hydrated -- lots and lots of water. You could try Benadryl (25 mg every 4 hours and 50 mg at night -- but not if you are also taking melatonin at night); there's a theory that allergies/histamines make CH attacks worse, and Benadryl will help. Wish I could think of more. When O2 in tanks gets low, it seems to lose its effectiveness. Hopefully this problem might be solved (if it is a problem) with your new tank. At some point, you might be better off inhaling cold air from an air conditioner (or vigorously exercising outside if it's cold where you are). You want to start the D3 regimen as soon as possible, but it isn't going to help you in the next couple of days. (See the ClusterBuster Files section for info.) Triptan tablets are next to useless, but of course the other stuff is ridiculously expensive. You can get three injections from one autoinjector, though, so that makes it a little more tolerable (info about how to do that is also in the ClusterBuster Files section, in the post "Extending Imitrex," which is on the second or third page. Check the list of triggers (also in the CB Files section) to be sure that not doing anything that makes it worse (MSG, chocolate, aged cheeses, etc.)

Elliott, one place where people have been quite confrontational with you is here, where you posted about parasites almost a year ago. I appreciate your coming back with an update, and I don't doubt that your only motivation is to share what you have experienced. To avoid a repeat of what became considerable "confrontation" the last time you posted, I'll just link to that thread, with virtually the same title as this one: https://clusterbusters.org/forums/topic/4894-i-think-i-may-have-found-the-cure/#comment-51265

Are you taking something with the indomethacin to protect your insides (Nexium or something along those lines)? That's standard practice -- but it doesn't always solve the problem.

You should be taking the calcium part of the D3 regimen 8 hours apart from the verapamil (verap is a calcium channel blocker). Batch recommends 25mg of Benadryl every 4 hours, and 50 mg at night. He has concluded that pollen/allergies often make CH worse. Split your trex injections. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Consider upping your verapamil (960mg/day is sometimes needed). You don't have oxygen???

I agree there seems to be a typo, but I gotta admit, I don't see the point of the exercise. I've never seen a person report here on their score in the 8 years I've been here, and I'm sure a doctor would not be interested in or familiar with this tracking method. I mean, pretty much a person has CH or doesn't, and treatment is not going to vary depending on a score like this. I guess you could use it to give yourself a better picture of when your attacks or worse or not as bad, and maybe you could correlate that with something you're doing or taking or not doing or not taking. This seems like a decent way to maybe summarize that info, but I'm going to suspect that for some people a long attack at a lower pain level is worse than a shorter attack at a higher pain level. A guy developed an app for tracking CH pain/duration etc. that he posted about here. I think he has posted more recently than this one, but maybe you'll have to PM him to find out more.

Thank you for this, Charles. You don't say when your reckless youth of recreational drug use took place, but I guess you know the founding story of this site, the guy who realized that he hadn't had CH attacks while he was regularly using something -- psilo or acid, I don't recall -- and figured out that whatever he was taking was an effective treatment for CH. My only suggestion is that you stay on the D3 regimen continually instead of restarting it in November, because you want to get your D level up to a stable high level, which is easier to do over time. You can get your D level checked (standard blood panel) to make sure it doesn't get higher than you want it to be, but it's highly unlikely that with 10,000IU/day that is going to happen.

Sorry, sorry, sorry. If there's anything that could be called good news, I guess it's maybe that important things been learned in the last years about treating CH. Most notably, the D3 regimen, which you can read about here: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708. Advances in use of oxygen: high-flow regulators, the mask made specifically for people with CH, and some alternative breathing strategies. If you're not familiar with busting (I know this site didn't exist 12 years ago), that might be something you want to consider (see the numbered files in the ClusterBuster Files section of the board). Not much new in the pharma world, really, except recognition that higher doses of verapamil and prednisone work better than the doses that typically used to be prescribed. Splitting Imitrex injections might be a relatively new thing; I don't know. Energy drinks to abort? Ice water to abort by creating "brain freeze"? Melatonin at night? Trying to think of whatever I can. It still sucks, for sure.

I think we've said that this concerning. I have no explanation. Does the O2 help?

Barcode, I can't answer any of your questions. I can suggest that we sometimes see that when a treatment is effective, attacks start occurring at different times. We can hope that's what's happening here. I can tell you that you want a prescription for oxygen, which is the best abortive with the least side effects (none). You really want to be prepared to insist on that with the neuro, because even most neuros don't have the sense to prescribe it, even though it's right there in all their books and online resources as the #1 abortive. Take a look at this document. https://clusterbusters.org/oxygen-information/ It's now kind of outdated in some ways, but the references are things you might want to bring with you (particularly the JAMA report). I can suggest that you try a 5-Hour Energy as soon as you get an attack. It will often at least lessen the severity, and sometimes abort it. For shadows, ginger works well for many people. Strong, real ginger, as a tea or a string candy. Many people say strong enough that it stings when you drink it/eat it. Verapamil dosage can need to go pretty high, as much as 960 mg/day or more, before it's effective. Most docs won't prescribe this high of a dose, because they don't know it's needed. It has to be monitored. You should read about "busting" in the numbered files in the ClusterBuster Files section.

I'm very sorry for that ongoing battle, lynn'. If I'm surmising right on your tank sizes, that larger tank holds almost three times as much O2 as one of the smaller ones. Just about two hours' worth at 15 lpm. To the extent that you want to conserve your pure O2 and not use the concentrator-generated O2, you could try Batch's "redneck" method, which uses far less O2. It's described here (consists of hyperventilating with room air; then sucking down some O2 from a tank; then back to room air). But I also might be exaggerating the reduced effectiveness of concentrator O2.

Lynn, Thanks for the tank info. I guess you have 3 Es and an M-60. The shorter, wider one uses a different kind of regulator than the other ones, right?

That is when oxygen works, after the attack has started -- it is for aborting attacks, not preventing them. However, I gather that your attacks are full force as soon as they start, whereas for most people CH attacks ramp up, and so they can be "caught" with O2 before they get too bad. Of course, you should try it, and see if it works. I would not encourage accepting a concentrator for refilling tanks, since a concentrator produces O2 that still has some room air mixed in. The O2 supplier should bring you new full tanks as you use up your existing ones. I am also puzzled by the sizes of your tanks, since you say you can take the "large" one along with you in the car. A truly large O2 tank is quite heavy and unwieldy, and not something one just tosses into the car. How tall are your small and large tanks? A typical large tank is at least 3 feet tall.

Peggy', they're called suicide headaches because the pain is so terrible that death seems preferable. Being able to "push through it" and "go about things that have to be done" suggests that it is not CH. (You have acknowledged that it's not as bad as what people here typically describe, so I'm not telling you anything new.) The fact that Imitrex didn't do anything is another very strong indication that it is not CH, at least if it was injectable or a nasal spray. Pills often do nothing. CH pain can affect all the areas you mention, but the pain is almost always most severe in/around one eye, and that's not really what you are describing.

I'm a little confused (again!) by this . . . but others might not be. You got a large cylinder and a concentrator, or he called the large tank a "concentrator" and said to fill the smaller ones from it? If you clarify this, I/we can maybe comment better. I'd say that typically people use their large cylinders for attacks and the small ones as backups -- or they use the small ones for portability; in the car, etc. Yes, often suppliers don't stock regs higher than 15 lpm. You can buy a higher-flow reg at amazon, eBay, and many other places for about $30. Whether you want/need that would depend first on whether O2 seems to be helping you at all, and then on whether you have to wait for the bag on your mask to fill when you're using an effective breathing strategy at 15. If you have to wait for the bag to fill, 25 lpm will fill it faster and allow you to keep breathing O2 without interruptions. Are you doing the whole D3 regimen -- all the supplements? That's important. I would say that if the Benadryl has had no effect for three weeks, there's not much point in continuing that.

sleepless, what jon' says is all correct. For most people, prednisone seems to give some pain-free days but the pain returns when you stop it (or during the taper down). On the other hand, it is rarely administered in the way that Dr. Goadsby (a CH expert) describes as the standard: "1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach. It often stops the cluster period, and should be used no more than once a year to avoid aseptic necrosis." https://americanheadachesociety.org/wp-content/uploads/2016/07/Peter_Goadsby_-_Treatment_of_Cluster_headache.pdf ("asceptic necrosis" is when bones die from lack of blood flow. hips, shoulders, knees can be severely affected). You should look into the vitamin D3 regimen, which has helped lots and lots of people. See "D3 regimen" in the ClusterBuster files section. If you're going to use Imitrex, also see the file in that section (on page 2), "Extending Imitrex." You can get two or three shots from a single autoinjector. If you used the search bar to look for references at this site to prednisone and didn't find many, you probably didn't have it set to "all content," since there are many pages of references to pred found in that search. This is just FYI . . . We're always glad when people ask questions!

I see that there are eBay sellers of RC that explicitly say they ship to UK. I know that some UK folks have had success getting truffles shipped to them from companies in the Netherlands. I think I recall some folks naming the companies that shipped to them. Maybe if you put the word truffles into the search bar (top right) you might find some of those posts.

Since you and I just posted at the same time, just letting you know that there's a post from me above yours here.

The good thing about diagnosing hemicrania is that whether or not the drug indomethacin treats it is the diagnostic indicator of whether you have it. Indomethacin is a kind of nonsteroidal anti-inflammatory drug (an NSAID), so I don't think it will require stopping other treatments. It can be quite rough on the digestive system, though. I still doubt that you have CH, but answers to some of your CH-related questions: Depakote is sometimes effective for CH, but it's not a first- or second-line prescription for CH. Lithium, which also treats bipolar, is used to treat CH. However, it's only recommended to be given to people with chronic CH as a kind of last resort, because of the side effects and the fact that severe rebound attacks can occur when lithium is stopped. This is a good discussion of standard CH treatment: https://americanheadachesociety.org/wp-content/uploads/2016/07/Peter_Goadsby_-_Treatment_of_Cluster_headache.pdf People take the D3 regimen year-round, to be sure they keep their D levels up (and often because they think it just makes them feel better). Yes, you can get D3 in larger dosages. Abortive medications (oxygen, triptans) are only used in cycle, preventives like verapamil can be eased off when out of cycle if you have a reliable sense of when the cycle will start again.

I do, too. I think your neuro's position is ridiculous.

Oh, boy . . . What I'm saying here is just what I know, or think I know. I suppose others might correct me. Percocet just doesn't work for CH. That's a given, though I suppose there are exceptions to every rule. It isn't really effective for migraine, either. No, it is not normal to feel light-headed after using O2. How abnormal it is, I don't know. I don't remember reading about it even once in the past 7 1/2 years, which would include at least 100 conversations with people using O2. Racer1_NC and Batch, among others, know far more about this than I do. You could PM them from the envelope symbol at the top right of the page. If you are hyperventilating, maybe -- but you'd know that. If anything, the low flow rate would seem to make it less likely that you'd have breathing-related issues. Are you having any trouble inhaling? If O2 doesn't work, it would seem to be another sign that you don't have CH, although this might not be a fair test (and, as you say, it's not clear even when you should start on the O2). There's a "symptom checker" at WebMD.com. I looked for sneezing, nausea, and headache. Didn't see anything there that really makes sense. Sorry . . .

Roadie, Hemicrania continua??? https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/

You've heard from two of the very best, Angela. I am only going to clarify that energy "shots" (the small ones of about 2-3 ounces, such as 5-Hour Energy), often have more caffeine than the larger energy "drinks" of about 8-12 ounces, such as Red Bull or Monster. An energy shot is easier to drink down quickly than the larger energy drink. As jon' says, check the labels.

Nothing significant to add to fella's superb response. If phenergan, an anti-histamine, worked for you, it's possible that Benadryl will, too. Recommended dosage is 25mg every 4 hours, and 50mg at night, with the usual warnings about drowsiness. I share fella's doubts about whether you have CH. When you say "Lately they have been lasting about three weeks," do you mean that you have an ongoing severe headache for three weeks, or that you have attacks frequently during a three-week period and then they go away? If you do have CH, strong pain-killers (such as Toradol) are not going to help. The strongest analgesics/opiods don't work. As fella says, oxygen, verapamil, and sumatriptan are the first-line treatments, and maybe some prednisone to perhaps create some painfree time. If you do have CH, it's possible that caffeine will help you (there's some of that, but not enough in Excedrine Migraine). You might try drinking an energy shot, such as 5-Hour Energy, when an attack begins.