
S.E.
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Emgality for Chronic CH Hello to all you fellow sufferers. After 1 1/2 years of very bad CCH (4-6a day) without any relief from trying just about every Med I’ve read about on this site ( I have had no success w O2 even with hi flo mask). I have been busting for two years now with high doses (3-4 g) every 40 days then again 5 days later. Although this regiment and the help I’ve gotten from clusterbusters have saved my life I’m now having kidney pain after busting. After not being able to acquire Emgality ( I’m on Medicare) for less than $1700 a month I have finally got a free sample of
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Emgality "does it play well with others?" I was Chronic for 1 1/2 years then busted and have been attack free for 1 1/2 years now. I still have daily shadows ha but have learned to except the inconvenience. Not a day goes by with out me worrying the four- six attacks lasting 2-3 hours coming back. My doc wants me to try Emgality and I'm concerned it will ruin my dose of 3 g wait 5 days do another 3 g. I have it down to 40-45 days when I start felling pain behind my eye I dose. Has anyone stopped busting to try Emgality and did you wait for an attack to abort or did you take it prophylact
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Thanks Dallas Denny I can’t believe this situation I’m in and will post anything I think could help someone as I seek help. I had a feeling the chance of someone having CCH&Lymes was slim. I spent months before being diagnosed with CCH and can’t take any chances with Lyme complications which have their own complex problems and my infectious disease docs weren’t farmiler with dosing? I have been on the Batch D 3 plan since last September and it hasn’t helped? I seam to fall into the 10% who don’t get relief with many of the things I read about. SE
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After 16 months of chronic CH 4-6 times every day and going thru all the meds( including five days I'd DHE push infusions and 10 tanks of O2 w the cluster buster mask) nothing would help. I was scheduled for a five day infusion of karotine and saw the NG video by Dan and I busted w 3 grams five days apart and they stopped! I was on a 45-50 day schedule and waited for my 3 am wake up each time and it worked for 8 months. Then in a middle of my schedule I had terrible headaches and the dose didn't work? Then it turned to high fever and chills and soaking night sweats. I had a large rash appear
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After 16 months of chronic CH every single day, 4-6 attacks each day and busting approx every 45-50 days I though I had it figured out but No I got a horrible headache high fever 102/3 and drenching sweat. Found out I have Lyme disease. Now my schedule is messed up and I have headaches but not the attack kind day and night. Does anyone out there have both ch and Lyme. Now my headaches are having headaches!
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What are the vitamin batch? And are they different for episodic or chronic?