CHfather

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

Since you say "I have tried all remedies," I'm only going to ask whether that includes the D3 regimen, following the whole regimen carefully (including adding Benadryl)? https://clusterbusters.org/forums/topic/1308-d3-regimen/ Wish I could say that there's something that eventually helps everyone -- and it seems to me there almost always is -- but of course you read about "intractable" cases for which some kinds of surgery are the next step. Regarding busting, I would say that many people find that they have to switch substances at some point, for example going to seeds if they have typically used shrooms, or vice versa. This often helps. Some, maybe even many, busters (including chronics) have found that the synthetic tryptamine 5-MeO-DALT helps them. Sometimes the results are pretty miraculous and sometimes they're disappointing. We have not really talked about DALT at this forum for quite a while, but if you are interested in that, I can get you some contacts. As I understand it, DALT is not explicitly illegal in most US states, so it can be purchased online (from foreign vendors), but you have to know who to go to. DALT is (or at least once was) discussed extensively at the Facebook group, "Cluster headaches." You have to request to become a member there. This link might take you there -- I'm not sure whether it will work: https://www.facebook.com/groups/17789934480/

pro2 -- Sorry you're still getting hit so bad; hoping you'll get the O2 soon and the other things (including D3, I hope) will kick in. Have you tried the feet in very hot water in the bathtub thing for quelling/aborting attacks? Some people swear by it.

more reason for me to be jealous.

I'm pretty darn envious that so many of the great ones -- you, Batch, Racer, Jeebs (I would imagine), Hipshot (I assume), and others I don't know about -- are going to be in Austin this year. Sounds like it's going to be one of the great gatherings.

Anita, I had asked Batch whether he had seen people having such problems as your husband has had with O2. I will say again that in my view he knows as much about O2 use as anyone. He's not really responding to what happened to your husband, when O2 seemed to make things worse or be ineffective, but just talking about frequency of attacks. I'm curious about whether any others might have noticed what he's describing. This information probably won't make your husband any more interested in trying to stick with the O2. Here's what he wrote to me: >>>There's an interesting phenomenon that occurs when CHers first start oxygen therapy. The frequency of their CH goes up for two to three weeks then starts dropping by the end of the first month and is less than the starting frequency at the start of oxygen therapy by the 7th week. Subsequent rounds of oxygen therapy for ECHers don't show this phenomenon during their next cycle. CCHers only go through this phenomenon once. I'll be explaining this phenomenon at the Conference in September.<<<

Well, if he does the D3 with commitment, it will help. In your initial message you said he has sumatriptan injections. I'm not going to read back through the whole thread, but he should be splitting those for many reasons, including the lessened effect on causing rebound headaches. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ A prednisone taper might at least give a break from the pain for a while. You said he's taking verapamil. Quite a few people find that it doesn't start helping them until they have reached pretty high doses: up to 960mg/day, and sometimes even higher. Lithium? gabapentin? Both of them help some people, though of course not without potentially tough side effects. 10 mg of melatonin at night (working up from there as needed)?

I suppose he might be frightened by his experience with the pure O2 from the cylinder the other night. An experience with anything that seems to bring on a bad attack can make a person with CH very hesitant about trying it again. Wishing you and him the best.

Just the open holes. If you tape both, which you can do, he'll need to task the mask off his face to exhale. If he does that, he'll have to be very careful not to take in any room air when he inhales. If he covers the open holes with his thumb instead of taping them, he can take his thumb off off to exhale -- but again, he has to be very careful to keep those holes covered when he inhales. I'm not even gonna ask why the concentrator. Because it doesn't make 100% O2, using the concentrator is kind of like leaving the holes open in the mask. Plus, usually -- maybe yours is different -- the flow rate on the concentrator doesn't go up very high.