Jump to content


  • Content Count

  • Joined

  • Last visited

Community Reputation

1 Neutral

About S.E.

  • Rank

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. S.E.


    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
  2. 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
  3. 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
  4. 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
  5. 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!
  6. S.E.


    What are the vitamin batch? And are they different for episodic or chronic?
  • Create New...