CHfather

john', this is generally very good advice, but the O2 supplier should NOT be giving you (or anyone) a concentrator for home use. They should be giving large oxygen cylinders (M, H, or MM size). Cylinders contain 100% oxygen; concentrators provide about 92% oxygen. There is a big difference in effectiveness. Your aborts using the concentrator (reported in your other post) are taking at least twice as long as they should. (I know from your other post that your situation regarding effectiveness is presently kind of bizarre, but I have never seen another person report better results from a concentrator than from tanks, and there has to be an explanation for that related to the equipment.)

There's no logical explanation for this difference except that something is wrong with your portable cylinder, or the regulator or maybe with the mask at higher flows. I am pretty certain that your tanks shouldn't be getting really cold when you use them. If anything, your aborting experience should be the other way around: excellent or very good relief from pure O2 at 15 lpm and practically no relief at 10lpm from a concentrator. (The relief you are getting from the concentrator is poor, but I'm glad that at least you are getting something.) Call your O2 supplier. Maybe someone else will show up here with a much better response than mine. That happens all the time, but I'm less confident of that than I normally would be because so many of the real experts are at the conference in Texas right now. Is your mask a non-rebreather mask? If you don't know, ask the O2 supplier when you call them.

Welcome, d'w. I can't directly answer your question. I assume that because calcium channel blockers often are effective preventives for CH, your doctor wanted to try a different one to see whether your husband could get the benefits without the side effects. I know that a lot of people used Procardia back in the "old days" (~10 years ago), often with good results, but somehow Verapamil has seemed to become to ccb of choice. Point is that it's possible that it can work for him, and therefore might be worth trying with a close eye on the side effects (which should always be true with ccbs in any event). That he got hit after busting isn't a sign of whether the busting was effective or not. Takes a few doses to be effective, and among other things it's not clear whether anything he had been taking until recently might have interfered with the bust. For example, I think Pamelor is a tricyclic (?), and it's believed that they might interfere (if he'd still been taking it within about 5 days of the bust). In any event, it looks like you will tell us more soon, which is great.

What Denny said. What flow rate is the regulator are you using, and what mask do you have? Have you tried an energy shot or energy drink right as you're starting the O2? Are you getting good deep breaths of O2, and holding it in your lungs for a moment before you exhale? If you're using trex, you should at least be splitting your injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Have you read the document and the follow-up posts about triggers? https://clusterbusters.org/forums/topic/4568-triggers/ You can't take the seeds yet because of all the blockers, but you don't have to worry. With 90-plus percent of people, there are zero psychedelic effects. If you get things more under control with O2, D3, energy drinks, you can also start with low doses of seeds to be close to 100% positive that you won't get any effects. You don't sound like a wimp. CH is miserable, scary, and incredibly hard, particularly on someone in your situation with kids and a job. You're doing what you can, what you feel you have to do. It's a war, and you're doing what you can. We're just hoping, and believing, that maybe we can help you find better ways. I've also PMed you regarding the D3 regimen.

So so sorry, elpo. I know many people here (even some who do have people around them) can appreciate the terrible aloneness. Since busting has been so good for you, I think many would suggest that sometimes when one busting substance seems to suddenly lose effectiveness, another one can still be effective. So, if you were using M, maybe seeds would work. Like Denny said, if you don't have high-flow O2, you should. And if O2 was one of those meds that didn't work for you in the past, that might have been because the flow rate was too low, or you didn't have a good-enough mask, or even that you weren't using the best breathing method. Stay in touch, please.

Treelove, J's questions are worth answering. It would probably be good to tell us what else you have tried. Verapamil? Triptans? Those are the two most common prescriptions (oxygen should be the most common, but it often isn't), but even if you had them, if you were given too little verapamil or an ineffective kind of triptan (pills instead of injections), you haven't really "tried" them properly. Doctors screw up all the time in treating CH. In my post above yours, I give all the information I have about really learning more about DALT, which is to go to the Facebook group called "Cluster headaches" and become a member. There you will find lots and lots of informed discussion about DALT. I provided this link in that post, though I can't say for sure that it will work for you: https://www.facebook.com/groups/17789934480/ If you go there and request membership but have any problems getting accepted (which shouldn't happen), let us know.

Now posted in ClusterBuster Files section. https://clusterbusters.org/forums/topic/4568-triggers/ Thanks to everyone!

You can get oxygen prescribed by a competent doctor (which means maybe there's a 30% chance of getting it, maybe up to 60 or 70 percent if you provide them with the info and you're persistent). Lots of people get welding oxygen from a welding supply store and order a mask and regulator over the internet. Initial cost might be $200-$300, depending on a lot of factors (size of tank(s); quality of mask; rent or buy tanks; local market); only cost after that is tank refills. If you want specifics, just ask.

Thanks. Team effort. I was just the scribe (not to be confused with the revered Psiloscribe), and not even a very good one without help from THMH, who's the one that started this ball rolling.

Since you know that oxygen is essential, you need to figure out a way to get it. Welding oxygen is an option, but I don't think you can give up yet on getting it through the medical system. You can ask his PCP to look up the standard treatments for CH in any reference book or app s/he uses. Did the PCP give a reason for being so limiting? You can significantly reduce the amount of Imitrex he gets with each injection (and it will still stop his attacks): https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Vitamin D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Melatonin at night: 10mg and more as needed Drink down an energy shot (such as 5-Hour Energy) or energy drink (Monster, Red Bull) at the first sign of an attack (this will probably work better than the method he's now using) Putting the feet in very hot water when an attack starts seems to help a lot of people As far as pharma goes, it's completely standard to prescribe verapamil as a preventive along with imitrex as an abortive. I guess if hubby's worried aboiut his heart he might nix this, too. Look over the list of possible triggers here: https://clusterbusters.org/forums/topic/4562-next-triggers-draft/ He's a great candidate for busting (because he's not using anything that would block busting). Read about that in the numbered files in the ClusterBuster Files section of this board.

You're not the first to use the hot-water-on-the-feet approach. Several have reported it here, and said they had success with it. However, I don't think they have made it as scalding as you have -- they have a different theory about how it works, which is not by displacing pain but by affecting blood flow. You say that you have "tried every conceivable method mentioned on the internet to treat them with nearly no help." What does that include? High-flow oxygen with a good quality non-rebreather mask? The vitamin D3 regimen? Melatonin at night? Energy drinks/energy shots? Imitrex injections? Busting???? Most people can abort an attack quite quickly with oxygen. The D3 regimen is a very effective preventive. Energy shots/drinks work very well for many or most people. Busting (taking psychedelic drugs in a proper way) is very effective. Let us know what you've done. Maybe the extreme superficial pain strategy will turn out to be the one that works best for you -- but I really doubt it.

Lovely. Looking forward to any additions, comments, and suggestions.

Thanks again. Two very small things: (1) I notice that I made a typo in a quote that's repeated twice, once in the quotes at the top and once under "Sleep, Rest, and Relaxation." The quote is “For years I couldn’t understand why I got a headache 30 minutes after I left work regardless of what time I left, I was blaming the dusty atmosphere until I read that relaxation was a trigger. It was an epiphany!†Should be a period, not a comma, after the word left. (2) I wonder if it would read better if the headings were at the left?

Thanks, J!!! There are a couple of headings that you might have missed (or you might have decided that they fit under the other heading). So, I had a separate heading for Sleep, Rest, and Relaxation (coming after Personal Habits and Activities); and I had a separate heading for Medications and Supplements (coming after Medical Conditions). The headings are still there, they're just not formatted like the other headings. At the beginning, the last quote (about MSG) should be aligned with the quotes before it. Thanks again! I'll look forward to comments about this so we can finalize it.

Okay, I have completed a Word document with the latest draft of the triggers list. However . . .When I try to post it here, the formatting gets all screwy. It would take me an hour to try to fix it, which I don't have right now. As far as I can tell, we can't use attachments. So I'm kind of stuck until I have enough time to deal with this. Soon, I hope.

Best wishes, Erika'! Keep us informed if you can.

:-) and fingers crossed for you

CH is often misdiagnosed as sinus headache. More than a few people with CH have had sinus surgery because that was thought to be their problem when it wasn't. Evidence is growing that pollen/allergies have an effect on CH, and I would imagine also on sinus headaches, so there could be a false correlation there. Do not fully rely on what an ENT says -- they can see things that aren't there. I'm not saying you don't have sinus headaches or some other kind of headache or CH -- only to be careful about that diagnosis. Try to get to a headache center if you can (most neurologists are pretty useless). Your symptoms are not all classic CH symptoms -- your attacks are a little or a lot too long to fit the "standard" definition, though some people do get long attacks; it's rare for a sequence of attacks to go on for only a few days; people do vomit from the pain but it's not common. The pain around your eye is classic CH. I don't think the numbness is a typical CH symptom, either, and I just don't know bout the popping. Others might have something to say about that. Needless to say, these are some serious effects (including that heart rate drop), and I'm sure you'll look into them vigorously. Did you get anything at the ER that seemed to help?

The lidocaine was probably an SPG nerve block, I would think (could be wrong). That, of course, could be why he's been feeling better (as opposed to the magnesium and . Or vice versa. Here's some info about SPG nerve blocks. https://americanmigrainefoundation.org/find-a-doctortreatment/treatment/sphenopalatine-ganglion-blocks-in-headache-disorders/ Also a treatment with very mixed results.

I've got nothing on bee stings. But (1) Please do try the D3 regimen, following it to the letter (https://clusterbusters.org/forums/topic/1308-d3-regimen/); and (2) There are plenty of folks for whom 15 lpm oxygen didn't work but a higher flow, 25 lpm or more, does work, particularly when the good mask, the ClusterO2 Kit, is also used and effective breathing strategies are applied. I'm asking you to very seriously consider trying oxygen again with those improvements. If you need information about getting the equipment, let us know. I'm interested in know how you use busting to abort attacks. There was a time when that was understood to be an effective abortive, but most folks here now use it to stop their cycles or put them into remission if they're chronic. I wonder whether you have tried that, which I'm assuming might involve larger doses than used for aborting.

Hmm. Hope it's the mag plus whatever that's helping. Mag has been recommended as a CH treatment for some time. Very mixed results, as with almost everything that's not first-line. Some thanking the Lord for it and others saying it does nothing, or worse, for them. Some powerful effects on the bowels, I have read. DosePro is the same sumatriptan, just delivered differently. Expensive, but maybe your insurance covers that. Imitrex is now the generic (as I understand it) and DosePro, because of the new delivery technology, is non-generic. Maybe you can convince the doctor or the pharmacist to go back to 'Trex. I know a young woman ("young" to me, early middle-aged I guess to others) in DC whose life was changed by O2. She has become very reclusive in general, and even more so when she's in cycle as she is now, but maybe she'd agree to meet with him, if he wants. Unlike most people with CH, she has no interest in meeting others with the condition, so it's just be a favor if she's willing to do it.

I'm very glad this works for you. I have no idea whether it's safe. It's also interesting to me that it seems you can stop a cycle with shrooms even when you are using triptans, if I'm reading that correctly. You know you can split the injections? Still expensive, but 3-for-1, at least, and of course an extended supply. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ You're not using oxygen, I take it. That 15 minutes to abort with the snorting could well be considerably less time, and no side effects, with an optimized O2 system -- high flow, good mask, good breathing technique. Have you tried the D3 regimen? Very effective for most people who try it. https://clusterbusters.org/forums/topic/1308-d3-regimen/

Damn. Are you possibly in a period of high pollen there (which would throw more histamines into the mix)?

I wonder if you could get to see Dr. Brian McGeeney in Boston. He's a great, great friend to people with CH. I'll PM you a way to contact him (he posts here using a screen name, but I don't like to put people's real names with their screen names). At the very least, I'm sure he'll be at the conference. I think everyone here will agree that prednisone is meant for short-term relief to allow other meds to kick in, NOT for long-term treatment. It's not exactly clear to me how much you're taking, but in my opinion it sounds like much, much too much. Your dosage of verapamil was very low. If there wasn't a medical reason not to go higher, you should have been trying two, three, and even four times as much verap. Depending on how much Imitrex you're using, that can be causing rebound issues, too. I'm glad O2 is working for you! Are you splitting your injections? https://clusterbusters.org/forums/topic/2446-extending-imitrex/ It's pretty rare that the D3 doesn't help. I'd consider trying that again. You can be directly in touch the the originator of the D3 regimen, Batch, who will do his 100% best to make it work for you. Batch will be at the conference, too. Mushrooms won't help while you're taking pred or trex.

amon', do you have the ClusterO2 Kit or some other device that gives you the option of breathing through a tube? A lot of people prefer to do it that way. Here's an illustration (starting at about 5:30): ClusterO2 Kit: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit