CHfather

You are obviously a very self-aware and empathetic person. One of the things that interested me as I helped put together the "Living with CH" booklet was how many people with CH go to great lengths to hide it from others. There was a woman here a while back who hid it from her husband and kids for many, many years. Mostly because they don't want others to worry about them (or bother them) when there's nothing they can do, partly because they feel embarrassed by how they act during an attack (it is of course wrong to feel that way, but some people do), and partly out of some feeling of guilt, as you say. Actually, MattBE said that, but I can't figure now out how to delete or change it. This is perfectly put by MattBE, and I really want to urge you to be your own CH expert, and not rely on doctors. It's not all that complicated. There are a limited number of medical treatments, which you can read the basics about here: https://americanheadachesociety.org/wp-content/uploads/2016/07/Peter_Goadsby_-_Treatment_of_Cluster_headache.pdf OXYGEN is by far the most important, and many/most doctors fail to prescribe it. You might have to advocate for yourself. (The best doctors are the ones at headache clinics -- even most neurologists are not very good with CH.) Beyond prescription medications, the D3 regimen that I suggested to you before can make a huge difference, but you have to get started on it. Please get back to us as you go through this process. There is a lot of good advice here. Are you having CH attacks now (are you in a cluster cycle)??

Dylan', I'm pretty sure that practically everyone with CH has the same issue. At the most basic level, no one who does not have CH can understand the pain. You could suggest they watch one or two of the many youtube videos of people having CH attacks, or refer them to Wikipedia, which says this about the pain: "The pain of CH attack is remarkably greater than in other headache conditions, including severe migraine. The pain is typically described as burning, stabbing, boring or squeezing, and may be located near or behind the eye.[13] As a result of the pain, those with cluster headaches may experience suicidal thoughts during an attack (giving the alternative name "suicide headache" or "suicidal headache").[14][15] It is reported as one of the most painful conditions.[16]" Like you say, what you really want is just some support without people judging or criticizing you. There are a couple of documents created by ClusterBusters, one shorter one called "20 Facts About Cluster Headaches" and one that's longer, called "Living with Cluster Headaches," which contains about 25 stories from people with CH. The crazy thing is that we can't attach or post documents here. If you PM me, I could maybe figure out how to send you a copy. (They're also posted in the Files section of the Facebook group called "Cluster Headaches," along with some other things that people have found helpful for explaining their situation to others. You have to wade through a lot of stuff to find them there.) What are you doing for your CH? Do you have oxygen? Are you doing the vitamin D3 regimen (see the ClusterBuster Files section of this board for more about that)? Taking any meds?

Yeah, that's truly nuts, for sure, as jon' says. Aside from the fact that you can take a tank with you, does he think you never get attacks at home??

(Answering for my daughter.) 1. Gives a damn is the baseline. Knows what s/he is doing, or is willing to find out. 2. Nothing to offer that I hadn't already tried. Didn't want/need any prescriptions.

Very glad this has worked for you. Lithium is usually prescribed as a last resort because of the side effects and because quitting it tends to cause severe rebound headaches. Usually, doctors will first try a preventive such as verapamil, and perhaps a supplemental abortive to oxygen in some form of triptan. If you're fine with the lithium and your oxygen is maximized, you don't need this info, but the vitamin D3 regimen is a very effective preventive without lithium side effects. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Here's info about the D3 regimen: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 A very large percentage of folks with CH use this as a preventive -- generally good for you, no significant side effects except in a handful of cases (where those side effects might or might not actually be related to the regimen). Don't be easily deterred about oxygen. It aborts attacks as fast or faster than your nasal triptan -- and no side effects. Find out, and fight if necessary. You can also set up your own O2 system using welding oxygen, which many people with CH do. One question will be whether your attacks return after (or as) you wind down the pred. As your doctor said, usually it's a bridge to give the verapamil time to take hold. Sometimes it ends the cycle, but not always. It seems a little odd to me to stay on the verap for six months, but you say he's knowledgeable. (There are people whose verap dosage during a cycle goes up to 960 mg/day or more.) Many people think that the non-extended release verap works better.

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.