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Joshua

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Painful lesson
Feb 5^th, 2016 at 10:16am

I guess I'm just sharing this because it's been a while since I've felt like this, and I forgot how fast this condition can derail life.

I was borderline chronic for most of 2013 after years of episodic clusters, and managed to get the beast under control with a Prednisone taper and Verapamil, and was PF for most of 2014 and 2015. I thought it might be time to taper off the Verap, b/c who likes to take pills they don't need?

After about 3 weeks of no Verap, I'm getting daily hits again, multiple times. I'm very sad, disheartened that I thought I had broken a long cycle, but haven't, and also kicking myself for even attempting to tempt fate by going off the meds.

Now I'm back on the Verap, waiting what seems like ages (and hoping that it does) for it to kick in.

I'm very grateful this group is here.

Joshua

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« Last Edit: Feb 5^th, 2016 at 10:17am by Joshua »

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Peter510

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Don't give out... But
don't give in.

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Re: Painful lesson
Reply #1 - Feb 5^th, 2016 at 10:50am

Joshua,

I'm a chronic like you, since about 2012. Episodic up to then.

But there is a reason why you should not be disheartened. I have been taking Batch's D3 regimen since January 2015 and life is great. Yes, I still get minor hits, but nothing that can't be managed easily with an energy drink or O2.

Read up on it in the medications and treatments section, under the thread"123 days pain free...".

There's a lot of reading but it will be worth your while. Then, ask as many questions as you need.

Then get on it!!!!!!

Keep well,

Peter.

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« Last Edit: Feb 5^th, 2016 at 10:51am by Peter510 »

You don't stop laughing because you grow old....You grow old because you stop laughing.

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MDR CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 265 Elysburg Pa. Gender:	Re: Painful lesson Reply #2 - Feb 5^th, 2016 at 10:51am have you looked into the D-3 vitamin regiment Mark
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Joshua

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Re: Painful lesson
Reply #3 - Feb 5^th, 2016 at 10:55am

I did try this regimen, and had gone back and forth with Batch with some of my blood results. I didn't find it gave me much relief, but I was getting so many hits back then I can't be 100% sure I really gave it enough time or patience. I see it works for a lot of people, so I think I will have to try it again.

I think some of the other CH meds I was taking made the absorption less than ideal- so that may have been a reason I didn't follow through as I wasn't willing to stop taking them.

I'm going to read up on it again now though.

Thanks, guys.

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: Painful lesson Reply #4 - Feb 5^th, 2016 at 11:18am My starting it in 2015 was also a second attempt. Admittedly, the first attempt was pretty half hearted and I'm sure I didn't do it right. Certainly worth a second effort AND discuss it with you Doctor as the calcium in the D3 regimen and Verapamil may not sit well together. Best of luck. P.
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anubis44

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Re: Painful lesson
Reply #5 - Feb 14^th, 2016 at 11:20pm

Joshua wrote on Feb 5^th, 2016 at 10:16am:

I guess I'm just sharing this because it's been a while since I've felt like this, and I forgot how fast this condition can derail life.

I was borderline chronic for most of 2013 after years of episodic clusters, and managed to get the beast under control with a Prednisone taper and Verapamil, and was PF for most of 2014 and 2015. I thought it might be time to taper off the Verap, b/c who likes to take pills they don't need?

After about 3 weeks of no Verap, I'm getting daily hits again, multiple times. I'm very sad, disheartened that I thought I had broken a long cycle, but haven't, and also kicking myself for even attempting to tempt fate by going off the meds.

Now I'm back on the Verap, waiting what seems like ages (and hoping that it does) for it to kick in.

I'm very grateful this group is here.

Joshua

Joshua, please have a look at my 'D3/Vimovo/Melatonin' thread on this forum. Having been on Verapamil myself, it may just provide a better alternative than Verapamil for you.

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« Last Edit: Feb 14^th, 2016 at 11:21pm by anubis44 »

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Painful lesson Reply #6 - Feb 15^th, 2016 at 2:57am Hi Joshua, When in a cycle the vitamin D regimen doesn't always work for everyone, myself included, so stay on it and hopefully you won't be bothered by the ever again! I've been pain free for the past 3yrs. Good Luck Hoppy
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maryo

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Re: Painful lesson
Reply #7 - Mar 8^th, 2016 at 9:38pm

Joshua, I'm right there with you. Fortunately I respond well to verapamil, which is lucky because my Bp tends to be low and lots of verapamil doesn't go too well. But I crossed over from episodic to chronic. I should've seen it coming when I had two episodes a year for two years, but who wants to see themselves as having an even worse condition than EC? Yes, the sense of defeat with a bit of self-pity thrown in is an old familiar feeling.

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Stevo CH.com Newbie Offline I Love CH.com! Posts: 14	Re: Painful lesson Reply #8 - Mar 9^th, 2016 at 8:55am I was chronic also and started the D3 in 2014, it took around 6 months for me for it to really kick in. But kick in it has, still get shadows occasionally but life for me is worlds apart from 2 years ago. Get all the vits in the right doses and stick to it religiously...then most importantly persevere.
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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: Painful lesson Reply #9 - Mar 9^th, 2016 at 2:49pm Stevo says: "Get all the vits in the right doses and stick to it religiously...then most importantly persevere." +1
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