CHfather

Agree with Jeebs on all counts (except insofar as those counts apply to me), and with Jon'. Just a reminder that welding oxygen can be used as the basis for an easy to set up, cost-effective O2 system. Lots of people with CH do it that way. You've already been exhorted about the difference O2 can make. Don't blame you for your misgivings about more meds. For those who don't know the brand names, Xyrem is sodium oxybate and Xyway is a low-sodium version of Xyrem. The study that Kprice mentions, on four folks with chronic CH, showed results that were pretty amazing -- 90 percent reduction in attacks for three of them, over an extended period, I think. There was a person here, with chronic CH, whose attacks stopped for quite a few months after taking Xyrem, but then started again. Maybe there's more about sodium oxybate over at clusterheadaches.com.

There is a brief discussion/illustration of hyperventilation beginning at about 7:20 in this video (which is at this CB site): https://clusterbusters.org/resource/oxygen-therapy-for-cluster-headaches/ Batch (now xxx) describes and discusses a hyperventilation process here (no video) -- https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ -- but he is doing it differently. He has 30 seconds of hyperventilation with room air -- ten fast, intense inhale/exhale cycles of about 3 seconds each -- followed by a deep inhalation of O2 that is held for 30 seconds and then forcibly exhaled with a strong "crunch," then followed by another 30 seconds of hyperventilating with room air, then another inhalation of O2, etc. You should read what he says about all that. It begins following the instructions and photos related to the "redneck bag." I found it a little more jumbled than Batch's usual descriptions, but the info is all there.

First of all, it doesn't seem that you have oxygen. That is essential! First priority. Get started on the D3 regimen also, but oxygen is essential. It will stop your attacks and it will reduce your intake of triptans. Too many triptans create big headache problems of their own (medication overuse). Do the bad symptoms you describe always happen with the spray? Ever with the tablet?? It sounds like you're saying that you typically have enough warning (even "several hours") before an attack that you can go through your progression of tablet/spray/injection. Am I reading that right? And are you also saying that you can sometimes/often lay down as you deal with an attack? And I think you are saying that an injection will stop an attack, but not always since sometimes they go on for three hours or more. There are a lot of seemingly unusual situations here. I wonder how much triptan you are taking in (the nasal spray is usually zolmitriptan, not sumatriptan). One thing you can/should do is get less than 6mg with your injections. One way to do that is here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/. Another way is to get a prescription for vials and syringes so you can measure your own doses. For most people, 2mg is enough; practically no one needs more than 3. Many of us here have had physicians brush off symptoms that they don't understand. What you are describing seems serious enough to me that a second opinion seems important. Do you have access to a headache center? They will have seen practically any kind of triptan reaction, I would think, since triptans are prescribed for many "headache" conditions.

Thank you for this, Merle. Dr. Robbins has been a good friend to people with CH. He has spoken at annual ClusterBuster conferences and published some valuable papers. Was there a particular way in which they were helpful to you (a new prescription; some good advice; etc.)?

Good going, kmel' !!!! Just as a small note, I think it's rare for a prescription to specify tank size, so it seems most likely to me that the supplier has decided to give you E tanks. A bigger tank (M or H) is a lot more convenient for you and for the delivery people, at least if your cycle is going to last a while. You might check on what they'll give you. Ideally, an E for portability and one of the bigger ones for at-home use (at least one of each type -- with regulators and at least one mask). What you have might work out just fine, of course. So pleased that you got it doone!

Haven't been through it. I don't think the D3 regimen is likely to have any super-quick effect, but it might shorten your cycle. I don't know about that regimen and pregnancy, but I'll bet someone might. Oxygen seems to me to be by far your best bet if hormonal shifts don't do the job for you. Without a prescription, you can set up a welding O2 system, as a good percentage of people with CH do. That can be done in a couple of days, for maybe $200-$250.

As predicted by Batch/xxx, we are seeing an apparent correlation between attacks and pollen counts, even on a day-to-day basis, but it seems that pollen reports and forecasts can be all over the place, pretty inconsistent from one to the next. Does anyone know what the best website or app is for accurate pollen reporting? (Quercetin and Benadryl have had good effects, but haven't eliminated attacks.) Thanks.

There might be some thoughts in here that you might want to try. This is copied from this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ “Treatments” without O2 or other meds (or as supplements to other treatments) A lot of people arrive here with nothing effective to treat their CH, either because they have crappy doctors or because they just got diagnosed (or self-diagnosed) or because they have come to believe that they have “tried everything” and “nothing works.” That latter might in fact sometimes be the case, but most often we find that (a) they haven’t actually “tried everything” (such as busting, or D3, or other methods), and/or (b) what they did try was prescribed or delivered ineffectively, as I described above. Here are some strategies that help some people abort or prevent attacks (again, I’m not addressing busting here, though of course it must be seriously considered since it’s a highly-effective, low-side-effect method for ending cycles and possibly preventing them). Some people get relief from bodywork (massage, chiropractic, craniosacral, etc.) and some from other “alternative” methods such as acupuncture. Most people don’t. 1. Preventive Batch has observed that allergies (even if they aren’t causing allergy symptoms) can cause or ramp up CH, so he recommends Benadryl at 25mg four times a day, including one at bedtime. Other anti-allergy medicines, such as Claritin, seem to help some people. Most people with CH have learned that alcohol is a trigger. But there are many other triggers that are not so obvious. See this thread: https://clusterbusters.org/forums/topic/4568-triggers/ Drinking lots and lots of water seems to help prevent or lessen attacks. A ketogenic diet seems to help prevent or lessen attacks. Magnesium helps some, taken at 400mg daily, started about a month or so before an anticipated cycle. If taking magnesium for a relatively long time, calcium should be added. It also can help with a typical side effect of verapamil, constipation. A licorice root protocol has been helpful for some. You can read about that here: https://clusterbusters.org/forums/topic/941-licorice-root-summary/ Kudzu root has helped some. Dosages are not clear to me. Caution is recommended with all supplements! Know what you’re doing. Some have said that deeply massaging the “cluster knot” in their neck helps them. 2. Abortive Caffeine/taurine. For some people, caffeine alone can help to stop an attack or lessen the severity of the attack. Some folks keep strong coffee on hand for that purpose. Some folks use caffeine pills, and some people take taurine pills along with caffeine pills. They take those pills at the first hint of an attack, or a couple of hours before a predictable attack time. Many use energy beverages. Because some ingredient in energy beverages in addition to caffeine is believed to help with attacks (believed to be taurine), many people use those. I recommend energy shots (such as 5-Hour Energy) at first sign of an attack. Shots are quick to drink down and they have more caffeine than energy drinks, such as RedBull, that are much larger. Many people say the shots work best for them when they are as cold as possible. For many people, energy shots/drinks don’t keep them up even if they drink them at night. In addition to all the “standard” energy beverages, some people like “V-8+Energy” drinks. “Brain freeze.” You can drink ice water through a straw aimed at the roof of your mouth, with the objective of creating “brain freeze,” or hold something cold, such as frozen juice concentrate, against the roof of your mouth. Some people find that taking melatonin at bedtime helps (not wise to take both melatonin and Benadryl at night.). Melatonin is depleted in people with CH during their cycles. Some people find that it helps to supplement it. You could start with about 10mg, and go up or down as appropriate. Some people get into the high 20mgs, or even low 30s, before they reach a level that helps. Needless to say, you have to find what works without making you dysfunctionally groggy. Several people have reported that DMT is an excellent abortive for them. You can read more about that here: https://clusterbusters.org/forums/topic/7444-dmt-first-time-finding-an-effective-abortive/ Feet in very hot bathtub. There’s a theory that this moves blood from your head to other parts of your body. Some people find that putting their hands in very hot water also has an effect on attacks. People have reported that going from feet in a hot bathtub to a cool room and back to the hot bathtub helps the effect. Some people don’t just stand in a very hot bath but will sit or lay in the hot water. Ice packs help some people. Cold air. One study showed that inhaling cold air was nearly as effective as using oxygen. Air conditioning vents in the home or the car are good for this. If it’s cold outside where you are, you could try that. Vigorous exercise. Some people find that vigorous exercise (running; doing jumping jacks, etc.) will stop or slow down a CH attack. Lime/baking soda. One fellow said that this helped his attacks: the juice of a lime or two along with a teaspoon of baking soda in a cup of filtered (non-tap) water. Sex. Some people have reported that sex stops their attacks. Other people have been amazed that it’s even possible to consider sex during an attack.

Cyndi, I'm confused -- Do you have cluster headaches? Glad you got all that amazing relief, but . . . do you have cluster headaches?????

@Icantdance So sorry to hear this, and the way CH has affected you and your life. What an accomplishment that you kept working at a job that I am sure is very demanding and even stressful for so long (probably you were in other education jobs before your current one -- they're all demanding and stressful, from what I've seen)!! May busting and/or D3 be an answer for you, as they have been for so many. (You don't have to answer this. I'm just wondering whether any of your doctors ever tried octreotide, which is described in several places as a useful possible abortive for folks who don't tolerate triptans. Not as good as triptans, but seemingly more effective than nothing to help abort attacks. I have no idea whether octreotide would block busting. It's a completely different thing from triptans.) I hope you'll stay here and get help from the folks with experience. I would like to suggest that you start a new thread in the "Theory and Implementation" section, since we generally refrain from posting about busting in this part of the board.

@Icantdance Rivea corymbosa seeds. Work fine. Legal to buy and possess in many places (e.g., most US states). Unlawful to prepare (by soaking in water) or consume. Not gonna show up in standard tests. Get started for more info by clicking on the blue "NEW USERS" banner at the top of every page. (Are you saying that neither oxygen nor triptans such as Imitrex or a nasal spray have ever worked for you??? That is extremely rare.)

I can't really comment on prices. I would check around for sure. I do see that there's a 125 cu ft cylinder at Home Depot for about $40 more than the 80 cu ft one (unfilled, in both cases, I'm pretty sure). But I am imagining that at an oxygen supplier (Airgas, Linde, Apria) it might be less because you aren't actually buying the tank. For me (an old guy) 80 cu ft is about the maximum manageable size. I think Denny (a younger old guy) lugs a 125-cu-ft one around. 80 cu ft is about 2200 liters, so if you used the whole tank you'd get about 110 minutes at 20 lpm. Many of us have found that for some reason O2 is less effective as the oxygen in the tank goes down (or you have to increase the lpm for it to be effective), so maybe figure on about 90 minutes at 20 lpmish. 125 cu ft is about 3500 liters; 175 minutes at 20 lpm or maybe 155ish with the fudge factor. Can one actually get tanks filled/refilled at Home Depot??? At Harbor Freight, one can buy a tank, but they don't have the capacity to fill them. I would think you might want to also get a 40 cu ft tank if you want something for portability (car, work...), and/or as a backup in case your bigger one runs low at an inopportune time. I think this reg would work fine: https://www.amazon.com/IMAGE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_1_sspa?crid=3DE3OCLZW6EQ9&dchild=1&keywords=oxygen+regulator+welding&qid=1634942540&sprefix=oxygen+regulator%2Caps%2C187&sr=8-1-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUE1MVFCNEdQNFlJNzImZW5jcnlwdGVkSWQ9QTA0MjY2MDUxUjZPWjBPUDZWSDlCJmVuY3J5cHRlZEFkSWQ9QTAxMDM1MzRDWlpXV0ZOWEYxNDcmd2lkZ2V0TmFtZT1zcF9hdGYmYWN0aW9uPWNsaWNrUmVkaXJlY3QmZG9Ob3RMb2dDbGljaz10cnVl My concern about the Harbor Freight one is that I can't see whether it has the optional barbed fitting that this one has, which is really good for attaching your mask tubing. Much of this blabbing is also in the file I linked to above.

Some of this might be useful -- though you seem to know what you're doing and you're getting advice from the pros! https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

Crazy. There has been (as you mention) a lot of Covid-related rationing. You should probably look into welding O2, no? Could be that those prices haven't increased (or increased as much).

I would guess that 40 is plenty -- but wiser folks will give you a more definitive answer. (I could see the 40 at the Allied Healthcare site but not the 160.) Will you do us/me the favor of letting us know how your purchase goes? Do you have a DV prescription, or are you buying it without one?

Shaun', if you type Gamma into the search box at the top of any page, you'll see some reported results. As I recall, a couple of people reported having success with it. In the US, it is very expensive, $600 or so every month. Maybe with your NHS it's not so steep. (As I recall, it was far less effective, or plain ineffective, for people with chronic CH. I have also never understood what the appeal would be except for (1) people for whom oxygen doesn't work, since the abort time in the trials was longer than what most/many people can get with an optimized O2 system; and (2) for its portability, which is not an insignificant benefit if it works and the cost isn't prohibitive.) I guess some people have been told that regular use has preventive benefits, and not just abortive. I don't remember if we found out how that worked out.

Has anyone been able to deliberately change the times that their attacks occur during a cycle? For example, if they're coming regularly at 3:00am, if you're able to change your sleep/wake cycle (or something else), might they start coming at a different time?

1. I don't see this mentioned as I glance through the advice you've received (it is mentioned in the long file I linked you to, but you might not have reached it). It will benefit him greatly not to take a full shot of Imitrex (if it's a 6mg injector). This shows how to split those doses: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ 2. I think it's fair to say that the only way for him to reduce the anxiety is to get the CH under control. And even then, there are lots of people who are very anxious during a cycle -- and even when they're not having headaches (particularly as the predicted time for a cycle to start is coming closer). They don't call CH "the Beast" for no reason: It's terrifying, ferocious, and unpredictable, and I don't think anyone ever forgets how hellish an attack can be, even when they have them more under control. First, a functional note: He should take the calcium part of the D3 regimen about 8 hours from when he takes the verapamil. Can you tell us what the verap prescription is -- dosage and whether it's extended release (ER) or immediate release? One thing that sometimes happens is that people with CH start some kind of treatment that they are told will help them, and then it doesn't help. That not only adds to the anxiety, it can also make them resistant to trying other things because they can't stand getting their hopes up and then being disappointed. I am generalizing here -- people are people -- but with his current anxiety and resistance, these might be issues. The verap is not going to help right away, and neither is the D3 (probably not going to help right away -- you never know). Usually verap is prescribed at a low dosage to make sure it doesn't have side effects, and the dosage is slowly increased. The D3 only takes full effect when there's enough of it in the system, though I think it has been shown that some benefits can happen pretty soon. So, a caution about anyone having unrealistic expectations about a quick fix. When the D3 regimen was first introduced, there was a whole lot of scoffing about it. But over time, it has shown itself to be very, very effective for a very large percentage of those who do it right. That's the basket I think you can safely put the eggs in -- if he sticks with it. If he has issues with it, or if he wants to reach out to someone, the popularizer of the D3 regimen, Batch (whose handle here is xxx), is amazingly generous with his time. Send him a PM and he will respond. He has helped a lot of people to do some tweaks that have shifted things for them.

I think a demand valve would have to be specified in the prescription. Usually (at least in the US) doctors don't include that. If it is included in yours, then I have no idea why you are getting resistance in Israel, though I can imagine that an overseas prescription might not be honored in the US. For that eBay one, you don't need a prescription. I should say again that I might be wrong about needing a prescription in the US (or anywhere). I am confused as heck about that. If you look under "demand valve" in the search bar at the top right of each page, you might find more information that will be helpful to you.

In general, a prescription is needed to get a demand valve in the US. People here have said they have found ways around that requirement, but I don't know how. Many get them from eBay, where questions are not asked. I have no idea about possible shipping issues, but this one -- not the specific one you are asking about -- is available. Looks like it doesn't come with a hose, and maybe you have to press that blue button to release the O2. Just a thought. https://www.ebay.com/itm/192499863285?hash=item2cd1e2cef5:g:RhwAAOSwTDpcABu~

What a great job you are doing, Kimbers!! And now, with so many members of the ClusterBusters all-star team joining you as they have (and maybe more to come!), and what seems like a very solid medical team (although I'm puzzled about why verap wasn't started at the same time as the pred), your husband is getting plenty of support. I have little bits and pieces of possible additional info, but it's all in this file, so I'll let you look through it: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ (I feel pretty sure that this is already clear to you, but just in case, the blue underlined things in Jeebs's posts are links to files, so just click on them. (I missed it the first couple of times, but then, I'm 100 years old.)) (Getting on O2 early in an attack is essential . . . and it is also true that sometimes first uses of O2 are not very effective for people with CH, but they become more effective quickly. In part, this seems to be some kind of natural phenomenon that affects some people more than others, and in part it's a matter of developing the most effective personalized breathing strategy and related practices, such as the caffeine/energy shots that have been mentioned.) As a supporter myself, I know what hell it can be to see someone you love suffering so severely. He's blessed to have you, and as others have said, the suffering is going to be very dramatically reduced by doing the core things he is already doing or starting to do, and perhaps adding some others, such as busting.

There once was a recommended doctor list, including Canada. It was pretty old, but I thought better than nothing. Does anyone know if it's gone now? Needless to say, I hope you get some good, direct advice here. You might also try some of the Facebook groups devoted to CH, just to expand the possibilities. One that was founded by some former members here is called "Cluster headaches (trigeminal autonomic cephalalgia)," but there are more (I've heard some harsh things about the advice offered at some of the other ones, but you're just looking for doctor). It's very nice that you got relief from a concentrator and 7 lpm, but a capable doctor should be prescribing O2 from tanks at at least 15 lpm, with a non-rebreather mask. Your results are almost certain to be better with a configuration like that. Do you know about using welding oxygen? You can get it without a prescription (I think this is also true in Canada). I think I remember that some time back, someone (@Dallas Denny ??) posted something about welding O2 in Canada, but I can't find it from a somewhat superficial search. Toward the end of this post there's a section called "Treatments without O2..." Maybe something there might help you in the short run. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

FWIW, two relatively recent posters from somewhat nearby countries have been Milelli from Germany and Siegfried from Belgium. Siegfried actually has a hemicrania, not CH, but he has done a lot of CH investigation. Denny, is the Facebook group more international? As I remember, there is (or recently was) an LSD study in Basel. I don't remember whether it was specifically for CH, or perhaps for something else, like anxiety. (If there was a selection here to rate this post as "almost completely unhelpful despite good intentions," it could get overwhelming support, I think.)