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Just to clarify ac and c is available over the counter here inCanada its Acetaminophen with codiene.

you can fight the insurance company, of course. i suspect they are legally required to cover it. it is said that a "certification of medical necessity" from your doctor will help. Tractor Supply could be a very good source. Google something like "welding oxygen" or "industrial gas suppliers." Many people use other big national suppliers, such as Airgas and Linde. You can look them up, too. this might help as you consider welding o2. Notes about welding O2 - ClusterBuster Files - ClusterBusters

To add to my story I became a vegetarian/ vegan right after my last attack.

Hi community, I had cluster headaches for 20 yrs from the age of 15 to the age of 35. I went numerous times to the doctor looking for a diagnosis including to the emergency dept to find out what was going on.No one could give me answers.So I ended up self medicating,with ac and c.Whenever an attack was occurring within minutes or seconds I would take the ac and c.Yes I would get some pain at the beginning of the attack but 20 minutes after taking the medication the pain would start to go away,then I could resume my life but being still exhausted after the attack was over. My last attack was unbearable at the age of 35 no ac and c would work,so after about 20 hours into the attack I decided to try and run this attack off.I ran for a good straight hour.I came home exhausted laid down in my bed fell asleep.Woke up and it was gone forever so far,29 years and counting.But I started cycling daily not long after my last attack 20km a day for years.Im still in remission after 29 yrs Horrah!!! Hope my story helps someone out there that is suffering with this condition.The pain there are no words to describe it.

If you found a medical oxygen company that would service your area and it is just the insurance that is not approving ask about out of pocket payment. I do not use insurance to pay for my oxygen and it is actually cheaper for me paying out of pocket. Still need a script from the doc tho.

@Sub I agree with DD, easy to get, just a little cost up front. The other pro, you own everything so it is there for you when ever you need it, no fighting with health insurance companies. I have had mine for about ten years, have not had to use it in four. But it doesn’t go bad it worked just as good after 4 years. There are Tractor Supplies in your state, that’s where I go. Tank was in the $350 range with exchanges about $60 depending on what size tank you can handle. Don’t worry they don’t want to know for most part, but any excuse will work. Most people in retail are busy just trying to make it through their shift.

I hear you when it comes to changing cycles - can be somewhat unsettling. Glad that you haven't had a full blown attack in a few weeks and that you have O2 on the ready. Heres hoping that your cycle is short lived and that it is over soon. On the D3 regimen side a couple of things could help tweak it and for that you'd want to have the follow up lab tests at the 4-6 week mark - you'd see where your 25(OH)D level got to and if within the target of 80-100ng/mL. Did you have that lab measurement and did the loading dose get you up into that range? Cheers, Craig.

Have a question. My cycle this year has been weird. Luckily I only get one every 3 years. They have lasted anywhere from 1 month to 6 months. This is the lightest cycle as far as pain Ive had. I am 7 weeks into it. Havent had a full blown ch in almost 3 weeks. I started the vitamin d regiment 3 weeks ago. Just took my second round of emgailty. Now for the question. My cycle usually gets real sporadic then is just gone one morning. This time I am still having constant shadows of about a 3. But atleast twice a day I have one that will spike to a 6 or so. O2 if I am home will stop it. My question I guess is the emgality and vitamin d just masking the bad pain and I am still in full cycle or is it actually trying to taper down and end. I have had a few days here and there I woulda bet they were gone and everything felt normal. Also Ive noticed any pressure such as a pillow on the back of my head will set off a headache this time.

G'evenin @Sub. I've been huffing weld ox for close to 20 years now. So, weld ox has got to be contam free or the welds won't be good......if an O2 supplier deals in both med and weld ox, both types of cylinders are filled from the same spigot......med tanks are vacuumed prior to filling while weld ox cylinders just get a "sniff" test. Costs are going to vary depending on location......when I began using it in Texas I was able to lease a large (48" tall x 9" dia) cylinder but sorry, I'm old and don't recall pricing.....when I moved to Okla I had to purchase my rig.....$300 for a full cylinder the same size as above, $50 for a weld ox regulator from Harbor Freight (last time I checked they were up to $75), and $25 for the clusterO2mask from ch dot com, and refills/exchanges were $23 ( it's been 4 years since it was refilled so not sure about current pricing. The cons: You can't tell them you're gonna breathe it....you're taking up glass blowing as a hobby or selling minnows....their biz is selling welding stuff so they really don't care....the 2 I've dealt with didn't ask me anything. As I said, no Idea what you'll run up against trying to source it in your part of the country. Hope this helps...any questions just fire away! Dallas Denny

Insurance company denied my medical oxygen. My neuro recommended welding oxygen as an alternative. Please, can anyone provide a starting point on seeking out safe, reliable welding-oxygen? Not necessarily looking for specific brands(?), but generally signs and what to look out for. I know literally nothing about this. Concerned about purity and unreliable equipment. In Connecticut if that is relevant.

Hey there Jimmy. I would say you sound like you have been doing the reading and I reackon you are onto something with the D3 regimen down year round along with intermittent preventative busts and hopefully it never comes. As for diet, there was that small ketogenic study - I just don't know about caveman diet, by that I presume you mean meat - and meat alone, I am not sure that the microbes in your colon would thank-you for that and I suspect in time we might see that the state and composition of the microbiome influences the disease in ways we currently don't understand. I am one for the D3 regimen year round and 3-4 monthly busting (more so than ever now given a recent 16 day cycle was aborted with the MM - 2nd dose). If only there was a magic prescription of things we could do to guarantee ourselves no cycles would come but thats currently a well-wish, best we can do is - as you say, stock up and implement those things that are tried, tested and true as per the community, be that traditional or alternative treatments. I think you'd be hard pressed to find a more definitive guide that Bob Wolds Pocket Guide as a resource of most all treatments, last time I looked. Worth having a look if you have not done so before! Cheers and all the best. Craigo.

... thank you Jeebs and DD....trying to share what i've learned from fellow clusterheads and the CH giants... many right here! still remembering when i didn't know and how scary it was. so, anyway...

Not sure why you would say this cuz I can assure you that I said no such thing @Jimmy Martinez

Thank you Dallas Denny for your support! I hope you are able to view this communication. I saw a post you did recently where it says you can't "comment" anymore on a thread unless you are a moderator.

Hi Friends, this site and the incredible people on it who share LIFE SAVING information is invaluable. Thank you. I'd like to meet people in person or at least speak with them on the phone. Digital communications are awesome but I feel so much more can be gained by being in an in-person support group. Maybe even a ZOOM group. I'm in Los Angeles. I have questions about busting, DMT, and anything else that I can use against our common enemy. I'm hoping to get better and better at disabling the condition. No matter what happens, for the most part, if I'm not experiencing the agony of a you know what, I'm the happiest, luckiest man alive with ZERO complaints. I will say that if there is a positive to this condition, it's appreciating the time when life is CH free and I can sleep through the night. I'm excited to meet and know people who have found a way to successfully combat the condition and also those who are no longer affected/victims. If anyone is in LA or knows of anyone in LA, please let me know. I just want to learn more and get my arsenal ready for when the battle begins. That's a lot of fancy talk for learning more about every tool available that will weaken or eliminate the CH cycle. Thank you! Jimmy Martinez in the San Fernando Valley section on LA. PS: I'm excited about DMT. I don't know what it really is but if it kills a cycle or weakens it, Im all in.

@jon019 that was a whole raftfull of "on point" responses to a bunch of questions brother!! Salute!!!

Thank you Bejeeber! I hope you are receiving this communication?

I was on Verapamil for about 10 years, got all the way up to 1080 a day and it sucks. Tapering myself down little at a time and I am now off all together. The higher dose did help with the clusters but like CHfather said above the vitamin D3 along with some other things has helped me get to the same place without the side effects. I did it on my own and told the doctor at each visit I went to what I was dong. He was not a fan but as long as I took it slow he said it should be fine. Doctors go to school for years learning things, I have only watched a few hundred hours of MASH, almost the same thing...

Well, I'll tell you something -- the hobby horse is definitely somebody's hobby horse. See this amazing Wikipedia entry and you will fascinate your friends at parties and on fishing boats with hobby horse information for years to come. Hobby horse - Wikipedia Here are just a few of the spellbinding facts you will be able to report. For example, you could say, "Yep, pardner, fishin's quite a hobby, by gum. Hey, that reminds me! Did you know ...." A May-Day procession including a Teaser, a Fool, and a Hobby Horse that tries to capture women under its skirts features in the climactic scenes of the 1973 British cult-horror flick The Wicker Man. From the term "hobby horse" came the expression "to ride one's hobby-horse", meaning "to follow a favourite pastime", and in turn, the modern sense of the term hobby.[63] The term is also connected to the draisine, a forerunner of the bicycle, invented by Baron Karl von Drais. In 1818, a London coach-maker named Denis Johnson began producing an improved version, which was popularly known as the "hobby-horse".[64] The artistic movement, Dada, is possibly named after a French child's word for hobby horse.[65] The term is also nautical. A vessel that is pitching forward and backward into the sea harmonically is said to be hobby horsing.

This was the kind we had during my relatively low rent upbringing. Yeah they kind of sucked and there was no real fun associated with them in my recollection.

Good one jeebs!! Pssttt....what the hell is a hobbyhorse??

"Hobbyhorse"? That's a good one! Nobody should be surprised to see me also start adopting use of it trotting that one out.

I fully concur with CHfather that chances are pretty good that your doc never got you up to a therapeutic dose for clusters anyway and, it kinda sounds like increasing your dosage would be contraindicatedso.....!! And, like him, I'm not a doc, but a quick Google search stressed that it should be titrated down under strict doctor supervision....and then told me what a doc would probably do to titrate down from a 240mg (3 x 80mg) daily dose so.... I'm of the school of thought that Verapamil is another off label pharma med that's thrown at cluster patients often but effective for a relatively small % and many of them deal with unwanted side effects!!! I commiserate with ya though, being a student and trying to learn stuff would be a biotch with the Beast hangin around!! DD

It's very unlikely -- in my view, of course -- that 120mg of verapamil has had any effect at all on your CH. The recommended minimum starting dose is 240mg/day (3 80mg doses), and that is usually just to provide an initial safe test, with dosages going up regularly if it proves safe. At least for CH, regular monitoring by EEG and symptom-watching is considered essential. Drowsiness is one symptom to watch for, and you seem to have that. Weaning is considered important for verap, but how much you have to do with 120/day would not seem a lot (and I think the weaning is mostly for BP patients, because of rises in BP while stopping). Typical weaning, I think is a 30-50% reduction every 5 days or so. I assume you can find this info on your own. There are people here who hate verap and think no one should ever take it, and others who found that at higher doses (sometimes as high as 960/day or more) it helped them (usually with side effects they did not like). You are in a perfect situation to start the full vitamin D3 regimen, a better (and generally safer) preventive. I'd strongly recommend reading this -- Basic non-busting information - ClusterBuster Files - ClusterBusters -- and the replies to it, and following the links, and then getting back to us. (A personal hobbyhorse of mine: A lot of students tend to eat a lot of food with MSG in it, for instance, those instant ramen meals and flavored chips, and for many, MSG is a trigger.)

Hi all! Question about verapamil. For context, I experienced 1 month of cluster headaches spring 2024, none in spring 2025, but this year spring 2026 was much worse. It lasted for a month and a half, but I've been cluster-free for a little over a month now. I've had some shadows and tension headaches here and there since then, and I still experience anxiety wondering when it may strike again. (Possible triggers: stressed student, sleep schedule (I try to be consistent), caffeine (I limit this), allergies (I take Claritin now), Vit D (I take Vit D 5000IU w/ K2 every day), I take Vyvanse (does not affect), sugar (I eat a low-sugar diet now).) My doctor prescribed verapamil 120mg every morning, and I've been on it for 2 months. I'm assuming it helped block the cycle, but I am developing chest pain, dizziness, loss of vision, and extreme fatigue by the end of the day; on top of that, I have POTS and my RHR is 63BPM and blood pressure is 103/71 baseline, so I'm not sure a calcium channel blocker is good for me...LOL. I want to wean off of it, but I cannot see my neurologist until July. What have been your experiences with verapamil, am I safe to come off of it yet, and when/ how should I plan to wean off of it? Is this something I should be on forever? I am terrified it will make the headaches come back. Thank you!