CHfather

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.

There's a fairly high likelihood that your primary will be shocked by the amount of D3, and even try to talk you out of it. S/he will be wrong about that. You don't need to have the blood workup before starting the D3 at a basic level -- it is virtually guaranteed that your D is low, particularly by the standards required to treat CH, and starting at 10 or 20kIU/day isn't going to do you any harm in any event. Is the triptan injectable (could be pills (worthless) or nasal spray (iffy))?

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