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112 days Pain Free! Thanks to Batch & other CH'ers (Read 2499 times)
scabtrapper
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112 days Pain Free! Thanks to Batch & other CH'ers
Feb 21st, 2014 at 7:01pm
 
Its been about 112 days PF! I was really hesitant to post but have to thank Batch and the other folks on CH...Mike NZ, Guiseppi etc etc! Grin Grin

On Sept 24th, I started the D3 regimen and had some relief. Then I had some bad attacks (KIP >7) so I upped the daily intake to 15000 IU with a one time 25000 IU dose along with continuing the calcium citrate and fish oil.

On Oct 2nd, my doctor did the 25(OH)D test with some encouragement and my 25(OH)D level was 35ng/ml.

In November, my neuro started me on verapamil and said keep doing what I'm doing on D3. Had only 2 shadows-clusters over the next 3 months that I aborted with oxygen. Been taking the D3 regimen daily with 10000 IU D3. Dropped down to 5000 IU one week around christmas and felt the shadows so went back up to 10000 IU. Nothing since then. My 25(OH)D test last week was 62 ng/mL. I probably need to†do another D3 boost or up my daily intake. But overall feeling OK and PF. Other thing I noticed is less aches and pain...hardly use ibuprofen at all anymore.

Hope others can be helped and PF from CH. Thanks to all who offered their help and advice.
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Batch
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Re: 112 days Pain Free! Thanks to Batch & other CH'ers
Reply #1 - Feb 22nd, 2014 at 11:41am
 
Hey Scabtraper,

Thanks for the feedback on your experience with this regimen.† Having two CH'ers, one episodic and the other chronic, come out of the blue on the same day singing the same song about their response to the anti-inflammatory regimen is a treat!†

Every time I read posts like yours that give the dosing history, it confirms the efficacy of this regimen and the dosing schedule we're using...

My only question now is are you still taking verapamil. Most of us chronic types have found it's no longer indicated once we're up on this regimen and pain free.

The lab tests for 25(OH)D are important.† Once tests indicate you've reached a stable serum concentration, a test every six months to once a year should be sufficient.

If you have the time, please take the online survey.† You can find it at the following link:

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I you have any questions about the survey check out the following link:

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Take care and thanks again for sharing your experience with this regimen.†

V/R, Batch

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« Last Edit: Feb 22nd, 2014 at 11:45am by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Zd10
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Re: 112 days Pain Free! Thanks to Batch & other CH'ers
Reply #2 - Oct 16th, 2014 at 12:11am
 
Batch, this is for you. If there is an example of how one person can make a difference it is you. First, I want to thank you for all the time you have dedicated to cluster headache sufferers by posting the information regarding the vitamin D, fish oil, anti inflammatory regimens. I was first diagnosed at 14. As a female, it took 3 years to properly get diagnosed, only bc I was fortunate enough to live close to the Cleveland Clinic where my mother found Dr. Kunkel, who was well versed at that time on cluster headaches. Prior to that, everyone said I didn't fit the mold(late onset in men). I have had cluster headaches every year, every spring for 4-6 months for25 years. I have been on every medication from depakote, verapamil, lithium, etc, etc all with such wonderful side effects. I came across your post as I scoured the web to see if there were any new treatments, as I was getting married and wondered how I could ever think of having children knowing I would most assuredly get the headaches. After reading your posts I thought, what do I have to loose. At the time, I was in a 6 month episode, and with my episodes, the headaches were basically all day unless I found a medication to provide temporary relief. I work at a hospital so I was fortunate to get some relief with oxygen. I could not believe, after the first day of taking your regimen, the pain subsided significantly.† My headaches usually built quickly to a kip 10 if it didn't take any medication. I'd often pack my head in ice to try and numb my head...which really didn't work.† By the second day, I only had a kip 4-5 that lingered all day, but was bearable. By day 3, I was pain free. I have been pain free for 11 months. The longest I've been pain free since I was 14 years of age.
I offer you the most sincere thank you Batch. You have given me my life back. You have opened up a future for me that is not dictated by cluster headaches. Thank you for all your work and effort and for sharing it with us and giving us hope! And one other thing, I also read the info on vitamindwiki.com ....thank you for your service!
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« Last Edit: Oct 16th, 2014 at 12:14am by Zd10 »  
 
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Batch
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Re: 112 days Pain Free! Thanks to Batch & other CH'ers
Reply #3 - Oct 16th, 2014 at 8:09am
 
Zd10,

Wow...† What a wonderful post.† Welcome to CH.com and thank you for sharing your experience with this regimen... and for the kind words.† They mean a lot.†

When I read your post last night, your words brightened up what had been a rather gloomy day and put a smile on my face that's still there this morning.

It's posts like yours that gets the wall flowers and strap hangers suffering needlessly from CH, motivated to give the anti-inflammatory regimen a try.

If you're still thinking about having children...† My daughter is about your age.† She doesn't have headaches... but I got her started on the anti-inflammatory regimen a couple years ago... Her husband went on it as well...†

I'd pretty much given up on her having any children... so we were pleasantly surprised on Christmas day when she announced she was pregnant...† On the 4th of July, she blessed us with our 7th grandchild and 2nd granddaughter...†

The entire pregnancy and delivery were trouble free...† Her OB was initially a little concerned with her taking 10,000 IU/day vitamin D3... but all her labs were in the green and so were the baby's...† He's now got all his expectant ladies on this regimen...

Her new pediatrician told her the baby would need supplemental vitamin D3 because she was breast feeding...† but he gulped back his words when my daughter whipped out a copy of her latest labs indicating her 25(OH)D serum concentration was 78 ng/mL.

Take care and thank you again for sharing such a wonderful post with us.

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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