CHfather

Yury, here's everything Batch says you need to take: Vitamin D3 (Cholecalciferol) 10,000 IU/day (Adjust as needed to keep serum 25(OH)D >60 to 80 ng/mL) Omega 3 Fish Oil 1000 to 2400 mg/day (Minimum of EPA 360 mg/day, DHA 240 mg/day) Calcium 220 to 500 mg/day (calcium citrate preferred) Magnesium 500 mg/day (magnesium malate, magnesium glycinate or magnesium citrate) Vitamin K2 (MK-4 & MK-7) MK-4 1000 mcg/day, MK-7 200 mcg/day (MK-7 preferred due to half-life) Vitamin A (Retinol) 900 mcg (3,000 IU) for men, 700 mcg (2,333 IU) for women Vitamin B 50 3-month course Zinc 10 mg/day Boron 1 mg/day Here's the file where he discusses it all: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 There's a "loading" process in there for getting D levels up fast (but it's good to know what your D level is, from a blood test, before you do any loading). He also says to take the calcium 8 hours away from when you take verapamil.

I just happened to run into this report tonight, while I was looking for something else. From a 2000 study of 789 people with CH >>Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief.<<< http://www.ncbi.nlm.nih.gov/pubmed/11091291

didg, denny answered your other questions at the other thread on this board . . . there's plenty of advice about making it into doses at the FB thread. sounds slightly complicated (measuring very small amounts and putting that into a capsule), but not beyond your capabilities.

Just to be sure, c't, you're doing the whole D3 protocol, as described here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804?

Yes, one with the purple person.

  Can't, really . . . You need to go there and request membership in the group, so a link won't take you there (I tried). It's the Cluster Headaches group (not the Cluster Headache Support Group).

I notice over at the CH Facebook group that there's discussion about the dalt having a big sinus-clearing effect as it works, for some people. The relevant posts are at the end (as of today) of the comments at the dalt thread that's pinned at the top of the page.

Good grief, Michael. You are one brave and determined clusterhead!!!

Mark is right about what TMJ is. Not uncommon as a misdiagnosis. Treatments include bite guards, physical therapy, various kinds of site injections, and even surgeries. (This reminds me of another category of things that might not have been listed yet in response to your original question. I don't have the energy to go back and look. Dietary things: special diets (e.g. vegan, gluten-free) and of course drinking huge amounts of water. Also, quitting smoking, quitting cannabis, trying cannabis . . .)

Alex, I'll try to answer some of your questions. Others will correct me where I'm wrong. Verapamil, at least at low doses, doesn't seem to interfere with busting, or at least it doesn't seem to completely block busting. So, some people (maybe particularly people with chronic CH) continue to use it. Since there are some health risks associated with long-term use, I think most people would recommend avoiding it if you can. A "hit" is just another word for an attack. I think a lot of people base their melatonin dosage on how they feel in the morning. With the symptoms you experienced, I think you are wise not to try high doses. The D3 regimen calls for taking amounts of D3 that are much higher than the standard recommendation. Arguments have been made (convincing to me) that the high doses in the D3 regimen are not dangerous. In fact, there was a recent medical study suggesting that the medically recommended doses were based on a mathematical miscalculation, and that they are way too low. It seems that if you have your vitamin D level checked regularly (it's a simple and relatively inexpensive blood test), you will not be at risk from the high doses in the D3 regimen. These are just my understandings.

Sorry for that loss, CHS. It's a very painful thing, indeed.

bwe', I'm glad you found us. You might want to consider starting a new thread and telling us a bit more . . . what medications you're taking, for example. There are other headache conditions that are somewhat similar to CH. You ought to get diagnosed by a competent neurologist. Your best bet for finding one of those is at a headache center. If your attacks are continuous for several hours (or throughout the day, as you say), it's possible that you might have something other than CH (such as hemicrania continua, which you can read more about here: http://www.ninds.nih.gov/disorders/hemicrania_continua/hemicrania_continua.htm). Treatments that work for CH might not work for other conditions, and vice versa (hemicrania continua, for example, is often treated effectively with a medication called indomethacin, but indomethacin usually does very little for CH). If you do have CH . . . . 1. It doesn't sound like you have oxygen. If not, that should be something you deal with right away. You might take a look at the CB Oxygen Page under the black and white MENU tab on the left side of the page. 2. Also, you might try drinking an energy shot or energy drink, or at least a strong cup of coffee, at the first sign of an attack. That helps a lot of people, and for most people it does not keep them awake even in the middle of the night. 3. And seriously consider the vitamin D3 protocol that has helped lots of people. Read about it here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Others will have other suggestions, but I think most would agree that you need to get a good diagnosis.

Nice idea, MG. Some others ones that some people have tried (sorry for any duplications): ketamine (Ajax reminded me of this one) sphenopalatine ganglion ablation sphenopalatine nerve stimulation microvascular decompression surgery botox injections deep brain stimulation sinus surgery TMJ treatments occipital nerve block hyperbaric oxygen trigeminal rhizotomy baclofen methadone nitrous oxide octreotide DHE (dihydroergotamine) clonidine sodium oxybate sex sodium valproate dietary therapies massage (Jeebs already listed chiropractic) TENS stimulation a whole bunch of topical creams and gadgets a whole bunch of OTC pain medicines (Goody's is the one I always remember, but Excedrin migraine, etc., too) I don't think anyone has listed energy drinks Depressing as hell, isn't it?

gabapentin kudzu (I assume you're not asking about busting agents.)

I was just reading an article about a cancer survivor who has created greeting cards that she wishes people had sent to her. (http://www.slate.com/blogs/the_eye/2015/05/06/empathy_cards_by_emily_mcdowell_are_greeting_cards_designed_for_cancer_patients.html) Some of them seemed worth including here.

ta, I have to admit that I had the same reaction as you, and I assume for the same basic reason. Sometimes we have to remind ourselves that we're here to help people, and the rest is just occasional turbulence. You are exceptionally helpful, with your focused, caring, knowledgeable posts. If you can see your way to stick around, that would be a very good thing. If not -- thank you for what you've already done, and heartfelt PF wishes.

I agree 100% with Pete M about the possibility that you have been inaccurately diagnosed. Particularly since your doctor's prescription was so off-base (imitrex pills offer very little help for CH; tramadol will do next to nothing; no O2; no verapamil . . .), I don't trust his diagnosis, either. Of course, you wouldn't want to take my word about what the correct prescription is, and your doctor surely won't. So just look up any reputable website and it will be there loud and clear. Here's the Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/cluster-headache/basics/treatment/con-20031706 Misdiagnosis is very common with headaches. In my view, I would not accept either what you have been prescribed (making it through a few more attacks before you can go back and say "Please give me the right stuff" is no way to live), nor the accuracy of the diagnosis. Maybe they'll go away and stay away, and it will have been just some freakish thing, If not, in my opinion you really have to keep advocating for yourself.

Imitrex injections, I hope -- not pills. And tramadol probably won't touch the pain. Plus, what does that mean? -- the trex, if its injectable, will probably end the pain. And the tramadol won't act fast enough to get to the pain in any event. Amphs, I'm sorry; I'd have to go back and re-read your thread to get all the nuance here, but doggone it, YOU NEED OXYGEN, and it's the first thing any doctor should prescribe. Trex and whatever else they give you are not healthy for you in the long run. O2 is a safer abortive, and highly effective. Gotta ask -- have you tried an energy shot/drink yet? It's very, very good that you've been PF (pain free) these last few days. Maybe you are out of the woods. But you are not getting great medical advice, as far as I can see.

I've been hesitating to comment because I'm not really qualified to judge. But I do like the unrhyming one better as poetry, partly because the rhymes, to me, actually detract from the power of what you're saying (I find myself noticing the rhymes a bit more than the message). That said, I also think you did a great job of finding rhyming words that really work, and not settling for words that might rhyme but don't convey the real message.

EXCELLENT advice!!!!!!!!

Amphs, most people eventually find that their intuition about good and bad things to do turns out to be a good guide. Given that, I still would say that in my completely nonmedical opinion, the most likely thing that's happening is that you are drinking coffee and you are getting head pain, not that you are getting this head pain because you drink coffee. If you decide to try something, note that for many people with CH, the energy shots/drinks are considerably more effective than just coffee -- it seems it's more than the caffeine, and likely has something to do with other energy-drink ingredients (taurine is often suspected of being the one that helps).

There's a list here of doctors who have been recommended by people with CH: https://clusterbusters.org/cluster-resources/ Have you tried an energy shot/drink (see my message above)?

Amphs, I can't say for sure that you have CH (it doesn't really sound like it to me, but I'm not a doctor). Moxie has given you a lot of great information. Time for you to get to a headache center (regular doctors are almost certain to be useless, and even neurologists are generally not very good at unusual head pain -- but since headache centers usually have long wait times, start where you can). As Moxie said, you might try drinking down an energy shot (5 Hour Energy, etc.) or energy drink (RedBull, Monster, etc.) at the first sign that the pain is coming on. This does help a lot of people with CH, and I'm just figuring that it won't do you any harm to try. Hard to know what else to suggest. As Moxie also says, an indomethacin prescription can pretty quickly rule in some things and rule out others. I hope others will have something more useful for you. Very, very sorry for the way you're suffering right now.

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Bob, I'm so sorry that you have experienced this loss. As you, Jeebs, and others have said, this was a person who invented something that changed countless lives for the better, against great resistance. Wow. We can all only hope to be as deserving of resting in peace when our time comes.