CHfather

Leon', thank you for the glasses info!

What a nice exchange to read! Thanks to both of you. Leon', I have a question. Can you say a little more about those glasses -- what they are and where you get them? Also, do you have any issues with the pressure of the glasses on your nose -- does it cause you any pain? Thank you!

In general, hyperbaric oxygen has some effectiveness for aborting attacks, but it's not effective as a preventive -- or not effective enough unless the patients are "desperate." http://cep.sagepub.com/content/early/2014/04/10/0333102414529672 https://clusterbusters.org/treatments-options-choices-and-more/medications-for-cluster-headache/hyperbaric-oxygen/ I don't think researchers are even trying it anymore. It's important for you to know that inhaled oxygen is the most effective and most side-effect-free treatment there is for aborting CH attacks in adults. Used properly, it will abort most attacks for more than 90% of people with CH. Many doctors, even neurologists, are not aware of this, even though it is well documented (see the JAMA study in the oxygen page I linked you to in my previous post). I have no idea what factors might be in play for someone as young as your son. If a physician acknowledges the effectiveness and superiority of oxygen therapy but says it's not good for a ten-year-old, I'd accept that. But if the physician is not familiar with oxygen therapy, or somehow dismisses it, I would keep looking for a better doctor. It's a completely crazy (and crazy-making) aspect of CH that the best abortive treatment for CH is not known by many or even most doctors (including neurologists), and that even if they do know about it or are made aware of it, they still don't prescribe it.

Just a quick note, Bthr22 -- Cigarette smoking is not a CH trigger, at least not for 95% of people with CH. Some people with CH seem to get triggered by some kinds of smoke, but cigarette smoking is almost never a trigger. Like oxygen, nicotine is vasoconstricting, whereas alcohol, a very common trigger, is generally vasodilating (for most people, most of the time).

Toni, it must be terrible for you to see your son in so much pain. In my opinion, I think you have done a beautiful job thinking about this and you have written about it very clearly. Sure sounds like clusters. I'm not sure how much difference a cluster headache diagnosis as opposed to migraine diagnosis will help with treatment at this point (except for oxygen, as I discuss below). From what I have read, only briefly, about diet and migraine, the same possible triggers to avoid, such as some cheeses, chocolate, nitrites, and MSG, also apply to CH. But those things generally only affect people with CH when they are in cycle -- they don't bring on cycles. I am skeptical of general dietary claims related to CH (and migraine). We have people with all sorts of relatively "pure" eating practices, who still get their CH cycles and attacks. Lately, a couple of folks have said they believe that a low-histamine diet helps them when they are in a CH cycle, and that does make sense for CH, since histamines are involved in CH. I guess all I'm saying is that an anti-migraine diet might also help with CH . . . or it might not make much difference, whether your son has migraines or CH. Of course, I have no idea what medications you son, or any ten-year-old, could use. Medically, some of the baseline treatments for CH are the same as the standard ones for migraine -- verapamil as a preventive and sumatriptan injections for aborting attacks. The major difference in treating CH is that inhaling pure oxygen is very effective to abort CH attacks, but not nearly as effective for migraine. If you could somehow get oxygen and have him try it as soon as an attack starts, you'd of course know whether it works and you'd have a good diagnostic indicator, too. You can see more about oxygen for CH here: https://clusterbusters.org/oxygen-information/ The "vitamin D3" regimen seems to help both people with CH and people with migraines. https://clusterbusters.org/forums/topic/1308-d3-regimen/ Just two last thoughts. (1) In some places, doctors seem to believe that there's such a thing as "cluster migraines." (I have to say that just anecdotally, this seems to be more true in the UK than it is in the US.) But there really isn't such a thing, so, yes, it is reasonable for you to assume that your doctors don't know what CH is. (2) I don't think that primary headache conditions like migraine and CH can be attributed to hitting one's head, although I suppose that if these started when he was five and that's when he hit his head, it could be more than coincidence. I'm just saying that it could be coincidence, it could not be coincidence (neither of which really matters to you since he has the condition now and it doesn't really matter what caused it), or it could be that there is something going on that was not detected on the MRI. I am the parent of a person with CH. My kid was older than yours when her attacks became serious, although I think she had them before she was two years old. It's tough to deal with, and I wish you the very best with finding a treatment that helps.

I'm not sure that having your eyes checked would necessarily be the same as seeing an opthalmologist. Opthalmologists have a lot of years of training that the typical eye-checkers don't have. Only opthalmologists are M.D.s. But this might just be semantics. Hoping maybe the Indomethacin will work out for you!

Again, just my opinion here -- no expertise behind it at all. Clearly, it makes more sense to go to the ER than to do nothing, but of course the ER is a real crapshoot in terms of what level of skill and caring you might encounter. Even though the fioricet and maxalt didn't help, maybe that information will help someone make a diagnosis. I just don't know how costs work out for you without insurance. If it was me and I could try to convince the doctor who prescribed the fioricet and maxalt to let me try indomethacin, I'd probably try that first. (Again, I really have to say that all this is nothing more than my opinion.) Indomethacin can be quite tough on the gut, but if you have hemicrania continua, it should treat it fairly quickly. I would imagine that opthalmologists pretty often see people who are there about eye pain, and that some of the time those people will have headache conditions that the eye doctor will recognize. So I think maybe that would be my second choice, if I'm reading you accurately that you have constant pain in your eye(s) but not much pain anywhere else. I've had surprisingly good luck with walk-in medical clinics in big cities, but again, it's a big crapshoot when you have unusual symptoms. I hope someone sharper and wiser than me will give you better advice.

I think maybe people take off the in-the-nose part and just breathe from the tube.

>>Do you know if Batch has said what he usually pays for everything usually?<< He has said, but I don't remember. Not a shocking large amount, I'm sure. Couple of bucks a day??

My best guess -- and it is just a guess -- would be hemicrania continua, because of the constant head pain with occasional increases in severity. Usually hemicrania continua is one-sided, but it can be two-sided. I don't have the sense that it's primarily located in the eye, though. http://www.ninds.nih.gov/disorders/hemicrania_continua/hemicrania_continua.htm If it is HC, it's treatable with a prescription pill (Indomethacin). If the pain is really mostly in your eye, I would think you might really want to see a real eye doctor -- an opthalmologist, not an optician or an optometrist.. Would love to have a good, simple, inexpensive answer for you, but guesses and ideas are all I have.

Thanks for posting this, AndiD -- and it's great that you've got something that works for you!!!

I would think that any of the masks on this Amazon page -- https://www.amazon.com/s/ref=nb_sb_ss_c_2_10?url=search-alias%3Dhpc&field-keywords=nonrebreather+mask&sprefix=nonrebreat%2Caps%2C212-- should work fine. (Since external links didn't work here yesterday, I'm talking about the page you get when you type [nonrebreather mask] in health, household and baby care.) If you have Prime, then get the Prime one. The reason for the very high prices that are listed on some is that's for a case of them. When you get the mask, you're going to tape over any open holes and remove the strap. If you have a small face, maybe you'd want a pediatric one. Since they're not very expensive and you want it pretty urgently, maybe you should buy a couple of different types???

Batch gets all his D3 regimen stuff at Costco. Yes, I think the Benadryl is more of a corrective when the core treatment loses effectiveness because of pollen than part of a preventive strategy. Speaking of Benadryl, a couple of people at the site here have found that a low histamine diet seems to help. I guess it's a pretty stern dietary regimen, and at least one of those people said he would do it only during a cycle.

Ryan, The table in the D3 file is the most recent daily intake recommendation that I know of. I was in touch with Batch a few months ago and he said he might be issuing a newer version, but that this was sufficient, and he would let us know if there was anything new. He adds Benadryl (2-3/day at the standard recommended dosage) during high-pollen seasons. Most people have very low D levels. Even if they're not low enough to be outside the normal range by conventional medical standards (which they usually are), they're low in comparison to what Batch has determined is needed to address CH. That's why I said earlier that you would almost certainly be safe starting with 10,000IU. In most people, it takes a whole lot of D3 over a long period to induce any kind of toxicity, and the toxicity is quickly reversed just by not taking more D3. Since you're not in cycle now, I would think that taking the 10,000IU and trying to get a blood test quickly would be the way to go (hoping maybe your father can help with that -- I'm pretty sure that a standard baseline blood test includes D levels). Batch recommends starting at 10,000IU for a few days in any event, just to be sure there are no unusual complications.

Perhaps CHF could attach those papers in a pm? Might work. There is a great one to show co-workers and employers. --------------------------- Good idea. I'll try. It's odd that we can attach things to PMs but not to posts. Meanwhile, spiny, can you inform someone that links to external sites are now not working -- that is true of links placed into posts, but also true of links from other parts of the website. So, for example, the second and third items on the home page under Cluster Headache/Treatment (here https://clusterbusters.org/medical-research-reports-studies-case-reports-links/)don't work (I didn't check any more than that).

I feel quite confident that you could start the D3 regimen right now at 10,000IU/day. Can't say that for certain, not being a doctor (although most doctors freak, wrongly, about such "high" doses), but I feel 98.72% certain that it's true. Don't know what's up with those links. For treatments, google [peter goadsby treatment of cluster headache]; for the JAMA oxygen article, google ["High-Flow Oxygen for Treatment of Cluster Headache"]; for our oxygen paper, go to the homepage of this site and look under the "Cluster Headache" tab. Work: There have been some documents created to explain cluster headaches to others. Unfortunately, since we can't attach things here, I'm not sure how to provide it to you. If you get oxygen and your workplace permits it (which I think they have to under ADA), you can bring a portable tank with you, and you'll abort your attacks in 10-15 minutes or less. Many people find that quickly drinking an energy shot or energy drink reduces the severity of attacks or even aborts them. The energy shot in combination with oxygen is usually highly effective. Research: I don't think there's been much conclusion reached, but the hypothalamus is definitely involved. How it's involved seems to be unclear. I'm not sure what to tell you here, except to google away. Maybe you'll be the one who figures it all out! Busting: Just to note that there are some effective busting treatments that are 98% guaranteed not to cause any kind of trip at all, and where the substances can be purchased and possessed legally. Just something to keep in mind. You are so much doing the right thing by attacking all this while you're not in a CH cycle, and I'm so glad you have your father as a potential resource!!!

Well, in my view, you couldn't have described CH much better. It's hard to imagine what other condition you might have. So . . . the primary reason you need a diagnosis is to get meds -- principally, oxygen, verapamil, and injectable sumatriptan (and maybe a prednisone taper). Any doctor can make those prescriptions if, as you say, s/he diagnoses what you have as CH. So the first question is whether your family doc is educatable. S/he probably hasn't experienced patients with CH (or, as you say, has misdiagnosed it as something else, which happens very, very often). If you have any hope of enlightening your PCP, you could bring or send in advance something like this document: https://ouchuk.org/sites/default/files/downloads/precriber.pdf Nurses, nurse practitioners, and even assistants can sometimes be easier to educate than doctors. If you can get to a diagnosis, treatment options are clearly listed in many places. Here's one clear statement from the journal, Headache: http://www.achenet.org/assets/2/7/GoadsbyCluster.pdf (Even if you get this far, it might be hard for you to get an oxygen prescription from your PCP. S/he has probably never prescribed it, doesn't even know how to prescribe it, and will be worried and self-protective. We can cross that bridge if you come to it. The document you want to show is this one: http://jama.jamanetwork.com/article.aspx?articleid=185035. Oxygen is the #1 prescribed thing you want to have, by far. You can easily set up your own system using welding oxygen, and if you don't have O2 as you get closer to your next cycle, you should probably go this route. There's a discussion of oxygen here: https://clusterbusters.org/oxygen-information/) One reason to see a doc now is that the possible preventive, verapamil, is something you might want to start ahead of your next likely cycle. You should, in my opinion, start the D3 regimen right away. It helps to have a basic blood test to know what your vitamin D level is, since that could affect your dosages. Here's that information: https://clusterbusters.org/forums/topic/1308-d3-regimen/ This site was founded by people for whom "busting" -- using potentially psychedelic medications in amounts that might or might not result in what are commonly called "trips" -- turned out to be the most effective way of ending CH cycles or even preventing cycles from occurring. "Most effective" meaning that it worked and had no side effects except for the possible "trip." You should read the first five or six numbered files in the ClusterBuster files section to get a sense of what busting is and how it's done. Depending on your inclination in that direction, some folks would definitely urge you to do a bust soon as a possible preventive step. It's great that you're not suicidal. Imagine the world of not very long ago, when there was no internet, and people with this condition would go for years and years without an accurate diagnosis, if they ever got one. Being told they were crazy or overreacting. Having teeth pulled because of that molar pain. Having sinus surgery because of that sinus pain. Etc. and etc. And most of the treatments that work, such as the D3 regimen and busting, are disseminated almost entirely through the internet. And even oxygen didn't really get a medical seal of approval until recently -- and still, most docs don't prescribe it. You are on a good path for managing this condition! At the same time, you might want to make an appointment at a headache clinic now, since there can be really long waits. Cleveland Clinic has a good reputation for CH diagnosis and treatment, but it does seem that many major medical facilities have headache centers.

jimmy', Google "welding supplies" and the name of your town. Pretty much all you need to know about getting welding O2 in this thread, beginning after the first few posts: https://clusterbusters.org/forums/topic/4264-i-need-help-please/?hl=%2Bwelding+%2Bcubic+%2Bstory#entry46577 Preferred sources for seeds are www.tranceplants.net (considered to be good seeds, good price; located in Canada, so delivery can be slow and faster delivery is expensive) and www.iamshaman.com (an old standby still used by many people) You probably want to order at least 250 seeds.

I once saw a Facebook post (you've probably seen these) that said something like "Don't confuse your google search with my medical degree," and I just flipped out. My blood is rising just typing that. I don't mind so much that docs don't know about CH, but that they time and time again won't bother to even look it up, and that they won't prescribe O2 because, basically, they don't know how to write the prescription . . . Oh boy, here I go. I don't know whether this JAMA report might help you with an O2 supplier or doctor or nurse at some point (I did help me with our supplier, which was not Apria): http://jama.jamanetwork.com/article.aspx?articleid=185035 I know that many people with CH just give up, and I really admire you for not doing that. It isn't just the frustration and exhaustion with the medical community, it's that what they get doesn't work, and it's so heartbreaking. You can only get your hopes up so many times. I really hope that what we've discussed will help you. You sure as heck deserve it.

Yes, there was a big capsaicin craze a while back. I can only say that I have never actually heard of anyone who found that the relief was close to being worth the discomfort. Even though CH treatments haven't progressed nearly as fast as they should have, I think a lot of the strategies--virtually all developed by people with CH, not by the medical profession--have made it less necessary to resort to crazy s--t to deal with CH. Those strategies would include effective high-flow oxygen, energy shots/drinks, and the D3 regimen, as well as melatonin for some, and other awarenesses, such as staying away from MSG, which is a big trigger for many people, and of course busting. (Speaking of MSG, lately there have been a couple of people here who have reported substantial benefit from a low-histamine diet.) Your O2 situation is unfathomable to me. Someone better informed than me might be able to figure it out. You do have tanks of oxygen, right, and not a machine that makes oxygen from room air? Why would they give you a mask with a hose that only let 4 lpm through? You want to get a decent mask quick. If you don't order the "ClusterO2 kit" mask right away, just go to amazon and order one non-rebreather mask. If you have Prime (or if you pay a little extra) you'll get it in a couple of days. Or for that matter, demand that Apria give you a non-rebreather mask with proper tubing, for God's sake. That's their freaking job, which you are paying them for. I'm not sure how much I would rely on your delivery guy for help and advice -- Apria ought to have some kind of respiratory specialist on staff who knows something, or is willing to learn something. I'm not sure I really like your neurologist, either, if you have described any of this mess to him and he hasn't corrected you, or stepped in to correct the situation. Speaking of your neurologist, are you taking any kind of preventive -- typically, that would be verapamil. Of course, I don't know how the classic CH meds interact with your MS or other conditions you might have, but typically the first-line pharma response to CH is (or should be) oxygen as an abortive, verap as a preventive, and injected sumatriptan (Imitrex) as a backup abortive. A steroid taper helps some people. It's generally believed that one needs to do the full D3 regimen, as listed in that file I linked you to. Don't do only the D3. There's something about absorption and secretion that's affected by the other elements. You understand that whatever I say here is just my observations, although they are observations based on having read well over 10,000 posts here over the past however many years it is, and participating some at other boards. With anti-depressants, there always seem to me to be a roughly equal mix of "helped me," "no effect," and "made it worse." That's actually true for lots of things, all kinds of meds. People often say that CH is so tricky that way, that something that works for one person won't work for another, but I have to say that I also attribute it to the perfectly understanding hypervigilance of people with CH and the unpredictability of the damn attacks themselves, so there's a lot of attribution of effects that is real for the person saying it but not necessarily more than anecdotal information. Oxygen, on the other hand, works in more than 90% of cases when it's done properly, and I would give the same success rate for Imitrex, and darn close to it (at least in terms of reducing attack severity and frequency) for D3 as a preventive and energy beverages as abortives. I'd say busting might be 75% effective (or at least it can take some time to find the right busting substance), and verapamil is pretty darn effective although high doses can have substantial side effects. Unless I'm forgetting something, in my view the rest is pretty much a crap shoot -- indeed some things work for some people and some for others. And with these you're getting into pretty substantial side effects, too: lithium, gabapentin, topamax . . . Two last thoughts: (1) A few people here have said that putting their feet into a bathtub with very hot water in it helps them abort their attacks; and (2) As much as I hope you stick around here, you should know of two other places where you can get good information and advice. One is www.clusterheadaches.com, where meds and non-busting alternative treatments get discussed pretty well, and the other is the Facebook group, Cluster Headaches. That's a closed group, so you have to request to join, but we can probably help you if that process is slow. I'm not very fond of the Cluster Headaches group, because in my view there's a lot of opinion being presented there as sound advice, but the people are generally very very good-hearted and there's a lot of really nice emotional support. Both here and at clusterheadaches.com, the search bar at the top of the page can lead you to some interesting stuff. (As you've noticed, this site is pretty empty these days. Seems like most folks have migrated to Facebook.)

Fascinating, about the cannula, but kind of puzzling to me. I think it's fair to say that most people get very little benefit from the cannula, which I had assumed was because the air flow is so constricted. Of course, you can cause the O2 to "blow up your nose with force" by inhaling through your nose with the mask on, can't you? Even more force, I would think, but maybe not. You can buy a humidifier, sometimes called a "bubbler," to hook into your system so the O2 is less drying. You don't have to get the O2 in through your nose, though some people think that works faster. The mouthpiece is very effective for many people, and there's no nose-breathing involved with that. With a good system and good breathing, you should be able to abort most attacks in less that 10 minutes. You have to keep an eye on your D level when on that regimen, to make sure that the level doesn't get too high. If your doc took you down to 4000IU because you were too high, you'd have to be careful. Since practically nobody is actually too high at 4kIU/day, I'd guess your doc was just doing a doc thing . . . but be sure to check.

Thanks, Mle! Great advice. Glad you fought that fight for your O2. So ridiculous that so many have to -- or don't even learn about O2. First, some answers to some of your questions: Shrooms?? Not sure exactly what your question is here, but you can read plenty about using psilocybin mushrooms (and other "psychedelic" substances) to treat CH in the ClusterBuster Files section of this site. Maybe 1, 3, 4, 5, and 6 will give you a good start. Just skim if you have to, and then ask away. How much vitamin d3? The "D3 regimen" is here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ It's a whole thing to do, not just taking D3. It really has helped lots and lots of people. Does melotonin work and how much? Works well for some people. The general advice is to start at 6-9mg/night and adjust from there. Caffeine and how much? Definitely helps most people reduce the severity of an attack, or even sometimes abort them. Drink it down at first sign of an attack. Energy shots, such as 5-Hour Energy, are preferred by many because they have plenty of caffeine (more than a cup of coffee and more than many full energy drinks), and because they also contain taurine, which some people think is also helpful. I'd say most people like them quite cold. Some people do okay with a strong cup of coffee. You can get shots/drinks with very high amounts of caffeine. Some people are quite fond of them, others don't find they need that much. I'd say the split is maybe about 50/50 between people who say they can get back to sleep with no problem after aborting a nighttime attack with a shot/drink, and those who have more trouble getting back to sleep. You're not the first person to say that vigorous exercise can bring on an attack. It's not universal, but quite common. A thought: These days, more people are going to higher flows of O2 (25 lpm or more), which allows them to breathe effectively and not have to wait for the bag to fill up before their next inhale. Reduces abort times for some. And . . . I'm not sure exactly what you're saying about the mask, but, yes, not using the strap, and just pressing it against your face with your hand, will eliminate the risk of falling asleep with the mask on. If you don't have this mask (or the earlier version, which was called the Optimask), many people say it also cuts down abort times: http://www.clusterheadaches.com/ccp8/index.php?app=cms&ns=display&ref=splash(It also has a nice breathing tube so you don't have to use the mask at all if you don't want to.)

Nicolas, sumatriptan should never be injected into a muscle, or a vein. Take a big pinch of skin between your thumb and index finger and hold it. (Your thumb and forefinger should be about an inch and a half apart.) This pulls the fatty tissue away from the muscle and makes the injection easier. You seem to be using a different method from the one recommended in the videos. In the "standard" way of doing this, you just use the syringe that's inside the injector, but diasable the autoinject, so you can push the sumatriptan out of the syringe with a device such as a Q-tip or pencil tip. Here's another video illustrating that: I'm not saying there's anything wrong with what you're doing; I'm just suggesting that maybe it could be easier.

"MM" is "magic mushrooms" -- mushrooms containing psilocybin. (Also referred to here in other ways, including "psilo" and "shrooms.") Before you immediately think that this is not for your mother, you should probably read the numbered files in the ClusterBuster Files section. There are some other forms of treatment with "psychedelic" substances that can be quite effective and are very unlikely to cause any actual psychedelic effects. Depending on what your mother has tried, this might be a very reasonable option for her. If this method of treating CH, which is called "busting," wasn't very often effective (with far less side effects than conventional treatments), this site wouldn't be here. If you can give us a fuller history of what your mother has done and is now doing to treat her CH, we can perhaps give you some other kinds of advice. MOST IMPORTANTLY for now (until you tell us more), does she have an optimized oxygen system: high flow (at least 15 lpm, but higher flow rates are preferable) and a high-quality mask? Although this is CH treatment #1 for stopping attacks, it is just amazing how seldom people have it. More here: https://clusterbusters.org/oxygen-information/ If you are going to give us more information, it would be best for you to start a new thread in a different section ("Theory and Implementation" or "Share Your Busting Stories").

In the US, one 6mg Imigran injection (called Imitrex here) is often more than $100 without insurance! You should be fine with 3mg. Many people find that 2mg is enough.