Jump to content
ClusterBusters

Joshua

Advanced Members
  • Content count

    21
  • Joined

  • Last visited

  • Days Won

    1

Everything posted by Joshua

  1. Joshua

    Emgality

    @jimmys - I'm still here, and I'm cluster free after using Emgality for 2 consecutive months. I went from 5 hits a day, to about 2, to none over a few weeks, then totally pain free. I did not take it the 3rd month, and am still pain free a month in. I have also tapered off all Verapamil, etc. I did not have any side effects to speak of. Get in touch with me directly with any questions and good luck!
  2. Joshua

    Emgality for episodic

    It's working. No headaches since 9/4.
  3. Joshua

    Emgality for episodic

    I had great success with Emgality. Took it in mid-August when I was having 5 HA's a day. They slowly decreased and last HA was 9/4.
  4. I have taken Emgality for 2 months, I just started the 2nd. That's 3 shots the first, and 3 shots the second. My headaches reduced (after a one day spike) from about 5 a day to 2 a day, and now I'm pain free for almost 3 weeks. As I said in a previous post, there could be some change of season at play here as well, but the reduction in hits was definitely noticeable 24 hours after the first injections.
  5. Joshua

    Do you know they're coming?

    This is a great thread, and it's interesting to read how different people experience the onset of a cycle/attack. For me, it's very, very subtle. Before every attack (except those that wake me from sleep) a very slight sensation right where my neck seems to meet my skull behind the ear, could be a good 30-40 minutes before the real pain starts. At the same time, my mood changes pretty dramatically, I get quiet. I think that is more of a response to knowing what is coming, disappointment that the last one wasn't my last one. I often wait out toe 30-40 minutes to see if is just a shadow, because i don't like to waste aborts because they are so precious and hard to refill quickly/cheaply when the stockpile runs out.
  6. Joshua

    Emgality for episodic

    Hello everyone, I thought I'd throw my .02 cents in re: Emgality. I've been episodic since I've been 18 years old, I'm 45 now. The episodic cluster dose as noted above is 3 injections monthly until cycle ends. Yesterday I took my second round of 3. My cycle started mid summer in earnest and I was up to 5 cluster headaches a day. Verapamil and the usual prevents prevents weren't working, and although my D3 level was normal, the regimen wasn't helping this time around (it had in the past). So I started Emgality on 8/15 and my 5 a day went down to about 2 a day, then skipped days, and as of today I've been about 7 days PF. So, Emgality YAY! - or maybe not? The question I"m asking myself is whether this is due to the drug or the seasonal change towards Autumn. The PF days started just as the weather started to get cool where I am. Either way, I'm happy to not be getting any more attacks, and I took another monthly dose yesterday just for insurance. If I remain PF, I may see what happens mid-October and see if I get get off meds. This site and CH.com have been lifesavers for me in some pretty dark times, thanks to everyone who posts here. Joshua
  7. Joshua

    RC vs Vitamin M

    Ok, so I've been around for a while, and am poking my head in to this arena, finally..testing the waters. I've read about both mushrooms and RC..and I have a question to which there are probably many answers... 1) why go to all the trouble to grow if RC seeds are a) so much easier to prepare/ingest? 2) are legal to purchase, etc? . Are mushrooms proven (by virtue of overwhelming experience) to be much better and therefore worth the trouble? . Do RC seeds actually work as well for chronics? . Joshua
  8. Joshua

    RC vs Vitamin M

    Does anyone have a link to a site that they've had good luck ordering RC Seeds on?
  9. Joshua

    RC vs Vitamin M

    Thanks all! I *do* have oxygen. 3 M tanks right in my closet. Working on getting a portable kit. Currently they will only give me 15 lpm, which works for me. Getting a higher flow regulator is on my list. . Going to talk to my neuro at some point in the next few weeks, I'm pretty sure knowing her I know what she's going to say about trying RC... but, at least I'll have informed her . This may not happen for a while, but I'm just getting all my ducks in a row.
  10. Joshua

    RC vs Vitamin M

    MoxieGirl - what a great reply, I really appreciate it. I think for me, I would start with seeds just given the time it takes for everything else. I currently would have to taper off 900mg of lithium and 720mgs of verapamil. . I'm trying to coordinate this for a time that is "convenient" - and also be prepared for the worsening of the clusters before they get better.
  11. Joshua

    RC vs Vitamin M

    Cool... thanks for that. I'm also concerned that since I'm chronic and have spent the better part of 2 months trying to stabilize (now on lithium and high dose verap) that all that work will be undone by a bust attempt since I have to detox and if it doesn't work I'm looking at ramping up on drugs that take some time to kick in. . tough decision, but I'm starting to think about it..
  12. Joshua

    Anyone in NYC?

    Anyone in NYC? I'm looking to get together with and/or talk to someone who has busted their cycle. I'm chronic and want to begin to explore some other avenues.
×