jh Posted June 5, 2019 Share Posted June 5, 2019 Anyone have experience using the new approved cluster drug called Emgality? Quote Link to comment Share on other sites More sharing options...
gore2424 Posted June 22, 2019 Share Posted June 22, 2019 Hi everyone. I have been chronic for 20 years but my neurology Dr. thinks outside the box and had me try the Emgality. Its a once a month 120 mg/ml single dose injection prefilled pen 2 per box.She had me take 2 first month then 3 the next three months. Being chronic didnt help me except put me to sleep for days which I will take that sleep as a win. I am really hopefull the other headaches types will get the relief they deserve. Also in each box is a savings card for up to 12 months free if you have commercial insurance. Terry Quote Link to comment Share on other sites More sharing options...
Freud Posted June 22, 2019 Share Posted June 22, 2019 (edited) 2 hours ago, gore2424 said: She had me take 2 first month then 3 the next three months. My doctor wrote it for me last appointment as well, Lilly will cover $4900 the first year. Total cost of the drug the way my doc wrote it is $7,800+. I’m not sure why after the first dose you took more than one injection per month. The literature supports a double dose the first dose then one does every month there after. Any idea why your doc did 3 injections the third and forth months? what kind of results did you get? (Edit: after rereading your post, if I’m understanding correctly your CH did not get better but you got a few good nights of sleep? )Are you in remission or did you just get the 50% reduction in CH as most of the ECH patients did? edit: I decided to wait on the trial until I’m detoxed in February and I can tell if the psychedelics will work or not. I figure if it’s the only real option I have left than I’m going to only try it if mm/lsd... doesn’t work. Edited June 23, 2019 by Freud Quote Link to comment Share on other sites More sharing options...
gore2424 Posted June 24, 2019 Share Posted June 24, 2019 Hi Freud my Dr. knowing I was chronic and the 2 doses did nothing wanted me to try the 3 per month which only made me sleep. I am on 200mg trokendi XR twice a day. Plus other meds for my mental issues. My neurology Dr has been a great help for me since I got away from pain centers and opiates. She has researched this site and gave me the info for the mushroom studies. She also got me hooked up with a Dr that help me get a patient cannabidiol registration card which mostly helps with the sick tummy and anxiety and pannic attacks when the bad clusters are coming on. I have a headache 24/7 base pain level 3-4 and get hit 3-5 times a day with the nasty ones. I just have to get off one of my mental med and then find how to get the mushrooms to try. Quote Link to comment Share on other sites More sharing options...
FunTimes Posted June 24, 2019 Share Posted June 24, 2019 Gore Your best bet for getting mushrooms is to grow your own. you can find all kinds of information on the boards by searching MM in the upper right corner of this page and follow the link at the top of this page that says new users read here first. Figure out how you want to get started and ask alot of questions. Quote Link to comment Share on other sites More sharing options...
Freud Posted June 24, 2019 Share Posted June 24, 2019 Start Here https://clusterbusters.org/forums/topic/5874-alternative-grow-methods-for-mm/?tab=comments#comment-58716 this is only one method. Others here use the PF tek. You can search here for that with the let’s grow mushrooms videos Quote Link to comment Share on other sites More sharing options...
CHfather Posted June 24, 2019 Share Posted June 24, 2019 8 hours ago, gore2424 said: I have a headache 24/7 base pain level 3-4 and get hit 3-5 times a day with the nasty ones. gore', this sounds a lot like hemicrania continua. Have you taken indomethacin? Quote Link to comment Share on other sites More sharing options...
gore2424 Posted July 2, 2019 Share Posted July 2, 2019 thank you Fun Times & Freud & CHfather CHfather I have tried that along with many other drugs in May 2002 I had a right retromastoid craniectomy and trigeminal rhizotom done in the Mayo clinic. In lay mans terms they cut the right trigeminal nerve that left the right side of my face with no feeling that cannot be reversed. Only got 5 months relief. Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 3, 2019 Share Posted July 3, 2019 That's horrible. So sorry!!!!!!!!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.