CHfather

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.

Lyrica is an "advanced" version of Neurontin (gabapentin). At least in theory, it could help with neuropathic pain. Very strong side effects (particularly that Zombie-like business) in some people. Sometimes prescribed for CH itself. If you type lyrica into the search bar at upper left, you'll see a few discussions of it. I don't know whether it has been established whether it might block busting.

What they said, Fab. You have brought sunshine, courage, laughs, wisdom, and inspiration to many folks here, and you are missed. Get well soon, and know we're thinking of you.

You are very wise indeed for someone under 18, spiny.

Complete new drug, which has shown great effectiveness for preventing migraines. A lot of people in the know think this could be a very big breakthrough for CH. Read more about the drug (LY2951742) here: http://www.arteaus.com/role-of-cgrp-in-migraine.html Gotta say again that my heart goes out in huge gratitude to those who will participate in this, who will risk (as I'm reading it) 8 weeks in cycle taking an ineffective placebo. I am assuming/guessing that they'll still be allowed to use oxygen to abort attacks, but I'm also assuming/guessing that any pharma meds (verap, trex) might be prohibited. Just guessing about all that. Obviously, we'll learn more as it's underway.

Quoting this from another thread to start this new one . . . Is there any way of reaching her? Maybe some kind of group message if she can't look at individual ones? This makes me so very sad. Of course, I have noticed her absence, but sometimes those things just happen. She has been such a beautiful life force here. Speaking of which, I have thought (again) recently that if there are two people who I think would get along great in the world, it would be Fab and Pixie-Elf -- couple of life-loving, plain-speaking, people-helping Texas Women with a capital W who have been through a lot more than their fair share. Some day . . . Anyway, if there's a way to reach her, individually or collectively, I'm in.

"Abnormal coactivation of the hypothalamus and salience network in patients with cluster headache" http://www.docguide.com/abnormal-coactivation-hypothalamus-and-salience-network-patients-cluster-headache?tsid=5 >>>OBJECTIVE The purpose of this study was to investigate whether the resting-state coactivation of the hypothalamus, both ipsilateral and contralateral to the headache side, and the salience network (SN) was altered in patients with cluster headache (CH) in the headache attack remission state in the cluster period, and to reveal possible pathogenesis of CH attacks and gain further insight into the pathophysiology of CH. METHODS Resting-state fMRI scans of 21 patients with CH were obtained (13 with right-sided headache and 8 with left-sided headache) and 21 age- and sex-matched normal controls. The resting-state fMRI data were analyzed using independent component analysis to identify the group differences of hypothalamic-SN coactivation between the patients with CH and healthy controls. RESULTS Decreased functional coactivation was detected between the hypothalamus, both ipsilateral and contralateral to the headache side, and the SN both in patients with right-sided CH and in those with left-sided CH. CONCLUSION Our findings suggest that the decreased hypothalamus-SN coactivation may have a role in CH attacks by the defective central pathway of pain control and autonomic nervous system dysregulation. This helps to gain additional insight into the pathophysiologic basis of CH and the nature of the brain dysfunction in CH.<<<     Of course, I don't understand this at all, or at least just barely. There is an interesting article here about the salience network -- https://www.quantamagazine.org/20131205-inside-a-brain-circuit-the-will-to-press-on/ -- and one thing that's encouraging to me is that the salience network seems to be being widely studied, so maybe understanding and treating CH will be caught up in that wider net.

Nice one, T'H'!!