CHfather

I think spiny is right that there's no harm in trying indomethacin, mostly because the ineffectiveness of oxygen at least suggests that it could be something other than CH. Like CH, hemicranias are tricky -- sometimes they respond to CH meds such as triptans, and other times they don't.

Have the people who deliver your O2 set it up for you and, if they know, show you how to use it. (They probably are just delivery people who won't know how to use it, but do have them set it up, so you can be sure it's working properly.) You might want to call them and check on what they intend to bring you. Most medical oxygen suppliers have very little experience with CH patients, and the prescription is often very general and vague. You should get at least one large tank (an M or H tank), about 3' tall, and at least one smaller tank (an E tank), around 2' tall. The smaller one is for portability -- taking it in your car, for example. The taller tank uses a different regulator than the smaller one. The regulator(s) should be at least 15lpm -- you could ask whether they have a 25lpm one. And you should be getting at least one non-rebreather mask. (Prescriptions do typically specify lpm and mask type.) You do not want a concentrator -- a machine that makes O2 out of room air, and you do not want nasal cannula. Often, they'll bring just one or two E tanks, each of which lasts less than 45 minutes. It will be easier for them if they bring you at least one M or H tank, so they don't have to keep coming back to resupply you. And you might see whether they're planning to bring you a stand for the tanks, or at least for the big one. Some of this stuff will of course add to your bill or co-pay. Since maybe your cycle is passing, you might want to just get the basics now so you're not paying for things you don't need right now.

Recommended doc list: https://clusterbusters.org/cluster-resources/

So, I'm doing some guessing here. Zembrace seems to be 3mg of sumatriptan in an autoinjector. The typically prescribed injection med for CH is Imitrex, which is also sumatriptan but comes in a 6mg injector. Then people often take apart the injector and give themselves either 2mg or 3mg injections. So I'm saying that one way to look at it is whether Imitrex would be cheaper for you if you got the injectors and then took them apart. I looked at www.goodrx.com, which is a discount program for pharmaceuticals, and the prices there for Zembrace seem astronomical. It's not like Imitrex is inexpensive . . . You can also have vials of sumatriptan and syringes prescribed and create your own doses. Again, I'm sorry that I just don't know what the cost of that would be. I would say that you could discuss these options with a pharmacist who could probably help you figure out what might be best. Finally, at zembrace.com there's some kind of discount card, but I couldn't make sense of what the deal is. With all that said . . . You really want to be aborting attacks as much as possible with something other than triptans (there's research and experience saying that triptans extend cycles and create rebound attacks). In particular, you want oxygen. You really, really want to have oxygen. And most folks here would strongly recommend that you try the vitamin D3 regimen that is described in the ClusterBuster Files section of this board. Finally, 480mg of verapamil can be a relatively low dose for people who are in cycle. Up to 960mg is acceptable according to the medical experts.

Regarding the trex injections, yes they are typically 6mg (although there is a 4mg version). Info on breaking into the autoinjector is in the file "Extending Imitrex," which is on p1 or p2 of the ClusterBuster Files.

Ginger tea or authentic ginger candy are known to help some people with shadows. Best way to make the tea, in my opinion, is to boil some cut-up pieces of ginger, though some use powdered ginger (which you have to keep stirring to mix well). The recommended kind of candy (available at amazon) is made by The Ginger People. Ginger beer/ginger ale, too: Reed’s Extra Ginger Brew, Ginger People’s Ginger Beer, Natural Brew Outrageous Ginger Ale or Blenheim 1903 Hot Ginger Ale. Next I'm into "I think" territory, but I think energy shots, such as 5-Hour Energy, help some people with shadows, and I think oxygen is very helpful for some people, too. You might look at Bejeeber's post near the end of this thread, and possibly Cenzo's at the top of the thread, for an additional idea or two. https://clusterbusters.org/forums/topic/4968-newbie-ch-relief-with-your-thumb/#comment-51941 Another poster (urs) has said white tea got rid of his shadows. He said this about white tea: >>white tea differs from all the others. the same leaves are sun dried but NOT fermented or even further processed<<

Alex, I don't think there's been much progress on pharmaceutical preventives. The in-cycle standard for verap can be twice what you're now taking (960). You should check out the vitamin D3 regimen in the ClusterBuster Files section here as an excellent potential long-term preventive or at least reducer of hits and severity. If you used oxygen as an abortive 13 years ago and it didn't help, please note that we have learned that higher flows and the mask specifically designed for CH (and some other strategies) make O2 effective for practically everyone who who uses it these days. A bunch of other smaller tactics that help have been identified, mostly by the "citizen scientists" at sites like this. Quickly drinking an energy shot at the first sign of an attack; taking melatonin at night, starting at about 9mg and working up; taking Benadryl (recommended dose) morning and night during high pollen seasons (not Benadryl and melatonin, though) . . . High pollen seems to exacerbate CH. And of course, there are many here who will tell you from experience that busting is the best preventive/cycle-ender.

Would love to hear next that you are trying something that is helping you (or that you're considering something and have some questions). That's what we're here for.

No oxygen??? (You don't want to use meds, that's your business. But oxygen is so benign and effective.) Have you tried the D3 regimen (in the ClusterBuster Files section)? Please let us know how your taper goes. Good luck.

There are people with CH who have obtained SSDI disability. For most, it was a multi-appeal, multi-year process, but I gather that some got it pretty quickly. No kind of headache is specifically covered by the SSDI guidelines. The Budget Director of the Trump administration said just within the last few days that he'd like to see more people thrown off disability (the ones that "don't deserve it," of course). You can get the basics here: https://www.ssa.gov/disabilityssi/ Lawyers who handle disability cases can't charge you, except for basic things like copying, unless you win your case. In previous discussions of this here, some people have said handling your case yourself is the only way to go, and others have said they were glad they had a lawyer. I remember one or two saying they were glad they had an experienced local lawyer who knew the judges who rule on these cases. There are many big law firms that do mostly disability cases. Since it's free to ask, you might consider calling some to see what they advise you. I have figured that because of the payment situation, they might not want to take a case they don't feel confident of winning.

I feel no hostility at all toward you, not one drop. I am trying to be helpful, and you do seem to be deflecting that, which is now making me a bit frustrated. I assumed that before telling me to google "vitamin d3 regimen injections" you would have made sure of that, but in fact that search discovers not one single reference. I'm not saying you didn't have D3 injections; I'm not even saying that you didn't do the actual D3 regimen or some version of it. I have no idea. But all you have to do is look at the file that I've referred you to. If it really is the same as what you've done, then clearly I'm wasting your time. If it isn't, you might consider it. You came here interested in busting (treating attacks with psychedelics). I've told you where to find references at this board to busting, and suggested that you get back to us after you've looked them over. That's still my suggestion. Because of the background conditions that Jeebs and I have mentioned, I'm not going to tell you to just go for it, and I'm not going to try to stop you.

I'm surprised that more people here aren't a little crabby, given what they live with. I wish you had a solid, reliable diagnosis. I'm only saying that some things that are at the top of the list for CH, such as inhaled oxygen, don't work for migraine, and even for the more common condition, migraine, lots of neurologists do lots of weird prescribing and people never try the core preventives and abortives. As I have said, pretty much everything you need to know about treating "headache" conditions with psychedelics is in the numbered files in the ClusterBuster Files section. Many people have found that that treatment also helps migraines. If you decide to try that method, given the cautions that have been suggested, you might get some further advice here. And I'll say again that the D3 regimen, which has the additional advantage of being legal, has been very helpful for people with chronic "headache" conditions. (I put "headaches" in quotes because these horrible things that you are suffering and the people here suffer ain't "headaches" in any real sense.)

Junco, I was really specific, carefully so, that I wasn't criticizing you. In part, my observation (as I said) had to do with misdiagnosis, because we have had some people come here with cluster headache diagnosis for whom "nothing worked," because they were being treated for the wrong condition; typically, they had some form of hemicrania, but on other occasions it was other things. Beyond that, yes, I was suggesting that after six years of reading about cluster headache treatments, I have found that there are pharmaceutical and also non-pharmaceutical treatments that have not been tried by people who believe they have "tried everything." How much of that applies to migraine, I can't really tell you, because this is a cluster headache site, and that's what I know about, except from the relatively small number of people who discuss migraines here. And how much might apply to you, I of course have no idea. Melatonin, magnesium, octreotide, certain antidepressants, licorice root, kudzu root, pasireotide, lithium, topamax, gabapentin, low histamine diet, masturbation, sometimes indomethacin. on and on . . . all things that have helped some people some of the time with cluster headaches. I have to keep emphasizing cluster headaches. Heck, some proportion of the people who come here thinking they have "tried everything" haven't had effective oxygen, which is the #1 medically recommended abortive for CH. The vitamin D3 regimen, which as I said you can actually read about in the ClusterBuster Files section, is not "vitamin injections."

There but for the grace of God go many. Congratulations for staying so strong. How you treat yourself with these substances is described in detail in the ClusterBuster Files section of this board, in the numbered files. Some of the specifics are a little outdated, but the relevant information is all there. How do you get them? Well, some people grow their own, some people find sources, and some people use seeds, such as rivea corymbosa seeds, that are legal to purchase and possess in most US states. Some other products have been created from basic ingredients that are legal. A substance called 5-MeO-DALT used to be legally purchaseable -- I don't know what the status of that is. There are plenty of people here who have used those substances to treat cluster headache and in some cases migraine. Since this board was founded to address using these substances to treat CH, we don't see that many people with migraines here, but they generally report positive results. I'm puzzled, as I always am, when people say this, as you say: " I tried all the medications." People say it often, so I'm not criticizing you. It's just so rare when something like a sumatriptan injection doesn't stop a cluster or migraine attack. I always wonder whether people who say that maybe have been misdiagnosed, or maybe they only think they have tried all the medications. You should seriously consider the vitamin D3 regimen that is described in the Files section -- very helpful for migraines, we have been told. I think some people might advise you that people in recovery have to be very cautious about psychedelics, but you probably already know that.

Wow! Good for you (and that ER doc)! First time for that one. In my opinion, anyone with CH would be well advised to seriously consider the D3 regimen. It's basically good for you, and it affects attacks (weaker, less often, or eliminated) in positive ways for more than 85% of people who do it. End of advice.

Ts', I hope you have your medical O2 in place today, and I hope last night wasn't too terrible for you. It wasn't clear to me what kind of oxygen tanks you have from your medical supplier, but many are willing to give you multiple tanks, including large ones (since you bought a regulator yesterday, I am assuming/guessing that you don't have nig M or H tanks). Of course, if you have to go get them yourself, those big ones are not easy to lug around. From what you've said about your supplier, I'd say it might be time to look for a new one. Since you've said you live in a city, you should have multiple options. FWIW, if you didn't return that stuff you bought from Harbor Freight, you can get that tank filled at any industrial oxygen supplier (Airgas, Praxair, and Linde are the names of a few), to have as a backup.

Okay, just one more thing (which you might also have tried) -- many people find that their hits are reduced if they sleep sitting up in a recliner (head higher than heart I think is the standard) or sleep sitting at a table with their head on a pillow. Wishing you the best.

I am really sorry. I did say in my first post that you needed to be sure that where you went sold filled tanks. I should have emphasized that more, given the stress you were under. I'm really sorry for your going through all that. Have you ever had any success aborting or lessening attacks with energy shots (such as 5-Hour Energy) or energy drinks? A lot of people get some relief that way, if they drink them at the first sign of an attack. The energy shots are actually more likely to be effective, because despite their smaller size they contain more caffeine and more taurine. Some people find that putting their feet in a bathtub with very hot water helps calm an attack. And this, also from my first post: >> In a pinch, some people have talked about going to a local fire or EMT station, where they have O2 and have let at least some people use it. And this is last last ditch -- some people get some relief from putting their heads in the freezer or up against a full-blast air-conditioning outlet and breathing deeply. << There's a thread here in which people discuss their natural methods to abort or reduce attacks. https://clusterbusters.org/forums/topic/3655-my-natural-ways-to-stop-the-pain/#comment-46865 I know of one other person who tried the lime method in the tenth post and felt that it helped. Melatonin (also mentioned there) helps a lot of people. Some get help with a capsaicin product in the nose (Sinol is one of those products), but other find that the burning just adds to their misery without stopping the attack.

It occurs to me that if you want to conserve O2, you could use this method. Some folks here have said it works great, and Batch knows his stuff. https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

If you have a 540 reg on your existing tank, you can use that. Connects in the same way. Barbed fitting will be in the packaging. Attach regulator to tank. Be sure regulator is very tight (crap, should have told you to get a big wrench). Attach mask hose to barbed fitting. Open tank valve. Turn the handle thingie on the front of the regulator. I have the feeling, vague recollection, that you turn it clockwise to open and counterclockwise to close. Will be pretty obvious to you. As I said, that gauges are meaningless. Open it to get the flow you want. There's a very high potential flow rate (lpm) from these, so have a little caution. Set it so the bag fills as you exhale and empties when you inhale.

Ts', I have to go out. I hope you're solving your O2 problem. If you need additional information about welding O2, you might try PMing Dallas Denny: https://clusterbusters.org/forums/profile/17919-dallas-denny/

Thanks, Pixie.

Many people use welding O2, maybe 15-20% of people with CH. It's the same O2. The tanks will be right on the shelves (in my experience). I don't think you'll need to tell anyone anything about why you need it, but do not say it's for medical use. Just for welding. Highly unlikely anyone will ask you. Remember that you'll need a CGA 540 regulator unless you already have large medical tanks. Like I say, they sell a good one at Harbor Freight (comes with the barbed attachment for connecting the hose from your mask); don't know about Tractor Supply or other places, which will probably have regulators but which might not come with the barbed fitting. You can buy an adapter with a barbed end. Again -- if you ask about an adapter someplace, don't say it's because you want to attach the regulator to an oxygen mask. Generally, the tanks they sell are small (20 cu ft). Maybe they also sell larger ones. These are sold by cubic foot, NOT by medical terminology (E tank, M tank, etc.). A 20 cu ft tank might get you by today, but it's good for about 35 minutes at 15 lpm. So you might want more than one. Welding regulators don't have lpm settings. So don't ask about that. You just adjust it until your flow is right. We can cover that if you get to it. Here's the Harbor Freight regulator: https://www.harborfreight.com/catalogsearch/result/index/?dir=asc&order=EAScore%2Cf%2CEAFeatured+Weight%2Cf%2CSale+Rank%2Cf&q=oxygen+regulator This is what the regulator for small medical O2 tanks looks like. This WON'T work on any size welding tank: https://www.walmart.com/ip/Drive-Medical-18302GMN-CGA-870-Mini-Oxygen-Regulator-0-15-LPM-Barb-Outlet/33651373?wmlspartner=wlpa&selectedSellerId=2826&adid=22222222227022525791&wl0=&wl1=g&wl2=c&wl3=69080698472&wl4=pla-135803090672&wl5=9021710&wl6=&wl7=&wl8=&wl9=pla&wl10=113489982&wl11=online&wl12=33651373&wl13=&veh=sem

I take it you're using welding O2? It's true that most commercial O2 suppliers seem to be closed on Sundays. However, I imagine that places like Harbor Freight and Tractor Supply, which both sell O2, are open Sundays. Check the store locator at each site -- and make sure that they are selling filled oxygen tanks or can fill them for you. If you're using medical O2 in smaller tanks, you might also have to buy a regulator that fits a welding tank (regulators from big medical O2 tanks, M and H sizes, will work on welding tanks). I know Harbor Freight sells a regulator; don't know about Tractor Supply. https://www.harborfreight.com/ https://www.tractorsupply.com/ There might be other similar places, those are the national, widespread ones I know about. In a pinch, some people have talked about going to a local fire or EMT station, where they have O2 and have let at least some people use it. And this is last last ditch -- some people get some relief from putting their heads in the freezer or up against a full-blast air-conditioning outlet and breathing deeply.

Great advice from spiny (as usual). I would only add that the vitamin D3 regimen discussed in the ClusterBuster Files section is something you almost certainly should start, and also, because CH attacks (definitely sounds like you have CH) often correspond to or are worsened by seasonal allergies, you could try benadryl at morning and night. You could also try melatonin at night, starting at about 9 mg and working up as needed (but not both melatonin and benadryl at night). Since you mention recent dental work -- the anesthetic most often used by dentists, epinephrene, is a severe CH trigger for many people. Talk to your dentist about alternatives. I think prilocaine is considered to be safe for people with CH. (I think I have that right -- epinephrene bad, prilocaine okay. Like I say, talk to your dentist, who should know or be able to find out.) At the top of the posts at this General Board is a list of doctors recommended by people with CH. See if there's someone near you. If you can, get to a headache center, where there is a greater likelihood that you'll get a doctor who knows something about CH. Stay in touch!!