fiftyamp Posted February 22, 2018 Share Posted February 22, 2018 Hi all, I usually post on the CH.com board, but figured it can't hurt to post here too.I Had 2yrs PF end on 12/25, and it was a mild 3 week cycle. About 2 weeks after it ended, another cycle started and is still going on. In 20 years, I can't remember this happening. The only changes for me were that I used Imatrex twice this time, and I didn't bust with shrooms(which I've been doing for 10+ years). Also right after the first cycle ended, I lost my Dad. I'm not sure if grief has any bearing on CHs.Also, I take Batch's D3 regime, but my last Vitamin D3 25-OH test came back at 184.5 ng/mL. I'm not sure if I should continue with the regime. Can't get into see the Nureo for a few weeks, and I'd appreciate any advice. Thanks Quote Link to comment Share on other sites More sharing options...
jon019 Posted February 22, 2018 Share Posted February 22, 2018 Hi fifty...welcome to the party over here....these folks are remarkable! ....ch.com saved my life 20 yrs ago....much quieter there now...seems many folks have moved on or to facebook....made me sad.... ...when episodic it was 6-8 weeks on/off for 23 yrs...very few variations....but I've seen others report same as you. When turned to chronic there became no rhyme or reason for high or low cycles within....is a trick of "the beast" to keep you guessing.... ...if busting worked before...no reason suspect it won't now...I've heard you have to wean off triptans first...I'm sure someone with WAY more knowledge on this than me will be along.... ....just recently I've seen a report or questions re Imitrex trigging cycles (maybe it was you on ch.com). I've never seen it reported before as triggering...but frequently reported as a rebound causer. personally i find Zomig nasal spray (5 mg) to just as effective...minimal side effects...and no rebounds...costs the same...sheesh is it pricy.... ...condolences on your Dad.....I was caregiver for my Mom in her last few months and tho I was in mid cycle...I never got hit once. When she was gone...BLAM. I attributed it to stress as that was always a "protective"....so grief post stress could very well be a trigger....dunno... Best Jon GO EAGLES! Quote Link to comment Share on other sites More sharing options...
fiftyamp Posted February 22, 2018 Author Share Posted February 22, 2018 Thanks, Jon! Going Chronic is the biggest fear I have. I'm not a regular Imitrex user, but I used it twice this time. I suspect that may have contributed to the change(no evidence of that though). I wish I could bust now, but the older I get, the harder it is to find MM. The ones I have now are about 4yrs old and I think they lost their 'magic'. Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted February 22, 2018 Share Posted February 22, 2018 Hey Fifty! 185 ng/ml is way high from what I've seen! 80 to 85 ng/ml is the therapeutic level for most folks doin the D3 regimen! Batch is a regular contributor here so you might shoot him a pm for some suggested tweaks! Dallas Denny 2 Quote Link to comment Share on other sites More sharing options...
jon019 Posted February 22, 2018 Share Posted February 22, 2018 fifty....re chronic...a repost of previous.... "My greatest fear over 23 yrs of episodic was that it would become chronic. I was obsessed with the thought. Used to dismiss comments on ch.com that chronics preferred it to episodic.... thought they were nuts. Then it happened.... and the reality was FAR less than the fear of the unknown had led me to believe. Hits were lighter, aborts worked better, triggers were reduced or went away, depression lessened. It still aint no damn fun...but if ya got the right attitude, a plan and the right tools..... it's controllable." You can ALWAYS come here.....BIG ears!.....some are under a cowboy hat................................ Best Jon 2 Quote Link to comment Share on other sites More sharing options...
zgreek Posted February 23, 2018 Share Posted February 23, 2018 Hey fiftyamp, in response to your question about becoming chronic, with the start of a new cycle preceding one just finished, I feel your anxiety and pain. This is something that happened to me for 5 consecutive years, in the fifth year I 3peated my cycles. I was at a loss, didn't know what to do. I found this community of knowledgeable and caring people. Through much trial and error(and pain) I managed to limit my cycle in that sixth year to just once and go from 16 weeks to 11. The one thing I've learned about CH is that what happens in your past cycles does not always hold true for future cycles. As many here will tell you, things change, meds stop working, time of hits change, quality and quantity of hits change, its a real bitch. Don't throw in the towel about becoming chronic, remind yourself that in just a few weeks it could be over. If you have kept your vitamin M frozen, I what use them. If it has not already been mentioned, you can order LSA seeds, same concept as vit M without the trip. Hang tough 2 Quote Link to comment Share on other sites More sharing options...
fiftyamp Posted February 23, 2018 Author Share Posted February 23, 2018 Thanks, all! Unfortunately, I didn't store the Vitamin M in the freezer, but I do think a buddy grabbed some for me today. This cycle just has me on edge because my cycles have always been the same, ending 3 weeks on the dot. I don't know where I'd be without these boards. It's where I learned about the MM, D3, Red Bulls, etc. Quote Link to comment Share on other sites More sharing options...
xxx Posted February 28, 2018 Share Posted February 28, 2018 Hey 50Amp, There's nothing wrong with a serum 25(OH)D at 184.5 ng/mL as long as your serum calcium remains within its normal reference range and your PTH is in the lower third of its normal reference range. My serum 25(OH)D concentration has averaged 140 ±50 ng/mL over the last 3 years and has been as high as 200 ng/mL. My serum calcium has remained within its normal reference range the entire time... The bottom line is I take as much vitamin D3 as I need to stay CH pain free but keep my PCP/GP in the loop with frequent labs for my serum 25(OH)D, calcium and PTH. As long as my serum calcium remains within its normal reference range, I'm good to go at the resulting 25(OH)D serum concentration. If I suspect an allergy is causing CH burn through, I take a week's worth of Benadryl (Diphenhydramine HCL) at 25 mg every 4 hours during the peak pollen periods. Take care and please keep us posted. V/R, Batch Quote Link to comment Share on other sites More sharing options...
fiftyamp Posted March 1, 2018 Author Share Posted March 1, 2018 Thanks, Batch! The 185 number scared the hell out of me. My Calcium level was at 10, and the Dr didn't seem too concerned. I have stopped the d3 for now. Quote Link to comment Share on other sites More sharing options...
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