CHfather

Yes, and 10lpm is generally too low, or even way too low, for the most effective abort. I always worry when I see concentrator that other wrong equipment might have been supplied. Do you have a non-rebreather mask (it has a bag that fills with O2 and then empties when you inhale)?

Heck yes, we are interested. First, because if you have CH, we want to help you prevent and manage it so it has the least possible impact on your life -- in ways, including busting, that virtually no doctor will tell you about (as jon' suggests in his post). And second because a large portion of what we know here we know from the people who come here. CH is tricky and constantly changing, and probably never the same in all aspects from one person to the next. It's all "citizen science" to really come closer to understanding what happens, why/when it happens, and what works to prevent it and manage it. One reason you're not getting many direct answers to your questions about first attacks and subsequent ones is that it varies from person to person. Some people have CH, boom just like that. For others there are "light" episodes or just single attacks. And sometimes that's all there is, and sometimes a full cycle might come on pretty soon or it could be years before another one. I don't blame you for worrying and wanting more clarity, but I feel pretty sure there is no direct answer to your questions about what might be next (if anything). We are even interested if you have no further attacks, so do let us know. We'd be happy for you, and it would be another data point for us. If you want to be proactive just in case, you could take a look at the D3 regimen (in the ClusterBuster Files section). It's probably good for you no matter what, and even if you start it at a lower level, you'll be building up your system with a very effective preventive.

Nick, here is something you might read to have a sense of the CH "landscape": https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ (the reference about "busting" that others have pointed you to is included at the end of this post, if you haven't looked at that yet). You won't fully understand it all, and you surely won't remember a lot of it, but you'll know it's there. (I'd look at the replies, too.) Some of the info might help you for your doctor appointment, and at the least you will have the understanding that there are many ways to treat this condition. It's possible that you'll never have another attack, or that you won't have one for years. Probably the most practical thing you can do right now in case of another attack is to have a few containers of energy shots (e.g., 5-Hour Energy) or energy drinks (e.g., Red Bull) on hand. Particularly for people in early stages, these can abort an attack or significantly lessen its severity. For some people, even a strong cup of coffee helps. Most people find they can drink them at night and still get back to sleep. As spiny says, stay away from alcohol, the #1 trigger (for most people). (If you do have CH, this isn't a lifetime alcohol ban -- most people can drink when they are out of cycle (though many choose not to). There is a file here -- https://clusterbusters.org/forums/topic/4568-triggers/ -- with more info about triggers, but you don't need to stop doing everything on that list. Two things many of us think of when there's a sudden attack: MSG and dental work. Did you have either of those in close proximity to the attack you experienced?

Again, this is about migraine, but the emphatic point from a leading headache expert is that WMLs are essentially inconsequential. In the case of migraine, it does seem that people with migraine are somewhat more likely to develop WMLs. https://americanmigrainefoundation.org/resource-library/migraine-and-brain-lesions/

It would be foolish for me to say it's nothing to worry about, but . . . "White matter lesions are among the most common incidental findings—which means the lesions have no clinical significance—on brain scans of people of any age." https://www.brainandlife.org/articles/what-are-white-matter-lesions-are-they-a-problem My daughter's first MRI for CH, more than ten years ago, showed some WMLs. Nothing bad has happened to her in that regard. People with migraine have white-matter lesions more often than other people. Imma guess that's probably true for people with CH, too.

There is a fairly thorough discussion of oxygen in this post: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/. It includes advice about how to get it and how to use it, and also some potentially useful discussion of a conversation you should have with your oxygen supply company as soon as the prescription is sent to them.

Me reacting to this news:

jon' has covered the bases very nicely (as always). A doctor who thinks anyone's current cycle is going to be like their last cycle doesn't have much familiarity with CH. (I'd say the same about a doctor that doesn't prescribe oxygen.) You might benefit from getting to a headache center, if there's one near you. You might want to look at this overview, which has a lot of info about a lot of stuff, including ways to possibly stop hits without oxygen, and things you can try for shadows. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

There hasn't been much commentary here about "standard" HRT (hormone replacement therapy). I do remember one prominent member saying it had no effect on her CH. You can search for HRT (using "hormone replacement" as the search phrase) using the search bar at the top of each page. I know there will be a lot of comments from MoxieGirl, but her HRT was part of a male-female transition, so probably not relevant. Regarding shadows, here's a little from a post in the ClusterBuster Files. Ginger seems to be the most effective go-to for many. There is probably other advice in other posts. "Some people find that standard headache medicine such as ibuprofen helps with shadows, some find that caffeine helps (and Excedrin migraine tablets include both a headache med and caffeine), and some find that oxygen helps. Ginger seems to help many people (some also take it as a possible preventive). Tea is one way to take it. Slice or grate a bunch if it (maybe a tablespoon if grated; more if chopped) and simmer it for 10 - 20 minutes in a couple of cups of water. It should feel really strong when you drink it. You can add honey, sugar, etc. You can buy ginger tea, but make sure it’s real ginger. Crystallized ginger and real (strong) ginger candy are also good. Candy from Ginger People is strong. You can make your own crystallized ginger candy. Someone once posted “Ginger and honey on toast. Yum!” There’s apparently a Nut Bar that contains ginger and sugar. Ginger beer (non-alcoholic) has worked for some people." Can you get RC seeds (rivea corymbosa)? Legal to purchase and possess, but often very effective for busting. Are you doing the D3 regimen? As you might know, allergies (even ones you don't notice) can really kick up CH activity at unusual times. Have you tried some Benadryl? We can say more about these or other options, depending on your responses.

Jeri, Batch, whose handle here is xxx, has written a lot about mast cells. (Here, for example: https://clusterbusters.org/forums/topic/9176-microdosing-to-stop-an-attack-small-piece-under-the-tongue-questions/page/2/#comment-81167). I have never paid much attention because I didn't need that much information to trust that his suggestions were going to help, as they always do. Maybe there's something here that meshes with what you have found. I can also note that several of the EDS symptoms (though not all) are also true for my daughter (who has CH). Unstable joints, bruising easily, some joint hypermobility and clicking.

Prednisone works quite well to stop attacks for many people, but for most people that's only during the time that it's being taken, or even, for many, only during the time when the higher doses are taken. Some people find that if/when the attacks come back, they can be quite severe. The recommended prednisone dosage for CH is 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks. If your cycle typically lasts a month and you get up to three weeks of relief, that seems possibly worth doing. Some people also get relief from the standard prednisone "dose pack," which is shorter. I don't think Emgality would be contraindicated with prednisone, but I don't really know. Reports here about Emgality are mixed, as snafu says, but you have to keep in mind that not many people are going to show up here reporting on something that worked for them. You can see comments about Emgality by putting the word Emgality into the search bar at the top right of any page.

Thanks for this update, charles'. So glad that combo is working for you! Do you also have oxygen? Have you considered the D3 regimen? It would take a very long time to answer this question about those three meds individually, let alone in combination (I don't recall anyone who has taken that specific combo and only those three, but it could have happened, I suppose). Leaving side effects aside for the sake of discussion (but they can be significant), each of them has had successes and disappointments for people reporting here. If you want to see more, you could use the search bar at the top right of each page. There are not a whole lot of entries about cyproheptadine (Periactin) and not a huge number about amitriptyline (Elavil), but Verapamil is a whole other topic. Lots of people have tried it, some with very good results (often at doses that are considerably higher than what is typically prescribed). The Periactin is an antihistamine, and in the last few years, thanks mostly to Batch, it has been recognized that allergic reactions (even without symptoms) can fire up CH. Like I say, really too complex to try to discuss all this here. Have you talked to your doctor about this stop/start approach to taking the meds? I feel pretty confident that that is not really a good idea, at least with the Verapamil and probably also with the Elavil.

The VNS device is gammaCore. https://www.gammacore.com/ By itself in typical circumstances, it doesn't work as well as an optimized O2 system. It supposedly has some effect when used as a preventive. I think you have to have a prescription to get it. Previously, and maybe still today, the first month was free but then $598/month after that, in the US. A 2021 evaluation within the UK National Health Service (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8611122/#:~:text=gammaCore reduces the frequency and,in the first 3 months.) "recommends routine adoption of gammaCore into the UK national health service," but presents these "key points for decision makers": gammaCore reduces the frequency and severity of cluster headaches but does not work for everyone. There is currently no evidence of a sustained long-term benefit. Treatment with gammaCore should therefore be stopped if patients do not experience any reduction in symptoms in the first 3 months. gammaCore was used alongside standard treatment, so decision makers should be aware that the possible benefits achieved with gammaCore are as a result of the addition of gammaCore to current standard treatment.

It occurs to me, FWIW, that your doctor might have CH confused with the hemicranias (continua, paroxysmal), which have symptoms like CH and, indeed, most of the time do not respond to triptans.

You're looking in the wrong direction.

[Edit: I see that jon has just posted this same info about UpToDate .. .. ..] am not recalling the name of standard reference that physicians use...hoping another clusterhead will come along and provide. Physician's Desk Reference (PDF) perhaps? This, as all have said, is one crazy doctor. PDR, as suggested by Jeebs, might have the info that jon' mentioned (and as jon' said, any sane site will list triptans and oxygen). The most commonly used online reference/app by doctors is called UpToDate. Says here (https://nhcps.com/top-12-online-resources-for-medical-professionals/): "UpToDate is considered the go-to source for about 90% of US-based medical centers. A 118-facility study published on PubMed.gov found that most doctors and residents turned to UpToDate before any other resource."

David', I don't think anyone knows for certain about either of the substances you're asking about. I think we generally suppose that gabapentin does not block busting. In some support of that, there's a post from a while back from a regular member that says: "Gabapentin works to treat my trigeminal neuralgia flare ups. Hasn't interfered with busting." I feel pretty sure that Nurtec doesn't block busting. Are you taking the gabapentin for CH? It's such an old, often ineffective, and unpopular (side effects) prescription that it feels like you could do a lot better, unless it's helping you and you aren't having significant side effects.

I think it's just free to spiny, because it is covered by Medicare insurance.

I know this could/should be in the "Conferences" section, but I rarely look there, so I figured I'd ask here. (Note that Bob W just posted down there that financial aid can be available!)

I'm not sure why a relationship with a welding O2 supplier would be advantageous. To avoid questions that I could not answer, I have always preferred to make my dealings with them as superficial as possible. If asked anything, which has been extremely rare, I would say something like, I'm just picking it up for my brother-in-law who is out of town and wants to do some welding jobs quickly as soon as he returns, or something that gets me off the hook from knowing anything. Their job is to sell stuff -- for the most part, they have seemed to be as uninterested in actual conversation as I am. Maybe a relationship will help you get them to fill your tank rather than insisting on swapping it out. But I doubt it. I think they either will or they won't. And (a) with a large tank, you're not going to be going back often enough to really build a relationship, unless you're using the 40 cu ft a lot; and (b) at least at the places I go to, there are several people working there, so you're not likely to create a relationship with any of them. Whole different thing with medical O2, when the delivery guys can do you lots of favors. Two things discussed a lot here that also help with migraine (I assume you also have CH(???)) -- the D3 regimen and busting.

Yes, I saw that. It's $125 more than the same size tank, unfilled.

I strongly doubt that a tank you order from Amazon is going to come pre-filled. The 40 cu ft one I looked at there ($125) says "ships empty," but maybe there's another one I didn't see. Someone else might have a suggestion about whether a welding O2 vendor will let you keep having your own tank filled, rather than swapping out. I could venture some thoughts, but you'd be better off getting advice from a true expert, such as @Racer1_NC or @xxx. Where are you planning to get your large tank? Where are you getting your regulator(s)? They seem to me to be a lot more expensive at welding stores than welding regulators you can get at Amazon.

I'd suggest you look in this file under the heading "Treatments without O2 . . . " https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Some of the abortive strategies might help you if you need them. I would say that after caffeine/energy shots, the most effective are inhaling cold air from an air conditioning vent, or some variation of the hot water strategy (feet in it; maybe whole body in it . . . ). I'm not sure what you mean by that. If you're out of it, that's one thing. But if you feel like you can't use more than two injections in a 24-hour period, maybe you could split an injection so you're using just 2 or 3 additional mg, not the whole 6mg. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

The only two times in my adult life that I ate pineapple, I got severe tooth abscesses within the next few days (the only dental abscesses of my entire life)! Could have been coincidence, I suppose . . . I haven't tested to find out. I see there seem to be forms of quercetin without bromelian. This one, for example (unless bromelian is hidden in those "other ingredients," but typically it seems that bromelian is treated as a feature to be touted). https://www.lifeextension.com/vitamins-supplements/item02302/bio-quercetin?gclid=Cj0KCQjw_7KXBhCoARIsAPdPTfgzpt537enPe4CYw_HWjcfbXmIl_HfnTOXY3f3u674gC_KSZzB7k9YaAqI-EALw_wcB Since bromelian helps quercetin to be absorbed, I would imagine that maybe if you take it without bromelian, you have to pay closer attention to dosage.

Thank you for the update, Vipul.