CHfather

It's great that you are getting relief. Carbolitium = lithium; Deltacortene = prednisone. Lithium is a good preventive used for some people with chronic CH. Hopefully you will find the side effects manageable and your doctor will help you find the right long-term dosage. It is generally considered a very bad idea to take prednisone regularly because of its effects on bones and joints, among other things. 50mg/day seems to me like a pretty strong dose. When you say you "tried everything," does that include the preventive vitamin D3 regimen? Does it include high doses of verapamil? I assume it includes properly-used oxygen and an injectable triptan. If you did in fact try everything that is typically prescribed for CH and none of it worked, then you might think about whether you have a condition that looks like CH but isn't, such as a hemicrania. The prescriptions you are taking now would probably work against hemicrania, too. Lithium might turn out to be okay as a long-term strategy, but I think you really have to think twice about taking prednisone for an extended time.

Great!!! Consider splitting the injection if it's 6mg (and if you use it): https://clusterbusters.org/forums/topic/2446-extending-imitrex/. This knowledgeable doctor might be willing to prescribe sumatriptan in vials with syringes. You should probably try the triptan nasal spray, too. I suppose you could start looking on your own for O2 suppliers. Depending on your area, Lincare and Airgas are typical big suppliers. Just google medical oxygen. I don't know that many people are using lidocaine to help with aborting attacks, but maybe I've just missed that. What I've read about it is typically a 4% solution, but again, I have very limited knowledge. The MRI is a good idea. As I say, sounds like a good doc! Hooray!!!

Timothy', here's hoping you see a competent neurologist today and you do get a prescription. Let us know. If you don't, you can set up your own system using welding oxygen, as many people with CH have done. We can tell you more about that. Many people without O2 find that an energy shot such as 5-Hour Energy will stop an attack or significantly reduce its severity. Here's a file with a lot of info: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

You have a prescription for medical O2 and you're looking for a supplier? I ask because often a doctor who writes a prescription will have a preferred O2 supplier. Or are you without a prescription and looking for welding O2?

This has been discussed in other threads. I don't think there's a definitive answer, but I think for most people the vaccine wasn't a major trigger. Since there are several threads, you can see them by typing the word vaccine into the search bar at the top right of the page. Not sure you'll learn much, except that reactions vary.

Yes, use O2 and other strategies as primary way of aborting. Split the Imitrex shots (https://clusterbusters.org/forums/topic/2446-extending-imitrex/)! Learn other strategies for reducing the severity of cycles (D3, busting, etc.): https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Many people get good relief from the nasal spray. If you get the injectable, you can divide it into two or three doses. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

I haven't read this said much lately, but it has been recommended by Batch that you take the verapamil and the calcium supplement at least 8 hours apart from each other (Verap being a calcium channel blocker).

elSchreib, What jon says. Since you're new to CH, this overview file might be helpful. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Philip', I don't see anything at the site you linked to above that relates to any kind of oxygen or oxygen-related equipment.

CrystalAnn', you don't say if you are splitting your Imitrex injections. If not, https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Since it's allergy season in many places, and allergies seem clearly to induce CH, I would consider Benadryl, 25mg four times a day, or Quercetin, maybe 1-3 grams/day. https://clusterbusters.org/forums/topic/7417-ditch-the-benadryl/?tab=comments#comment-71582 I don't know anything for certain about this, but maybe it's worth trying: https://clusterbusters.org/forums/topic/5829-does-nasal-decongestant-spray-work-for-you/?tab=comments#comment-73323 Not sure what the welding O2 issue is, but here's a general file about it: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

senya, this is really fascinating information. Thank you for posting it. I understand that you don't use any triptans; do you also not use oxygen to abort? Are you relying completely on the nasal spray? Energy drinks/shots? Anything aside from the spray?

Energy beverages (the 8 oz or larger drinks and the smaller "shots") work because they have a lot of caffeine in them. Some people credit other ingredients, such as taurine. I'm not persuaded about that. So straight strong coffee might work, as it does for some people. A 5-Hour Energy shot is very potent (about twice as much caffeine as a Red Bull, for example), and you can swill it down fast. Some people say the colder the better. Surprisingly, I'm going to say that 85-90 percent of people can get back to sleep quickly after taking it during the night. A non-rebreather mask is fine. Read the file I linked you to for advice about how to maximize its effectiveness. The other link I provided is to a different kind of mask made just for people with CH. Many people say it speeds up their aborts. (It's not technically a non-rebreather mask.) Just to be sure -- you are getting your O2 in cylinders/tanks, not from a concentrator, which is a machine that makes O2 from room air? Cylinders are much better than a concentrator. (Again, there's some advice in that linked-to file about being sure your O2 supplier gives you what you need--for example, at least one very big tank and one smaller one for portability.) 240 mg verapamil might somewhat reduce attacks for some people. It is still a low dose (as is discussed in that file I linked you to). I would say that to the extent that Zomig was making things worse for you, it was from overuse headaches, which are not really the same thing as rebound headaches. If you don't overuse it, it's probably not going to affect your attack rate or the severity of subsequent attacks. I am not a doctor, and there is lots of speculation about the possible "rebound" effects of triptans, but I think I am right about this. Again -- with a proper oxygen setup properly used (along with caffeine), and with effective preventives (I think most people here would prefer the D3 regimen over verapamil), you wouldn't be turning to the triptans nearly as much (if at all). Cambia is an NSAID. If it worked for you, that's great. NSAIDs typically don't work for CH, and I haven't seen any evidence that Cambia does, but maybe I missed it. Cambia is prescribed for migraine. It's relatively slow-acting, which is okay for migraines since they typically last much longer than a CH attack. My point about Zomig is that you said your doctor had prescribed it "as a preventative measure." I was just making the point that it doesn't prevent attacks (the way verapamil is supposed to, or the way the D3 regimen does), it only stops an attack that has started. So yes, you take it at the beginning of an attack. That doesn't mean that if you don't take it in the first couple of minutes it won't help you, so I'm not sure where the specific distinction would be between "the beginning" and "during." More effective at the beginning, but not completely ineffective during (depending, as you have said, on how far ramped-up "during" turns out to be).

Welcome, its'. As we say, sorry you have to be here. First things first. It will make a difference. Sounds like you had a useless system the last time. What is the current flow rate? It's rare for a doctor to prescribe more than 15 lpm, but most people find that flows higher than 15 lpm make for better aborts. Throw down some coffee or an energy shot as you start of the O2, use a good breathing technique, and your life is gonna start changing. Consider getting the mask that's made for people with CH: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit One way in which O2 is going to change things for you is that you won't need a triptan like Zomig nearly as often, because the O2 will stop the attack. Only an idiot would prescribe Cambia for CH and think it was sufficient. Only an idiot would take you off Zomig instead of cautioning you to use it less often. (Zomig is not a preventive. It doesn't prevent attacks. It stops (aborts) attacks that have begun.) Verapamil is a preventive, but 120 mg/day is useless. (Could be that they intended to increase it over time, but 120 mg/day is still a low starting place.) The ice cube to the roof of the mouth (or sucking ice water through a straw to the roof of the mouth) is something that has been recommended here. Glad it helps you. Drinking down an energy shot usually works better and easier, and O2 and a sensible abortive are also going to stop the pain, so very few people have to resort to the ice cube method. We're not giant fans of triptans or verapamil here, but they can have their place. The three things I would suggest you do are (1) Get your O2 going ASAP; (2) Start the Vitamin D3 regimen ASAP; (3) Read this file, which has info about (1) and (2) and maybe some other stuff that might be useful to you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ And (4) Keep asking questions, and (5) Consider busting, at least as something to have in your back pocket for the future. (Busting discussed at the end of the file I just linked you to.)

I know there are many people here who have been using oxygen for a very long time, who still find that it works fine for them. As you said, there are people who find that once in a while O2 doesn't work for them (I think that is usually because the O2 level in the tank is too low). I do know of a couple of older people who have been using O2 for many, many years who have found that other abortives sometimes work more effectively for them, but I don't think they have posted about that here, and I can't say whether they've developed a tolerance for O2 or whether there are other factors involved. I suspect that maybe you are, as you say, "torturing yourself unnecessarily."

First shot, two weeks ago, no change for my daughter. Out of cycle but within her typical cycle time frame.

You might already have seen this as you've been reading. It gives you a sense of the treatment landscape, including basics of busting at the very end: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ As others have mentioned, oxygen would typically be your best option, but with relatively short and infrequent cycles maybe that's more of a future consideration unless you can get it quickly. Triptans, either injectable (Imitrex) or perhaps as nasal sprays, might be right for you this time. The D3 regimen is a good preventive, but probably won't help you right away. Busting works for a lot of people. Strategies like energy shots/drinks can help you now. Same was true for my daughter, who used no pharma of any kind for the first ten years she had CH.

YES!!!!!!!!!!!!!!!!!!!!!!!!

Even with the loading, two weeks might very well not be long enough for him to get a significant response. Could be, but not very likely.

marcianin, what did the doctor prescribe to you? It might be valuable for you to read this post, which will give you an idea of the landscape of possible treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ I would suggest starting a new topic in the "Theory and Implementation" section, with the heading "Newly Diagnosed" or something like that. That's how you'll get the most advice and have it in one place.

Leo, do you mean a concentrator (makes O2 out of room air)? For many people, those are not really fully effective, for two main reasons: the O2 they make is less than 100 pure (there's still some room air in it); and the regulator doesn't go high enough to support fully effective breathing. I'm glad it works for you, but as I say, they're not really right for everyone. (And I suppose we should consider what "works for you" means--with a fully optimized system, many/most people can abort an attack in ten minutes or even considerably less. If you're getting that result, it's great. If not, a cylinder-based system might show better results.)

trjoas, Bless you a hundred times for your perseverance and your positive mindset.

This is not in fact today's "accepted naming convention." It's what people once did (often inaccurately--the "Spanish Flu," for example, didn't originate in Spain, and "German measles" didn't originate in Germany) or still choose to do. Today's "accepted naming convention," pursuant to WHO guidelines issued in 2015, is to avoid using place names. This convention is widely accepted. For example, when the US under Trump's leadership tried to refer to the current coronavirus with a Chinese reference in an official G7 communication, the other G7 countries refused to go along. At least some of your history here is wrong or misleading: "German measles" (rubella) was first identified in the early 1800s and it was so named because it was identified by a German scientist, not because it originated in Germany. The Zika virus was named in 1948 (not by the WHO) indeed because it was identified in the Zika region, but not necessarily because that was where it originated. No one really knows where the "Russian flu" originated, only that the first identified outbreak was in a city in the Russian empire. Whatever the accuracy or inaccuracy of your historical assertions here, it is not a medical or epidemiological protocol today to use place names. When you call it the "Wuhan virus," you are not following contemporary naming protocol, as much as you might be following a historical practice. Things change. (And it is not "rewriting history" to use different terms for the epidemics you refer to, such as the "1918-1920 influenza pandemic.")

There are sites, such as www.goodrx.com, that provide coupons for drugs. I feel like some people found that the prices for Imitrex using those coupons were actually lower than what they were paying with insurance.

Just typing Orlando into the search bar at the top right side of any page brings up a whole lot of discussion about getting O2 in that area. I don't know whether there is real possibility in any of those threads. The Boost canisters aren't going to help in any substantial/affordable way. Is there a reason you're not pursuing welding O2? https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/