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Showing content with the highest reputation on 02/07/2019 in all areas

  1. Monica, try sending a PM to 1961mom. She's in PDX, or maybe Eugene. She's a great CH advocate. Hasn't been at this site in quite a few years, but is still very active on Facebook. I'm not comfortable posting her actual name here, because that would defeat the purpose of anonymity, but if she doesn't respond to your PM promptly, let me know and I'll try to give you more info by PM. To send a PM, click on the envelope icon that you see when you scroll to the top of a page, then click on "Compose New," and type 1961mom into the "To" line. It might help a tiny bit if you tell her that CHfather suggested you should contact her. I'll bet she knows other people nearby to you. I lived in PDX for a few years. My favorite place to live in the country (I've lived in 8 different states). Sorry that you're suffering so much now. Also, please -- as Freud suggested -- tell as more about how you are treating your CH. We might have some suggestions.
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  2. I have not tried it yet. I have tried the hyperventilating trick though with mixed success. I’m going to do higher flows and see what happens. Thankfully I never run out of O2. I have 3 m tanks and when I get down to two I call for refills. They come same day or next day. I am super lucky in that respect.
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  3. Thank you to everyone who replied to my question. I had to go with the affordable option this time around. Going to see if 25LPM helps better for the stubborn headaches that 15 doesn’t work for. I’ve been putting my extra cash towards mm growing. Now I’m isolating genetics and using agar dishes. Good genetics makes a huge difference.
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  4. Yo DM, ...gotta love them M tanks...you date an E-tank but ya marry an M..... ...I put away all thoughts of what my life would have been like without OXYGEN for aborts as too scary to imagine. mostly worked great for hits but nothing for "shadows" of a hit...for that, energy drinks and/or naproxen helped...or just a grim determination that "this too shall pass".... ….have seen multiple reports of folks trying O2 as a preventive...usually at night to prevent nocturnals...do not recall hearing of success... but dang it's worth a try... best jon
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  5. Wow that’s really interesting -thanks
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  6. Hey Virrr, Thank you for the feedback. Having CH return after an initial pain free response to the anti-inflammatory regimen is not uncommon and easily fixed. It happens to roughly 5% of CHers starting this regimen. What has likely happened is you've burned up available cellular concentrations of magnesium that's needed to hydroxylate (metabolize) vitamin D3 to its genetically active metabolite 1,25(OH)2D3. The simple fix is stop taking vitamin D3 loading dose for a day or two and double the magnesium dose to 800 mg/day split 400 mg in the morning with breakfast and 400 mg with the evening meal. When you restart the loading schedule, continue taking 800 mg/day magnesium through the 12th day of the loading schedule, after which you drop the Vitamin D3 dose to an initial 10,000 IU/day maintenance dose and the magnesium back to 400 mg/day. Doubling the Omega-3 fish oil can also help while on the 12-Day accelerated vitamin D3 loading schedule. VocTeacher is spot on... Vitamin K2 also helps. If this doesn't get you back CH pain free, add 500 mg/day Quercetin. It helps activate the vitamin D receptors (VDR) that are needed to continue the genetic expression that prevents CH. If that doen't work, you may have picked up an allergy to something in your environment or diet. Allergies release histamine in such large quantities, they make nearly all forms of CH prophylaxis ineffective. In this case, see your local chemist for a first-generation antihistamine like Diphenhydramine (Benadryl) and take at 25 mg every 4 hours for a week to ten days. Second- and third-generation "non drowsy" antihistamines don't work as well as they cannot pass through the blood brain barrier to block histamine H1 receptors at the genetic layer. Just be careful and not drive as this much Diphenhydramine will make you drowsy. If you need to drive or be sharp as a tack during the day, wait until you're home for the day then take 50 mg Diphenhydramine as you walk through the door and another 50 mg at bedtime. Regarding the placebo effect... it happens with all forms of cluster headache prophylaxis not just vitamin D3. As the raw efficacy of the anti-inflammatory regimen is 52% for a sustained pain free end point response and 80% for a significant reduction in CH frequency (an average of 3 CH/day down to 3 or 4 CH/week), both are well beyond the highest reported placebo response in CH of 14% to 43%, the lowest value was reported using the strict endpoint; cessation of headache attacks. (Nilsson Remahl AI, Laudon Meyer E, Cordonnier C, Goadsby PJ. Placebo response in cluster headache trials: a review. Cephalalgia. 2003 Sep;23(7):504-10.) Even if it was a placebo effect... you're still pain free so who cares... If you're the curious type and want to know for sure if this regimen is effective in preventing your CH or if it's the placebo effect... wait until you've been CH pain free for at least 2 weeks then stop taking this regimen... If you're like me and many other CHers, your CH will return in 3 to 4 days and could take as long as a week. When the CH returns (and it will), restart this regimen with a couple days at a 50,000 IU loading dose then drop back to your maintenance dose of 10,000 IU/day. This will get you back CH pain free in a day... two days tops. I realize this sounds like a silly thing to do, but it will accomplish two things. (1) It lowers the probability it was a placebo effect and (2) more importantly, it will give you confidence this regimen is actually working to prevent your CH. When you've completed 30 days on this regimen see your PCP or neurologist for lab tests of your serum 25(OH)D, calcium and PTH. If there are any questions about these lab tests, give your PCP/neurologist a copy of the anti-inflammatory regimen CH (and Migraine) preventative treatment protocol from the following link: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 When you have these lab results in hand, please find the time to take the online survey of CHers taking this regimen to prevent their CH. To start this survey, click on the following link. We need results from CHers like you to convince neurologists this regimen is a safe and effective CH prophylaxis. http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c5ce971022f6 Thanks again, take care and please keep us posted. V/R, Batch
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