CHfather

You can be a hot dog!

All cats all the time here -- Jeebs, B'P', me, and of course there's no cooler cats than jon019 and S'b'.

I had been trying an adorable profile pic to see if I could get more leaderboard likes that way, or at least raise my rank to be a little closer to yours, Shaun's, spiny's . . . and everyone else's. Apparently a Jigglypuff was not cute enough, or perhaps there is some hidden Pokemon animosity here. So now I'm all in! How can you not like this!

Just my usual note that, contrary to what one might think, a small energy shot such as 5-Hour Energy has twice as much caffeine as a standard Red Bull or Monster -- and is a lot easier to get down fast. Also, as has been noted, coffee does the job for many, and some find benefit from taking a taurine pill along with the coffee. Finally, any caffeinated drink seems to work better if you have been off of caffeine for a while (e.g., before your cycle starts).

I think the demonstrator in that video was @Racer1_NC, at a ClusterBusters conference. He'd be a good one to answer your questions. Also, If you type "demand valve" in the search bar at the top of any page here, you will see a lot of discussions of demand valve purchasing. I will not weigh in with my opinions, which are probably or at least perhaps wrong, and anyway you can read plenty of them if you do that search of the site!

I was only suggesting that your offers are very thoughtful, but it need not be too complicated. You walk into a welding supply store, get a tank by telling a fib about why you want it -- if anyone asks, which is highly unlikely -- and walk out. A "massive" tank is good, but very hard for most of us to transport.

Bless you, O'N', for somehow keeping a sense of humor about this, and for the good care you have taken of yourself. At the same time, this guy should be reported to someone. He's a disgrace. It's one thing to be ignorant about CH (as so many are), it's another thing to have your head this far up your butt that you can't see daylight. In the great journal article posted here recently (https://www.bmj.com/content/376/bmj-2020-059577), this appears on the first page. Maybe you should send it to him. Or someone. Sex ratios and cluster headache The true sex ratio is unclear, as the sex ratio decreased each decade from the 1960s to the 1990s at a single site, and the male to female ratio was 4.3:1 in a 2008 meta-analysis but 1.3-2.6 in large studies in the 2010s. Previous misdiagnoses in women are one possible reason for the decreasing sex ratio.

I'm not sure why this would be so. Does Medicare limit the number/size of tanks? Once there is coverage, I would assume (maybe wrongly) that a medical O2 supplier would provide what is needed, perhaps with the same hassles that others experience because CH is not generally understood by O2 providers, but not because of the nature of the coverage. I don't know whether you are referring here to the places where industrial/welding O2 is typically purchased by people with CH, but at those places, if you are honest and explain that this is for CH, they will send you away empty-handed (except maybe in some very rare circumstances), because they are prohibited from selling O2 for medical purposes. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ Industrial/welding O2 can be a great thing, but it has some disadvantages in relationship to medical O2, one of which is the hassle of having to return the tanks yourself to get "refills," rather than having them brought to your door. And medical O2 with insurance might be less costly than welding O2, depending on a lot of factors. This is a generous offer. For the sake of clarity, though, no license or other document is required to walk into a place that sells welding O2 and buy it (at least I have never heard of a person having that issue).

I think that's a separate thing . . . but don't really know. I am not terrible at reading regs, and other people who are not terrible at reading regs have also looked at it, but we're not able to confidently conclude what it says. Still waiting on one or two folks who might have a definitive answer.

Some of us were just looking into this. I have reached out to some people who might know, but still don't have a solid answer. I'm told that this is the new document: https://www.cms.gov/medicare-coverage-database/view/ncd.aspx?ncdid=343&ncdver=2. I have a hard time making sense of it, and my conclusion, maybe completely wrong, is that it says that O2 is no longer disapproved, but there is not new guidance, and so (in the part in red) "In the absence of an NCD [national coverage determination], coverage determinations will be made by the Medicare Administrative Contractors under section 1862(a)(1)(A) of the Social Security Act, as allowed and described in Chapter 1, Section 240.2 (Home Use of Oxygen), Subsection D, of Publication 100-03 of the NCD Manual." This is all mind-busting to me -- and I might be understanding it all wrong.

Wow, this is thorough!! Thank you, Max'!

Thank you again, Adam', and thanks, B'P'. So, GammaCore, which works on the vagus nerve (as Adam said), is an approved treatment for CH. Here in the US, it is something like $600/month after the first month, which is free. Somehow, despite FDA approval, I haven't heard of insurance covering it, although maybe it does for some people. Cefaly, which works on the trigeminal nerve (as Adam' also said), is not FDA approved for CH, but just for migraine (I'm pretty sure). Think I have all that right. ClusterBusters was, at least at one time, very supportive of the development of GammaCore, and some heroic people actually did clinical trials where they could get a placebo device, which would presumably have no effect for aborting attacks (although, as I recall it, as is so often the case, the placebo devices actually did have some effect for shortening attacks). It was always hard for me to understand any broad appeal for GC as a CH abortive, since it generally takes at least as long as oxygen to work, at least according to the clinical trials. But I could see the appeal because of portability, allowing you to potentially stop an attack while out someplace, and because of the possible preventive effect. If it wasn't so expensive, I could see saying "Why not?" and using it for that purpose.

That's a nice post, Adam'. Thank you. Can you tell us how the GammaCore has been for you? It has been worth the cost, I take it (or maybe the "UK" means you are in a system where the cost is not exorbitant).

This is very good advice, but if your doctor is an idiot (I think you have a new one, who might or might not be), it's important for you to know that the standard prednisone "dose pack" won't really work well. Here is the recommendation from one primary CH resource: "Corticosteroids in the form of prednisone 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach. It often stops the cluster period, and should be used no more than once a year to avoid aseptic necrosis."

That might help. Some people need still more -- 960 mg or more. Is the verapamil instant release or extended? Most people seem to get better results with instant than with extended. Yes, get on the D3 regimen ASAP -- it's a more effective preventive than verap with a lot fewer potential side effects. There is practically no insurance that won't cover O2, but sometimes you do have to fight for it. I am quoting a passage here from a post by jon019: "....OXYGEN!!!....life changer...saved my sanity, perhaps my life. over the yrs sometimes insurance covered it, sometimes not (always appeal any denial, for O2 have your doc write a letter of medical necessity). note that Medicare has just now approved its use for CH, and many insurers follow their lead. when not covered, i did self pay. either way, my out of pocket was about the same. cheap by any measure, especially compared to triptans like Imitrex, no side effects, fast when flow, mask and technique dialed in, more portable than the stereotype would indicate. don't let anybody dump a concentrator on you.......many a clusterhead bypasses all this nonsense and uses welding O2, "same stuff out of the same spigot"...cheaper yet, widely available....no insurance droids to get in the way. just don't tell 'em you gonna breathe it..." As we have discussed and jon' mentions, welding O2 is a relatively low-cost option. Easy to get, set up, and use. I don't want to oppress you about things you don't have, but getting oxygen is worth almost any sacrifice you have to make. I hope you looked at the link I gave you up above, particularly the part of that file headed "Treatments without oxygen..." None of those are as effective as O2 would be or the D3 regimen can be, but some might help you.

(Part 2) Here's an overview that might help you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Since you're in a pinch right now, be sure to look at the part with the bold heading "Treatments" without O2 . . . Too much Imitrex is bad for you, and it can cause your attacks to get worse or your cycle to get longer. One way to use less is to split your injections. 2mg is enough for most people, but the injector holds 6mg. Here's some guidance (scroll down 'til you see the videos): https://clusterbusters.org/forums/topic/2446-extending-imitrex/

I am getting the very frustrating "Internal Server Error," so I'm hoping that breaking my message into two parts will help. You could set up an oxygen system using welding oxygen pretty quickly. Maybe check with your doctor's office and see whether she is willing to give you a prescription for medical oxygen (which should have been done in the first place). If not, get started on a welding O2-based system while you look for a better doctor. Start the D3 regimen. It helps some people quickly. Not all people or even most people, but you never know, and you want to start it for the future in any event.

Here's a kind of overview of CH treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ There's some additional information in the reply posts in that thread.

Some people find that when the O2 level in a tank is low, the O2 is less effective, or even doesn't seem to work at all. It's true for my daughter and for at least a couple of others here. Since you've been using O2 for a long time, maybe that's not the case for you, but it did come upon my daughter suddenly after many years of not being an issue. An e tank can of course get low pretty fast. One person has said that if you can increase your flow rate it will work even at low levels.

If you can't get medical O2, please seriously consider welding O2. Here's some info about it: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

You might try it once. Many/most people find that even a 5-Hour Energy (much stronger than a cup of coffee) doesn't keep them up. If you are in the US (or one of many other countries), suppliers of medical O2 won't provide it without a prescription. There are also some that won't provide it even if you do have a prescription, if you want to pay separately from insurance (or you don't have insurance). And lately we've been hearing about suppliers "rationing" O2, even for people with prescriptions, because of COVID-related shortages. Of course, if you don't have a prescription, you can always get welding O2, which is used by a significant percentage of people with CH.

No need for the kitchen-sink approach, agreed. But as jon' said, at least you should have oxygen, which is not going to cause "further issues." And done properly the D3 regimen has no associated issues, or virtually never has any (and those are stopped if you stop the D3). Do you drink coffee? It helps stop attacks.

You will want to split your Imitrex injections. They are (typically) 6mg, and all most people need is 2mg. 3 at most. Some doctors will prescribe it in vials so you can measure your own doses, and there is a 4mg injector. Here are instructions for splitting doses: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ You can see reported experiences with Emgality by typing Emgality into the search bar, top right of each page. I'd say that for people reporting here, it generally hasn't been very effective, but keep in mind that's a very skewed sample because for the most part the reason people are here is because conventional things haven't worked for them. If you can afford it, it's worth trying. The prednisone is likely to stop your attacks. That's unrelated to the verap. Sometimes prednisone will end the cycle (or the cycle will end while the pred is being used); other times the attacks come back when the pred taper is ended or ending. You can only do prednisone at most once a year. I get where you are concerning prescribed O2. But Imitrex is very expensive (particularly if you don't split injections) and the side effects are not great. You do not want that as your primary abortive -- only for bad attacks. So you still might want to consider doing as many do and setting up a welding O2 system. Maybe not for this cycle, I understand. Similarly, the D3 preventive regimen is better for you and is going to have less potential side effects than verap, let alone prednisone. So please consider getting going on that at some point.

A lot of reasons. One is that they don't know, and are too lazy/uncaring to look it up. Another is that most doctors have very little experience with high flow O2 and are therefore reluctant to prescribe it, even if they know they should. If they have patients who use O2 (e.g., for COPD), it is lower flows. At a very basic level, they don't even know how to write a prescription for high flow O2 for CH. Another is that, as is true so far in your case, something else they prescribe, that they are familiar with, does the job satisfactorily (this also happens when docs prescribe Imitrex--it ain't a great solution, but it does stop the pain, and the patient might not know any better). When that happens, they have saved the patient the expense and hassle of getting/having O2 (regardless of the vey different side effect profiles). Another is that stuff they prescribe doesn't work, but the patient doesn't come back, for whatever reason (finds another doc; finds a different method (e.g., busting, D3); gives up), and the doctor assumes the prescription did work. (I swear I remember reading some study once that said some large percentage of doctors believe that the prescriptions they write for CH are highly effective.) Related to all of the above is that many doctors think pharma first. Sometimes docs will tell people that they'd like to prescribe O2 but the person's insurance probably won't cover it. This seems to me. again, more like an excuse than a reason. And these days, there are actually O2 shortages in some US places because it has all been going to COVID patients.

You are right, Shaun', and your advice is right. And at the same time . . . this doctor seems to know that charles' has CH, and, as Pebbles' keeps reminding us, virtually all doctors have an online or hardcopy resource that tells them what the evidence-based prescription should be. Oxygen will be listed right there, in uncomplicated terms, as the #1 or 1a abortive, along with sumatriptan/zolmitriptan (and amitriptyline probably won't be mentioned at all), so Pebbles' is also right that not prescribing oxygen is pretty darn close to inexcusable.