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Chuffy CH.com Veteran Offline It's just a ride. Posts: 135 x0\|\|United_Kingdom\|\|\|\| Gender:	Re: 123 Days PF And I Think I know Why Reply #1725 - Feb 17^th, 2014 at 6:41am Thanks Batch. One thing I keep forgetting to mention is that my partner, who is a Migraine sufferer, usually getting hit once a month or so, has also been taking D3 and Omega3 (and now K2) as long as I have and hasn't had a single Migraine attack in that time. Which is also a bit of a result!
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1726 - Feb 17^th, 2014 at 12:57pm

Hey Chuffy,

That is great news! It appears the anti-inflammatory regimen is equally effective in preventing migraine headaches... if not more so.

I've been trying to keep track of a dozen migraineurs who have been taking this regimen over the last three years including my wife who has been on it since December of 2010... So far this regimen is working spot on with no sticky wickets...

If pressed for a raw number... I'd say this regimen is at least 90% effective in preventing migraine headaches. That's anecdotal given the small number of migraineurs, but none the less, still very promising.

Take care and thanks for the update.

V/R, Batch

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Re: 123 Days PF And I Think I know Why
Reply #1727 - Feb 17^th, 2014 at 2:21pm

Sorry to spike the migraine record, but whilst D3 works amazing for my CHs, it doesn't seem to help with my migraines.

I've been following the D3 route for about 3 years with no CHs in the last 2 and only 10 in the previous year. But 194 migraines in the last two years although the frequency has dropped now to once every 7 weeks or so.

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nhs CH.com Junior Offline I Love CH.com! Posts: 63	Re: 123 Days PF And I Think I know Why Reply #1728 - Feb 17^th, 2014 at 4:13pm Hi, Today It's 5 years since I got my last CH hit. I take 5.000 IU vitamin-D3, 500 mg Magnesium and 50 mg Zinc Picolinate. My wife who suffered from migraine has been migraine free for 4 years.
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Re: 123 Days PF And I Think I know Why
Reply #1729 - Feb 17^th, 2014 at 4:17pm

Hey Mike,

I've been tracking your posts... You're part of the 10% whose migraines don't respond to this regimen.

CH'ers appear to experience a lower effectivenss with this regimen in preventing migraine headaches than they do with their CH...

The numbers are too low to be significant, but it also appears women have a better success rate than men using this regimen to prevent migraines.

Take care,

V/R, Batch

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Re: 123 Days PF And I Think I know Why
Reply #1730 - Feb 18^th, 2014 at 1:21pm

I received my Kirkland Mature 50+ Multi and it say's it only contains 161.9mg of calcium?? I doubt they make different tabs for the UK market, maybe the labelling is just different.
So......does that mean I should still take one of the Kirkland Calcium Citrate tabs?

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Re: 123 Days PF And I Think I know Why
Reply #1731 - Feb 18^th, 2014 at 4:27pm

Hey Chuffy,

Interesting... and I don't have a good answer for the difference in formulation unless it's a special formulation for the UK and EU.

The Costco page on Mature Multi (Adult 50+) at the link below shows the same 220 mg calcium as the 400 tablet bottle I have.

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The photo of of the Supplement Facts on your Mature Multi (Adult 50+) clearly indicates a different formulation... There's also more magnesium 100 mg in yours vs 50 mg in mine and less zinc 5 mg in yours vs 11 mg in mine.

I don't see any problem taking one of these tablets a day... However, if push comes to shove and the beast starts knocking... take two.

In the mean time, I'll call their Vitamin Infoline to see if they can shed any light on the different formulations.

Take care and thanks for the headzup on this product.

V/R, Batch

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Re: 123 Days PF And I Think I know Why
Reply #1732 - Feb 19^th, 2014 at 6:56am

Hi,

I'm not a CH sufferer but a chronic migraineur and I also suffer with chronic body pain. My migraines are a little different in that my headaches are generally mild but I suffer predominantly with vertigo which started in 2008 and has never left. I recently came across a fascinating website by a US neurologist (I am in the UK by the way) called Dr Gominak. Her lectures on youtube are simply brilliant. Shame I can't post a link to her website.
She discovered the connection between neurological disorders and vitamin D in her patients by accident. When she got patients vitamin D levels to 60-80ng/ml she saw huge improvements in people with epilepsy, migraine, headache, parkinsons disease etc. I started a supplement of 5000 iu a day after reading her website and then after reading Dr Holick's work increased to 7,000 iu a day. After reading this website and the simply amazing results I have just started 10,000 iu per day. I already take magnesium, zinc and a multi vitamin plus I eat a great diet. I found I could do a Vitamin D blood test by post in the UK for £25 so I did this and got tested two weeks after starting the 5000 iu dose. My number came back as 30ng/ml. I plan to test again towards the end of March. I desperately want to get over 60ng/ml. I think it's been a downward spiral for me because when my migraines became chronic it was like a switch was flipped and I felt worse in the sun so I spent every summer indoors. Then the chronic body pain started two years after no sun exposure.
I have been reading this thread with great interest, so far I am up to page 32!!! Just thought I should introduce myself and really hope you don't mind that I don't have CH but am posting on here.

Kath

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Re: 123 Days PF And I Think I know Why
Reply #1733 - Feb 19^th, 2014 at 8:00am

Hi KathMav, Interesting post, thanks for the info

I'm an epiosodic CH person, I've been on the Anti Inflammatory Regimen since Mid Sept 2013, no CH's! Also I'm trying to stick to the GOMBS diet, more often. I also take regular 25(OH)D and PTH tests to ensure I'm in the right range.
My Father had Parkinson's, I'm sorry I hadn't reviewed this information earlier. I truly feel there is a lot to be said about this, thanks to Batch, I'm speechless. Smiley

sue

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Re: 123 Days PF And I Think I know Why
Reply #1734 - Feb 19^th, 2014 at 6:25pm

Hey Kath,

Welcome to CH.com and good on you for starting the anti-inflammatory regimen... Don't be afraid to use the accelerated vitamin D3 dosing/loading schedule... It can make this regimen work even faster in preventing your migraine headaches....

Dr. Gominak is clearly a vitamin D disciple... and an important one at that, given she's also a neurologist.

Her website link follows:

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The link to her You Tube video presentations on Sleep and Vitamin D also follows:

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It's encouraging to hear a neurologist suggest naturopathic treatments like vitamin D₃, vitamin B₁₂ and sleep instead of the time worn, mainstream treatments with calcium channel blockers and anti-seizure medications that may or may not work to prevent migraines and all of which carry undesirable side effects.

I hope you find the anti-inflammatory regimen as effective in preventing your migraines as CH'ers do in preventing CH.

The numbers of migraineurs I'm tracking is limited... That said, 13 out of 16 have found relief with this regimen... so the track record is looking good... BTW, the three migraineurs who didn't respond are also CH'ers... and men... 'Not sure what that means at this point...

You can find the list of supplements and dosing recommendations for the anti-inflammatory regimen at the following links:

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Take care and please keep us posted.

V/R, Batch

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Chuffy CH.com Veteran Offline It's just a ride. Posts: 135 x0\|\|United_Kingdom\|\|\|\| Gender:	Re: 123 Days PF And I Think I know Why Reply #1735 - Feb 20^th, 2014 at 4:50am Wow, just watched Dr. Gominak's videos, I think we can safely say she gets it!
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Re: 123 Days PF And I Think I know Why
Reply #1736 - Feb 20^th, 2014 at 6:00am

Hi again,

Thanks for the welcome. Just a quick question, for those in the UK on this regime which particular fish oil are you using? I'm looking at the Holland and Barrett website and a bit baffled by the choice.

I love the fact Dr Gominak admits doctors know next to nothing about nutrition, they feel it is below them and dealt with by nutritionists. She is one refreshing Neurologist.

I will definitely let you know how I get on because if it helps other migraineurs who stumble across this site than that's got to be a good thing.

Kath

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Chuffy CH.com Veteran Offline It's just a ride. Posts: 135 x0\|\|United_Kingdom\|\|\|\| Gender:	Re: 123 Days PF And I Think I know Why Reply #1737 - Feb 20^th, 2014 at 6:33am Hi Kath, after a lot of hunting around and review reading I settled on this one as it has good EPA and DHA levels. I take two a day. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Re: 123 Days PF And I Think I know Why
Reply #1738 - Feb 20^th, 2014 at 12:32pm

Hi Kath, welcome here, it is a good place to be and for learning lots. I'm in Ireland and i get all the components of the regimen in the U.S from a site called iherb.com everything is much cheaper than the shops here and probably a good bit cheaper than the U.k too. they have a $4 posting option if the packet is less than 4lb weight.
the fish oil that Batch takes and i too is here

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batch recommends that we take 2 softgels/day

This is the d3 i take and is very cheap. it is 5000iu per softgel, so 2 to 3 /day will do a maintenance dose

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you can buy the whole regimen there in iherb apart from the K2, you can buy the K2 that batch takes and recommends on amazon.co.uk Chuffy found it there.
All the best

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Re: 123 Days PF And I Think I know Why
Reply #1739 - Feb 21^st, 2014 at 3:33am

The only thing to watch out for with the Fish Oil is how much EPA/DHA you are getting per tab.
With the iHerb one you are getting EPA 360 and DHA 240 in 2 tabs.

With the Nature's Best oil you get that in 1 tab! So it in fact works out a lot cheaper, especially if you buy two tubs for £24 as you get free postage on orders over £15.

If you do a bit of research you will find that most experts suggest a daily intake of 1000mg of combined EPA/DHA. So that would be 4 of the Nature Made (IHerb) softgels and two of the Natures Best ones.

As thierry said the rest is on Amazon UK, examples being:
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With the Super K, if you buy from American Vitamin Spot you get 180 tabs for £23.95 post free and it comes from the US, how they do that I don't know but it's a bargain. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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BTW Thierry, what Multi are you using and do you take separate Calcium and Magnesium as well?

The reason I ask is that I'm trying to cut down on the number of tablets for when I'm touring and as the Multis have Cal/Mag in them (albeit in smaller doses than you get from the separate supplements) is there any need for the extras as well.

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KathMav CH.com Newbie Offline I Love CH.com! Posts: 3	Re: 123 Days PF And I Think I know Why Reply #1740 - Feb 21^st, 2014 at 9:36am Thanks so much for the links, I am off to place an order. Does everyone find that they need both the fish oil and the vitamin D to get benefit. I was wondering if anyone found that Vitamin D alone only worked so well but when they added in the fish oil they really got results? Kath
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Re: 123 Days PF And I Think I know Why
Reply #1741 - Feb 21^st, 2014 at 11:05am

Batch,

To summarize, I have been out of cycle for nearly 3 years, I have been taking 15,000 to 20,000 IU's of D3, Magnesium, Calcium Citrate reasonably regular for the entire time. I did drop the fish oil as there is now some link to prostate cancer. I just had my levels checked and was at 78.1. I live in Minnesota and we have had a harsh winter. This is typically the time of year that I get hit with a cycle, March'ish every two years or so. Two nights ago I was hit with a KIP 6 or so and extinguished it with 4 MG of Trex. The next morning I upped my D3 to 50,000 IU's and quickly ordered the oxygen. I have yet to get hit since. I know the beginning of a cycle can be hit or miss, but I think I am going to shoot for a 25 OHD3 level around 120 and see what happens.

Thoughts?

Thanks for your help!

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Re: 123 Days PF And I Think I know Why
Reply #1742 - Feb 21^st, 2014 at 11:10am

Hey Kath,

Good question. As the guy who developed this regimen, it was my experience that Omega-3 Fish Oil provided a noticeable preventative effect when I took it after turning chronic in 2005.

When I added calcium citrate tablets with 800 mg vitamin D3 and most of the cofactors, the CH preventative effect increased... (an average of three to four hits over 24 hours down to one or two). During the summer months with lots of exposure to sun, this combination provided pain free periods up to a week...

When I added a therapeutic dose of vitamin D3, (10,000 IU/day), I was completely pain free in less than two days.

My wife was a chronic migraineur for more than 20 years with migraines hitting once a month for 3 to 5 days... She's not had a single migraine since she started taking this regimen in December of 2010.

It might interest you to know that I've been in contact with Dr. Stasha Gominak, MD since reading your first post. It appears the anti-inflammatory regimen has the same key supplements and doses she prescribes her patients. Being a physician, she also prescribes a few additional injections when needed.

My takeaway after the info exchange with Dr. Gominak, is see your PCP or neurologist to obtain lab tests for 25(OH)D and vitamin B12. She found nearly all of her patients were deficient in both.

The latest clutch of supplements I take for this regimen are shown below. They provide everything you'll need including the vitamin B12 that Dr. Gominak finds important as it works with vitamin D3 to get restful quality sleep. The B-12 is in the Mature Mult along with most of the other vitamin D3 cofactors.

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Take care and please keep us posted.

V/R, Batch

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Mike NZ

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Re: 123 Days PF And I Think I know Why
Reply #1743 - Feb 21^st, 2014 at 3:32pm

Batch wrote on Feb 19^th, 2014 at 6:25pm:

Dr. Gominak is clearly a vitamin D disciple... and an important one at that, given she's also a neurologist.

Her website link follows:

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The link to her You Tube video presentations on Sleep and Vitamin D also follows:

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A very, very interesting video that is well, well worth spending the time to watch. Whilst she does not mention CH specifically, she is covering a lot of neurological issues including headaches, all of which seem to benefit from vitamin D3. She explains her voyage of discovery from initially looking at sleep issues to vitamin B and then to D3.

What really caught my attention was the focus on the D3 levels and not the dose since D3 is not actually a vitamin but a hormone. The level will naturally vary during the year being higher in summer and lower in winter, so regular monitoring is important plus the potential need to vary the dose with the seasons to avoid going too low or too high.

Thank you for posting this link Batch.

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Re: 123 Days PF And I Think I know Why
Reply #1744 - Feb 21^st, 2014 at 3:38pm

Hello to all my fellow CH’ers. This is my first post here and it is long overdue. I have been reading here for years and finding many ideas to help corral this beast. I am happy to say that I
can add another success story to the D3 regimen. I have had CH’s for 30+ years, DX’ed 10 years ago.
Typical misdiagnoses of sinus related issues. Cycles are about a month long, 3 – 6 HA/day with a 3 – 4 year remission. The day the shadows started appearing this cycle I found this thread and read every word from the beginning. I started on the regimen immediately and can say I was one who benefited within days. My cycle usually starts with about 3 days of shadows then ramps up rapidly. On the D3 I never went past a Kip 3 for this entire cycle. I cannot say I went PF on the regimen but I fall into the “significant reduction in frequency and duration” category, and it was significant! I also had many 24-48 hour periods of PF time within my cycle, something I have never had before. After 7 days on 20,000 iu/day (plus co-factors) my 25(OH)D came back at 35ng/ml. After 30 days on 20,000 iu/day the next test returned a result of 107 ng/ml.
I have completed the survey and glad to add 1 more positive result.
Batch, I want to add my heartfelt thank you for your knowledge and willingness to help your
fellow CH sufferers. It is appreciated beyond words.

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Re: 123 Days PF And I Think I know Why
Reply #1745 - Feb 21^st, 2014 at 4:59pm

Hey Bob,

Thank you for the wonderful feedback and kind words. It's posts like yours that encourage CH'ers sitting on the bench wondering what to do next, take the first step and discuss this regimen with their PCP or neurologist and ask for the 25(OH)D lab test.

I've been exchanging email with Dr. Stasha Gominak, MD this week per my earlier post on this page. She's been using a very similar regimen on her migraine patients for well over six years so she's gained a lot more experience with it in a clinical environment.

She's suggested lowering the upper boundary of the "green zone" 25(OH)D response range from 60 to 110 ng/mL to a narrower optimum range of 60 to 80 ng/mL as illustrated in the following chart.

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Her rational for this range isn't driven by vitamin D3 intoxication with elevated serum or urine calcium as that occurs at 25(OH)D serum concentrations above 200 to 300 ng/mL, but rather that sustained 25(OH)D serum concentrations above 80 ng/mL start to interfere with enzymes, hormones and other peptides needed for restful sleep.

This isn't a significant change in the vitamin D3 dosing schedule we use in the anti-inflammatory regimen... Most of us will continue to need a maintenance dose of 10,000 IU/day to stay in the optimum 25(OH)D range of 60 to 80 ng/mL...

What it does mean is CH'ers who test above 85 ng/mL will need to lower their maintenance dose to around 7,000 to 8,000 IU/day.

Bob, now that you've got the CH beast largely under control, the next thing to try is "tuning" the anti-inflammatory regimen by changing doses of the supplements.

For starters you can drop the vitamin D3 intake to a maintenance dose of 10,000 IU/day and test again in a couple months. Doubling the Omega-3 Fish Oil and bumping the magnesium to 600 mg/day has helped some CH'ers achieve a more effective preventative effect. Cutting back on the calcium or eliminating it for a few weeks has helped others. I've also doubled the zinc to 20 mg/day.

Hope this helps get you completely pain free... Remember to stay on this regimen when out of cycle taking at least 5,000 IU/day vitamin D3... When the next cycle comes around you can bump the vitamin D3 back up to 10,000 IU/day and that should have you sailing through with little or no painful CH attacks.

Take care, thanks again for the wonderful post, and please keep us posted.

V/R, Batch

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Re: 123 Days PF And I Think I know Why
Reply #1746 - Feb 23^rd, 2014 at 4:19pm

Hello everyone! Batch! Glad to be back. It has been kind of hard for me to get on here as of late when I have been too busy enjoying a better quality of life. Yet another success story using the ''B-bomb'' which is what I so affectionately nicknamed the D3 regimen after Batch. It has been the strongest weapon in my arsenal. I am now one month well into the regimen and I have to report that It has been 16 days since my last CH and 12 days being pain free!! I am down to 10,000IU D3 and I have dropped the Calcium. So just taking D3, Fish Oil and Centrum silver. I want to thank everyone on here for their support since day one and very specially, Batch, you are God sent. You have given me my life back and you deserve a Nobel Prize for all your research. Thanks for giving so much to so many people. Survey completed. I shall be checking in.

-Andy

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Re: 123 Days PF And I Think I know Why
Reply #1747 - Feb 23^rd, 2014 at 10:54pm

Hey Andy,

Thanks for the wonderful feedback... I know the feeling when you finally get the CH beast under control with this regimen and the confidence gained in knowing how to keep it away...

Thanks also for taking the online survey... I'll be presenting the survey results to neurologists attending the 2014 Annual Meeting of the American Academy of Neurology, April 28, in Philadelphia...

This is a great opportunity for all CH'ers as it will finally get information on the anti-inflammatory regimen of supplements and its efficacy in preventing CH in print.

There's no guarantee neurologists will read the published abstract... but we will have and article printed in a neurology journal to reference. That way if doubtful neurologists say "WTF" when CH'ers ask for the 25(OH)D lab test and want to start this regimen, they'll at least have a more authoritative response.

Take care and thanks again for the wonderful feedback.

V/R, Batch

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Re: 123 Days PF And I Think I know Why
Reply #1748 - Feb 24^th, 2014 at 2:29am

Quote from Chuffy:

BTW Thierry, what Multi are you using and do you take separate Calcium and Magnesium as well?
-------------------------------------------

Hi Chuffy, I hope you are well, I guess you are, as you are pain free

I am actually not taking a multi. Back when i started the regimen -1 year ago-, all this being new to me, I actually got all the ingredients of the regimen seperately and still do so to this day. So i have a bottle of each of the following:

Doctor's best D3, 2 softgels = 10000iu
Solgar calcium citrate, 2 tablets = 400mg
Solgar magnesium citrate, 2 tablets = 400mg
Solgar vit A, 1/2 tablet = 2500 iu
Nature made fish oil, 2 softgels = 2400 mg
Nature's plus Zinc, 1 tablet = 10 mg
Now boron, 1 capsule = 3 mg
source of life garden Vit K2, 1 capsule = 120 mcg

I get all of these from iherb.

I have recently discovered from one of Batch's above posts that I am not taking enough K2 and will now buy the Life Extension Super K.
I am aware that I could be taking a Multi and reduce the amount of bottles I have and pills I take every day. I will start taking the regimen as Batch does (photo above in Batch's post) after I run out of what I have, However as you have mentioned, I might need to tweek it a bit as you have pointed out that the Kirkland Mature Multi from Amazon UK does not have enough calcium and magnesium, and it seems a little low on the zinc too. Also, like you rightly pointed out, the fish oil from Nature's Best seems to be a cheaper option.
So it looks like I am going to change my shopping habits and get buy some of the ingredients from Amazon UK instead of buying everything from iherb.
Apart from the regimen, I also take 1 tablet/day of Solgar Ultimate B + C complex, some Ginkgo Biloba extract and I put of spoon of organic Maca powder in my porridge every morning, the maca powder is great for an active man, -if you get my drift Wink

, I am blessed with having a very lovely, beautiful and active partner, she is a gem.

I have been mostly pain free for the last year, with just one very short cycle where i had a couple of Kip 9 in june which is always my worst time. My life has been transformed and I do not dread spring or autum coming and the "oh noooo" feeling when you start getting the first few shadows.
All the best to you and yours and all here

Oh, and Batch, YOU ARE A STAR, A LIFE SAVER. THANK YOU, THANK YOU, THANK YOU for your relentless work and research and helping each and every one of us that comes knocking on your door.

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Re: 123 Days PF And I Think I know Why
Reply #1749 - Feb 24^th, 2014 at 11:37am

For you who don’t know me -
I suffer from one of the extreme sorts of CH, and was diagnosed as intractable CCH
(Chronic Cluster Headache).

Without medication I averaged (AM = Arithmetical maiden) up to 8 episodes a day at an average high (AM) pain level of kip 8.
A CH episode lasts 45 to 50 min; without abortive treatment, an episode is accompanied with
all the classic CH symptoms.

I have undergone treatment with almost all the schoolbook standards of care preventative / abortive medications for CH, and was a guinea pig to some new and innovative treatments.

None of the treatments provided sustainable positive results, or gave me a full (even limited) success in preventing my CH…

The only treatment I have NOT tried is the CB alternative.
I do think it could provide me with some relief; it is not compatible to my job requirements however.

All treatments (I have undergone) had one or more undesirable side effects that made the risk-reward ratio unfavourable so the choice to continue or discontinue the treatment was made very easy.

The anti-inflammatory treatment (AIT) for me is not a magic bullet - BUT

Being under very tight control and monitoring by doctors in the endocrinology department at KSSG (Kantonspital St. Gallen Switzerland).
The AIT has allowed me to achieve a steady 85% reduction in the frequency of my CH episodes. It has also resulted in a significant (over 50%) reduction in the pain level of the remaining episodes… hardly ever going over Kip 5 anymore.

I achieve all of the above without any immediate apparent undesirable side effects. On the contrary, my bone density (monitored as well) is improving and my current overall sense of well-being is very good.

And as my broken bones (A double fracture of the Fibula) are in good shape, I will start paragliding again, and do all the things I like….

Michael

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