CHfather

Injectable triptans. Split them 3/1, or at least 2/1: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ D3. Start ASAP. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Energy shots. Drink one at first sign of an attack. 5-Hour Energy is a place to start (easy to chug, lots of caffeine). Check your triggers: https://clusterbusters.org/forums/topic/4568-triggers/ Benadryl. A lot of folks find that their CH ramps up in high pollen seasons, or from other allergies. "Batch" (one of the great experts) recommends standard dosing of 25mg 3/day and 50mg at night. That'll make you drowsy, but it might help your CH. Mushrooms and other substances: Read the numbered files in the ClusterBuster Files section Big compendium: Read Bob's Big Pocket Guide in the ClusterBuster Files section Your currents meds. What, specifically, are you taking, and how much? Oxygen. You could set up a system using welding O2 in a few days. ~15-20% of people with CH use it. You can't imagine the difference that O2 will make for you.

According to this long-term evaluation of ten patients, effective for chronic CH. CONCLUSION: High volume suboccipital nerve blocks from this open label study appears to be effective in the preventive treatment of medicinal refractory CCH and shows consistent response over long-term use with high rates of pain freedom. For some reason, the system won't let me paste the whole summary. Here's a link to it: https://www.docguide.com/high-volume-anesthetic-suboccipital-nerve-blocks-treatment-refractory-chronic-cluster-headache-long-?tsid=5

Mum', I think you're going to find that part of that frustrating "everyone is different" thing about CH is that there are many ways in which cycles develop and end, and they don't always stay the same for individuals from one cycle to the next. I would guess that the most common pattern is ramping up pretty bad in the days before they fade away. For sure, it would not be unusual for the D3 to now be having an effect on his attacks. I have questions, one of which is more appropriate for a closed board such as "Share Your Busting Stories." Does he still not have access to oxygen when he gets his attacks? Is he doing anything to abort his attacks? Is he doing anything besides D3 as a preventive? And (the closed board one) is he busting now? All of those things are going to affect the pattern of his attacks, and maybe the duration of his cycle.

Ratio of women to men diagnosed with CH has dropped from 6:1 to 2:1, and I at least am completely willing to believe that that's just diagnostic error based on the assumption that women don't get CH. Nighttime attacks are not necessary for CH diagnosis.

You might know that CH was once called (and still is, I guess) "histamine headache." You don't need this now, but many people find that quickly drinking an energy shot such as 5-Hour-Energy at the start of an attack can help quite a bit. There's a lot of caffeine in those things (= couple of cups of coffee), and many believe that other ingredients in energy shots (taurine, maybe niacin, maybe B vitamins) also help.

I'm not sure what the info I referred you to on the D3 regimen says about allergies, but the developer of the D3 regimen recommends Benadryl 4/day (25 mg three times and 50 mg at night), because he has noticed a strong correlation between high-pollen seasons (ands allergies in general) and CH. CH is a very harsh thing to have, and your fears about another cycle are justified. However, if you have CH, you had none of the treatments that make it manageable for most people. D3, a preventive (usually verapamil), an abortive (oxygen and injectable sumatriptan), awareness of triggers, use of melatonin, caffeine in some form, and some other tricks -- those all help, and you had none of them. A course of corticosteroids can sometimes help, too. And the new medication, erenumab (Aimovig), is showing a lot of promise as an effective preventive. None of this will fully alleviate your fear (there have been people here with chronic CH who have said they preferred it because they didn't live in dread any longer about when their next cycle might come), but also your fear shouldn't be disproportionate to the treatment possibilities. And I haven't mentioned "busting," which is the reason this site exists and which has made a huge difference for many. Read about busting in the numbered files in the ClusterBuster Files section, and also look through that section for other potentially helpful information ("Bob's Big Pocket Guide" is very thorough).

Sure sounds like CH. There's nor real point in me talking about how stupid the medical advice you have received is -- you already know that. Nobody talks about "vascular migraine" anymore -- CH is just as "vascular" as migraine; it seems unlikely that you overexert yourself at roughly 3:00 every day . . . . and some day maybe we will know why so many doctors are so incredibly, tragically (for the patients) lost when it comes to O2. I would only urge you not to take an "if it does return" stance and assume that it will. Since headache centers often have long wait times for appointments, I would seriously consider setting up an appointment now. And it is probably very advisable to start the D3 regimen now: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

simple', I really got nothing valuable for you, but . . . Regarding #1, here is a passage from a fairly large study of CH patients in 2011. It answers the "does anyone" part of your question, but it's pretty fuzzy overall: A total of 21% of survey responders noted an aura history before a cluster headache attack. Survey responders were asked if they ever experienced any symptoms including aura prior to cluster headache onset. Auras could be visual, sensory, language/speech, and brainstem (dizziness and vertigo). Aura duration was less than 5 minutes in 25%, 5-10 minutes in 30%, 11-15 minutes in 17%, 16-20 minutes in 10%, 21-25 minutes in 10%, and 25 minutes or more in 8% of patients. Almost all auras with cluster headache lasted less than 25 minutes (92%), and 55% of patients with cluster headache had auras that lasted 10 minutes or less. #2. I haven't heard of this, and I'd say it's surely not common, but maybe someone has it as a symptom. #3. Yes, some people have warning signs that their cycles are beginning, but again -- from what I have read -- fatigue and dizziness aren't common onset signals. #4. There are a lot of CH-like symptoms in there (beer as a trigger, rocking and moaning, thinking it's a teeth issue), but others not so familiar to me. You don't say much that relates to the basic diagnostic things: timing of attacks, length of attacks, attacks/day, location(s) of pain, physical manifestations in eyes/nose. I assume you have looked up the symptoms or indicators and know what they are. Triptans in pill form virtually never work for CH; nasal spray sometimes works; injections almost always work (although there's nothing diagnostically useful about that since triptan injections work for a lot of types of "headaches"). You don't mention oxygen, which when set up and used effectively aborts attacks for a very large percentage of people with CH. That might be a next step with both therapeutic and diagnostic potential, since O2 is generally not effective for other headache types.

Thank you, cheeky'. It could be the dental extraction was a cause . . . We thought that about my daughter's situation, in which she began having CH attacks after a difficult extraction.* However, it's just as likely that attacks after dental work are caused by the anesthetic that is typically used, xylocaine, which contains epinephrine. I realize that the structural effects of an extraction seem more likely to be lasting than the system effects of an anesthetic. So, like I say, you could well be right about that. *She had had bad "headaches" before, but they hadn't reached CH-terrible levels. Hadn't even seen a doctor about them. After that, they were bad. Glad you have it (relatively) under control. If your sumatriptan is injectable, you might consider this advice for splitting injections so you use less but still get fully effective aborts: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ And you might also consider the vitamin D3 regimen that has helped many: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Mum', I'm a little confused here. The comments from FunTimes and HazBaz relate to treating "shadows," which might be what you are describing. But slapbacks (in your subject line) are forms of CH attacks (which you say these might not be). The advice you have related to treating shadows is right on, but those things won't help with an actual slapback. If your question is whether it's okay with regard to busting to take Tylenol or Advil, the answer is that they won't interfere with busting. I know this is late -- I hope he's feeling better!!!!

gail', the box below the most recent post should say "Reply to this topic" in it. Just click in the box and you will be replying. Click on the link at the end of this sentence to get the ClusterO2 Kit: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit The Theory and Implementation board is accessed from the Home page. You will see the word "Home" at the top left of every page, just under the menu items that begin with Forums. You can only see and access the Theory and Implementation board if you are signed in as a member, because that board is only open to members. Notice also that each time you create a post, you will see at the bottom of the page something that says "Notify me of replies." Since you are posting in many places, that might be helpful for you. Your best bet is to start a new topic at either Share Your Busting Stories or Theory and Implementation (I think FunTimes mentioned how to do this) and then your primary conversations can be kept in the same "thread" and will be easier for you to find.

I'd be a little surprised if anyone here has an answer to your DALT shelf life question. Not a lot of DALT users here. I'd suggest that you might get a quicker answer by sending a private message to dlnmerced, who is a member here but hasn't posted much lately. If you click on the envelope icon, and start typing dln in the "To" box, I think it will autofill with the rest. Alternatively, the Facebook group where DALT was most strongly popularized will probably have a fast and reliable answer for you. (It's a closed group, so if you're not a member you'll have to ask and then wait to be accepted. I think that's a fairly quick process.) The group is called "Cluster headaches (trigeminal autonomic cephalagia)" Hopefully I'm wrong and someone here can answer you.

We've had some discussions here in the past few days about what size industrial O2 tanks to get. You'll probably want at least two -- the largest one you can handle for home use, and a smaller one, maybe 60 cu ft or even 40 cu ft, for portability. spiny recommends 90 cu ft for the home one and 60 for the portable one, and Dallas Denny has had his home tank much bigger than that. As I say, the bigger you can handle the better, since it'll keep you from having to lug it back to get it refilled. Same is true for the portable one, but in a lower range. Ideally, you'd want a regulator and a mask for each. You can roughly figure out how long a tank will last by converting cu ft to liters and dividing by a number, which I'll call 20 here, which would be the flow rate you'd be using (of course, industrial O2 regulators don't have flow rate settings as medical regulators do, so you'd just be guessing, but an effective flow rate (the rate that makes sure the bag is full each time you're ready to inhale) is typically between 15 and 25. YMMV, of course.) So, a 60 cu ft tank is about 1700 liters (you can get this info by typing into google [60 cu ft = liters]). Divided by 20 liters per minute, that means you'd get roughly 85 minutes of use from it. (I will note here again that I and some others have observed that O2 treatment for CH seems to become less effective as the tank pressure (the amount left in the tank) goes down; but I'm not sure that everyone would agree with that. The last third of the tank is almost useless for my daughter (she's the one who has CH).) Note also that standard industrial regulators do not have the barbed fitting that a mask is most easily attached to. You can kluge that, or you can buy a plastic adapter for a few bucks at many hardware stores or online, or you look for a regulator that comes with an adapter with the barbed fitting. A regulator you buy at an industrial supply store will probably be considerably more expensive than one you buy online, and it might not have that barbed thingie.

Good for you for working on this, but I suspect this particular thing that you have posted won't work. Any chance you can post a link to the ad? I could be wrong about all this, and someone more knowledgeable will correct me. If they're medical bottles/cylinders, you still can't get them filled without a prescription. If they're welding ones, you might or might not be able to get them filled, depending on the policies of your local welding O2 supplier(s). They might be SCUBA "oxygen" tanks, which I'm pretty certain won't work at all, for a variety of reasons. I can only guess that they're empty and quite small, at that price. You'll need both a regulator and a mask. The best mask is here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit A standard non-rebreather mask, which will be around $5 at amazon, will work, but not as well. When you get to buying a regulator, we can recommend some.

rowdy', This is the only part of your question that I know anything about. If you have the regulator for larger tanks (a CGA 540 regulator), it will fit on any industrial (welding) oxygen tank, and of course your mask will still connect fine to your regulator. Smaller medical tanks use a regulator (CGA 870) that won't fit on any industrial tank. I don't know how to insert images here, so this is a link to what a CGA 540 medical oxygen regulator looks like: https://www.amazon.com/CGA-540-Style-Oxygen-Regulator/dp/B006GERK0M in contrast to the CGA 870: https://www.amazon.com/Medline-HCS8715M-Oxygen-Regulator-Connection/dp/B00KG8DNKU/ref=sr_1_fkmr0_3?s=industrial&ie=UTF8&qid=1535422718&sr=1-3-fkmr0&keywords=cga+860+oxygen+regulator

No problem and no real disagreement, spiny. But people getting welding O2 for the first time don't really have a chance to see how heavy/unwieldy it is for them before they buy tanks, so I think it might be a good idea to go on the lighter side at first. They can always be swapped for a bigger tank next time. I also think a lot depends on how you're going to store and transport them. If they're practically always on a cart, weight is only an issue when putting them into a vehicle and taking them out when getting new ones. I would not much like to get a 90 out of the trunk of a car by myself. "We" (since it's my daughter who has CH, as you know but maybe not everyone reading this knows) now have a pretty good collection of 60s and 40s that do the job.

I like this video, where the instruction begins around 6 minutes in. He uses only the breathing tube from the O2ptimask (now called the "ClusterO2 kit"). https://www.youtube.com/watch?v=eX76JrEvNxE Here's another one, using the mask, where the instruction begins at about 8 minutes 15 seconds in. https://www.youtube.com/watch?v=HrcB-ysGt1s&t=8s Once you have the basics, it's quite straightforward and you'll develop your own best technique. There's plenty of talk about mushrooms here, but it's at the boards that are not open to visitors, such as Share Your Busting Stories and Theory and Implementation. Plus there's a lot of written information in the ClusterBuster Files section, in the numbered files. PM is "private message" (or "personal message," I guess). If you click on someone's name at the top left of his/her post, you can "message" that person separately from posting at the board. (There are other ways to message people, but that's the simplest.) What pharma drugs have you tried? I feel like I remember a post from you where you said you thought verapamil was helping. If injectable sumatriptan (Imitrex) didn't help, I'd start wondering whether it's CH that you have (there are some CH "lookalikes" that don't always respond to triptans, but CH almost always does).

Chuck, it sounds like CH pain, for sure, and the timing is CH-like. I don't think we've seen anyone here say that they have discovered a link between marijuana smoking and CH (and there are more than a few here who use it), but CH experiences are so different that it can't be dismissed. CBD oil, interesting, has been an effective abortive or preventive for many people. In the short run, if you're still getting attacks you could try quickly drinking an energy shot such as 5-Hour Energy at the first sign of an attack. Often that reduces the severity of an attack or at least reduces its severity. Read as much as you can in these pages for other ideas. And of course try to get to a headache center, where you're most likely to find a doctor who can give you a good diagnosis and possibly good prescriptions. Most general practice doctors and even most general neurologists are bad at diagnosing and treating CH. Consider the D3 regimen, which probably will help. Read about it in the ClusterBuster Files section, and look through some of the other files there, too.

Gail, I just posted the following elsewhere here at this board. We have been encouraged to make the disclaimer that using welding O2 is not medically recommended. It's amazing to me that you could abort with a can of Boost. That's great news. >>>Welding O2. The ideal mask is this one: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit You can get a standard non-rebreather mask from amazon. You can also get a regulator there. Recommending a specific regulator used to be simpler, because Harbor Freight had a perfect one that was inexpensive. You want one that has an adapter for a barbed fitting that will hold your mask hose most easily and effectively. CGA 540 is the type that fits all welding O2 tanks. This one at amazon looks like it would work: https://www.amazon.com/IMAGE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_1?ie=UTF8&qid=1535222274&sr=8-1&keywords=cga+540+regulator And this one: https://www.amazon.com/Yaetek-Regulator-Cutting-0-200PSI-0-4000PSI/dp/B073P1C18S/ref=sr_1_11?ie=UTF8&qid=1535222716&sr=8-11&keywords=cga+540+regulator I just can't say for sure. A welding supply place will sell you a regulator, but they're typically expensive and don't have the barbed fitting (you can buy an adapter with that fitting at many hardware stores for a few bucks). You probably know your way around a welding business a little! You just buy a tank, or a couple of tanks, and do not mention that they're for medical use. 60 cu ft seems like a pretty good size, particularly if you get a couple of them. The bigger the better, of course, but since you have to bring them in to be "refilled" (replaced, actually, usually) you might not want to be wrangling anything much bigger than a couple of 60s. Maybe you'd also want a 40 cu ft for greater portability (car, etc.). You probably also want a cart, too.<<<< More to you, Gail. If you don't feel comfortable with the buying process because you don't know what questions you might be asked, it seems to a lot of people make up some cover story in case they're asked, like their nephew is coming to town and going to do some welding and asked you to pick up these tanks for him. You don't know nothin' beyond that. I believe you have said that you are nearly as old as me, maybe even a year or two older, so just a warning that it could be that tanks more than 40 cu ft will be kind of heavy to schlepp around. A 40 cu ft tank is about 1100 liters, so at 20 lpm that would be about 55 minutes' worth, and about 75 minutes at 15lpm. You might not need a flow rate that high if the Boost helped you, or you might not need much to abort, but obviously you're not going to get more than at most maybe 6 or 7 aborts/tank, and possibly fewer (particularly since my anecdotal experience, and that of some others, is that for some reason the O2 becomes less effective as more O2 has been used).

Zembrace is 3mg. You can split a 6mg autoinjector and probably get by with 2mg, but the hassle might not be worth it. I think Zembrace is "off label" for CH, and is technically only for migraines, but it's definitely plenty to do the job for people with CH.

'Leah, [Started this before Jon's post . . . Nothing to add, really, but a couple of thoughts.] For some people, the nasal spray is fully effective, so it makes sense to have tried it first. (And in fact there is some evidence that it is less likely to cause rebounds than the injections (I confess to not being a 100% believer that judiciously used injections cause rebounds, but it's probably safer to accept that they do and try to avoid them). At this point, can you contact your doc to say the nasal isn't working and ask for injections? (If you get that, note that you can take apart the autoinjector and self-administer much smaller doses, which will make the effects much more tolerable and save $): https://clusterbusters.org/forums/topic/2446-extending-imitrex/). You can use welding O2 to set up an O2 system if you need to. At least 15% of people with CH do it that way (my guess).

I have wondered whether the "oxygen suddenly stops working" occasions happened because tanks were too low. I might have even posted that at one point -- but it started working again with full(er) tanks. I think it's extremely rare for O2 not to work under other circumstances.

Well, that's about 80 minutes, so if you were running at 25 lpm it does work out to 2000 liters. But if less than 25 lpm, something's not right. A US "H" tank has more than 7000 liters. Not particularly important -- what you have is what you have -- except for planning purposes. Maybe you saw what I wrote above, that at least for some people, when a tank gets relatively low, the effectiveness of O2 seems to decrease. There's a fellow who has developed what I understand to be a pretty sophisticated tracking app. He posted about it here a couple of times, and he has a fairly active Facebook group called "Cluster headache -- patient driven research." That's why this group was formed. Your best bet is to post about that on a closed board, such as "Share Your Busting Stories."

Yeah, M-60 has almost exactly two and half times as much O2. Something my daughter has found (she uses welding O2) is that O2 loses its effectiveness when her tanks are about 2/3 empty. Someone else here said that was also true for them. IF that's true for E tanks, then the actual usable O2 is even less than what I said above.

An e tank holds roughly 660 liters. At 15 liters per minute, you're going to get 44 minutes from it.