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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #150 - Oct 24^th, 2013 at 3:05am Hi Falcon, Some folk take 25,000iu /day of vitamin D and a loading of 50,000iu once a week.Plus the other co-factors daily. I'm sure flax/borage would be ok. Then when they are cluster free drop back down to 10,000iu vitamin D. Hoppy.
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Chuffy

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Re: Anti-Inflammatory Regimen and Survey
Reply #151 - Oct 24^th, 2013 at 9:47am

Hi Folks
I am Episodic and I have been on the basic regimen (D3, Calcium, Omega 3) for about a year now and have been totally PF so far. I usually get at least two bouts a year.

My questions are:
Is it best to stay on it or stop and start again at the sign of a cluster??

Also, looking back at Batch's first post giving the regimen levels it says - Omega 3 - 360mg EPA and 240mg DHA, but he then advocates taking two of the capsules in the picture, which would give double that dose. I have been taking two, should I just cut back to one?

Thanks
Rob

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #152 - Oct 24^th, 2013 at 9:51am I have been on it for over 3 years, pain free for those 3 years after over 30 years as an episodic. It's a permanent part of my life now. I take 5,000 D-3 a day, for me that's the magic number. As to the fish oil, I do one 1200 unit pill with dinner. Joe
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Falcon

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Re: Anti-Inflammatory Regimen and Survey
Reply #153 - Oct 24^th, 2013 at 6:55pm

Hoppy wrote on Oct 24^th, 2013 at 3:05am:

Hi Falcon,
Some folk take 25,000iu /day of vitamin D and a loading
of 50,000iu once a week.Plus the other co-factors
daily. I'm sure flax/borage would be ok. Then when they
are cluster free drop back down to 10,000iu vitamin D.

Hoppy.

Thanks Hoppy!

Tomorrow after work - vitamin shopping!

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Re: Anti-Inflammatory Regimen and Survey
Reply #154 - Oct 24^th, 2013 at 9:22pm

Chuffy wrote on Oct 24^th, 2013 at 9:47am:

Also, looking back at Batch's first post giving the regimen levels it says - Omega 3 - 360mg EPA and 240mg DHA, but he then advocates taking two of the capsules in the picture, which would give double that dose. I have been taking two, should I just cut back to one?

If your family has any history of heart disease, it cannot hurt to take a higher dosage of Omega-3 fatty acids.

I stay on this regimen year-round.

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« Last Edit: Oct 24^th, 2013 at 9:22pm by Brew »

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zelenka CH.com Newbie Offline I Love CH.com! Posts: 1	Re: Anti-Inflammatory Regimen and Survey Reply #155 - Oct 25^th, 2013 at 3:35am Hı Batch; ThaNk you for your suggestions about CH. I am an episodic CH sufferer. I will try the regimen but there is one question in my mind whether I will use this regimen during attack term or every day of life. Thank you again for your efforts.
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #156 - Oct 25^th, 2013 at 3:48am Hi Zelenka, Batch is on vacation. The answer to your is yes. For the rest of your life. Hoppy.
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Marius CH.com Newbie Offline I Love CH.com! Posts: 15 South Africa Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #157 - Oct 25^th, 2013 at 6:21am I'm gone give this a try
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shooky

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Re: Anti-Inflammatory Regimen and Survey
Reply #158 - Nov 2^nd, 2013 at 1:20pm

My current cycle started about 3 weeks ago and it's really strange.

Previous cycles (for the past 6-7 years) included mainly nocturnal hits, ONE (never more) KIP6-8 attack every night, which I was usually able to abort with O2 + energy drinks + a tryptan every now and then. Daytime hits were rare, although I did have constant shadows.

This year, after finding out I was D3 deficient I started taking D3 - 5000IU + a decent time in the sun every day. Plus magnesium, zinc and the other co factors through diet.

Went into full D3 regimen as soon as the new cycle started (haven't had my D3 checked lately though). I also take melatonin, which I also did in recent cycles.

Now for the funny part:

I have 2-3 day of both daytime and nighttime hits (some nights 1, others 2). Then a night or two (or even three) with no hits at all, and less or no daytime hits as well. And so forth.

Some attacks are easy to abort, others are really sticky and won't go away. Going to try upping the dose to 15000IU + a loading dose strait after getting lab test results.

Any thought?
Any explanation for the new pattern?

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« Last Edit: Nov 2^nd, 2013 at 1:29pm by shooky »

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Batch

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Re: Anti-Inflammatory Regimen and Survey
Reply #159 - Nov 3^rd, 2013 at 10:55am

Hey Shooky,

Your CH pattern is not uncommon while ramping up on vitamin D3. The hit and miss nature of your hits appears to indicate you've got your 25(OH)D near the minimum therapeutic level to experience a PF response.

Bumping the daily intake to 15,000 IU/day plus the weekly loading dose should prove rewarding for you.

My only suggestions at this point is to bump your maintenance dose of vitamin D3 to 10,000 IU/day when out of cycle. This should buy you a higher level of 25(OH)D reserves to make the next episodic cycle less problematic. It would also be prudent to see your PCP or neurologist for the 25(OH)D lab test now and a month or so prior to your next cycle.

Take care and please keep us posted.

V/R, Batch

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shooky CH.com Veteran Offline 33 years of CH. Posts: 193 TLV Israel Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #160 - Nov 4^th, 2013 at 5:27am Batch, thanks! I sure will.
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sue_g

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Re: Anti-Inflammatory Regimen and Survey
Reply #161 - Nov 4^th, 2013 at 5:48pm

Hi Batch and all, An update to our last conversation.

To recap:
I started the D3 Regimen mid September
Test results:
Sept 25 = 86 nmol/L
Oct 11 = 170 nmol/L = (68 ng/mL) needs to be a little higher.

Sept 20 to Sept 27th took 7000 D3/day

Sept 28th to Oct 30th took 25,000 D3/day.

Tapered off of Verapamil slowly, last day was Oct 27th, 2013 with advise from Neuro. (tx batch)

Oct 31st, dropped D3 intake to 15,000/day. (only to be cautious because my Neuro worried me about hypercalcemia. Obviously I'm fine, I know he doesn't understand the Anti Inflammatory regimen and because I'm new at this, he freaked me out.)

Pain free continues, next 25(OH)D test this Friday, Nov 8th. I will update as soon as I get my results.

Here's my concern:
Early this morning (Nov 4) and thru out today, I've experienced a strange feeling (pressure) around my left temple, which is the opposite side of my last CH cycle. It's nowhere painful, however when I turn quickly or bend down it bothers me. I can't say its exactly like my "shadows", put it is there hangin out and concerns me.

I can't wait to here what my next 25(OH)D result is.

Shall I bump up my Vit D3 for the next few days? I'm thinking I should, or shall I wait and be patient.
Your thoughts?
tx so much, sue

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Vinnie CH.com Newbie Offline I Love CH.com! Posts: 14	Re: Anti-Inflammatory Regimen and Survey Reply #162 - Nov 4^th, 2013 at 7:01pm Sue, for what it's worth, I consider that pressure feeling to be a shadow. At least that's how my cluster shadows seem to manifest themselves, sometimes for about a week.
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Re: Anti-Inflammatory Regimen and Survey
Reply #163 - Nov 4^th, 2013 at 7:48pm

thanks Vinnie... I increase my D3 tonight to 30,000.
Also, thinkin about the post Batch had wrote.. I can't locate it at the moment.. But he mentioned to make sure the Vit D3 label is approved by the FDA.
I noticed the "Spring Valley" brand from Walmart in the U.S.A. doesn't mention anything. Only mentions quality assurance, verified an independent ISO 9001:2000 certified laboratory.
I think I maybe in trouble Sad

thanks for your comment
Sue

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sue_g CH.com Junior Offline I love YaBB 1G - SP1! Posts: 76 x0\|Gananoque\|Canada\|\|0\|0\|ON,Ontario Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #164 - Nov 5^th, 2013 at 5:38am Ended up last night topping my D3 to a total of 50,000iu's, feel much better this morning, just a slight annoyance, nothing to complain about. I'll continue today with 20,000/day see how that works for me. Friday Nov 8, I will have the 25(OH)D test, which will be 4 weeks since since the last one. thanks all
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Batch

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Re: Anti-Inflammatory Regimen and Survey
Reply #165 - Nov 5^th, 2013 at 1:45pm

Hey Sue,

Thanks for the update. I’ve had to up my daily vitamin D3 intake to remain PF over the last two months as well. I’m bouncing between 15,000 and 20,000 IU/day.

I suspect my increased requirement for vitamin D3 is due to a sub-clinical (no obvious symptoms) allergic reaction from leaf mold spores… The Maple and Alder trees around the house are almost completely bare, but I’ve been out with the leaf blower several times over the last few weeks trying to clear the yard and driveway. We’ll see what happens when the air clears…

Walmart’s Spring Valley Vitamin D3 is likely ok… I did some checking… Walmart’s Spring Valley Vitamin brand sources their vitamins from Nature's Bounty, Perrigo, Pharmavite, Schiff Nutrition, IVC (International Vitamin Corporation) and Robinson Pharma… not sure which of these companies provides the vitamin D3.

Their Q&A section states their vitamin D3 is sourced and manufactured here in the US, but they indicate some of the raw materials do come from China…

There’s likely a lot number and date associated with the vitamin D3 liquid softgel capsules that may help identify the original manufacturer.

Their ISO 9001:2000, a Quality Management System, is also out of date… It’s now ISO 9001:2009.

Take care and please keep us posted with your 25(OH)D lab results. I’m due for my next test in December.

V/R, Batch

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sue_g CH.com Junior Offline I love YaBB 1G - SP1! Posts: 76 x0\|Gananoque\|Canada\|\|0\|0\|ON,Ontario Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #166 - Nov 5^th, 2013 at 3:32pm Thanks for your reply Batch! I should have thought of researching the manufacturer.
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #167 - Nov 6^th, 2013 at 10:12pm The beast is circling. Only shadows at present. My last test was 67.4 ng/ml. I'm upping my vitamin D-3 to 20,000iu daily, plus Kudzu 3/day, and Licorice Root 4/day. Hoppy.
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #168 - Nov 11^th, 2013 at 12:47am The shadows have gone. Now i'ts back to 10,000iu vitamin D3, plus the other co-factors. Hoppy.
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TeeJ2379 CH.com Veteran Offline I Love CH.com! Posts: 140 Central PA, USA Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #169 - Nov 15^th, 2013 at 11:51am Asked my Doc for another d3 test - he said he will send me but he says the insurance may not cover it - gonna find out what the lab would charge me out of pocket.
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Batch

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Re: Anti-Inflammatory Regimen and Survey
Reply #170 - Nov 15^th, 2013 at 1:14pm

TeeJ

Thanks for the update... You can order the 25(OH)D home blood spot test kit from ZRT Labs through the Vitamin D Council for $65. I keep two of these kits on hand at all times.

They have a "How To" video to do the collection.

See the following link for details:

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Take care and please keep us posted.

V/R, Batch

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« Last Edit: Nov 15^th, 2013 at 1:15pm by Batch »

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Soul

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Re: Anti-Inflammatory Regimen and Survey
Reply #171 - Dec 5^th, 2013 at 6:33am

Hi Batch and all fellow Clusterheads,

I have been living with the beast for about 8 years. I have tried all sorts of treatment with Verapamil being the latest failure (worked the last cycle but not so much anymore).

I stumbled upon this thread a few months ago and gave it a go for about 2 weeks then went onto a pred taper because I was writing exams and could risk it coming on in an exam. It never really worked so it didn't cross my mind again until now.

I have decided to go the whole hog this time as I really don't have any other options at this point. I went to have my D3 test on Tuesday and got the results back today.

They state:
< 20ng/mL is deficient
20 -29 is partial deficiency
> 30ng/mL is optimal

I came in a a whopping 13ng/mL. I guess that is what one gets working is IT and spending days in the Bat Cave instead of the sun.

I have learnt very long ago to not get my hopes up when a treatment works because the next time the beast circumvents it and nails you.

With my D3 so low and the other peoples' feedback here I am only cautiously optimistic. I am ready to commit and I will push through. I will have a test again next month to see if this regimen is raising those levels.

My only concern is I am still on the Verap as I do think it is keeping me down to one KIP 6 hit a day so I still have my reservations about stopping it so as to not interact with the calcium.

I will keep you posted and any more advice would be appreciated.

Thanks!

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Rumeke CH.com Veteran Offline Posts: 173 Westfield, NC Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #172 - Dec 5^th, 2013 at 11:24am To Hoppy!! Fantastic news! Judy
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Rumeke CH.com Veteran Offline Posts: 173 Westfield, NC Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #173 - Dec 5^th, 2013 at 11:31am Soul, I am also on Verapamil 240mg twice a day at 7a and 7p. I take my calcium at noon and haven't seen any change. You can check with your PCP for his opinion. As for the D3 regimen..please please give it a try! Hopefully BATCH will chime in with a plan for you. It worked for me and a ton others. Judy
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Batch

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Re: Anti-Inflammatory Regimen and Survey
Reply #174 - Dec 5^th, 2013 at 4:23pm

Hey Soul,

Thanks for the headzup you're starting the anti-inflammatory regimen again... This time armed with more determination and the results from your 25(OH)D lab test.

For starters, the deficiency/insufficiency figures put out by the Institute of Medicine are meaningless for all but rickets, osteomalacia and osteoporosis...

The vitamin D3 experts and Jedi Masters of vitamin D3 therapy say any 25(OH)D serum concentration less than 50 ng/mL, (125 nmol/L) is deficient. They also say the optimum serum concentration is 60 to 70 ng/mL in order to take advantage of the full potential of vitamin D3.

See the following link for some fascinating reading about RCTs finding a long list of health problems either prevented or successfully treated with vitamin D3:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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For us as CH'ers, our target 25(OH)D serum concentration needs to be 85 ng/mL or a range of 60 to 110 ng/mL for a therapeutic cluster headache response. An average 25(OH)D serum response in this rage requires a vitamin D3 intake of 10,000 as shown in the chart below.

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As you can see the 25(OH)D time course response to dose can take several weeks and up to a couple months to reach a steady state equilibrium.

Accordingly, once you've been on the anti-inflammatory regimen for a couple days to make sure there are no reactions to the supplements, it's best to start an accelerated vitamin D3 dosing schedule to elevate serum 25(OH)D as rapidly as possible into the "green zone." This is where 80% of the CH'ers on this regimen experience a favorable response with a significant reduction in the frequency, severity and duration of their CH.

This vitamin D3 dosing schedule amounts to taking a total of 590,000 IU vitamin D3 over a 4 week period while keeping the other anti-inflammatory supplements at the same dose. The average 25(OH)D response is 60 ng/mL over the starting concentration.

The suggested dosing schedule starts with 20,000 IU/day vitamin D3 for two weeks plus a 50,000 IU loading dose once a week on top of the daily 20,000 IU/day dose. At the start of the third week drop the loading dose and lower the vitamin D3 intake to 15,000 IU/day... Continue this dose for two weeks then see your PCP for another 25(OH)D lab test.

If the results of this lab test come back at 80 ± 5 ng/mL, lower the vitamin D3 intake to a maintenance dose of 10,000 IU/day.

If the 25(OH)D lab results come back < 70 ng/mL, stay at 15,000 IU/day vitamin D3 for another week then drop back to the 10,000 IU/day maintenance dose.

Data from the online survey of 110 CH'ers using this regimen indicate 80% respond with a significant reduction in the frequency, severity and duration of their CH.. The response rate chart shown below shows 60% of them responded to this regimen within the first week and 90% responded within the first month.

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Take care and please keep us posted,

V/R, Batch

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« Last Edit: Dec 5^th, 2013 at 4:24pm by Batch »

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

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