CHfather

e'head, I hope your oxygen works well for you. If it doesn't, please check back with us for some possible tips. It's not clear to me what you mean when you say you just ordered oxygen. If you're looking for a great treatment with no side effects, oxygen is it, but of course it only aborts attacks, it doesn't prevent them from happening. Like I say, please keep us informed about your O2. When you have it working properly, it will very significantly reduce your need to also use a triptan. The vitamin D3 regimen (lots of pills, but nothing pharmaceutical) is also a good option, which might actually be good for you: https://clusterbusters.org/forums/topic/1308-d3-regimen/ You should probably check to be sure you're not unnecessarily triggering any attacks. A lot of foods typically consumed by young folks tend to have MSG in them, for example. https://clusterbusters.org/forums/topic/4568-triggers/ A 5-Hour Energy drunk down at the first sign of an attack can often reduce the severity of the attack or even abort it. The stuff in there might not be particularly good for you, either, but you have to make the tradeoff between screaming and squirming around on the floor wishing you were dead and addressing the frequency and severity of your attacks. There's no question that some meds are, as you say, "detrimental," but they probably have relative degrees of detrimentalness. I'm not sure what urs means by "slapbacks" from nasal triptans or injected ones. There is some evidence that they might have detrimental effects, such as causing subsequent attacks, making attacks worse, or lengthening cycles. There are also people who never used triptans who experienced all those things. There are people here who would tell you never to use a triptan, and there are others who will tell you that the tradeoff between having a multi-hour attack and aborting it with a triptan is easy for them to make. Some people find that putting their feet in a bathtub of very hot water helps calm an attack. You might find some interesting other ideas in the ClusterBuster Files section.

Since you say you don't want to use triptans, this might not be very helpful, but as spiny says, with most autoinjectors you can break them open and get three, or at least two, effective shots from each injector. See https://clusterbusters.org/forums/topic/2446-extending-imitrex/ You can also get your doc to prescribe vials of trex and syringes to create your own doses. And you can often get lower prices (not low by any means, but lower) with coupons from sites like www.goodrx.com. Do try the 5-Hour Energy. It does help a lot of people. And keep us informed about your O2, please. Have never heard about the frankincense. If you get a definitive feeling about its effectiveness, please let us know. Some people have found that having their feet in a bathtub of very hot water during an attack will help to calm it. Maybe you want to look over the list of triggers here, in case there might be something else that's bringing on so many attacks. https://clusterbusters.org/forums/topic/4568-triggers/ Bless you a hundred times for your willingness to do the psilo trial.

F'T, some thoughts. What's your total verapamil dosage? 960mg/day is sometimes needed for effectiveness. Drink down some caffeine as you start on the O2. Can be coffee, but an energy shot such as 5-Hour Energy is stronger and usually better. Cover any open holes in the mask and be sure you have a snug fit. Get deep breaths out and in. Start with a strong breath out. The idea is to get as much O2 into your lungs as possible and expel as much room air as possible. Start the D3 regimen. https://clusterbusters.org/forums/topic/1308-d3-regimen/ What form is your sumatriptan in: pill, spray, injection? Injection is the only one that works reliably for most people (sometimes the spray does). All that Motrin is really bad for you and almost certainly doesn't help. I get the desire to do something in order to do something. Some people find that melatonin at night helps, starting at about 9mg and working up. What's the trial you're signing up for? You might think about this: busting is demonstrably effective. The drawback for most people is the same as yours for the trial -- having to quit the triptans. The somewhat scary part about a trial is that you might end up with a placebo that doesn't help you at all. With busting, at least you know you're using stuff that has been shown to work. Busting with seeds is almost completely legal, easy to do, and has no psychedelic effects. So I'd consider that ahead of joining the trial. Read about busting in the numbered files in the ClusterBuster Files section. Family is always an issue. I've been amazed at how many people hide their CH from their families. You are fortunate (as you know) to have that support; it's not always like that. But of course the best solution is to do all the right things to be suffering less and less often. I think the good people here can help you with that.

Hopefully my notes in blue above will show up.

You are such a great resource, Pixie! Thank you -- again.

B'H, So sorry about that lack of success with oxygen. I keep trying to think of other oxygen strategies, but it sounds like you've given it the best try you can. You might consider an energy shot such as 5-Hour Energy instead of the Red Bull. Those little 2-ounce shots actually have considerably more caffeine and taurine than an 8-ounce Red Bull, so you might abort better and have less beverage sloshing around in you. So, I have to ask this, and please forgive me if you've been down this road, too. THE CH "lookalike" condition, paroxysmal hemicrania, is not helped by oxygen or triptans, but is sometimes treated effectively with steroids and verapamil, so it kind of matches your response profile. (The standard treatment, highly effective, is the drug indomethacin.) Do you think there's any chance you might have that and not CH? https://www.ninds.nih.gov/disorders/all-disorders/paroxysmal-hemicrania-information-page

Nice to wake up on a Saturday morning and see that the amazing spiny has already done what needed doing. This is the file about splitting Imitrex injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ This the mask she referred to: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit This is an alternative approach to using oxygen, not requiring a higher-flow regulator or the special mask, that has worked well for many: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ With more effective oxygen, the D3 regimen, and the other strategies spiny mentioned (energy shot, melatonin), things should get a lot better. FWIW, the agents used for busting don't show up on any standard drug-testing panels. In the file about LSA, you'll see that the seeds are legal to purchase and legal to possess. He could also try kudzu root, which is 100% legal and has been shown to be quite effective.

Can you make it to the CB conference in Chicago, 9/14 - 17?

I don't know about the cost. You can see clinical trial results here: https://gammacore.us/clinical-studies/ It doesn't look like a very good alternative to oxygen to me, unless O2 doesn't work for you (but O2 works for almost everyone when set up and used properly). Portability is of course a significant advantage over O2. Useless for chronic CH, it appears. I remember that one study suggested that it had some preventive effect regarding subsequent attacks. If that's true, it would be an advantage over oxygen. I always feel like I should add this to any discussion of Gammacore: In the clinical trials, some people got placebos (fake devices). That is a heck of a commitment, to agree that you might be enduring attacks with something that won't help you at all. My appreciation and admiration for the people who volunteered to do that is enormous.

We'd probably urge you to give oxygen another try. For many/most people, past O2 delivery systems have been inadequate (flow too low, mask wrong). 90-plus percent of people for whom O2 didn't work in the past find that with higher flow rates, better mask, and good breathing strategies it will work for them.

I'm taking your word for it on the liquid oxygen -- just something I know nothing about. Lots of people use welding regulators without lpm indicators. They just play with the settings a little until they get a flow rate that's right for them. What you want is for the reservoir bag on your mask to fill up while you're exhaling, so you don't have to wait for your next inhale. Everyone finds the breathing method/rhythm that works best for them, often different rhythms for different parts of the attack. Generally, you want to get as much room air as possible out of your lungs before your first inhale (and you should have already drunk down some coffee or a 5-Hour Energy), inhale deeply, hold it in your lungs for a moment, then exhale strongly . . . The flow of the O2 should allow you to use a rhythm something like that, with the bag always being full of O2 when you are ready for your next breath. The mask: (1) the tubing is made for a barbed fitting, which you don't typically have on a welding setup. Some welding regs come with an adapter for that. You can buy an adapter at a hardware store or online. I guess some people can kluge together some way to get the mask tubing onto a typical welding outlet; (2) if there are open holes in the mask (a circle of little holes) cover them up with your thumb or tape, so you get as little room air as possible when you are inhaling; (3) don't use the strap to hold it to your face.

Taqua, some basics. If you're diagnosed with CH, the first thing you want is oxygen. A doctor can prescribe that. It will abort your attacks fairly quickly, with no side effects. Most doctors are idiots when it comes to CH. You will have better luck if you can get to a headache center. There are certain standard pharmaceutical prescriptions for preventives and abortives in addition to oxygen. You are right -- there are no standard "pain" medications that will help you. If you can't see a doctor or one won't prescribe oxygen, we can talk about alternatives using welding oxygen. Check on this list to see if there's a recommended doctor near you. The vitamin D3 regimen, described here, helps most people. Not usually immediately . . . but over time it has been very helpful. Try drinking an energy shot such as 5-Hour Energy, or maybe even a strong cup of coffee, at the first sign of an attack. That might help. Consider taking melatonin at night, maybe starting at about 9mg and working up until you find a level that works for you. I'd suggest that you look at the "Triggers" document over in the ClusterBuster Files section of the board to be sure that you're not making things worse for yourself. Alcohol is a major trigger for almost everyone with CH. Food with MSG in it also seems to have bad effects for many.

I've never known of anyone to use liquid oxygen. I do know that a lot of people use oxygen gas for glass blowing, and I think that would be the same as welding oxygen. Obviously, you want oxygen of a high purity level for inhaling. If you have a regulator, what you want is a non-rebreather mask. They are very inexpensive. There is a better mask, made for people with CH, but frankly if you can get a non-rebreather mask right away -- if you're a member at amazon prime, for example -- I would try that. This one looks fine to me: https://www.amazon.com/Medsource-No-Model-Non-Rebreather-Oxygen/dp/B004Z8V47G/ref=sr_1_1_a_it?ie=UTF8&qid=1499034891&sr=8-1&keywords=non-rebreather+mask I love Twisted-Melon's posts . . . and I think his advice here about dosage is good. But not everyone, including very dedicated busters, has had the success he has had. In my view, you should definitely start the D3 regimen, and look into a pharma preventive. Verapamil doesn't seem to interfere with busting, although it was believed at one time that it did.

This is very courageous of you. It will pay off. Why are you waiting until Tuesday morning? Five days from 2am on Wednesday would be Monday morning at 2am. I don't think most people would recommend ingesting while you're having an attack. It does sometimes happen that people get attacks after ingesting. Not much you can do except ride that out. There's always a danger of what are called slapbacks -- attacks after a dose that can be stronger or at different times than usual, or both. And it's not likely that one dose is going to end your cycle, although sometimes it does. Why don't you have oxygen (as a side note, I have to say it breaks my heart every time I have to ask this question)? Do you also not have a pharma preventive such as verapamil? Are you doing the D3 regimen? You probably should be. Have you tried an energy shot such as 5-Hour Energy at the first sign of an attack? Often it will reduce the severity or sometimes even abort. Some people find that standing with their feet in very hot bathwater helps abort an attack. Melatonin taken at night, starting at about 9mg and working up, can reduce attacks and attack severity for some people. Wishing you the best.

Some folks find that melatonin at bedtime, starting at about 9mg and working up, reduces their nighttime attacks.

We understand the challenge of doing the reading. The thing about the D3 regimen is that while it's pretty straightforward once you get it, it can be a little complicated at first, and you have to make the decision about the "loading" process, so you have to read and then ask questions if you have them. You might have said this already, but do your CH attacks come at night, or typically at a particular time of day? Remember that welding oxygen is a viable alternative for medically-prescribed oxygen.

5k IU is a low dose of D3, which almost certainly won't help you in the short run (or maybe the long run, either). Are you able to see the D3 file that we've linked you to? 10k IU/day is pretty much the minimum, but the early "loading" protocol is much higher than that. It's also important to take all the elements. You might be surprised to know that a 2-ounce 5-Hour Energy has considerably more caffeine in it that the 16-ounce Monster Zero (or almost any other 16-ounce Monster). Caffeine is what you're after, plus taurine, so here's hoping . . .

Good for you for ordering express post on your seeds. Takes forever, otherwise. With 100 RC, you might have to switch to the HBWR for a third dose. Here's the problem, which you probably should have been alerted to before: You will have to stop taking the Imitrex. At least it is very strongly believed that Imitrex will block busting. That's why O2 is so important. Some people wonder whether Imitrex actually will block busting, but it's been an article of faith here for a long time that it will. You could try, I think. Here's hoping (a) your cycle just ends soon; (b) the energy shot helps you (some people like them as cold as possible); (c) the D3 regimen kicks in fast (it sometimes does); and/or (d) you get O2 soon. Any chance you can borrow some equipment from your former volunteer FF associates?

Did you really mean chocolate, MG? Wondering because I know that's a trigger for some people. When C'M gets to processing the seeds, we will definitely refer him to your recipe!

If you're going to go LSA, you probably want RC (rivea corymbosa), which is generally easier to work with that HBWR. Two places considered reliable suppliers of both are www.tranceplants.net and www.iamshaman.com. I'm hoping that by the time you receive them, you won't need them anymore. The file that THMH referred you to is a little conservative about quantities, so please check back with us. There are instructions here for a more complicated extraction using HBWR. Are you not taking a pharma preventive for the migraines? (Verapamil is usually what is used first.) Have you looked into sites like goodrx.com for lower prices on prescription meds? I think you should give the vitamin D3 regimen a good try. Apparently it's very helpful for migraine as well as CH. https://clusterbusters.org/forums/topic/1308-d3-regimen/ Try chugging an energy shot, such as 5-Hour Energy, at the first sign of a CH attack. The caffeine, plus the taurine, helps a lot of people. To abort CH attacks, the most important thing to have is an oxygen setup: tank, regulator of at least 15 liters per minute, and non-rebreather mask. Doctors can and should prescribe this, since it's the #1 medically recommended abortive. But often they don't. Many people with CH (maybe 15-20 percent) set up their own O2 systems using welding oxygen and purchasing the regulator and mask online. Yes, these things cost $ (an initial investment of ~$200), but oxygen is the life-saver for virtually everyone with CH.

capsaicin is the ingredient that is used in this nasal thing. you can buy capsaicin sprays and creams at a pharmacy. be sure you get the nasal spray or a cream that's meant for the nose, not the body -- i think the topical ones are stronger, and not meant to go in your nose. warning: while this helps some people, others are quite miserable with having a burning hot nose in addition to a CH attack. If you click on the screen name of the person you want to send a message to, you'll get a screen that has "send message" as one of the options. or, at the top right of the page there's a thing that looks like the back of an envelope. if you click on that, it opens the private message process. Would you mind listing what you are doing now for your CH? I get that you're going to do the D3 according to Batch's instructions, so you don't need to list that, but otherwise, all medications you're taking with amounts, and any supplements. Do try spiny's suggestion of the energy shot or drink at the very first sign of an attack. 5-Hour Energy is a good choice: even though it's smaller than the energy drinks like RedBull, it actually has more caffeine and taurine.

Thank you for the update, Anita'. I'm sure I'm not the only one who wonders how things are going with you two. I suppose it could have been GammaCore that he got. That's a hand-held device that is used on the vagus nerve, at the neck. There were some clinical results that GammaCore had some effectiveness as a preventive, though it's mainly an abortive (something I guess he might be able to try instead of the oxygen, if he keeps resisting the O2), so I'm not sure what one use of it would have done for him, or would have been expected to have done for him. Wishing you the best.

Jimmy', I'm afraid you're pretty far off from Batch's recommendations. If you go just a little way down the page here -- https://clusterbusters.org/forums/topic/1308-d3-regimen/ -- you'll see a table that lists the ingredients. I have been told that it's very important to follow them closely. Thank you for your empathy. Yes, it's my daughter who has CH, and it is very hard as a parent to know what she's going through. Before she was correctly diagnosed -- so she had no oxygen and no effective meds or alternative treatments -- I sat up with her for many nights during her hour-long untreated attacks. You don't forget that. Like pretty much everyone with CH, she's amazingly strong and courageous.

Jimmy Martinez -- It could be that a complete lifestyle change of the sort described in the thing you quote might help with CH. But I would be very cautious about accepting that person's opinion, for two main reasons. First, and most important, it doesn't really sound like s/he has CH. Read the symptoms. Aside from the stabbing pain and red eye, there's no CH there. Second, if CH is caused by muscle tightness, it's odd (unexplainable, really) that it affects people in the way it does: at particular times of day; particular times of year, etc. I suppose it's possible that the onset of CH might cause the kind of muscle issues described here, but it's a huge stretch to consider that the "cause." There are other things, too, but that's enough for me to be very doubtful.

Big Hitter, to ask again -- Are you doing the D3 regimen? https://clusterbusters.org/forums/topic/1308-d3-regimen/ It can make a huge difference. Back when you were getting rebounds from oxygen, were you staying on it for 5-10 minutes after the attack had been aborted? And were you combining it with an energy shot such as 5-Hour Energy? And was your O2 system and breathing strategy optimized? I've read a lot about these rebound attacks over the years, and there's a report of them from 2011, which almost certainly was not conducted with what we know today to be the best system (high-flow regulator, top-quality mask, and hyperventilation). In what I have read here and at ch.com, many people overcame that rebound effect with one or all of the things I just mentioned. Just a thought. Yep.