CHfather

Great advice from F'T' and Freud. OXYGEN can't be overemphasized. It's the real lifesaver. If you can't get a prescription, you can do as many do and create your own system using welding oxygen. For most people with CH who have done the vitamin D3 regimen, it has been effective at stopping cycles, reducing severity of attacks, and preventing future cycles (though not right away -- it can take a few weeks, although for a small number of people it's faster). http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Often, a good doctor (and I would say emphatically that you do not have one, given what was prescribed to you) might use a steroid taper (prednisone, usually). In some cases, it will stop a cycle, but in most cases it gives pain relief for a few days before the cycle comes back as you are tapering off the steroid. You can use those few days to jump start the D3 regimen, or to use the commonly prescribed preventive, verapamil, which takes time to get into your system enough to be effective. Regarding "busting" with shrooms or seeds (or L S D), read the numbered files in the ClusterBuster Files section of the board. You might find other things that will help you as you read the other files in that section. The "triggers" document, for example, has been helpful to some people. Also, because CH is often flared up by allergies, even ones you don't know you have, consider taking Benadryl 4 times a day, 25 mg 3 times, and then 50 mg at night. It's a lot, but it can help. Some people find that melatonin at night, starting at about 9mg and working up as needed, helps. Melatonin is an important chemical (hormone??) that is low in people with CH. NOT recommended to take both Benadryl and melatonin at night.

Buried on p2 of the CB Files section: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

non-rebreather. or, as jon' says, a plastic bag.

You could very quickly set up a temporary oxygen system using welding oxygen for something like $100. Many people use welding O2. You'd have to get a tank from a welding supply store and order a regulator and mask online. If you can get to a welding supply store right away, the time the whole process would take would just depend on how quickly you can get the regulator and mask. If you want more info about this, just ask. (I have the sense that you might not be in the US. I'm not sure if it's as simple as I've said in other places.) [Edit: Crossed posts with Freud here.]

I'm surprised by how many sites recommend replacing masks pretty frequently -- every month or six weeks. I don't think many people in this community do that, but I could be wrong. If you have a standard non-rebreather mask, you can buy a new one at amazon or many other online sites for under $10. If you don't have the premier mask designed for people with CH (http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit), it's a darn good investment. The general advice for cleaning a mask is to wash it in warm soapy water, rinse it with a solution of 10 parts water to one part vinegar (vinegar kills bacteria but is not supposed to harm anything else), and then rinse well with hot water.

Thanks, Denny. i suppose yale has recognized that it has to do something to make up for having me as one of its graduates.

Thank you. I'm looking forward to hearing more. I looked up Mr. Turnbull on google in every way I could think of to learn about his BOL-related activities, but didn't find anything. So I'll have to wait for more news about him from the conference.

Love to know what "back on track" means. I'm sure the official ClusterBusters FB site wouldn't mislead us, but there's no real info there, either. We heard this over and over from Dr. Halpern at previous conferences. I remember getting real excited and being told by more senior people that they'd heard it before. Entheogen couldn't raise the millions required for clinical trials. I gave them money and convinced friends to give them money. So I'm feeling burned by it all, but willing to become hopeful again.

You have to ramp up Verapamil, with monitoring of your heart. Many people with CH need large doses before it's effective -- considerably larger that what is used in its typical application, as a blood pressure med. Something in the range of 960mg/day can be required for full effectiveness. (The need for such high levels is recognized in the medical literature about CH -- it's not something people do on their own -- but many doctors are not aware of this.) The D3 regimen, if followed properly, will probably be more effective for you, and better for you, than Verapamil.

(1) Very nice of you to make that call, spiny. (2) spiny, what has been your experience with the CBD oil? I think I have three questions, assuming that you're using it to treat CH: (a) are you using the hemp-based version or the marijuana-based one? (b) are you using it for aborts? if so, is it helping you? (c) are you experiencing any kind of preventive effect from it, as far as you can tell?

Another thing to suggest to your doctor is that s/he look in any standard medical reference guide (the doctor should have some online one), where oxygen is the #1 recommended abortive. This is all oh so true. In my opinion, O2 is not prescribed for reasons that have nothing to do with its efficacy (which is unquestionable), or even the insurance issues (though they definitely state this as a reason, as CHChris says). It's because most docs have no experience with patients using high-flow oxygen, and there are unsure about how to prescribe it and what to do with a patient who is using it. So you have to persist. Even that is not always sufficient. Government insurance programs (Medicare, Medicaid, VA) are not allowed to prescribe O2 for CH. This is an irresponsible abomination. I think any private insurance has to cover it (could be wrong!) but it can take a lot of work to get them to do so. Maybe you want to call your insurance co in advance to get an idea. If your doc gives you the insurance "excuse," you might say you want to get the prescription anyway and you'll pay out of pocket if you have to. Regarding suppliers -- as CHC' suggests, you should call them after you get your prescription and make it clear what CHC' says: a large tank and a small one, with regulators for each (they use different regulators) that go up to at least 15 lpm, and non-rebreather mask. You do not want a "concentrator," which makes O2 out of room air. I haven't heard of docs prescribing tank sizes, but maybe it happens, and that would be good. The supplier is going to make a lot of runs to your dwelling to replace tanks if they give you only a small one or a couple of small ones. There is also a ,mask very strongly recommended for people with CH, which you will have to buy yourself: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit And you might want to get higher-flow regulators. We can discuss that when the time comes. Fingers crossed that it will be as easy as it should be, and not as hard as we have come to expect it to be.

What Freud said. The example we always give is "Oxygen therapy for cluster headache. Up to 25 min at 15 L/min with non-rebreather mask." I suppose this was taken from someone's prescription, and there are probably other ways of saying it. Where it says 15 L/min; if you get the doc to write 25 L/min, all the better! In case it's helpful to show the doctor, the randomized, double-blind, placebo-controlled study of O2 for CH is here: https://jamanetwork.com/journals/jama/fullarticle/185035

It appears you don't have oxygen. That's something you really, really want for aborting attacks. Lithium is generally not recommended to be prescribed to people with episodic CH because of the severe attacks that follow from discontinuing it. That might explain part of what you're experiencing. For many people, an energy shot (such as 5-Hour Energy) taken at the first sign of an attack can help lessen the severity or even abort an attack. It is also advised that sometimes drinking ice water through a straw aimed at the roof of your mouth, with the aim of inducing brain freeze, can stop an attack. I have no idea how sumatriptan injections or a triptan nasal spray might interact with lithium. But since you can't bust anyway, maybe a triptan would make sense for aborting attacks (?). Oxygen should be the go-to, but sometimes it's easier to get a triptan prescription than to get oxygen.

Regarding lithium and MM, it says this in the ClusterBuster Files (in "Playing Well Together"): >>Anecdotal reports suggest that lithium can greatly potentiate the effects of LSD or mushrooms, and that it can produce very unpleasant feelings. An examination of a number of reports suggested that lithium can either increase or decrease effects. The combination of lithium and tryptamines may even produce episodes that seem like, and that perhaps are, epileptic seizures. If people are taking lithium for treating cluster headaches and it is not working, they may want to talk with their doctor about not taking it any more before trying mushrooms or LSD. If people are taking lithium for bipolar affective disorder, they probably should continue taking lithium, and they should avoid taking tryptamines for cluster headaches.<< Not everything in these older document is completely reliable, but I do believe that some others have commented over the years that this information should be kept in mind. I'm sure that Batch will comment on your primary question, about D3.

There have been a few people in cities who have called walk-in clinics and asked whether they prescribe O2 for CH. It worked out for at least two of those people. It probably would be good if you had some kind of written documentation showing that you have CH. Have you considered welding oxygen, which a lot of people use?

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Thanks, THMH. Here's more unsatisfying news: "A pre-specified futility analysis of the chronic cluster headache study revealed that the primary endpoint of mean change from baseline in the monthly average number of cluster headache attacks during the 12-week treatment period is unlikely to be met." https://www.tevapharm.com/news/teva_provides_update_on_clinical_trial_of_fremanezumab_for_use_in_chronic_cluster_headache_06_18.aspx

I know you're trying to be helpful (and promote a product, which is generally against the rules of the board but I suppose could be waived in this case(?)), but Ajovy is not, to the best of my knowledge and with reference to the Ajovy website, approved for cluster headache -- and there's really no such thing as "cluster migraine." So unless you can clarify, this might be creating false expectations among people with cluster headache, which is not a form of migraine. I'd be happy to be shown that I'm wrong, since I think this treatment is important.

CHChris, can you say anything about what you learned from Racer's presentation that helped so much? He's great, and always full of great advice. I assume you have heard that many people use welding O2 as the basis for their systems. That's an option worth exploring if you can't get a prescription for medical O2.

D3 regimen and busting (read the numbered files in the ClusterBuster Files section to learn more about busting) are the only ways I know to "get them go away" (end your cycle) without a visit to a neuro for a prescription (such as verapamil and/or prednisone, which might or might not work to end your cycle). Of course, you can get individual attacks to go away with oxygen, sumatriptan, and other things that you might get from a neuro. And I suppose you might step up from straight coffee to energy shots (such as 5-Hour Energy) to maybe get quicker aborts.

Hubby, type CBD into the search bar at the top right of the page. It will lead you to several accounts from people who say they were significantly helped by CBD oil.

Thanks, jon'. I posted some info a while back on the Research board that suggested that this type of drug ought to work well for people with CH, too. No long-term studies yet of any kind of use, so l-t side effects undetermined.

Very good point.

tues' -- No oxygen? Are you doing the D3 regimen? You find that the suma pills actually help you? I ask because most people say they don't help, but you're the second person today to say that they do help them.

Yann, this is of course very painful to read for those of us who understand what you are going through. It's not clear to me why you're only planning to do the D3 regimen "starting next winter." It's something you should do right now, I think. Have you looked into the GammaCore device at all -- a portable method for aborting attacks. http://gammacore.co.uk/ Mixed reviews, apparently not as effective for people with chronic CH, and quite expensive in the US (don't know about Europe), but I'd think it could be worth trying. Also, the new preventive medicine erenumab (Aimovig) is approved in the EU, at least for migraine, and I think it can be expected to be helpful for CH, if you can get a doctor to prescribe it. As I understand it right now, you have to go to a doctor's office to get an injection every two months -- but I could be wrong about that. CBD oil as an abortive and possible preventive? Lots of good reviews here. You can look it up by typing CBD into the search bar at the top right of the page. Do you know about splitting triptan injections so you use a lot less each time, and therefore have a lot less side effects? https://clusterbusters.org/forums/topic/2446-extending-imitrex/ As you say, many people have found relief from busting. I can see how it doesn't really fit your schedule right now, but of course it's something you should consider. You would not be the first person to come here thinking it would be better to not be alive, and to find life a lot better.