CHfather

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'!!

Thanks. Good days and not-so-good ones for the kid. I'm about to post a question in that regard.

Well, I already posted my reaction at your other thread, but I'll say it again -- I am so, so happy to see you back. Sorry for all you've been through, and are going through, and your mom has gone through and is going through; happy that my feariest fears about your absence weren't correct.

Yer makin' an old man cry here, Mystina. I am so completely thrilled to see you!!!!!

T' H', you can read about Flunarizine (which is not available in the US) here -- http://en.wikipedia.org/wiki/Flunarizine. Sounds like a sensible pharmaceutical for your conditions, including this: >>It may help to reduce the severity and duration of attacks of paralysis associated with the more serious form of alternating hemiplegia.<< There's some additional info here -- https://www.nice.org.uk/advice/esuom33 -- including this alert: >>For maintenance treatment, 2 successive drug-free days every week are recommended and flunarizine should be stopped after 6 months and only re-started if the person's condition relapses.<< I can't vouch for this info, but it seems to be coming from an official source. I'm really sorry for all you are dealing with.

March 17, 2015: "Recommendation for vitamin D intake was miscalculated, is far too low, experts say" (Ten times lower than it should be, those experts say. Because of a math error.) http://www.sciencedaily.com/releases/2015/03/150317122458.htm

Well, emd', I'm glad your wife's having some PF days. At the same time, the dread of the pain returning must be terrible for her. First, to follow up on t'a's post, here's a link directly to the D3 thread over at ch.com. Batch's recommended regimen is the first post. If you can stand it, try to read (or at least skim) the whole thread. You can post something at the end. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404 Even independent of her head pain, your wife ought to be getting her D levels up (it's helpful for depression, among other things), but it could very well help with the pain, too. They never tried O2 at all????? In the US, you can set up an O2 system relatively easily using welding oxygen. Hundreds of people do that. If you want to try, let us know. Or maybe be prepared to insist on it with the neuro when you see him/her (we can provide you with peer-reviewed documentation from medical journals that O2 is the abortive of choice for CH). I don't remember what her history has been with sumatriptan injections. If you're going the conventional meds route, it would seem to be a no-brainer to include that. (Most of us here are not enthusiastic about anything that she's being given, let alone the cocktail, but that's the route you're on for now, very understandably. I'm hoping you can get a reliable diagnosis, and if it's CH, that she might want to try busting at some point. Right now, without a reliable diagnosis and with so much going on, I can understand a pharma-based pain-management approach.) My understanding of medical protocol is that both lithium and verapamil need to be monitored when they are first prescribed. In the case of lithium, it's my understanding that doses need to be adjusted; with verapamil, effects on the heart need to be looked at. I guess my only advice here is to be sure to do that follow-up with your neuro, even if she's still PF. Since at least for the moment she is doing conventional meds, it will probably be good for you to post over at ch.com (www.clusterheadaches.com), where there's a lot of familiarity with these meds. (Of course, this is assuming that she has CH.) Maybe one day you/she will want to consider busting. On a personal note, I was once in the hospital with a very painful non-CH (non-headache) condition. The pain was nonstop and very severe, and it was just horrible. The hospital's pain-management specialist saw me every day and we tinkered with a regimen to control the pain. It was very comforting to have an expert helping me, and to be trying things that seemed to help. Then, suddenly, before we had really created a fully successful plan, I got discharged because I had been there longer than my insurance thought I should be. I'm a fairly tough guy, but I cried and cried and begged to be allowed to stay for a couple more days. No deal. I got discharged with a huge regimen of awful stuff (tons of oxycontin and gabapentin, among other things) that might or might not help me. Maybe your wife isn't feeling as bad as I did, but it was one of the darkest days of my life. After two days at home feeling like a suicidal zombie, I flushed it all down the toilet and decided to look for other solutions (which I eventually found, thank heaven). Not recommending that your wife do anything that drastic -- just encouraging you and her that there are still many possible solutions out there, however depressed and frightened she might be feeling right now.

If it's the tripping and similar side effects that he hates, he should switch to seeds. No trip. You can get them quickly and legally (though preparing them is illegal). Demerol seems pretty crazy to me, even for pharma meds.

Shya, I remember that you said before that oxygen doesn't work for him. But I don't remember whether you got a proper setup to really test that. That's the #1 priority. See the CB O2 Page under the MENU tab on the left side of the page. I don't recall that he was really trying much (but maybe he had already tried it all already). D3? (https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Energy drinks? Seeds, if MM wasn't really all that helpful? If it's true that busting and O2 don't really help him, then I would look for an alternative diagnosis, such as hemicrania continua.