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Everything posted by CHfather

  1. Jl, may your CH always be so manageable that you can maintain your legal purity! The seeds are not illegal. Compounding and drinking them is a Schedule III offense. If I joined the CH religion, would I have to give up my current religion, which allows me to drive 95 miles per hour whenever I feel like it? Congratulations on being nearly through the law school ordeal, and good luck with the bar exam!
  2. Thanks for the update John! All information -- especially good news like this -- is much appreciated. And of course it's great that it's worked so well for you. I have three questions. When you say you take 3 D3s at 10AM and 3 with dinner . . . (1) What's the strength of each of the D3s you take (1 IU? 5 IU?)? (2) Do you take your 10AM D3 with food (I've read that one should take them with food, since they're fat soluble)? (3) Are you also taking the cal-mag-citrate that's recommended, or maybe a strong multi vitamin that has those ingredients?
  3. I had meant to give you this link to the OUCH doctors page, so you can check it for an LA doc when it's working properly: http://www.ouch-us.org/chgeneral/doctors.htm You didn't answer my question about oxygen, though. I keep thinking that you're missing an important piece of CH-fighting equipment.
  4. I just spelled this mushroom's name with only one "i" and had a fun experience with the subject line, not unlike kaboom's with Dan's moniker. But seriously, folks . . . I just read this elsewhere, and figured I'd ask, silly as the question seems, whether anyone here has tried it or something similar:    >>>I also noticed that since I started eating shiitake mushrooms with a meal at least three times a week, it's been nearly a year since I've had a cluster headache outbreak.<<< http://www.shroomery.org/forums/showflat.php/Number/13806167
  5. Glenn, glad to have a name for you. Mine's Jerry. I remember your vivid early posts, but what I don't remember is whether we ever convinced you to get oxygen and use it. That's one way to potentially test whether it's CH or migraine or something else that you have, since oxygen works with CH but not migraine. Better, of course, to see a knowledgeable doctor at a headache center. I just looked at the place at ouch.com (another CH site) where they list recommended doctors, to see what there might be there in the Pelican State/Sportsman's Paradise -- but they just "updated" that page and it'
  6. Les, you devote so much time so helpfully here that I hate to be a nag, but I'm wondering whether you might be able to get around to the question of using D3 and LR simultaneously toward treating CH. Each has proven beneficial for many but not universally for everyone. If they're not contraindicated somehow, it seems potentially advisable to me to use both. Thanks!
  7. Having been away from my computer for a few days, it's all I can do to catch up with so many posts here, so I just wanted to say thanks, t'asian, and to say again that it would be lovely if we could all come together around something, or some things, to put concerted energy behind. I will raise this topic again, probably (again) in relation to the forthcoming conference.
  8. Mystina, some folks over at the ch.com thread seem to be using D3 while using seeds. That's the best I can discern.
  9. How could I resist signing up: It sounds like Surf City -- two girls for every/two girls for every/two girls for every guy!
  10. Les, the basics of the D3 therapy are 10,000 international units of D3/day, 2000-4000 mg of Omega3 fish oil/day, and two calcium citrate tablets formulated with D3, magnesium, and zinc/day. It seems generally agreed as people feel their way through it that (a) the D3 is the essential component, and ( people will find somewhat different dosages more suitable, based on experience. As I read it, I think the 10Kish is recommended during cycle and 5Kish is recommended for maintenance. It's a long and convoluted thread, which can be found here: http://www.clusterheadaches.com/cgi-bin/yabb2
  11. Davy, another thing about steroids is that they are a known cause of a very unpleasant condition, called avascular necrosis, in which bone dies from lack of blood flow (often in the knees or hips, requiring replacement of those joints). It's not something you have to worry about, probably, from a few uses, but I believe there are people at this site who have experienced it and would attribute it to long-term use of steroids to treat CH. I had it in my knee. Not fun.
  12. Having guys like Dan and Jeff -- and so many others at this site -- on your side is like going to the Mayo Clinic, rascleo. Great advice, great wisdom, genuine compassion -- only better, because they'll stay with you until your situation improves. I would suggest that you order some RC (rivea corymbosa) seeds right away. It's completely legal to buy them and have them in your home, and they're not expensive. Then you'd have them if you decide to "detox" and try them. Here are some sources: http://www.ethnobotanicals.com http://www.iamshaman.com www.psychoactiveherbs.com www.
  13. Totally get it. You've done a great job of preparing yourself with knowledge and options. Keep in touch. Let us know how it's going.
  14. Christinauj, so sorry to hear about your suffering, and your mom's! Everyone here can relate to your pain and your fear, and they will help you at least make it manageable, if not defeat it altogether. Yes, as Arcan says, please go back up this thread to my post to Arcan (and read all the posts in this thread, which suggest some other things to do until you get oxygen, such as chugging RedBull). The advil probably won't help a bit -- and neither, unhappily, will any other pharmaceutical pain reliever. You gotta get oxygen, fast! Please read this: http://www.clusterheadaches.com/cb/
  15. Let me try to prevail on your kindness and restate my musing. You took LR for one high-dosage period, a stretch of two/three weeks, at least as far back as last December. You are chronic. Since that time you have not had to re-dose at high levels, but only have taken LR in small amounts as a precaution or as an abortive. This suggests to me that maybe one high-dosage 2/3-week period is preventive regarding future CH attacks. Do you think that if an episodic took LR 3x/day for 2 weeks when out of cycle, that might prevent a next cycle? Or do you think that CH somehow has to be present (
  16. Arcan, if you haven't gone back to Les's thread since he advised you about licorice root for preventing, be sure you don't miss his subsequent post in response to my question. He says it's not good to take licorice root while you're taking verapamil. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254/196#196
  17. Les, I see you posted while I was preparing this. Thank you for answering Arcan so quickly and thoroughly! Arcan is taking verapamil: Would that affect the licorice root's efficacy? Arcan is considering imitrex: I think you have said that that would likely interfere. I'd like to add my own two cents of curiosity. As I understand it, you took the licorice root 3 times a day for about two weeks, and then you cut back quickly (because of the powerful potential effects of the LR), and then you stopped taking it except as an occasional "antidote" for conditions that typically trigger you, or
  18. I don't recall him mentioning verap as something that gets in the way. I do think he would say that imitrex does get in the way. He did say that you should check with a doctor or pharmacist before starting licorice root if you are taking any prescribed meds. For "preventing" during a cycle he recommended a 3-times-a-day regimen, but he said he got off that after a couple of weeks because that's a high dosage of a strong medicine. (That's why I'm not sure about "preventive" use off cycle -- it doesn't seem that you could take "preventive"-level dosages for any extended time.) My da
  19. I don't think you'll extract a crisp answer to your licorice root question even from reading the whole thread. Maybe you want to do that just out of courtesy, but I also think you could just ask your question at the end of the thread, if you want to. I think I can guess what Les's answer would be, but I wouldn't mind seeing it myself.
  20. It's one reason I'm not a "hero," Arcan. I don't have CH; I've just been trying to help my daughter and learning as much as I can. She's episodic (twice a year: when fall changes to winter and when spring turns to summer). RC and O2 made her last cycle a lot easier and seemingly shorter, and we're hoping that a combination of strategies might prevent or diminish the next one (which we'll find out about pretty soon). People here were wonderfully helpful to me/us in many ways; I stick around to learn as much as I can and to pay it forward. As for her, she has a very demanding, high-pre
  21. With any luck at all, Arcan, there will be a treatment for something like permanent remission of CH before your cycles get worse -- if they do. Here's the link to Les Genser's thread about licorice root. I would try to say what I think his view is about preventing cycles, but he has been extremely generous with his time and I'd bet that he will answer a question you put to him there. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254 The D3 thread that I mentioned in my first post, over at the ch.com board, contains suggestions that that regimen may be prevent
  22. You do a great job for a non-native speaker, Arcan! I have found that the word "trigger" is used here and in other CH discussions in a variety of ways. Some triggers, such as alcohol, seem to create a headache almost immediately in many people. (But some people are not triggered by alcohol at all, and some are triggered by some kinds of alcohol but not others.) Other triggers are viewed as bringing on headaches that are worse than "normal," but not necessarily immediately (maybe later that night). I could make a very long list of things that people describe as triggers, from stress t
  23. You're the best, Dan. Great story, beautifully told. My daughter and I are indebted to you.
  24. Arcan, there are real heroes here, and, while Ron's kind words are deeply appreciated, I'm not one of them. It occurs to me that there are some basic things that experienced people with CH know that you might not be aware of. For example, many people find that slamming down a RedBull, or some other energy drink with taurine in it, at the onset of an attack helps a lot. They often do that just before jumping onto the oxygen. My daughter got by somehow for many years by eating coffee beans at the beginning of an attack. Ginger tea helps some folks with the shadows, or even by reducing the
  25. Welcome, Arcan. I'm going to let people with more experience answer many of your questions. Surely you have to prepare for the fact that until a fully-effective preventive is available, you're likely to have more CH periods in the future. In one way, if this can possibly be said about CH, you're "lucky," because new treatments are being identified and developed all the time. Even the use of oxygen is a relatively recent development. You have every reason to expect that CH will be "defeated" in the foreseeable future. I don't think you have to worry about suffering from CH for the n
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