CHfather

It doesn't look like you're going to get much of a response here, Florin. Have you tried the various Facebook groups? They have a lot more participating members. The group called "Cluster headaches (trigeminal autonomic cephalalgia)" is highly regarded here, but there are also others. I'm perplexed when you say "oxygen for the migraine," because oxygen is never, or almost never, prescribed for migraine. It just isn't very effective, or effective at all. Only for cluster headache. In a city where practically every major medical center has a headache clinic, I'd be surprised if you couldn't get an appointment, and if your condition is cluster headache, it would be surprising if a big-city, hospital-clinic physician or PA didn't prescribe oxygen. Montefiore, Mt. Sinai, Cornell, NYU, Columbia. Maybe you've tried all these, or maybe you are hoping for a first-hand recommendation. As Bosco' said, you're not really sacrificing anything to go with welding O2 .... Over the long run, it could even prove less costly than a medical prescription, depending on what your insurance covers.

For an overview, you might take a look at this (and the reply posts and the links). https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

@Luis, be sure to split your injections. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

Sorry I can't help with this, Florin. Hoping someone else can. (Might I suggest that "New York area" is pretty big geography?) Please be aware that many people with CH (as much as 20%, I would say) use welding oxygen, which can be obtained without a prescription.

For now ..... split your Imitrex injections. https://clusterbusters.org/forums/topic/2446-extending-imitrex/\ If I had to suggest one culprit for what's going on now, I'd look to the Imitrex, which famously makes attacks longer and more resistant to treatment, and lengthens cycles. Using less is better. Using none (eventually) is of course ideal. It's very common for pharma things that worked in the past to not work anymore. The "medical" solution is more: higher doses of verap up to 960 and even higher; longer and stronger pred tapers (a leading CH expert recommends 21 days with multiple days at 60mg). As you have said, this might have short-term results but long-term drawbacks. Oxygen doesn't go that way. It works and keeps on working. Same is true of the D3 regimen: https://clusterbusters.org/resource/d3-vitamin-therapy-and-loading-details/ Same is generally true of busting, with some adjustments required by some people. (Click on "New Users - Please Read Here First" in the blue banner near the top of each page.) A "certificate of medical necessity" from your doctor seems to help with insurance approvals. As you might know, many people with CH (probably at least one in five) use welding oxygen, which can be obtained without a prescription. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ Try downing an energy shot (for example, 5-Hour Energy) at the first sign of an attack. You might get some aborts from that, which will reduce your Trex usage. (Strong cup of coffee works for some, other kinds of energy drinks, such as Red Bull or V-8 Energy, can also be effective. Despite their small size, energy shots pack the highest caffeine punch. Check your triggers. You never know. https://clusterbusters.org/forums/topic/4568-triggers/

Sometimes prednisone dosage is related to weight. The actual CH recommendation is 1 mg per 1 kg of body weight, to a maximum of 60mg. 60 kg = about 135 pounds, so you'd be fairly light not to get the full 60mg. One more quick "dosage" thing. If the Red Bull works, that's good. I note that many small energy shots, such as 5-Hour Energy, have a lot more caffeine in them than an 8-ounce Red Bull (roughly twice as much), and can be drunk down more quickly. On the other side of this "dosage" issue, some people get good results from a strong cup of cold coffee along with a taurine pill, and some people prefer energy drinks that are probably healthier than Red Bull or 5-Hour, such as V-8 energy drinks. Wishing you the best that this surgery turns out well!!!

I would only mention that misprescribing related to CH is very common -- verapamil usually too low to be very helpful; Imitrex much more than people need while triptan pills are almost always too little . . . . Your prednisone prescription (which I understand wasn't actually for CH) might not have been enough for CH. Some people do get relief from a standard pred "dosepak," but the recommendation from CH experts is more like 21 days with four days at the highest level (typically 60 mg).

If you can't just call your doctor's office and ask for a quick Imitrex prescription . . . my daughter (the person with CH in my family) has had success going to a walk-in clinic and getting an Imitrex prescription. She is fortunate in that she has a letter from her doctor saying she has CH, so she didn't have to worry about the diagnosis being accepted. If you do get Imitrex, remember this: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

In this document, under the heading Treatments without O2 or other meds, some possible abortive strategies are listed: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ I'd say that brain freeze and some variation of standing/sitting in very hot water seem to be the most recommended. Be absolutely sure that there's O2 for you when you come out of the surgery. I see Jeebs has just mentioned the surgery experts. Some anesthetics will fire up CH in a big way. I think these are mostly local ones, particularly epinephrine. The experts will know about that, too. I am old enough that the term "Beloved Bums" has a very evocative significance for me. For Shaun brearly, it probably has a very different meaning.

Batch's recommendation in the past has been to take the calcium channel blocker as far apart (in time) from the calcium supplement as possible. He seems to have stopped saying that at some point, but I think the recommendation still holds. @xxx

Watched that latest video. It's brilliant and clear and moving. What a wonderful job! "No, seriously -- it's a medicine." CB should take those couple of minutes and post them prominently here.

YES!!! Nice! Later came to be called Nobism. But from looking around here (https://clusterbusters.org/forums/search/?q=nobism&quick=1) and on FB (https://www.facebook.com/search/top?q=nobism), it seems to have ended.

There is a fellow, I think in Belgium or Holland, who developed an app for tracking a lot of data related to CH attacks, medications, etc. The name of it is on the tip of my brain, but it's not coming through to me. Trying to find it at the app store, I see there is an app called ClusterUck that might be similar. These folks might have a lot of data. There have also been some major studies of people with CH, most recently one from Larry Schor and others and before that, one by Todd Rozen, that have gathered and processed a whole lot of data; and there is the current one that you can see here: https://clusterbusters.org/forums/topic/13151-cluster-headache-medication-psychedelic-use-survey-2023/.

Yes. You might also find that you can identify a flow rate that produces the same result -- bag full when you're ready to inhale, but not before -- without the turning off and on.

What you can do is affected by what your doctor actually wrote. It would be rare for a doctor to specifically prescribe an "oxygenator" (also referred to as a concentrator); it's more likely that the prescription just said something about O2 therapy, and your oxygen supply company sent you a concentrator, which is what they send to their typical customers (people with COPD). In any event, first step might be to assume that the doc's prescription was general, and call the oxygen supply company to discuss your CH situation (I have had to do this twice, with two different oxygen companies in two different locations). Of course, if the doc actually prescribed a concentrator, you have to get it corrected there. If either the O2 company or the doc is the source of this problem, and won't reconsider, there is literature you can show them about the proper prescription. Did you get a nonrebreather mask, or just those things that go in your nose (cannula)? Some people when first using O2 get relief from concentrator/10lpm (with nonrebreather mask). If you are actually unable to get tanks and a non-rebreather mask, though, you'll probably want to do some DYI and set up a system using welding oxygen.

I would say that a deep inhale/full exhale/inhale again every two seconds (26 times/minute, as you say) is not ideal. The reason for a high flow rate is if your regulator can't keep up with a preferable breathing strategy, but it feels here as though your regulator is dictating your strategy. While people develop strategies that are customized to what works for them, I would say (as it says above) that the most basic, or maybe "standard," approach is to start with a full exhale (with crunch), then a deep inhale, then hold for a couple of seconds, then a very full exhale, and repeat. This is going to take roughly ten seconds. If this technique works for you, you might be able to use a lower regulator setting for that pace and the bag will be full when you're ready. I think this video -- https://www.youtube.com/watch?v=PtFHRIQN17s&t=5s -- is quite good. You can start at around 7:30 in the video to see the breathing technique. I'm imagining that you have to "go lay down" after five minutes because you are practically hyperventilating, but taking a break while using oxygen doesn't seem like an effective strategy. Let us know how things go.

Might be TMS????? Stands for transcranial magnetic stimulation. A relatively new technology that apparently has good results for migraine and maybe for CH. Here's an abstract: https://pubmed.ncbi.nlm.nih.gov/29601305/ You or others might be able to find out more with a more thorough search. (Covered by many forms of insurance for treating depression, but I doubt that it's covered for migraine/CH.)

https://www.facebook.com/watch/?v=2329128713999610

You'll do it, Denny. Another hell for you to pass through and come out stronger on the other side. I know you will. (I've been there with that neck stuff, so I know hell is not an exaggeration.) I just escorted my brother, 87 years old, on a return trip to the West Virginia town where he taught at a college for 49 years. (He lives in Cambodia full-time now.) More than a hundred people came to some events put together in his honor. Some drove from pretty far away, and a few flew in. Those same kinds of gatherings would greet you if CH people lived in the same place. Like him, you have meant so much to so many, across a whole lot of years, always giving, always supporting, making connections. Looking forward to cheering your recovery.

For some people, side-switching might indicate a change in the cycle. For others, it's just another thing that happens. It's not common, but not super-rare. What jon said -- you want oxygen for stopping your attacks. The more you use the injectable sumatriptan, the worse things are likely to get -- more, longer attacks, longer cycles .... And prednisone should be limited to once a year (a taper of two or three weeks). And the amitriptyline is, indeed, probably useless. Get oxygen (Read about that and other things here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/) For now, split the injections when you use them: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Start the vitamin D regimen, which has helped many hundreds, if not thousands, of people with CH: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Consider busting: Read about it at the end of this file -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- or by cliclking on "New Users -- Please read here first" at the top of any page (in the blue banner).

I looked at your pic and thought, "How has he not aged in the 20 years since I met him?"

THANK YOU!

I think some people have found that even years after the expiration date it still works.

I'm not aware of research. It's well-known of course that caffeine helps, and many people think that the taurine in energy beverages, either alone or in some connection to the caffeine, also helps. If you're going to be relying in part or in full on caffeine, try to stay away from it at times when you're not using it for attacks. As with so many other things, it seems you can build a tolerance to caffeine that reduces its effectiveness. Depending on which Monster drink you used, you might well find that it has less caffeine than the much smaller, quicker-to-get-down energy shots, such as 5-Hour Energy. A "standard" Monster has about 80ish mg of caffeine, whereas the standard 5-Hour Energy has more than 200mg, and the extra strength 5-Hour has close to 250mg. Assuming that O2 has worked for you but isn't now -- some/many people find that if the pressure in the oxygen tank is low (maybe 1/3 full, or less full), O2 doesn't work as well.

A sight that is both joyful and sad at the same time. Good going! Does she have the little open holes in her mask (if it's a standard non-rebreather) covered so no outside air gets in when she's inhaling? I'm sure you also know that if 15lpm isn't enough (so that she doesn't have to wait for the bag to re-fill before she inhales), you can get a welding reg for $30-$40 at amazon. Do you have a cart for moving that thing around?