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23 Jul, 2013 - 2:59 pm

hi all, well ive been a member here since January, which was my worst attack ive experienced. I was diagnosed about 3 or 4 years ago, but with little help from neurogists. one gave me neurophin and fast release verapamil, which didn't work, I stumbled across to my doctor who introduced me to imagran, wow some relief ! I returned to the neurologist who went ballistic about me taking imagran, he didn't believe in any abortive drugs, I bought up oxygen, which I had researched, he basically said if you use oxygen or take imagran he would not keep me as a patient !! I nearly put him thru his office window.
thankfully I found a brilliant neurologist here in melboune, who put me on the appropriate dosing of verapamil and gave me a prescription for oxygen.
I found the American site and have been on batches vit d regime for about 2 months now,started it when my last cycle started and with the help of my local doctor and serum tests, went thru my last cycle with a reduction in intensity. im looking forward to my next cycle, which hopefully will be a non event as my levels are now sitting in the correct zone to hopefully be one of the lucky ones to go pain free. learnt about the use of red bull, which fully aborted 50 % of my ch's or at least gave me a couple of hours grace, to race home and take an imigran f.d.t.
ive learnt so much in the last 6 months or so, unfortunately I had to go thru it alone until I found these forums and found a decent doctor and neurologist.
had many many bad sporting injuries over my years, broken many bones but this infliction outstrips any of those two fold. best part is knowing there are others out there, unfortunately with the same affliction. any of you contemplating batches regime but are unsure on when and how, please ask, I can give you my experiences on it, every ones different, but there are some little tricks which can help to tolerate the different vitamins.
anyway, look forward to talking and meeting others.....
kindest regards
colin

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24 Jul, 2013 - 2:03 pm

Hi Colin
Welcome to the site but sorry you had to come looking..
Glad you are sorted with a neurologist and have organised appropriate drugs + oxygen. Sadly it's a common story of CH sufferers being put through the wringer before finding a GP / specialist who takes the condition seriously.
Also pleased Batch's regime is working for you - works for me too! But I'm not going to go so far as to say "I'm looking forward to my next cycle..." ha ha
Anyway Colin, welcome aboard and I'm sure the others will chime in with their welcome over the next day or two
Take care
Sara

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26 Jul, 2013 - 5:39 am

Hi Colin (and Sara),

good to hear you're finding relief Colin. Looking forward to a bout is a new one on me- i hope you don't have an unpleasant surprise.
As Sara said- you will have to adapt any regime to fit yourself. Keep a record of what works (or doesn't). It gives your doctor more to go on, and shows you're pro-active in managing your condition.
You did the right thing in ditching your crap neuro- if they're no help, find one that is.
Best wishes to you.
chers peter.

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28 Jul, 2013 - 11:23 am

thanks for the welcome guys.
probably should have phrased " looking forward to the next cycle" a bit better LOL
but for me, I sort of am, with regards to wanting to see how effective this vit. regime is. I commenced the regime 2 weeks into my last cycle, plus I was on verapamil for 4 months continually pryor to the cycle, so I will be waiting and hoping, minus the verapamil but all juiced up with vit d.
until now, ive dreaded and counted down the minutes until a new cycle starts, even loosing sleep before hand waiting for the impending beast to rear its head, its really dictated my life, as you all are aware, and the anticipation wears heavily.
so, I guess my need to see if the regime can truly reduce or even make me pain free as many have experienced, has made me eager to find out and that's why I cant wait for the next cycle to get the answer.
of course, all the regular meds are at hand and a prescription for oxygen, which so far I haven't used, but sure am hoping I don't need to get it.
regards
colin

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