CHfather

Thank you for everything about this post -- the very act of posting it, of course, but also the nice clarity about context and specifically what your finance is taking! If you put Boswellia into the search bar (top right of every page), you'll see some other related discussions that might be valuable.

Yes, this is true. You just turn the knob on the regulator until you get the flow you want. This quickly becomes easy to do. It's the other questions I couldn't answer. If you were in the US, I'd say it's all going to be fine; I just don't know whether for some reason Indian tanks or regulators might be different from US ones.

I'm sorry, Vipul. I don't know the answers to any of those questions.

I'm sure I should know this, but what video are you referring to? (I've been here 11 years, and I admit that I haven't kept up outside this forum, even with things at this site.) As others have already said, there's a lot of possible help here, and if you feel like it, you might tell us how you are treating your CH now. It's possible if you skim through this file, it might have something new for you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

All the usual questions seem to be in order. Do you have oxygen? Have you started the D3 regimen? Do you know about busting? What are you using to prevent, and what to abort? Do you know what your triggers are (if you have any)? Have you tried any of the new meds (Emgality, Aimovig...)? . . . Those kinds of things. For a big overview that might have some helpful stuff in it, I will refer you here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ There's a section on busting at the end of that file, so if you get tired of reading, be sure to look at that.

@Anthobob, thank you for letting us know about your experiences! That information helps a lot. Yes to all that. Busting basics are listed under the blue "New Users . . . " banner at the top of each page. An example of something else you might want to learn about is the Vitamin D3 regimen that has helped virtually everyone who has seriously undertaken it. I think the latest version is here, but I always feel like there are new wrinkles that might not be reflected there: https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people The search bar at the top right of the page can sometimes be helpful, but if you start a thread you'll get more direct advice.

Completely respecting your reluctance, and I feel like you're not a person to be led somewhere you don't want to go. So just FYI . . . There is often a misunderstanding that a "trip" is part of the treatment. It isn't. It's just a side effect, and as Jeebs said somewhere in a thread like this one, RC seeds at therapeutic doses are virtually guaranteed to have zero psychedelic effects. It is completely legal to buy and possess them in California. Preparation is extremely simple. Consuming them is unlawful. You can start at a very low dose. There was a time when RC seeds were considered a better busting agent than MM, but MM gets all the media attention, and many people here seem to think it and L are the big hammers. Seeds still might be considered better than MM (because their structure is closer to LSD). This is the original post on the topic: https://clusterbusters.org/forums/topic/684-5-lsa-seeds-of-the-vine/?tab=comments#comment-8326 This covers a lot of bases: https://clusterbusters.org/forums/topic/2353-moxiegirls-seed-recipe/?tab=comments#comment-29101 Blah blah blah here: https://clusterbusters.org/forums/topic/6816-number-of-rc-seeds-to-take-some-thoughts/ There are some small contradictions among these files, but if you start a thread in one of the protected boards I'm sure those can be ironed out.

I think opinions vary about this. There's no doubt that triptan overuse will cause rebounds and perhaps extend cycles or make attacks worse. On the other hand, if you need one for a "breakthrough" attack where for some reason O2 isn't doing the job, I wouldn't hesitate. That's particularly true if you are injecting only 2 or 3 mg instead of the 6 that are in the standard injector. See this thread: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

!!!!!!!!!!

This isn't clear to me. The bag (the smaller one that you had before) should fill up fairly quickly when you turn on the O2. Then when you inhale, the bag should empty, or at least mostly empty. Then it should fill up again when you stop inhaling and are exhaling. The flow rate determines how fast the bag fills -- the higher the lpm, the faster the bag fills. That is the only relevant aspect of flow rate -- it doesn't affect how much O2 you take in when you inhale. If the bag does not fill fast enough that it is ready for your next inhalation, you need a higher flow rate. It is called a "reservoir bag," because it holds the O2 until you inhale it. Having a larger bag on there means that you have extra O2 for each inhale, which is fine, but you want to start inhaling as soon as there's enough O2 for you to take a full, deep breath, and not wait for a very large bag to fill. I'm just not really comprehending what you mean by "even at 10 lpm I get enough oxygen for 10 to 15 breaths." O2 virtually always works. For some people, it is less effective when the pressure in the tank is low (when there is less O2 in the tank). There might be times when it doesn't work, or takes longer to work, but the value of using O2 doesn't really decay over time. Yes, you will use less O2 when you find the breathing strategy that works best for you -- and there is also some evidence that it is just less effective in the first few uses than it becomes after that.

That one (the Flamenco brand) is a welding regulator. LPM is not an issue for welding, so the gauges don't show LPM and the product specifications wouldn't include it. The good thing is that you have a very wide range of lpm available to you from a welding regulator, the very small challenge is that you have to fiddle with the controls to find the lpm that works best for you (rather than just clicking an an lpm setting as you can do with a medical regulator. As I say, this is a very small issue that people quickly adjust to. The first link I provided in my post above is to a medical O2 regulator -- you can see that they look quite different. I think most of us would suggest that a welding regulator is the way to go -- as long as it fits onto your tank. That's not an issue in the US and many other other places, where both medical regulators for larger tanks and welding regulators for all tanks are CGA 540. I would assume the same would be true in India. I hope you have read that oxygen section in that document I linked you to. Some tips there about strategies and mask preparation that might speed up your aborts.

This looks to me like a 540-type connection. I don't know whether it's the same classification system for regulators in India. Maybe @Racer1_NC or @xxx can confirm this. I see that www.indiamart.com has a lot of regulators. That's a business-to-business site (not business to consumer), so you might not be able to buy there, but there is contact information for all the suppliers. (There might be a better site where you could buy directly; this is just what I saw with a quick look.) As the oxygen section says, you can use either a medical oxygen regulator or a welding regulator with that type of connection. Here's a medical O2 one that goes up to 25 lpm from Amazon in the US: https://www.amazon.com/Regulator-CGA-540-Responsive-Respiratory-120-1205/dp/B07ZS9JK7P/ref=sr_1_21?crid=292UW7S35X6N3&keywords=oxygen+regulator+540+cga&qid=1638375197&sprefix=oxygen+regulator+540%2Caps%2C216&sr=8-21 You can use almost any of the welding regs shown at Amazon -- search under oxygen regulator 540. You'd want to be sure to get one that has a barbed fitting to attach your mask tubing to, such as what you can see on the left side of this one: https://www.amazon.com/IMAGE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_10?crid=292UW7S35X6N3&keywords=oxygen+regulator+540+cga&qid=1638375197&sprefix=oxygen+regulator+540%2Caps%2C216&sr=8-10 I wouldn't rely on anything I say here until it's confirmed by Racer, xxx (Batch), or another of the true experts here.

VERY happy that O2 is working for you!!!!! If by 10L you mean 10 liters, the tanks must be bigger than that! There are two basic kinds of regulators (at least in the US). What kind of regulator you get depends on how it connects to your tank. If your regulator looks like this, it is CGA-870. If it looks like this, it is CGA-540. If you have a CGA-540 connection, you can also use a welding O2 regulator. We could give you ideas for where to get any of these in regulators in the US (Amazon or EBay, for example), but will that help you there? Can you google and find them? As you suggest, if the 0-15 reg does its job when you remove the humidifier, you are probably okay with that. As shaun' says, most people don't need the humidifier. I would suggest that you read through the section on oxygen in this file for some thoughts that might be valuable: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

The only carry-on oxygen allowed on US flights is a portable oxygen concentrator. Battery-powered, I don't think they go much higher than 6 - maybe 8 lpm. A lot of hoops to jump through for that -- doctor's letter, advance notice to the airline . . . Policies vary airline to airline. You can rent them for travel. I don't think the airline, at least on a domestic flight, will provide you anything more powerful than that to treat an attack. You can carry on empty cylinders or check them in baggage. You can have cylinders available to you at places you go to, through your O2 supplier or if not, through other suppliers. Of course, you can bring abortive pharma meds on board, and energy drinks (I think they usually sell Red Bull). Many people here have reported success with a SPUT (small piece/(amount) under the tongue) of seeds or M. I suppose maybe L would work, too. I feel like (though this just might be the way it seemed to me) not many years ago, a flight for someone in cycle seemed to practically guarantee getting hit. Now it seems less certain. As I say, that might just be how I was reading posts. Similarly, I don't think there's much risk of an attack for someone who is definitely out of cycle -- but again, people will correct me if I am wrong about that.

I would check with your French oxygen supplier and see whether they can arrange O2 in the US, at least temporarily. I know that some companies will do that for people with US prescriptions traveling outside the US. As Freud says, you might want to get welding oxygen, which is used by some percentage of people with CH. Since you probably never have had to look into that, here's is a link to a post about welding O2. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ (There's info there about regulators and masks, too.) If he has some written documentation that he has CH (ideally, in English), it might be possible to go to an urgent care place in the US and get an O2 prescription. Certainly it seems that would be feasible with a "regular" doctor or a neurologist at a headache center. Once you have the prescription, as Freud says, you can usually get O2 and self-pay without insurance coverage. One quibble with Freud -- I don't think you can get a filled welding tank, or any large tank, at Harbor Freight. I could be wrong about that as a generalization -- it was true of the two HF stores I went to. But wherever you end up there are likely to be welding supply stores and places like Home Depot that rent and refill tanks. Finally . . . You might take a look around this board for information about the Vitamin D3 regimen. It might not be familiar to you/him, and it has been very beneficial for large numbers of people. The basics are in here, starting on the fifth page (the second page 2): https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Others can fill you in on nuances. This thread seems to cover a lot of the bases: https://clusterbusters.org/forums/topic/7417-ditch-the-benadryl/?tab=comments#comment-71582

Juss, When I first joined this board, almost exactly eleven years ago, I was desperate to help my daughter (the person in my family who has CH). That's why I picked the screen name that I have. There was a guy who was furious with me, and let me know that in a very harsh PM, because he thought I was trying to make myself sound like something special, I guess like the "father" of CB or something. Farthest thing from my mind, but he wasn't having it. (He was generous enough to write me an apology, a few years later, for that and some other irritations he had with me. I have always been touched by that decency on his part (Brian, if you're listening. . . )) I mention this because I think you might have me confused with the guy who is indeed the "father" of this board, Bob Wold, whose screen name is Psiloscribe, and who perhaps is a genius in terms of knowing things about CH. I have no knowledge about Botox, and don't think I have posted anything about Botox, except maybe to point someone to the research here and there. If I were to need anything to convince myself that I am not a genius, it would be your posts, which I ponder from time to time, not only because of their content, which I generally can't grasp (but which I am glad to see that others, such as Bosco', Shaun', Jeebs, and jon' are learning from, so they can help teach me/us), but because they illustrate to me that I only know "a lot" about the most conventional things related to CH -- oxygen, meds, RC seeds, and a couple of others -- and the advice I share is nowhere as sophisticated as it perhaps could be. I have been telling myself to go back and thoroughly read your posts and links so I could at least be a little smarter, and with some free time I hope to undertake that project. (You reminded me of one of my favorite lines from a novel I liked quite a lot, by John Lanchester. The narrator, who one slowly comes to realize is completely nuts, is very jealous of his brother, who many consider to be a genius. The narrator says, "I myself have always disliked being called a 'genius.' It is fascinating to notice how quick people have been to intuit this aversion and avoid using the term."

Just plain coffee has a more caffeine per ounce than a standard Monster drink. V-8 energy drinks (preferred by spiny) have about the same caffeine as a standard Monster. As far as I can tell, those V-8 energy drinks have no taurine. Some people find the energy drinks/shots yuckier than just coffee. If you think taurine is valuable (many do), you can take taurine pills along with the coffee. As jon' notes, there are huge variations in how much caffeine an "energy drink" or "energy shot" contains. In your 473ml (16 oz) Monster (if it's a standard one), you are getting 160mg of caffeine. An eight-ounce Starbucks Pike Place roast will also give you about 160mg of caffeine. (Coffee roasts also vary a lot.) So you are getting a lot of additional stuff in a standard Monster to account for the 16 ounces. A 2-ounce 5-Hour Energy has about 200mg of caffeine. You can see a thorough listing of caffeine content here: https://www.caffeineinformer.com/the-caffeine-database Like jon', I am puzzled that your pain level is so high when you are starting out on the O2, and I'm glad you're having success with the O2.

NR', if you put the word Nurtec into the search bar at the top right of any page, you'll see what people here have said about it. No one reported having the success that your doctor's other patient had, for sure. It's important to recognize that mostly you are likely to see disappointments reported here, since people who have success are not particularly likely to come here to report it, so you're not getting the full picture. (In that regard, it's frustrating that some Nurtec threads tail off without closure, since it's impossible to know whether the treatment succeeded or not.) It's my understanding that Nurtec is an abortive medication to stop individual attacks (migraine attacks, since as you say it isn't an approved CH treatment). Is that how your doctor prescribed it (take it to stop an attack), or are you supposed to take it regularly as a preventive? Aside from that patient whose cycle is reported to have ended, as an abortive Nurtec seems to be not nearly as effective oxygen or triptans. My goodness, it is expensive! When you say "without insurance," if that means you have no insurance, that's one thing, but if you do have insurance but it won't cover it because it's not approved for CH, maybe you could try something like Emgality, which works in essentially the same way, on CGRP receptors, and is approved for CH. If you decide to go ahead with this purchase, you can get it for a little less using a coupon from at goodrx.com. Can we assume that you are using all the standard CH treatments -- oxygen, D3 regimen, etc?

Nice going!!! If your mask has open holes in it (a circle of small holes, typically on one side, whereas the other side has typically has the same holes but with a gasket behind them), be sure to block them with your thumb as you inhale, or cover them with tape. They let room air in as you inhale, and that reduces the effectiveness of the O2.

I had horrible neck pain some years ago. Every day a misery, wearing a cervical collar all day, unable to do anything comfortably. I was in the hospital for a week just because I was going nuts from the stress. The first day I was there a doc came in and said he had looked at my MRI and he was ready to do surgery whenever I wanted (fecking ambulance chaser). Nothing they gave me, even morphine or steroids, helped at all, and when they kicked me out they gave me giant bottles of things to take daily (neurontin, oxycontin, oxyIR . . . ). I flushed them down the toilet on the third day (too bad -- street value was probably pretty high). It happened that we had a connection with a top neurosurgeon, and I counted the days until my appointment with him, thinking he surely was going to rush me into surgery and finally fix the pain. Instead, he said to come back in two months after doing physical therapy regularly. I was crushed. I wanted it over, and I was terrified of doing anything to make it worse. Turned out that waiting was the right thing to do, and I never did need that surgery (and I never miss a day of doing my neck exercises). There are those famous studies where they would look at people's spines and try to predict who was having back pain. Turned out that except in extreme cases there was no connection between spinal condition and back pain. One person could have three herniated disks and be suffering, and another person could have something that looked just the same and be having no pain. And the other way around -- no structural issues but serious pain for some and no pain for others. So maybe, like me, you were just having some kind of awful episode and it's going to get back to normal or normalish and just become a memory. Or, of course, maybe not, but it sounds like they're ready for you if surgery is what you need. Love you, Denny, and sorry you're going through this now, too.

Thanks, spiny! Noting that Batch now prefers Quercetin to Benadryl. https://clusterbusters.org/forums/topic/7417-ditch-the-benadryl/?tab=comments#comment-71582

Acan', the D3 regimen is ultimately a healthier, and better, preventive strategy than any med. It will take effect as quickly as verapamil, if you need high doses of verapamil to be successful and have to be titrated up to those levels (that is to say, the D3 regimen might not be effective right away, but verap won't be, either). I can't say whether that same kind of time period before effectiveness is true of topirimate or other meds, and I'm not saying not to try any of them -- just saying that D3 is a better solution for most people.

The basics are covered if you click on the blue "NEW USERS ..." banner at the top of each page. Beyond that, there are terrific people here who can help you. Strongly recommend that you also start the "Vitamin D3 regimen." It really helps a lot of people. I don't know where the latest info on that is, but someone will connect you to it.

That one is not a CH trial, though.

Generally successful at stopping the pain for a while. Generally not successful at breaking a cycle, but sometimes it does. The dosage recommended by a leading expert is 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks.