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Posts posted by S.E.

  1. 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 4  120 mg injections. I’ve read the migraine starting dose is 2 120 then 120 per month. I have not found the starting dose for clusters just the 3 100 per month. I was wondering if I should do 3  120’s or 4  120’s as a starting dose ?  
    My main concern is if the Emgality doesn’t work how long do  I have to wait to go back to busting. I understand that we are all different,  but was hoping someone could share their Emgality story good or bad in regards to interfering with busting. 
    Thanks to all and hope your finding relief with what ever works for you. SE. 

  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 prophylacticly. I feel greedy having found busting but it's been some long rough trips( smaller doses didn't seam to work) and they come around quickly.   I'm hopping to read of people having success with Emgality and how they transitioned from busting. SE. 

  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 on my flank and now have Lyme Disease. Even after the 30 day Doxycycline treatment Im still getting headaches for over three months with no help from busting. Has anyone out ther had a tick bite w Lymes Disease and also bad CCH?  After seeing a Infectious Disease Specialist he says the only way to see if the Lyme has penetrated the blood brain barrier is to have a lumbar puncture ( spinal tap) and have scheduled it. Two of my six neurologists I've seen have brought it up but never followed thru with it for my clusters. Anyone else have one?  I can't thank everyone out there enough and hope all are finding relief. SE 

  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!

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