CHfather

Indomethacin can be quite hard on your digestive system. I'm no doctor, but I have seen people here report that they were told to take it along with some kind of proton pump inhibitor (prilosec, prevacid, nexium, etc.) to help protect the gut. I think it's more of an abortive than a preventive (don't know this), so I think you would be taking it when one of your bad periods begins, but I don't really know. You mention that burning in your nose from the biofreeze having helped you once, but not helping again. Just so you know -- there are hot-pepper-based medications that are put in the nose that help some people with CH attacks (for others, all that happens is that they have a very painful nose in addition to the attack -- effects seem to vary very greatly). There's a spray called Ausanil, I think, and some creams. Best wishes to you!!!

Have you looked into hemicrania continua? It seems like at least some aspects fit your symptoms (most importantly, the long-duration pain). Here's one description. http://www.webmd.com/migraines-headaches/guide/hemicrania-continua-symptoms-treatment There's something similar (I think), paroxysmal chronic hemicrania, but that might just be different names for what is essentially the same thing. To extent we trust any gender associations, these are said to be more common among women. The good thing is that if this is what you have, the drug indomethacin treats it quite effectively.

Up top there, in your original post, it says that thing I just quoted. Octreotide is also a somatostatin analog, and I gather that's saying that pasireotide binds better to those receptors than octreotide does. I remember first reading about octreotide as a possible CH abortive at the Mayo Clinic page about CH, but I'll be darned if I can remember anyone here ever saying they were taking it for CH. I think I looked it up at ch.com once, and there were some people with chronic CH who found it helpful. Seems to be a lot of serious medical literature saying that pasireotide is better than octreotide in quite a few non-CH situations (that's just what I'm getting from a very superficial flyover), so maybe it could be a good thing. And it could be that 30 minutes is just some kind of measurement parameter they set, even though they might be hoping for much better than that. I think I saw that this study was going to use placebos. I guess one would expect that a solid study would . . . but my greatest admiration always goes out to people with CH who are willing to risk taking a placebo during an attack in order to test a possibly effective medication. Many folks did that to test that GammaCore device (using a fake device in that case), and my hat is off to them.

Looks like it's in Philadelphia (click on "contacts and locations" at the top left of this page: https://clinicaltrials.gov/ct2/show/NCT02619617). Gotta say that the goal of stopping a CH attack within 30 minutes seems uninspiring, though I guess for intractable folks it might turn out to be something. A long, long way from any real-world application right now (five years minimum, based on the current clinical trials stage). Looks like it's similar to octreotide, which is sometimes prescribed as an abortive. There's a small discussion of this drug from 2013 at ch.com. Just a person asking about it and posting some info -- no one who had tried it.

Jeebs mentioned that the injections can be split. That's true. The point there is that most people need only 2 or 3mg to stop an attack, but the autoinjectors hold 6mg. (More %&^$ that serves the pharma industry wonderfully but harms patients physically and financially.) Taking the autoinjector apart seems to be easy for some people but quite challenging for others (me, for example). There are autoinjectors with 3 or 4mg, and it is also possible for a doc to prescribe vials of sumatriptan and syringes, so you can measure out your own doses. If your doc is at all amenable, ask about these options. I have the impression that there might be a new kind of autoinjector that uses no needle (???), and that can't be split. You definitely don't want that.

I see from your post elsewhere that you're in the UK. A resource there is OUCH-UK (https://ouchuk.org/). They post the European standards for CH treatment here: http://pathways.nice.org.uk/pathways/headaches#path=view%3A/pathways/headaches/management-of-headaches.xml&content=view-node%3Anodes-cluster-headache It's my understanding that they have helpful advice at that site for being sure you get oxygen. You'll have to dig for that on your own, but I think you'll find it. Maybe some of our UK members here will pitch in with advice.

Jeebs has covered it exquisitely. Read about D3 regimen and busting in the ClusterBuster Files section (busting is the numbered files). Verapamil has to be monitored for effects on the heart when you start taking it, so the initial doses that are given are low -- usually too low to really help, although some people get good quick results. Often a course of corticosteroids (prednisone, usually) is given to try to stop or reduce the pain while the verapamil takes effect. See my google/goadsby reference two paragraphs down. OXYGEN, OXYGEN, OXYGEN. Best and safest abortive. Prescribed maybe 50 percent of the time by doctors, which is more of the %&^$ that's got to stop. Insist on OXYGEN, or set up your own system using welding oxygen (if you decide to do this, we will advise you). Google this (without the brackets): [goadsby treatment of cluster headache]. You'll see all you basically need to know about medical treatments. A usual prescription for trigeminal neuralgia is Neurontin (gabapentin). That also sometimes/often helps people with CH (though for most people the side effects suck). Was that prescribed to you? Did it help? GOOD FOR YOU for persisting! You are on the right path now. A decent doctor would help.

Marijuana, medical or otherwise, does not really help with CH symptoms, except in very rare cases. I get very confused by the initials things (THC, DMT, CBsomething), and I don't really know which if any of those are marijuana derivatives, but I have a vague feeling that some MJ derivatives have helped some people. The D3 isn't really all that complicated (though I agree that reading about it definitely makes it seem that way). We can tell you exactly what you need to take and when to take it, and folks here can tell you how to get it. There's a good chance that your doctor will be freaked out by the "high" dosages of D3 and advise you not to do it. In our opinion that's wrong. If he/she is not freaked out, you might try to get a simple blood test that will tell you your current D level. I'm so sorry for all the mess you're in. I can tell you, and I think most others here would agree, that oxygen and D3 are your best core strategies for managing CH. On the other hand, if you can realistically expect to only have relatively brief CH periods with extended remissions, then I suppose some would say to go with the pharma (particularly insofar as it's covered by your insurance). I think we might suggest upping your verapamil, doing a steroid taper, and riding it out with triptans and O2 if you can get it. I still think it's nuts to be using suma pills, but that call is yours and your doctor's. There is a lot of evidence from people with CH, and from some research studies, showing that triptans create rebound headaches, make attacks worse, and make cycles longer. (BTW, if you get injectable sumatriptan (Imitrex), you can split your doses from the autoinjector so you get two or three doses out of each injector. That reduces the cost somewhat (still obscene) and enables you to use more injections without running into the daily limits.) Also BTW, the silver bullet massager that you mention in another post is used by many as an actual massage tool for the neck and shoulders during an attack, with what some have reported as very positive, or at least soothing, results, That silver bullet hasn't been brought up here in probably five years, so I am reporting from distant history about that.

Usually oxygen isn't administered very effectively in emergency room, plus by the time you get there you've missed the time to get on it, which is at the first sign of an attack. With very few exceptions, a proper oxygen setup and technique will abort an attack in something like 10-15 minutes. An energy drink as you're starting the O2 can reduce the abort time. Roughly 15-20 percent of people with CH use welding O2, either because stupid or uncaring doctors don't/won't prescribe it, or just because over the long run it can be a lot cheaper. Check back with us if you decide to go that route. A neurologist who doesn't mention oxygen and prescribes sumatriptan pills is essentially treating you for migraines. What level of verapamil are you taking? During a cycle, many people find that they only get results from something in the 900mg range. Another big difference from migraine treatment. I'm not saying you have migraines, or even that your neurologist thinks you have migraines and not CH; I'm saying that CH, excruciatingly painful as it is, needs to be treated aggressively with the best possible methods, not with a casual "Let's see what happens" approach. The D3 regimen information is in the ClusterBuster Files. Lots and lots of people are certain that it has either prevented or significantly reduced the severity of their attacks.

As I understand it, there are active Facebook groups in some countries. I believe that for example the Finnish group, led at least in part by Tony Only, has been quite active, at least at one time. Tony has been good (on and off, at least) about sharing ideas and learnings from there. I believe that that group engaged more with the licorice root protocol than this group did, but I have no idea whether that interest faded or remained strong. Certainly the US Facebook group "Cluster Headaches" was more focused on DALT than the folks at ClusterBusters. Guess I'm just saying that there probably are ideas and experiences out there that are not fully captured within this group, whether they are in English or in other languages, and it surely would be good to have some "clearinghouse" to be sure that all valid or even potentially valid knowledge is as available as possible.

Sumatriptan pills are nearly worthless. I'm glad they seem to be helping you, but you really want injections or at least the nasal spray. I know that's not good news with your current situation, but it's fact. You don't have oxygen!?! You need to demand oxygen, or you need to set up your own system using welding oxygen. Oxygen is ESSENTIAL. If you don't have a competent neurologist and won't be seeing one any time soon, you should really consider going the welding route. To repeat: oxygen is ESSENTIAL. You should have been prescribed a preventive medication, not just an "abortive." Verapamil is the most commonly prescribed preventive. Read about pharma options so you know what's available. Google [goadsby treatment of cluster headache] for a simple listing. Plenty of coupons on the internet. For example, www.goodrx.com. Start the vitamin D3 regimen, which you can read about in the ClusterBuster Files section. Try drinking an energy shot such as 5-Hour Energy at the first sign of an attack. Try melatonin at night, starting at 9mg and working up as needed. Some people find that putting their feet in a tub with water as hot as they can stand helps calm an attack. Read the list of triggers in the ClusterBuster Files section to be sure you're not creating any unnecessary attacks for yourself. Consider busting (read the numbered files in that CB Files section).

I'll let others suggest. You don't list not doing intake interviews as one possible accommodation, and I assume that's because it's either impossible to have your assignments changed in that way, or not something you want to give up. But under ADA, "Reasonable accommodation is any change or adjustment to a job or work environment . . . . For example, reasonable accommodation may include . . . job restructuring . . ." And I'm sorry to take this in the direction you didn't want to go, in a way that I'm sure will irritate you, but "knowing about D3" and "understanding busting" are not the same as doing them, and ultimately, not having chronic CH is the only way you're going to restore your ability to do this work in the way you want to do it, and D3 and busting have shown themselves to be the best ways that I know of to accomplish that. Since you've made clear that none of this is what you are asking for, you don't need to reply. As I say, I hope others will make more of the kinds of suggestions you are looking for. Best wishes.

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.