CHfather

Definitely much better prices on Amazon. I would not advise getting a regulator that only goes up to 15lpm. Many people need more. In my opinion, a welding reg (also CGA-540) is the best way to go, because it gives you a flow rate that can be pretty much as high as you need it to be. It's very slightly tricky to use the first time because the settings aren't "clickable" like they are on the others that have been mentioned, but everyone gets the hang of that very quickly. One example of many at Amazon: Amazon.com: KLLsmDesign Heavy Duty Oxygen Regulator, Large Tank Gauge Cutting Torch Regulator, Outlet 0-200PSI Inlet 0-4000PSI CGA 540 : Health & Household Welding reg is only good for the big tanks; the clickable ones are what there is for the smaller tanks.

Fingers and toes!! Keep us informed, please.

Do you have a prescription for medical O2?

You were having 10-15 headaches/attacks each day? How long did they last? This is a very confusing to me, because it is extremely rare for someone with CH to get so many attacks. It is much more typical of a different condition that has symptoms similar to CH, such as episodic paroxysmal hemicrania (Chronic paroxysmal hemicrania - Wikipedia) or SUNCT (SUNCT syndrome - Wikipedia). I'm not sure what you mean by "individual cans." Do you literally mean the small cans that contain oxygen -- such as Boost Oxygen? Or do you mean a large tank or a cylinder that has oxygen in it? (If you have SUNCT or paroxysmal hemicrania, oxygen usually doesn't help.)

The Dr. Reddy 6mg injectors are both .5ml. Sumatriptan - Sumatriptan Injection - Migraine Medicine So I would imagine a 1ml vial would work fine. Again -- if my reasoning is wrong, I hope others will correct me. Lots of 1 and 2 ml vials at Amazon. I called my pharmacy, part of a national chain, and they don't stock vials.

I am very, very sorry!!!! I should have looked before I leaped! In my household (I don't have CH; my daughter does), we have only ever tested for D, and there have been no issues. Again, I am very sorry for my error. I see that the calcium/PTH test is also available from labs, if your doctor won't order it. (I guess it is a logical addition to the D test for a doctor to order, since D can potentially imbalance calcium and PTH.) I am hoping that others here will tell you how they approached their doctor about this -- and, you can send a message directly to Batch, who has always been very happy to advise people. You would not be imposing on him -- this is his baby, so to speak, and he has always been very generous with his time. To message him, click on the envelope icon at the top right side of the page and put xxx into the "To" line. The vial method was recommended by @jon019. I'm sure we got it right before posting it, but let's double-check. (We had similar frustrations to yours in getting the Imitrex dispenser open, but found that with patience the cut, keep wiggling, and crack open method eventually worked.) (Damn, I wish you had O2. That will so dramatically change all this.)

I will urge you to start the D3 right away, without waiting for a lab test. I promise you that unless you have been taking regular D3 supplements at high levels, your D is low. (If you had a thorough annual physical (Medicare, I assume), your D was probably tested then.) The best way, as you say, is to ask your doctor to prescribe the vitamin D test. If you don't want to go that way, or get refused, you can have the test done at a lab without a prescription. Your doc should be okay with ordering the test, just in general because most docs appreciate the importance of D. Also, if s/he has any respect for what you are experiencing with CH, it seems like it ought to be enough to say that you have seen some promising results from an anti-inflammatory regimen that includes D3 and you'd like to try it. (I would try to avoid telling the doc what the amounts of D3 in the regimen are, because some can get a little freaked out by that.) For the lab test, if you just google, lab vitamin d test near me, you should see places where you can go to get the test, and pricing, etc. There is also a mail-in test that you can order online (or maybe find at a pharmacy). I think this is the least reliable (and slowest) method. I hope you are splitting your Imitrex injections. Getting partial doses from sumatriptan injectors (Imitrex, Imigran, etc.) - ClusterBuster Files - ClusterBusters For a pill to have any chance of helping, it has to be taken at the beginning of -- or before the beginning of -- an attack (some people can do that if the attacks come at predictable times). I'm sorry you don't have O2. Some people get good abortive results from deeply inhaling cold air, from an air-conditioning vent or outside, if it's cold out. Please get back to us if/when you are considering busting. This isn't the right board for discussing it, so I'll just say that there are substances that you can legally buy and possess that are just as effective as MM (eliminating the sourcing problem you mention). And they are typically tripless.

Maybe someone will give this a try. Do you use the Pepcid as a preventive or to stop an attack that has already started? Just as a historical perspective, I will mention that the antihistamine Benadryl has often been shown to be quite effective, and the overall D3 regimen is also an antihistamine method. Pepcid works on different histamine receptors than Benadryl (Pepcid, H2; Benadryl, H1), and it does seem (to me) that Benadryl might get more effectively to pain sources, since Pepcid works mostly on gastric/digestive tract receptors. Regarding Tiger Balm, there has been discussion of it over the years, and several people have said that it gives them some pain "relief" by being unpleasant enough that it distracts them a bit from the CH pain. You can read input about this by putting "Tiger Balm" into the search bar that is at the top of any page. In your 17 years of CH, I assume you have, as people often say, "tried everything." Are you not using oxygen, or the D3 regimen, or anything besides Pepcid, Tiger Balm, and turning your neck to manage your attacks?

If the BBQ pork was Chinese, I feel sure it's MSG that was the trigger. Even if it wasn't Chinese, there's a decent chance there was MSG in the sauce. Be sure he knows this about reducing the Trex dosage: Getting partial doses from sumatriptan injectors (Imitrex, Imigran, etc.) - ClusterBuster Files - ClusterBusters What you say about the Trex suggests that he doesn't have oxygen. It's something that could make a big difference for him!!

I am very curious to look at your work, but because my daughter has CH, I try to avoid the more vivid reminders of what it's like. I wish you the best.

Horrible, horrible, horrible. I am very sorry, and that interviewer should be fired, the bastard. I think it's obvious to us that even looking for work in your current situation is practically heroic. Gotta ask: Are you doing the D3 regimen -- that really makes a big, big difference for most people -- and have you managed to get oxygen? And is this common for you -- a remission period of maybe a couple of weeks and then the attacks come back? It's not clear to me what you mean when you say "The 5 day rule failed me." I remember that at one time you were taking relatively small doses. Am I right that you kept dosing during this remission time? If you want to say more about what you have done, maybe it'll help.

I suppose "satisfactory" is the key word in what you wrote. Certainly there have been possible explanations offered, particularly with regard to REM sleep (Exploring the Connection Between Sleep and Cluster Headache: A Narrative Review - PMC). According to one study (attached here), 2am is the most common time for attacks, but midnight, 1, and 3 are right up there. (Rather than a specific time, it's probably more accurate to say ~90 minutes after falling asleep.) (At least as far as I can tell, the attached study actually tells us almost nothing, since of course people get multiple attacks and they all are counted here.) However, as many as 25 percent of people with CH don't get nighttime attacks, and the number of reported attacks (in the study) at 2pm and 3pm (outside the time range of your theory) isn't all that much lower than the number at midnight or 1am. Well, but why would it want people to be awake and experiencing excruciating pain, or use excruciating pain to wake them? And why, if maybe we all, or most of us, have a biphasic instinct wired into our brains, are so few people afflicted with CH (or just generally, why do so few people wake up, with or without pain, at those early-morning hours, or ~90 minutes after falling asleep)? And why does a daytime nap so often bring on an attack? These questions are not to dismiss your idea, which I think could be part of the puzzle, but to say that there are surely more complex things going on and to agree with you that it would be nice if there were "a neurologist specialising in both sleep and cluster headaches out there who latches on to this." Of course, there are whole cultures that have a biphasic sleep pattern, though not exactly the kind you have been referring to. A siesta in the afternoon along with some nighttime sleep (usually less than 8 hours) is pretty common in many Latin American and European countries. I guess someone could look at CH incidence among those populations. Rozen - Cluster_Headache_in_USA-2.pdf

Hello, Megan. I hope this works out for you! The only existing graphical things I can think of are the things you can find with a straightforward Google image search. There are several large surveys of people with CH, one done around 2011 by Todd Rozen and others, and another from fiveish (??) years ago by Larry Schor and others. I think you'll be able to find these by googling. They have some graphics, but I'm thinking might be a lot of information in there that could be converted to the kinds of graphic formats you mention. ClusterBusters has led a recent large-scale study that I don't think has been published yet. I'm not sure how much that study is focused on the use of psychedelics to treat CH; the Rozen and Schor ones were most about demographics and how people experience CH. I'm sure you're also aware that there are several books at Amazon about understanding and treating CH. I don't know how much they use graphics (I feel pretty sure that they will have the usual ones -- a brain map showing the hypothalamus; a chart of differences between CH and migraine; some kind of symptom list), or how much you might find there that you could treat graphically. Finally, there is some amazing artwork illustrating the experience of having a CH attack or being a person with CH. I have seen that in various places, but can't say where you might find it (maybe it will also come up from a Google image search).

Fascinating

Sumatriptan pills are a waste of time. Only the injectable version or an inhaled triptan really work. One symptom of CH is the absolute inability to be still during attacks -- pacing, rocking, etc. are typical. With untreated CH, there is often more dramatic activity. I'm sticking with my guess that you don't have CH. You don't seem to have received much medical attention for whatever it is. I think virtually any competent doctor, just going "by the book" for a migraine diagnosis, would have prescribed a preventive such as verapamil and an injectable triptan (Imitrex is the brand name in the US). Also, the new migraine meds (if that's what you have), such as Emgality, seem to be quite effective (for migraine). The D3 regimen that I mentioned above will help you a lot if you do have migraine.

The specific cyclic nature of these (a month or so on, a month or so off), and the very long attacks ("hours" is not particularly unusual, but "days" certainly is), suggest to me that it's not CH that you have. When you say "Severity does change slightly during that period but it's very painful the entire time," it does make me think of a condition that is a kind of CH "look-alike," hemicrania. There are different forms of hemicrania (hemicrania continua (https://my.clevelandclinic.org/health/diseases/21538-hemicrania-continua) and paroxysmal hemicrania (Paroxysmal Hemicrania: Causes, Symptoms & Treatment). Neither one is precisely what you have described, but you might be close to episodic hemicrania continua. Hemicrania typically (but not always) does not respond to sumatriptan injections, which you might have been prescribed for a migraine diagnosis. Hemicrania also typically (but not always) does not respond to oxygen, which would normally be a prescription for a cluster headache diagnosis. So if your attacks have responded to either/both of those, it would cast doubt (but not conclusively) on a hemicrania diagnosis. It's relatively easy to test for hemicranias, since they do respond to a drug called Indomethacin (when it is properly prescribed). Can you say something about what you have taken to treat your condition? You might want to consider starting on the vitamin D3 regimen, which has been an effective preventive for many severe headache conditions. https://clusterbusters.org/forums/topic/1308-d3-regimen/

"FDA defines rare disease as any disease that affects less than 200,000 people in the U.S." Even by the low estimates of one person in a thousand having CH, that would be about 340,000 people.

Glad you got that recommendation from Karisa! A few suggestions: For prevention, try the vitamin D3 regimen that has made a huge difference for many hundreds of people with CH. Headache Treatment Protocol Update - General Board - ClusterBusters. A neurologist is probably going to give you verapamil, which I'm sure you have already tried, or something else you have tried. D3 works better and is typically without side effects (actually good for you). If you're going to use an injectable triptan, learn how to split your doses: https://clusterbusters.org/forums/topic/2446-getting-partial-doses-from-sumatriptan-injectors-imitrex-imigran-etc/ So many people have said here that oxygen didn't work for them, only to have it work fine when they optimized their systems and methods, that I have to suggest that if you have NOT used a flow rate of 25 lpm or more, have not used the mask specifically made for people with CH (or maybe you even got the useless nasal cannula instead of an actual non-rebreather mask), and have not tried different breathing strategies, it might be worth it to you to try a fully optimized approach. (Also, it's important that the O2 is coming from cylinders, not a concentrator.)

the anti-inflammatory vitamin D3 regimen has worked very well for people with chronic and episodic CH (https://clusterbusters.org/forums/topic/1308-d3-regimen/), and "busting" (using psychedelics), when done properly (not with microdoses and generally five days apart, not three or four), has also benefitted many to prevent cycles/attacks and provide an end to episodic cycles or remission from chronic attacks. you don't mention oxygen in your posts, but it is a very effective abortive for chronic and episodic folks, and so is DMT. None of these things (D3, oxygen, or DMT) blocks busting, and there are other CH meds that don't block busting. again -- may you never need any of this information, and may your discovery benefit many others.

If the CBD ever lets you down and you start having attacks again, please check back in here. Some of what you say above is a little bit inaccurate, and people here will be able to give you some guidance about highly effective preventives and abortives that you can use while dosing with psychedelics (or on their own). But for now, may your CH-free life continue forever!!

I was surprised to see that CHsince99 seems to be getting good results, even preventive effects, from "drowning myself in coffee, " because in the experiences that I know of, the approach that you describe -- limiting coffee only (or as much as possible) to times when it is needed as an abortive -- seems to have made the caffeine more effective for achieving or helping the abort. Very frequently there is new stuff posted here about so many things related to CH, contradicting or challenging what I thought I knew, and there are so darn many possible variables that I don't see a good way to sort them out, except by the kind of question you ask and seeing what the most common experience is.

I very much appreciate this report, and as you say, it probably couldn't hurt for people to give it a try. It's wonderful that you have experienced this relief! I will say that you are far from the first person who has reported here on trying CBD, and some have indeed reported good results -- though not a "cure," which is not a word we use here lightly, and surely not until at least a couple of years have gone by. If you (or anyone else reading here) want to see past reports related to CBD, just put CBD in the search bar located at the top of each page (here's an example: https://clusterbusters.org/forums/topic/5581-cbd-i-know-i-know-but-bear-with-me/#comment-56361). Of course, it is possible that through your research you might have hit on just the right oil and/or just the right dosage and/or who-knows-what other "just right" thing that gets it all aligned. If you don't mind, I have a few questions/requests: Two questions here: (1) Did you continue dosing with shrooms? (2) Would you point me to one of those videos you mention, making that specific recommendation ("small micro dosages of 0.4 grams every 3 to 4 days")? As the first site specifically created to encourage/help people to use psychedelic substances to treat CH, we try to keep track of what people are saying out there about how to do it, and I have not seen videos making this recommendation (which is different from what we have learned here about the best way of treating CH with psychedelics). As people here know, I like to dig into the research, so I have the same request: Would you be kind enough to point me to one of the studies you found showing this deficiency in people with CH? I have tried googling, and I have found research about hormones lacked by people with CH (one study, for example, says "CH often show accompanying neuro-endocrinological changes such as a blunted circadian rhythmicity of hypothalamically regulated hormones including testosterone, cortisol, growth hormone, thyroid-stimulating hormone, prolactin, melatonin, follicle-stimulating hormone, and luteinizing hormone..."), but I haven't located anything about endocannabinoids and CH.

Well, there isn't that, but the core principles are pretty straightforward: > Use the vitamin D3 regimen to prevent cycles or at least lessen the severity of attacks during cycles: https://clusterbusters.org/forums/topic/1308-d3-regimen/ > Yes, there are other preventives that work for some people at the right (usually high) doses, but D3 ought to be enough, and it has no (or far fewer) side effects > To end a cycle and potentially prevent one, busting is a choice that many make (click on "New Users - Please Read Here First" at the top of any page here) > To stop an attack, oxygen is the go-to for most people. (This is discussed, along with a lot of other things, here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/). Many people are finding DMT to be an effective abortive (DMT experiences and advice - Theory & Implementation - ClusterBusters). Triptans in various forms (injected or inhaled) will also stop attacks, but with side effects (see the "basic non-busting information" file above for more on this). > A course of prednisone, if properly prescribed, will typically hold off attacks during a cycle for some amount of time, and can sometimes (rarely, in the experiences that have been described here) end a cycle > There are lots of other strategies that can be used to supplement the above, or make some things more effective (caffeine, for example), and to treat the shadows that some people get. You can read about all that in the linked document from above (https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Oxygen should not be hard to get because you're episodic. A doctor should prescribe it, and (if you're in the US) Medicare would most likely cover the cost. And it is the job of oxygen suppliers to do the part you mention -- bringing it up to your apartment. But even if you go with welding oxygen, unless you have to walk up a lot of steps to get to your apartment, it ain't that hard to lug some decent-sized O2 cylinders once in a while. There are rollers you can put them on, for example, or some decent sized ones fit in a rolling suitcase. If you are using the injectable triptans, be sure to split your doses: https://clusterbusters.org/forums/topic/2446-getting-partial-doses-from-sumatriptan-injectors-imitrex-imigran-etc/

Thank you for posting this. Quite a few people (though not all) have reported good results from ketogenic diets (I understand that carnivore is a subset of keto).