CHfather

That kind of thing is so infuriating. Here in the US we have the reputable quacks on TV or in print telling people that capsaicin is the miracle treatment for CH, or some other similar nonsense (not to mention plenty of clueless doctors with their own unsubstantiated ideas about what to prescribe/what advice to give for CH).

Coz, so sorry . . . That does happen, when shrooms stop working. It's not even all that rare. Sometimes they start working again, later in the cycle or in a future cycle. Of course, it's important to know that the shrooms you tried were not too old or otherwise compromised, and to be sure you are not using any medications that might block the effects of the shrooms. No idea what the situation in Cyprus is, but if shrooms stop working, many people find that a different busting agent will work for them. Seeds, paper, and others.

non-rebreather mask. Good for you for fighting for yourself. Remember that welding oxygen is an option that many (~20%) of people with CH use. You get the tanks from a welding supply place and the mask and regulator from Amazon, Ebay, or another internet site. Why the hell can't he just look it up if he lacks knowledge. Criminey.

Lewis', you are getting really bad advice from your doctor. He is responsible for the way you are suffering right now. For one thing, indomethacin works for hemicrania, but it never or practically never works for cluster headaches. So if it worked (or didn't work), there would be no confusion. And as I have said, sumatriptan tablets are useless for at least 85% of people with CH. Pizotifen (which I have not read of being prescribed to a CH patient before) is not even a first-line treatment for migraine (from Wikipedia, which is actually quite reliable regarding medical conditions: "it is usually not the first choice medicine for preventing migraines, instead being used as an alternative when other drugs have failed to be effective.") I don't know what to tell you, except that you need a decent doctor who gives a crap about your suffering. There are standard resources that every doctor has that tell him/her what effective prescriptions are for various conditions: If your doctor consulted that, you wouldn't be getting useless medicines. There is a list of recommended doctors as the second pinned post at the General Board. (The standard pharma prescription is oxygen to abort, injectable or nasal Imitrex for breakthrough attacks, and verapamil as a preventive. A doctor could also put you on a course of steroids such as prednisone, which often takes away the pain for a few days and serves as a "bridge" while the verapamil dosage is leveled up.) In the short run: Many people with cruel idiot doctors are forced to set up their own oxygen systems using welding oxygen. You could do that, particularly since O2 helped you in the ER. You should start the vitamin D3 regimen that's described in the ClusterBuster Files section. You could try melatonin at night, starting at 9mg and working up to the level that works for you. Try drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack: for many people, that will reduce the severity of the attack or even sometimes abort it. Some people find that putting their feet in very hot water in a bathtub during an attack helps them. Not having oxygen, some people find that sticking their head in the freezer or up against a full-blast air conditioning vent and breathing deeply can help. For the longer run, you should give busting some serious thought (read the numbered files in the ClusterBuster Files section). I hope some of the stopgaps help you, and I really hope you will find a better doctor.

Laurie, my posts were responding to Lewisjones, who started this thread. Honestly, I can't think of why you thought I was responding to you or somehow dismissing your pain. No one here would do that. You say that you have tried everything, and you are about to give shrooms a shot. Lots of people have come here having tried everything, at their wits' end . . . and found that busting gave them their lives back. I hope that's true for you. You don't ask any questions about busting, so I'll assume you have read the files and know what you are doing. I can imagine that maybe you have not done the vitamin D3 regimen, which has helped a lot of people, including many with chronic CH. It's described in the ClusterBuster Files section.

For most people, from what I have read (which is a lot), it seems that early CH attacks are very severe, more severe than what you are experiencing. I'm sure that for some they start out milder and ramp up over time. Practically everything about CH is a mystery. Indomethacin seems to be a very strong NSAID. It causes digestive-track issues that are more significant than naproxen, for example. It is specifically recommended for hemicranias (not NSAIDs generally). Sumatriptan tablets are generally useless for actual CH attacks. They take too long to get into the system. Nasal sprays work for some; injections are the most efficacious (but not without significant side effects). As Potter said, inhaled oxygen is a highly effective abortive for CH attacks. If you have CH, that is what you must have. I'm hoping that maybe you don't have CH.

Lewis', You might have a hemicrania, such as hemicrania continua, which is treatable with a medicine called indomethacin. Given that you have CH-like symptoms without CH-level pain, it would be worth checking that out, I think.

Sure does sound like CH. Everyone here will tell you that oxygen is essential for CH. For whatever reasons, many or even most neurologists don't prescribe it. I could go into the possible reasons, which include not knowing how to write the prescription, but you just have to be ready for that, and ready to insist as much as possible. Yes, bring an advocate with you. Here is the article from the Journal of the American Medical Association demonstrating the effectiveness of oxygen. Wouldn't hurt to bring it with you, or maybe even send it in advance to an assistant or PA. http://jamanetwork.com/journals/jama/fullarticle/185035 Yes, people with CH are remarkably strong (I'm not one of them; I'm just a supporter of a family member with CH). But the right strategies -- including serious consideration of busting -- will make it much more manageable for you. I don't think it could hurt you to start the D3 regimen right away.

Rod is right that you have to read. But starting with some basics (and assuming that you have CH): google [goadsby treatment of cluster headache] and you'll see a straightforward discussion of pharmaceutical treatments. The anticonvulsants (typically gabapentin/Neurontin or maybe Lyrica) are not first-line treatments, although they do work well for some people. This is something you'll probably learn -- things that work for one person don't work for another. Usually the anticonvulsants make you feel addled and dopey -- but not for everyone. You probably are not yet taking enough calcium channel blocker (verapamil, probably) to be fully effective. Dosage during a cycle can be in the 960 mg/day range -- but it should be monitored from the beginning for side effects. As Rod says, OXYGEN is what you want most. Be prepared to demand that. And don't assume that a neurologist will know what s/he is doing. You might get lucky, but most are pretty darn clueless, so be fully prepared to advocate for yourself. (A course of steroids can hold back the pain early in a cycle so that the verapamil can kick in more, and sumatriptan injections or nasal sprays are very good for aborting attacks, though many feel that they extend cycles and create "rebound" attacks.) Most people find that non-prescription treatments are most effective. The vitamin D3 regimen, described in the ClusterBuster Files section, has helped hundreds. Busting (using psychedelic substances, sometimes at non-psychedelic levels) has been a godsend for many (see the numbered files in the ClusterBuster Files section). Melatonin at night, starting at about 9mg and working up as needed, has helped many. Quickly drinking an energy shot such as 5-Hour Energy at the first sign of an attack is a big help for many (for some even a strong cup of coffee works well).

Well, yes it does. Thank you.

In the "Study Details" part, it says you have to live in California or New York to participate. I see that there's a Kudrow involved. That seems like a good sign, since that's a family that has been committed to CH treatment for a long time. But I wish they had satisfied my curiosity a little more about what's being studied (a device? a medication? . . .).

I can't tell you anything about microdosing, crimson'. It's been mentioned here and discussed a little, but I don't have the sense that anyone has it down to a science. Hopefully, someone else will be able to tell you something useful. In the meantime, please look into the vitamin D3 regimen that is described in the ClusterBuster Files section. It has helped many people with migraines, too. Were you not prescribed a preventive? I think verapamil is the most commonly prescribed preventive med for migraine.

Thanks, neonate!

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.