CHfather

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.

Welcome Nicolas (and your English is excellent!). I'm glad you are getting good relief. I can't answer your question anout the ringing in your ears, but I wanted you to know about this method for using less sumatriptan with each injection: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ You might reduce the time it takes to stop an attack with oxygen if you drink an "energy shot" (such as 5-Hour Energy) or "energy drink" (such as Red Bull) or even just a strong cup of coffee just before you start using the oxygen. Also, this mask helps many stop their attacks more quickly: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit Maybe someone from Europe can say whether it is available there. Best wishes for continued success.

THANK YOU for continuing to let us know, and SO HAPPY for what you are experiencing. You so deserve it!

Just sent you Batch's email address.. Someone once explained the 5-day detox from trex, but I'm not remembering well enough to recap it. It's been an article of faith here since the beginning, based on the experiences and knowledge of the busting pioneers. And folks that I have seen here who have tried busting without detoxing have not had good results. (On the other hand, verapamil was once considered a blocker of busting, but now it turns out it isn't, at least at relatively low levels.) Lithium has worked well for some folks. You have to get monitored pretty frequently, and I have read that the rebounds after stopping it can be pretty severe. I was just reading a new study of occipital nerve blocks in 110 people with CH that reports substantial reduction in attack frequency. I have to admit that most reports I've seen here and elsewhere about ONBs have been disappointing. Maybe they have a better method now. Not to be too discouraging, because an ONB might definitely be a reasonable thing for you to try, but in general it seems that medical studies of CH medications show better results than people get in the real world.

Well, I'm kind out of of gas. At the risk of just being pushy, I would recommend trying the D3 again -- it works for so many people. I know that if you want to try it again, you can ask Batch for advice. He's the person who developed the D3 thing and has been watching over it with great attention over the years. He's pretty much convinced that he can get it to work for anyone. He's a great guy who is very responsive to requests for assistance--he really likes to help. If you want to give it another go, I'll be happy to PM you Batch's email address. The CH expert Peter Goadsby says that 960 mg/day is maximum dose for verap, but it's important to go up slowly and monitor the heart. You didn't say anything about splitting your trex injections (assuming they're injections), although maybe that's also covered under "tried all of those." Maybe busting is the route for you to go. I didn't mention that before only because you'd have to stop using the trex for 5 days before busting and during the time that you're busting, which could mean at least 15 days of no trex while still having attacks (of course, you might be among the lucky ones who can knock out a cycle with one dose, but you pretty much have to count on three). It didn't sound like you are really ready for that. Of course, there are plenty of other meds that work for some people: prednisone, lithium, gabapentin, topamax. Somehow I imagine that you might have tried some or all of them already. Wish I could be more helpful. I'm hoping someone else will be.

Do you have a good O2 setup: high flow rate, good quality mask? If so, are you staying on the O2 for 5-10 minutes after you've killed the attack? That tends to keep them from coming back. Unfortunately, use of triptans, and of course particularly overuse, has been shown to cause rebound headaches, make attacks more severe, and extend cycles (not to mention potentially killing you). If you're injecting, you NEED to know this: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Strongly suggest starting the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ 360 is a relatively low dose of verapamil, if your doc says your heart can handle more, Tried melatonin at night (starting at 6-9 mg and working up)? Tried an energy shot (5-Hour Energy, etc.) at the first sign of an attack? Some people find that putting their feet in a bathtub with water as hot as they can stand helps abort.

I know you want to keep this simple, so I'm just asking . . . . Time of day? Duration of attack? Only MM, or will it be able to accommodate LSA or LSD info? Notes of some kind (for example, effectiveness of O2 or an energy shot/caffeine)? When you have an "option to add the amount" after VitD but not after MM, I just have to wonder whether you're planning to have an amount option there, too. I'm not quite sure what the "amount" info would look like with the "D3 intake" category, since there are a lot of pills in that regimen. If this is something that would be printed out and brought to a doctor (or perhaps, as you say, sent directly to a doctor electronically), will there be an option to removed the MM/LSA/LSD part? Not everyone will want to share this with a doctor.

I think you are correct to doubt that you have CH. (I'm not a doctor.) Your symptoms hardly sound like CH at all, especially the absence of excruciating pain. The only other kinds of chronic headaches that I know of that are one-sided are chronic migraines and hemicrania continua, but you don't describe having some key symptoms of either of those, either. In the short run, you might try some ginger, which helps with the persistent low-grade pain in CH and migraines. Here's some info: >>>A teaspoon of ginger simmered in a cup of water, sweetened to taste, is a pleasant way to hold off the shadows for a couple of hours. Ginger doesnt dissolve well, so simmer the powder or finely chopped ginger root for a while, and keep stirring while you drink. In hot weather, a very strong ginger ale or ginger beer can do the trick enjoyably. Look in health food stores or delis for brands such as Reeds Extra Ginger Brew, Ginger Peoples Ginger Beer, Natural Brew Outrageous Ginger Ale or Blenheim 1903 Hot Ginger Ale. The usual ginger ale used for mixers, such as Schwepps or Canada Dry, is not strong enough. A company called The Ginger People makes strong ginger candy in several varieties (www.gingerpeople.com)<<<. Did your doctor prescribe anything? As I say, it doesn't sound like you have hemicrania continua, but the prescription drug indomethacin is a very effective treatment for it, so you could rule that out (or in) pretty quickly.

MSG is a bad one for a lot of people, for sure. In fact, now that you mention it, one reason I had to stop traveling to Mexico was that (a) there was MSG in a surprising number of things where you wouldn't expect it, and ( if you asked a waiter if there was MSG in a dish, 98% of the time they had no idea what you were asking about. (I agree that there are a whole lot of sneaky names, but I don't think high fructose corn syrup is one of them.) I got severe pancreatitis attacks from MSG (a pretty darn painful condition in its own right), and it took me several years to figure out that MSG was causing it. Most doctors still today wouldn't guess that MSG could cause pancreatitis.

Every once in a while, someone says they quit smoking tobacco and their symptoms improved. Most people don't experience that improvement, and there are lots of non-smokers/never smokers with CH. I think the same is true for pot, but maybe others can comment better on that. A person just recently posted that a serious low histamine diet helped him/hder a lot, and someone else who was trying it also reported good results. https://clusterbusters.org/forums/topic/4446-low-histamine-diet-worked-for-me/?hl=diet Lots of vegetarians with CH; lots of people who eat carefully. Every once in a while someone reports that some kind of strict diet helped. Ayurvedic; elimination; gluten-free . . . there's rarely enough follow-up to know how it turned out over time, or whether others were similarly helped. Type the word "diet" into the search bar on the home page and you can check it out for yourself.

I doubt that the naproxen will help you. You want to know that you can divide your imitrex injections (if it's injections you're using): https://clusterbusters.org/forums/topic/2446-extending-imitrex/ An energy shot (5-Hour Energy sort of thing) or energy drink (RedBull sort of thing) will sometimes abort or at least lessen an attack. If you're willing to do psilocybin mushrooms, read more in the "ClusterBuster Files" section and ask questions. You have to be "detoxed" from Imitrex for 5 days. I suppose you could go the pharma route with verapamil as a possible preventive and oxygen (?) or split-dose trex as your abortives. So, what are the chances of getting oxygen and bringing it with you? One way or another, I'm sure you could get a mask and a regulator, but I have no idea about the availability and/or quality of the actual O2 you could get--and I don't know how you're traveling and how transportable O2 would be. I see that you can rent tanks, regulators, and masks in many major cities/tourist destinations (for example: http://www.handicapped-services.com/oxygen.html).That might be outside your budget. It doesn't appear that you would need a prescription. You don't mention oxygen as something you've previously used, so I'll just tell you that it's the best and safest abortive there is. You could also try the D3 regimen, if you can get what you need. I would imagine that American big-box stores like Costco and Walmart, which I know exist in some places there, will have what you need. The developer of the D3 regimen got all his supplies from Costco, and I see that there's an online costco in Mexico, too: costco.com.mx The regimen is described here: https://clusterbusters.org/forums/topic/1308-d3-regimen/

metcraft: See https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Do you have oxygen??????

Bob, best wishes for a positive outcome for your wife. I hope you are managing to take care of yourself, too.

Welding oxygen? D3: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Seeds: www.tranceplants.net or www.iamshaman.com There have been a couple of folks here who have gotten significant quick pain relief by putting their feet into a bathtub with water as hot as they can stand. And what about energy shots (5-Hour Energy, for example)? They often work pretty well if taken at the first sign. Most people think cold is better for the shots.

Are you sure you can't get that injector open? See the bottom of this page: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Why don't you set up an O2 system using welding O2? What about seeds? Really, no doctor will see you? We called around to walk-in clinics that would take cash and said they would prescribe trex for CH. Brought documentation of CH from previous doc; got trex prescription. Can't you restart the vitamin D3 regimen? Take melatonin at night?

So sorry to read of this really, really tough and sad situation! I feel pretty sure that everyone here can relate to what your wife is going through, and we know how incredibly hard it is to see someone you love going through that pain, let alone considering suicide. Mit''s questions/suggestions are the right place to start trying to help, if only because they might be things your wife hasn't tried -- or maybe not properly tried -- yet. Here's the info about the D3: https://clusterbusters.org/forums/topic/1308-d3-regimen/ In the third paragraph there's a way to send a message to Batch, who developed and refined the D3 regimen. If I were you, I would get in touch with him -- he won't mind, I promise -- and have his help in making sure she's doing this as correctly and effectively as possible. Most people who have "tried" oxygen and found it didn't work are not doing it right. High flow (15 liters per minute at the absolute minimum), good quality non-rebreather mask, and effective breathing technique are essential. It's probably true, I guess, that she must have tried everything, if someone was willing to do two brain surgeries on her when she's had CH for "only" two years. What were her brain surgeries? But lots of people say they have "tried everything," but then it turns out that, for example, the Imitrex they were taking was in pill form, which is completely useless, or as a nasal spray, which is often useless. Was it injections she was taking? Or we find people who haven't tried a steroid taper, or a preventive such as verapamil. It could be that some of the available treatments weren't available to her because of her other medical conditions. Now, we have a member here who, if he's listening, can tell you about rising from the deepest depths, after brain surgeries. He used "magic mushrooms" (mushrooms containing psilocybin) and the difference was amazing. Many people here have treated CH with success using psychedelics, having come here out of desperation, as a "last resort." Marijuana probably won't help her -- makes it worse for a lot of people. If you want to consider mushrooms or other forms of "busting" with psychedelics, you should read the numbered files in the ClusterBuster Files section and then get back to us. (A big challenge with starting the busting treatment is that you have to not be taking a lot of meds, because they interfere with the effects of the psychedelics. See the file "Playing Well Together" over in the ClusterBuster Files section.) It's odd, though obviously not impossible, to be so severely chronic so quickly, and have nothing at all that helps. When oxygen (if she was using it properly), triptans (if they were injectable), energy drinks (downed at the first sign of an attack), and other usually-helpful first-line treatments don't help, you gotta wonder if she has some other condition that looks like CH. Has a hemicrania continua (HC) diagnosis been looked into? Has she tried indomethacin, which treats HC but does nothing for CH (just as CH treatments do practically nothing for HC)?

I hope this works for you, AndiD, and please keep us informed. As you say, not much online. I did see a thread over at clusterheadaches.com, from 2010, where a person with intractable CH felt that Namenda (a brand name for memantine hydrochloride) was helping, but there wasn't any substantive follow-up. PF wishes!

SSRI antidepressants have very mixed history. Some people say they help, many say they make things worse, some say they seem to make things better. Here's a thread that contains them all (you might have to register to see it). http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=sep2003;action=display;num=1062963166 That's a good site for info about CH and meds.

So sorry, defiance. I really feel for your father. He's far from the first CH patient to become difficult when dealing with this awful condition. I had to fight my daughter every step of the way to get her oxygen (she has CH, not me). She even wouldn't try it once I had it set up, until she got desperate one night -- and it changed her life. I will never forget her laughter as the pain washed away. It's terrible, but also not uncommon, to have an uncaring moron for a doctor. You would think he might just look something up, right? Here's a document from the American Headache Society that might help him stop being a cruel jerk: http://www.achenet.org/assets/2/7/GoadsbyCluster.pdf But probably not. There's a list here of recommended doctors: https://clusterbusters.org/cluster-resources/ Maybe you can get him to one of those, or at least to a headache center, where the likelihood of helpful diagnosis and treatment is pretty high.