CHfather

Yes, yes, yes . . . OXYGEN. Any way you can get that sooner than waiting for your appointment (a physician you can call for a prescription)?? You could set up welding O2 pretty quickly. You should start the D3 regimen, too, but it's not likely to have an immediate effect. Busting -- sure. I would not abruptly stop verapamil without checking with a doctor. In fact, you might not be taking enough verap (some people need dosages in the 1000mg range for relief -- but you also can't go up very abruptly). Have you read this file? https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ There are some things you can do to get through an attack better (energy shots and some specific strategies) -- listed toward the end under Other Treatments . . .

Brad, hoping that the B1 is going to continue giving you relief! I looked up that case report that you mentioned and it is encouraging (https://www.hindawi.com/journals/crinm/2018/3901619/). Of course, you know that you could set up a welding O2 system in a couple of days. Maybe your current relief will be long-lasting (or permanent), so you can wait to see what your neuro says after you make up with her next week.

Brad, this might not be very comforting, but you have to consider that your terrible hit was a sign that the busting is working. These kinds of unusually bad "slapbacks" are part of the process for many (or most) people, and they're the best indicator we have that the busting had an effect. I really, really hope that's going to turn out to be true for you. The standard wisdom here is that typically the slapbacks are less bad after the first couple of busts. You seem like a person who would have diligently tried practically everything, but I have to ask along with xBoss about whether you have tried optimized oxygen (properly high flow rate, top-quality mask, best breathing technique) and whether you're doing the D3 regimen. (And some other possibilities, such as Benadryl or Quercetin, energy shots, etc.) I know there are a lot of people here feeling your pain and wishing for better days for you.

Brendan, here's a link to the licorice root info. https://clusterbusters.org/forums/topic/941-licorice-root-summary/

A new expression to me, too, but worth remembering, although I'll have to work hard to fabricate an occasion when I'll get to use it.

Jeebs, My recollection is that my daughter's first bad cycle followed a tooth extraction, when she had only had occasional "bad headaches" before that time. The extraction itself was difficult, and for a long time we were blaming the dentist for having caused her CH (which at that time (and for much too long thereafter) was diagnosed as trigeminal neuralgia). I don't remember specifically whether she was having those "headaches" at the time of the extraction, so I'm not fully answering your question, but the shift in severity was very large.

Glad the verap seems to be helping! I have read about Indomethacin being prescribed as an abortive (to be taken to stop an attack), but I don't think we've seen anyone here (admittedly, not a large sample) who wasn't prescribed it to be taken at regular times each day, in consistent doses, as a preventive. That's the context in which I think the previous suggestions in this thread are offered. Down close to the end of this post -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- there's a section about dealing with shadows for CH. Since Indo can be such a harsh thing, I think I might suggest that you try some of those things before resorting to the Indo.

The Vitamin D3 regimen accomplishes this for many people. So do many pharmaceuticals, including verapamil. But these have side effects, while the D3 regimen, if taken properly, has practically none. I have to say that your CH seems very extreme in the way it comes on, overwhelming you so very quickly with so much pain. I'm sorry -- that must be particularly terrible, even for CH.

If you need or want sumatriptan injections in the future, you can split them so you are using less each time. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Some doctors will prescribe it in vials with syringes so you can measure your own doses. Most people need less than the full 6mg that is in the standard injector.

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.