CHfather

Messaged received and answered. Of course, PMs are fine. But the subject of demand valves is so often discussed here, without a huge amount of clarity, that if this conversation might be public, we might all learn something from it. Again -- Not criticizing anyone. Keeping it as PMs is fine. But if there's info that could be shared, I for one would love to learn from it. On a different note, I will say that I have been watching a lot of Sherlock Holmes episodes on TV lately, and my powers of deduction have increased dramatically. So I am going to take a guess that you might be a musician, SHallMusician. If so, you should be auditioning for the Fuster Cluckers ensemble. @Bejeeber is the place to start, I think.

If you type DHE into the searh bar, you'll see a lot of reports. This one is from "Boston Headache Doc," (from 2014). As you may know, he is a physician who is strongly committed to patients with CH and to the ClusterBusters organization. "DHE 45 is dihydroergotamine, hence it is an ergotamine, but one with poor oral absorption. So it is given in other routes- as a nasal spray, under the skin (subcutaneous injection) or intravenously. There is even an inhalation product in late development. On occasion I admit patients to hospital for DHE intravenously every 8 hours for a few days- works in most people but often the attacks of cluster come back after the therapy. Can give patients a much needed break, emotionally useful, even if the break is only temporary. I also prescribe DHE vials, then come in packs of 10, and patients can inject under the skin- it is not that hard to do. Patients could use this as a once off abortive, or use it twice to three times a day for 48 hours to try and break the cycle. While you are on an ergotamine you should not be taking triptans however, and also not any other ergotamine derived substance (hmm). Those with known cardiac disease or peripheral vascular disease cannot use this treatment." [Back to me] From all I've read, and from what BHD says here, I think DHE is mostly effective as an abortive, but maybe it can give a short-tem break or in some cases break a cycle. I don't know how responsive BHD is to PMs, but I suppose it might be worth trying him to see what his more recent experience has been.

We can all be relieved that you don't prefer Cap'n Crunch.

It's been mentioned here before, from time to time. Glad it's helping you!!! (Though I'm not sure I'd abandon the D3 regimen.) Do you not have oxygen (you don't mention it)? I think if you click here you'll see the "search results" page showing times when peppermint oil has been mentioned. You can tell just from the overview that it has been used in several ways. https://clusterbusters.org/forums/search/?q="peppermint oil"&quick=1

My first thought reading the first paragraphs was hemicrania continua (HC). https://my.clevelandclinic.org/health/diseases/21538-hemicrania-continua It's a characteristic of HC, in contrast to CH, that oxygen doesn't work the way it does with CH (which I would say is true of what you are describing). Also, triptans typically don't work, either. But sometimes they work a little. There are several types of hemicrania. The good news, if you have a hemicrania, is that it is treatable with a medication, indomenthacin. In fact, that is the diagnostic test for hemicrania -- whether indomethacin successfully treats it. If you do have reason/opportunity to test Indo, be sure to look around the web for proper dosage. There are a lot of recommendations about that.

And here I was thinking it was a tribute to the great Flava Flav!

Some people like using just the breathing tube, without the mask. This video shows how to assemble the thing, and then shows him using it with just the tube. https://youtu.be/eX76JrEvNxE

In your first post you mentioned that you have had all-day headaches, with spikes. We kind of ignored that, but as you raise this I think you might want to consider the possibility that you might have a CH "lookalike" condition, some form of hemicrania. Hemicranias typically do not respond well to oxygen or triptans, but I gather that you have not really tried either one yet. You don't really fit into any of the specific hemicrania categories, but you can see the symptoms of one type here: https://www.ninds.nih.gov/health-information/disorders/hemicrania-continua#:~:text=What is hemicrania continua%3F,both sides of the head. It could be/is most likely that you have CH and you are experiencing what are called "shadows," but what you describe seems like it might be more than shadows. In the document I keep urging you to read -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- there is a discussion of shadows and things you might do to alleviate them.

This is a way to make something that will work "like" a mask (in that it will hold O2 for you to breathe in, and then it will refill for the next breath). You might or might not want to try to whole process (hyperventilating with room air, etc.). It is recommended by Batch (whose handle here is xxx), and there are not many people here who know more than Batch does. https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ If you do it this way, be sure to squeeze the O2 out of the bag after you have stopped the attack.* You don't want a bag of O2 laying around. *Actually, you should keep using O2 for a few minutes after you have aborted the attack. It seems to help prevent subsequent attacks. You can do this last O2 breathing in a more relaxed way than you might have used to abort the attack.

Edited to say that this was posted at the same time as Bosco' was posting, and I hadn't seen responses to you on other threads, such as the one from spiny that Bosco' mentions. Maybe you've heard a lot of this already. Okay . . . Gotta ask this. First, what do you mean by "micro-dose"? Enough to have any kind of "trip" effects? Do you know the weight of the dose? Did you dose during an attack, near an attack, or at a time when you were having no attack and not expecting one? Are you using the triptans? You are getting results. That is definitely what matters. You might be aborting individual attacks (it's just not clear to me). Most people here use psychedelics as a preventive -- to end their CH cycle, not to stop individual attacks. If you read the material at the "New Users -- Please Read Here First" banner at the top of the page, you'll see the method that is used by most people here and strongly recommended -- significant doses (enough for some level of "trip" if you are using psilocybin or LSD) five days apart, with no triptan usage in between. The prevailing wisdom here is that if you take doses every day you will eventually run out of effectiveness because the receptors become blocked, and that if you use triptans, they will block the effects of busting. I underlined prevailing wisdom because, while those beliefs are like "policy" here (because they have proven highly effective over the course of 15 years), there are people who are not so sure. So you can continue what you are doing because it works (unless it's the sleeping outside that works, or your cycle us winding down, or you are early enough in the daily "microdosing" that nothing is blocked), or you can try it the recommended way. In the longer run, you are almost certainly going to want to do it that way. When you get your oxygen set up it will be easier to wait the five days between. Speaking of your oxygen setup . . . You have a regulator? And what kind of oxygen supplier would send a tank with no mask (and maybe no regulator)? It's okay that you bought your mask -- it's actually cheaper in the long run than "renting" it from the O2 supplier -- but unless your doctor wrote a weird prescription, it's practically malpractice for them not to give you a mask (the standard prescription says "with NRB" (for non-rebreather)). (I will also note that in the excellent video that Bosco' linked you to, the demonstrater is using a "demand valve," which is a different thing than a non-rebreather mask. It doesn't have a reservoir bag on it that empties and refills as you breathe. So you might look at this one, where he's also using a mask that is slightly different from what yours will be, but it has a bag so you can see how that part works: https://www.youtube.com/watch?v=PtFHRIQN17s Did you get big tanks, about three feet tall or more? I would urge you to read the file I linked you in my previous post. You really want to start the vitamin D regimen. There's a link to it in that file.

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.