CHfather

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!!

That kind of thing is so infuriating. Here in the US we have the reputable quacks on TV or in print telling people that capsaicin is the miracle treatment for CH, or some other similar nonsense (not to mention plenty of clueless doctors with their own unsubstantiated ideas about what to prescribe/what advice to give for CH).

Coz, so sorry . . . That does happen, when shrooms stop working. It's not even all that rare. Sometimes they start working again, later in the cycle or in a future cycle. Of course, it's important to know that the shrooms you tried were not too old or otherwise compromised, and to be sure you are not using any medications that might block the effects of the shrooms. No idea what the situation in Cyprus is, but if shrooms stop working, many people find that a different busting agent will work for them. Seeds, paper, and others.

non-rebreather mask. Good for you for fighting for yourself. Remember that welding oxygen is an option that many (~20%) of people with CH use. You get the tanks from a welding supply place and the mask and regulator from Amazon, Ebay, or another internet site. Why the hell can't he just look it up if he lacks knowledge. Criminey.

Lewis', you are getting really bad advice from your doctor. He is responsible for the way you are suffering right now. For one thing, indomethacin works for hemicrania, but it never or practically never works for cluster headaches. So if it worked (or didn't work), there would be no confusion. And as I have said, sumatriptan tablets are useless for at least 85% of people with CH. Pizotifen (which I have not read of being prescribed to a CH patient before) is not even a first-line treatment for migraine (from Wikipedia, which is actually quite reliable regarding medical conditions: "it is usually not the first choice medicine for preventing migraines, instead being used as an alternative when other drugs have failed to be effective.") I don't know what to tell you, except that you need a decent doctor who gives a crap about your suffering. There are standard resources that every doctor has that tell him/her what effective prescriptions are for various conditions: If your doctor consulted that, you wouldn't be getting useless medicines. There is a list of recommended doctors as the second pinned post at the General Board. (The standard pharma prescription is oxygen to abort, injectable or nasal Imitrex for breakthrough attacks, and verapamil as a preventive. A doctor could also put you on a course of steroids such as prednisone, which often takes away the pain for a few days and serves as a "bridge" while the verapamil dosage is leveled up.) In the short run: Many people with cruel idiot doctors are forced to set up their own oxygen systems using welding oxygen. You could do that, particularly since O2 helped you in the ER. You should start the vitamin D3 regimen that's described in the ClusterBuster Files section. You could try melatonin at night, starting at 9mg and working up to the level that works for you. Try drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack: for many people, that will reduce the severity of the attack or even sometimes abort it. Some people find that putting their feet in very hot water in a bathtub during an attack helps them. Not having oxygen, some people find that sticking their head in the freezer or up against a full-blast air conditioning vent and breathing deeply can help. For the longer run, you should give busting some serious thought (read the numbered files in the ClusterBuster Files section). I hope some of the stopgaps help you, and I really hope you will find a better doctor.

Laurie, my posts were responding to Lewisjones, who started this thread. Honestly, I can't think of why you thought I was responding to you or somehow dismissing your pain. No one here would do that. You say that you have tried everything, and you are about to give shrooms a shot. Lots of people have come here having tried everything, at their wits' end . . . and found that busting gave them their lives back. I hope that's true for you. You don't ask any questions about busting, so I'll assume you have read the files and know what you are doing. I can imagine that maybe you have not done the vitamin D3 regimen, which has helped a lot of people, including many with chronic CH. It's described in the ClusterBuster Files section.

For most people, from what I have read (which is a lot), it seems that early CH attacks are very severe, more severe than what you are experiencing. I'm sure that for some they start out milder and ramp up over time. Practically everything about CH is a mystery. Indomethacin seems to be a very strong NSAID. It causes digestive-track issues that are more significant than naproxen, for example. It is specifically recommended for hemicranias (not NSAIDs generally). Sumatriptan tablets are generally useless for actual CH attacks. They take too long to get into the system. Nasal sprays work for some; injections are the most efficacious (but not without significant side effects). As Potter said, inhaled oxygen is a highly effective abortive for CH attacks. If you have CH, that is what you must have. I'm hoping that maybe you don't have CH.

Lewis', You might have a hemicrania, such as hemicrania continua, which is treatable with a medicine called indomethacin. Given that you have CH-like symptoms without CH-level pain, it would be worth checking that out, I think.

Sure does sound like CH. Everyone here will tell you that oxygen is essential for CH. For whatever reasons, many or even most neurologists don't prescribe it. I could go into the possible reasons, which include not knowing how to write the prescription, but you just have to be ready for that, and ready to insist as much as possible. Yes, bring an advocate with you. Here is the article from the Journal of the American Medical Association demonstrating the effectiveness of oxygen. Wouldn't hurt to bring it with you, or maybe even send it in advance to an assistant or PA. http://jamanetwork.com/journals/jama/fullarticle/185035 Yes, people with CH are remarkably strong (I'm not one of them; I'm just a supporter of a family member with CH). But the right strategies -- including serious consideration of busting -- will make it much more manageable for you. I don't think it could hurt you to start the D3 regimen right away.