Click this link to read a post I like on the clusterheadaches.com message board...

Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Anti-Inflammatory Regimen and Survey Reply #50 - Mar 7^th, 2013 at 7:50am Globi wrote on Mar 7^th, 2013 at 5:52am: A vitamin D overdose can be dangerous.....and damage your kidneys. An H₂O overdose can do the same thing. What's your point? Do you believe we're talking here about intake levels that can cause an overdose?
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

Globi

CH.com Junior

Offline

I love YaBB 1G - SP1!

Posts: 96
Amsterdam, The Netherlands
Gender: male

Re: Anti-Inflammatory Regimen and Survey
Reply #51 - Mar 7^th, 2013 at 7:58am

Brew wrote on Mar 7^th, 2013 at 7:50am:

Globi wrote on Mar 7^th, 2013 at 5:52am:

A vitamin D overdose can be dangerous.....and damage your kidneys.

An H₂O overdose can do the same thing.

What's your point? Do you believe we're talking here about intake levels that can cause an overdose?

Yes. This according to multiple sites in holland. And if you are overall healthy it might not mather. For me for instance it could be dangerous because i have a disease which is damaging my kidneys already.

Back to top

IP Logged

horsegirl

CH.com Veteran

Offline

Cluster Headaches

Posts: 146
x0||USA||0|0|IA,Iowa
Gender: female

Re: Anti-Inflammatory Regimen and Survey
Reply #52 - Mar 7^th, 2013 at 8:19am

just depends on who you ask about vit d. Like for instance the pharmacist at walmart that helped me pick the vitamins. when I told her how much I was going to take she looked at me like I was crazy. She warned me vit d is fat saluble , and not to take more then what the bottle recomends. My doctor said same thing. So in other words the post of vit d being dangerous wasnt just a post out of the blue to tick you off . Having said that I'm still gonna take 10,000 a day . As soon as I go to different doc that will do lab test.

Back to top

IP Logged

Chuh

CH.com Junior

Offline

I Love CH.com!

Posts: 31

Re: Anti-Inflammatory Regimen and Survey
Reply #53 - Mar 7^th, 2013 at 9:34am

Balanchine wrote on Feb 25^th, 2013 at 6:10pm:

So the results of my D3 test, aka 25 (OH) D are in and the reading is 34 ng/ml. The doc's assistant called this "normal". I should add that this was from blood drawn before I began the 10K IU daily D3 etc. regimen on 2/15, which included a 50K bump on 2/22.

After 3 or 4 miraculously quiet days though I suddenly got a rude wake-up call from Mr. Beast Saturday night late. This happened to coincide with a visit from my girlfriend, the first in a week in fact, and I'm wondering if this had something to do with it as this was of course a visit with, er, All That Such A Visit Entails. I seem to recall a flurry of posts half a dozen years ago about such matters and their relation to CH, though no real conclusions.

Maybe my GF is a trigger. Or, um, er, that is, maybe it's A.T.S.A.V.E. Yikes.

Anyway, there was a less-intense hit the next afternoon and then last night nothing. But since I was concerned I went back on the full dose of Topamax yesterday (25 mg twice a day) so that may also be contributing. Still continuing the vitamins of course... we shall see.

David

I've noticed that my wife's facial lotions and her Chanel #5 can both instigate my rhinorrhea symptom, which leads to, which leads to.... Just a heads up from my perspective.
Take care

Back to top

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: Anti-Inflammatory Regimen and Survey
Reply #54 - Mar 7^th, 2013 at 10:17am

Globi, Horsegirl,

Vitamin D3 is the safest nutrient we can take... even at 10,000 IU/day...

Our bodies produce vitamin D3 in the skin when exposed to the UV-B in sunlight. The average adult with fair skin can generate 15,000 IU vitamin D3 in as little as 10 minutes exposure to summer sunlight around noon clad in a bathing suit without any sun block.

Moreover, our bodies also have built-in mechanisms to guard against vitamin D3 intoxication and will metabolize excess 25(OH)D into an inactive form of vitamin D3 that's eliminated in the urine.

Vitamin D toxicity is determined clinically by lab tests of total calcium serum concentrations above the normal reference range. This condition is also frequently associated with another comorbid condition called hyperparathyroidism were one or more of the four parathyroid glands are involved with a parathyroid adenoma, a noncancerous (benign) tumor of the parathyroid glands.

All that said, too much of anything can cause health problems... even water... I recall there was a misguided young lady that took a radio station challenge to drink a gallon of water in less than 24 hours... She did and died from it.

The bottom line is simple... taking vitamin D3 at the dosing suggested in this thread is far safer and a lot more healthy for you than taking corticosteroids and many of the other standards of care pharmaceutical treatments for our disorder. These pharmaceuticals only treat the symptoms of CH... not the underlying causes.

The most recent news letter from the Vitamin D Council made the following statements:

"The upper limit (UL) for vitamin D, set by the 2011 Food and Nutrition Board, is 4,000 IU per day. This is defined as the highest level of daily consumption that causes no side effects in humans when used indefinitely without medical supervision.

The same board set the No Observed Adverse Effects Level (NOAEL) at 10,000 IU/day. The NOAEL is the dose at which there are no published studies showing any adverse effects of that dosage. As an aside, if there are any studies showing 20,000 IU/day is unsafe, I would like to see them.

Anyway, the Upper Limit is simply calculated from the NOAEL by dividing by a safety factor. In vitamin D’s case, they divided the NOAEL of 10,000 IU/day by 2.5 to get the Upper Limit of 4,000 IU/day.

At the Vitamin D Council, we recommend that patients exceed the Upper Limit, but not exceed the NOAEL of 10,000 IU/day, unless they are under medical supervision or know what they are doing."

I'll interpret the comment "knowing what they are doing" as being smart enough to go in for the 25(OH)D lab test every 30 days for the first few months on this regimen until you reach a stable 25(OH)D equilibrium.

The target concentration for 25(OH)D when taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 is 85 ng/mL. That's well within the normal reference range for 25(OH)D at 30 to 100 ng/mL and dead center in the middle of the "green zone" 60 to 110 ng/mL where nearly all CH'ers have reported going pain free from their cluster headaches... and staying that way...

In my opinion, physicians who refuse to do a 25(OH)D lab test or support their patients taking 5,000 to 10,000 IU/day vitamin D3 or more while under supervision, are either sadly lacking in knowledge of vitamin D3 therapy, or they fear the loss of funding and perks from the Big Pharma, who would rather you're prescribed their very expensive and very invasive pharmaceutical treatments for your cluster headache... that are far less effective in preventing them.

If you want to read more about vitamin D3 and its health benefits as well as the disinformation campaign being waged by big pharma to discourage use of this essential nutrient, please see the following link:

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

or

Take care and please don't let a clueless physician, or one with a hidden agenda, try to scare you away from taking supplemental vitamin D3 along with the rest of the essential cofactors...

V/R, Batch

Back to top

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

IP Logged

Globi

CH.com Junior

Offline

I love YaBB 1G - SP1!

Posts: 96
Amsterdam, The Netherlands
Gender: male

Re: Anti-Inflammatory Regimen and Survey
Reply #55 - Mar 7^th, 2013 at 10:39am

@Batch

Too much is not good. It's as simple as that. Next to that i am a bit annoyed that I've seen many post about this saying it is the solution. I know a few people in this 'business' who are not in it for the money. It might be the solution for some people. Same with oxygen. It works for you. Great! But warn people as well to take this road together with a real doctor. Water is healthy. If you take a lot you can die.

Back to top

IP Logged

Globi

CH.com Junior

Offline

I love YaBB 1G - SP1!

Posts: 96
Amsterdam, The Netherlands
Gender: male

Re: Anti-Inflammatory Regimen and Survey
Reply #56 - Mar 7^th, 2013 at 10:40am

Batch wrote on Mar 7^th, 2013 at 10:17am:

Globi, Horsegirl,

Vitamin D3 is the safest nutrient we can take... even at 10,000 IU/day...

Our bodies produce vitamin D3 in the skin when exposed to the UV-B in sunlight. The average adult with fair skin can generate 15,000 IU vitamin D3 in as little as 10 minutes exposure to summer sunlight around noon clad in a bathing suit without any sun block.

Moreover, our bodies also have built-in mechanisms to guard against vitamin D3 intoxication and will metabolize excess 25(OH)D into an inactive form of vitamin D3 that's eliminated in the urine.

Vitamin D toxicity is determined clinically by lab tests of total calcium serum concentrations above the normal reference range. This condition is also frequently associated with another comorbid condition called hyperparathyroidism were one or more of the four parathyroid glands are involved with a parathyroid adenoma, a noncancerous (benign) tumor of the parathyroid glands.

All that said, too much of anything can cause health problems... even water... I recall there was a misguided young lady that took a radio station challenge to drink a gallon of water in less than 24 hours... She did and died from it.

The bottom line is simple... taking vitamin D3 at the dosing suggested in this thread is far safer and a lot more healthy for you than taking corticosteroids and many of the other standards of care pharmaceutical treatments for our disorder. These pharmaceuticals only treat the symptoms of CH... not the underlying causes.

The most recent news letter from the Vitamin D Council made the following statements:

"The upper limit (UL) for vitamin D, set by the 2011 Food and Nutrition Board, is 4,000 IU per day. This is defined as the highest level of daily consumption that causes no side effects in humans when used indefinitely without medical supervision.

The same board set the No Observed Adverse Effects Level (NOAEL) at 10,000 IU/day. The NOAEL is the dose at which there are no published studies showing any adverse effects of that dosage. As an aside, if there are any studies showing 20,000 IU/day is unsafe, I would like to see them.

Anyway, the Upper Limit is simply calculated from the NOAEL by dividing by a safety factor. In vitamin D’s case, they divided the NOAEL of 10,000 IU/day by 2.5 to get the Upper Limit of 4,000 IU/day.

At the Vitamin D Council, we recommend that patients exceed the Upper Limit, but not exceed the NOAEL of 10,000 IU/day, unless they are under medical supervision or know what they are doing."

I'll interpret the comment "knowing what they are doing" as being smart enough to go in for the 25(OH)D lab test every 30 days for the first few months on this regimen until you reach a stable 25(OH)D equilibrium.

The target concentration for 25(OH)D when taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 is 85 ng/mL. That's well within the normal reference range for 25(OH)D at 30 to 100 ng/mL and dead center in the middle of the "green zone" 60 to 110 ng/mL where nearly all CH'ers have reported going pain free from their cluster headaches... and staying that way...

In my opinion, physicians who refuse to do a 25(OH)D lab test or support their patients taking 5,000 to 10,000 IU/day vitamin D3 or more while under supervision, are either sadly lacking in knowledge of vitamin D3 therapy, or they fear the loss of funding and perks from the Big Pharma, who would rather you're prescribed their very expensive and very invasive pharmaceutical treatments for your cluster headache... that are far less effective in preventing them.

If you want to read more about vitamin D3 and its health benefits as well as the disinformation campaign being waged by big pharma to discourage use of this essential nutrient, please see the following link:

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

or

Take care and please don't let a clueless physician, or one with a hidden agenda, try to scare you away from taking supplemental vitamin D3 along with the rest of the essential cofactors...

V/R, Batch

And your last sentence is not okay. I know Goadsby, Watkins, and others personally.....as well as the top in europe and holland. They really care. They don't say to not try other things.

Back to top

IP Logged

Globi CH.com Junior Offline I love YaBB 1G - SP1! Posts: 96 Amsterdam, The Netherlands Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #57 - Mar 7^th, 2013 at 10:43am @batch And you mean well. That is not the point. I did VERY well with the occipital nerve operation for one year. I did not post here to be very sure. For some it works and for others it doesn't.
Back to top	« Last Edit: Mar 7^th, 2013 at 10:47am by Globi » IP Logged

ktb

CH.com Newbie

Offline

I love YaBB 1G - SP1!

Posts: 5
x0|san pedro|USA||0|0|CA,California
Gender: female

Re: Anti-Inflammatory Regimen and Survey
Reply #58 - Mar 8^th, 2013 at 3:15pm

After reading the posts on this board and others, I decided to give it a try. I have a few questions...

Does this have a success rate when taken with Melatonin?
Can I take this while using Verapamil?
Does it work the same for women as it seems to do in men?
Do I take the vitamins all at once or small doses throughout the day?
What brands do you NOT recommend?

I've been suffering for more then 30 years. Suffering since the age of 16, diagnosed at 22. Found Dr. Kudrow at age 25. Unfortunately I changed insurance and my new Dr. is clueless. I'm giving him lessons and he is reluctant to treat me the same way as Kudrow.

Keeping my fingers crossed...

Back to top

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: Anti-Inflammatory Regimen and Survey
Reply #59 - Mar 10^th, 2013 at 12:09am

Hey KTB,

Good questions. We've not established any statistically significant links between the effectiveness of this regimen while taking melatonin, verapamil or both...

So far there haven't been any comments in this area either... That said, taking calcium supplements can decrease the effectiveness of verapamil... Talk with your neurologist or PCP about taking calcium supplements with verapamil.

I've read were cardiologist have given their heart patients calcium supplements while they're also taking verapamil... What they suggest is taking the calcium supplement and verapamil 12 hours apart to minimize any impact on the verapamil.

The only class of cluster headache medications that can lessen the preventative capacity of vitamin D3 are corticosteroids. That said, vitamin D3 doesn't appear to affect a prednisone taper. If you have questions about taking vitamin D3 with a prednisone taper, ask your PCP or neurologist.

I've checked the online survey data and this regimen is equally effective for both men and women... It is also equally effective for both episodic and chronic CH'ers...

Although the episodic types have a very slight edge by a few points on efficacy... this can easily be due to the confusion between a valid response and end of cycle.

Several studies have found it's best to take the vitamin D3 with the largest meal of the day or the meal with the most fats... As vitamin D3 is lipophilic (it likes fats), absorption can be significantly higher taking it with the largest meal of the day. It's also a good idea to take the vitamin D3 with the Omega 3 Fish Oil for the same reason.

The rest of the supplements can be taken at any time... I've been taking them all at once just so I don't forget...

As far as which brand of supplements... try to stick with supplements made by big name brands here in the US. Nature Made and Nature's Bounty are both reputable US brands... but there are many other big name brands... and some of their supplements are made in the EU...

Read the label and if you still have questions, there's usually a number to call either on the bottle or the manufacturer's web site. I would avoid buying supplements made in China.

Playing Ding-Dong School with new or narrow-minded neurologists is a problem most CH'ers will face at one point or another...

The mark of a good neurologist/headache specialist is a willingness to involve the CH'er in the selection of candidate therapies, explain the risk:benefit ratio of each including potential side effects and to be open to patient suggested treatments.

One of the first things you should do is get the lab test for 25(OH)D. Knowing your serum concentration of this vitamin D3 metabolite is important as it will give you an indication how long it can take for this regimen to become effective as a CH preventative.

'Hope this helps and when you do have results to post, please use the other thread at the following link:

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

or

Take care,

V/R, Batch

Back to top

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

IP Logged

Globi

CH.com Junior

Offline

I love YaBB 1G - SP1!

Posts: 96
Amsterdam, The Netherlands
Gender: male

Re: Anti-Inflammatory Regimen and Survey
Reply #60 - Mar 10^th, 2013 at 1:21pm

Batch wrote on Mar 10^th, 2013 at 12:09am:

Hey KTB,

Good questions. We've not established any statistically significant links between the effectiveness of this regimen while taking melatonin, verapamil or both...

So far there haven't been any comments in this area either... That said, taking calcium supplements can decrease the effectiveness of verapamil... Talk with your neurologist or PCP about taking calcium supplements with verapamil.

I've read were cardiologist have given their heart patients calcium supplements while they're also taking verapamil... What they suggest is taking the calcium supplement and verapamil 12 hours apart to minimize any impact on the verapamil.

The only class of cluster headache medications that can lessen the preventative capacity of vitamin D3 are corticosteroids. That said, vitamin D3 doesn't appear to affect a prednisone taper. If you have questions about taking vitamin D3 with a prednisone taper, ask your PCP or neurologist.

I've checked the online survey data and this regimen is equally effective for both men and women... It is also equally effective for both episodic and chronic CH'ers...

Although the episodic types have a very slight edge by a few points on efficacy... this can easily be due to the confusion between a valid response and end of cycle.

Several studies have found it's best to take the vitamin D3 with the largest meal of the day or the meal with the most fats... As vitamin D3 is lipophilic (it likes fats), absorption can be significantly higher taking it with the largest meal of the day. It's also a good idea to take the vitamin D3 with the Omega 3 Fish Oil for the same reason.

The rest of the supplements can be taken at any time... I've been taking them all at once just so I don't forget...

As far as which brand of supplements... try to stick with supplements made by big name brands here in the US. Nature Made and Nature's Bounty are both reputable US brands... but there are many other big name brands... and some of their supplements are made in the EU...

Read the label and if you still have questions, there's usually a number to call either on the bottle or the manufacturer's web site. I would avoid buying supplements made in China.

Playing Ding-Dong School with new or narrow-minded neurologists is a problem most CH'ers will face at one point or another...

The mark of a good neurologist/headache specialist is a willingness to involve the CH'er in the selection of candidate therapies, explain the risk:benefit ratio of each including potential side effects and to be open to patient suggested treatments.

One of the first things you should do is get the lab test for 25(OH)D. Knowing your serum concentration of this vitamin D3 metabolite is important as it will give you an indication how long it can take for this regimen to become effective as a CH preventative.

'Hope this helps and when you do have results to post, please use the other thread at the following link:

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

or

Take care,

V/R, Batch

I hope many people will benefit from this. I have seen a few neurologist specialist in headaches. In my opinion they really care. The problem starts with neurologist/specialists who do not know what they talk about. I have a friend who is an internist ( general specialist) who thought morphine would help.....

Regards,

Globi

Back to top

IP Logged

thierry

CH.com Alumnus

Offline

I Love CH.com!

Posts: 406
Galway, Ireland
Gender: male

Re: Anti-Inflammatory Regimen and Survey
Reply #61 - Apr 6^th, 2013 at 6:24pm

Hey, I have been taking the regimen for 10 days now. I started the regimen last week (thursday 28th march), I took the D3, Fish oil and calcium for the first 4 days, then added the rest of the supplements when i received them in the post from Iherb.com. After a few days (4 or 5) I felt a bit of pain on my left temple (my pain has always been on the right prior to this) although that pain was mild. I still had the attacks on the right. I am still taking Zomig (zolmitriptan) before i go to sleep because my worst attacks occur between 45 minutes to an hour after I fall asleep. The attacks i get during the day have always been quite mild but they are definitely milder now since i started the regimen. One night about 5 nights ago i forgot to take the Zomig and to my surprise i didn't get an attack at all, although i could feel an attack coming on strong as i was going to bed the next night. After reading this evening another post by Batch on a different thread, i will increase the D3 to 20000IU per day for the next few weeks and take a once weekly loading dose of 40 to 50000IU, as well as increasing the magnesium to 600IU.
I got my doctor to take my D3 level before i started the regimen, i haven't gone back to her yet to get the results but will call her after the weekend. i hope to get the level taken again in a month or so.
I'll keep you all informed of the progress.
Thanks again Batch for the regimen and thanks all for the support that was addressed to me and the support felt for and from all CHers on the this forum.

Back to top

IP Logged

Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #62 - Apr 8^th, 2013 at 7:42pm I started taking a VERY small dose of vitamin D, calcium and krill oil at the start of my cycle on March 20. I also dosed twice with RC seeds. I'm not sure if it was one or the other or the combination of both, but I've been PF now for almost two weeks! PF wishes, Jeannie
Back to top	"It's all a grand illusion when you think you're in control." ~ Kenny Chesney IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: Anti-Inflammatory Regimen and Survey
Reply #63 - Apr 8^th, 2013 at 8:27pm

Hey Jeannie,

Great news... It doesn't really matter what was responsible for the pain free response as long as you're pain free.

That said, if you're really curious... stop taking one or the other for a few days and see what happens.

I know that may sound silly, but at some point, you'll need to know if it's one, the other or both.

If it was the vitamin D3 that's preventing your CH, the symptoms will return in as little as 12 to 24 hours... Again, no big thing... just double the dose of vitamin D3 and you'll go pain free again just as fast.

Take care and please keep us posted.

V/R, Batch

Back to top

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

IP Logged

Balanchine

CH.com Alumnus

Offline

Posts: 238
x0|Los Angeles|USA||0|0|CA,Cal
Gender: male

Re: Anti-Inflammatory Regimen and Survey
Reply #64 - Apr 8^th, 2013 at 8:30pm

Batch, since I've been on the vitamin regimen for a bit now - 6 weeks I think - but have also been taking Topirimate I was unsure how to answer the questions on the survey as to whether I thought the vitamins were preventing my headaches. Advice?

As of a few days ago I decided to see if my cycle had ended so stopped the Tope. No pain so far, which knowing my history leads me to think I've come out of the cycle. I'll of course continue the vitamins and report from time to time on progress.

Thanks.
David

Back to top

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: Anti-Inflammatory Regimen and Survey
Reply #65 - Apr 9^th, 2013 at 8:41am

Hey David,

Great to hear you're pain free... and good question. We put a question in the online survey for episodic CH'ers that asks, "Where, in your "normal" episodic cycle, did the response to the anti-inflammatory regimen occur?" The answer is broken up into 10 parts with "1" being the cessation of CH symptoms occurred in the first tenth of the normal cycle and "10" being the cessation of CH symptoms occurred at the end in the last tenth of the normal cycle.

We also have a question about the response time... "How long after starting this regimen did you experience a favorable response?"

In addition, if Topirimate has been 100% effective in preventing your cluster headache, then it's hard to tell if the answer is A, B, or A+B. Make a comment in the comment section of the survey to that effect.

However, the average efficacy of Topirimate is listed well below 50% so I'm inclined to say the complete cessation of your CH symptoms is likely due to the vitamin D3.

Accordingly, answer the efficacy question as "Yes", but be sure to answer the question "when did the cessation occur within your normal cycle" and list Topirimate as a CH med you're presently taking.

The best way to find out if this regimen is responsible for the cessation of your CH symptoms and it's not the actual end of cycle... is to stop taking the anti-inflammatory regimen for a week to 10 days or until you start feeling the return of your cluster headache symptoms, which ever occurs first, then restart the complete regimen with a double dose of vitamin D3 (20,000 IU) on the first day.

I realize this might sound crazy... but I've done it at least four times since I developed and started taking this regimen in Oct of 2010... Hmmm... I guess that means I'm crazy...

That said, I'm a chronic type so all four times resulted in a resumption of my cluster headache symptoms in a week to 10 days... These symptoms subsided rapidly as soon as I got back on the anti-inflammatory regimen.

There's two things to take away from this discussion.

1. The anti-inflammatory regimen isn't a cure for cluster headache... but it works for 80% of the CH'ers who try it and it's equally effective for episodic and chronic CH'ers.

2. Knowing the anti-inflammatory regimen is actually responsible for preventing your cluster headache is a real confidence builder. It's also a comforting feeling knowing that taking a few vitamins and minerals actually prevents cluster headache... and improves your health at the same time with no adverse side effects.

Finally, although it's not an option for chronic CH'ers who need to stay on this regimen 100% of the time, episodic CH'ers would be well served doing the same thing.

Take care and thanks again for the question.

V/R, Batch

Back to top

« Last Edit: Apr 9^th, 2013 at 8:55am 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

IP Logged

thierry

CH.com Alumnus

Offline

I Love CH.com!

Posts: 406
Galway, Ireland
Gender: male

Re: Anti-Inflammatory Regimen and Survey
Reply #66 - Apr 14^th, 2013 at 6:02am

Hi all, I have been on the regimen for 18 days now. The 25(OH)D results of the test done before I started the regimen shows a reading of 41 nmol/L. I have been taking 20000iu D3 (instead of 10000) for the last 5 days, On one day last week I took a loading dose of 50000iu D3 and that day I did not have a serious attack as I would usually have had. I have also increased the Magnesium to 600 every day. I would like to take 50000iu D3 for a few days in a row, Is that OK?

Back to top

« Last Edit: Apr 14^th, 2013 at 7:50am by thierry »

IP Logged

dr1977

CH.com Newbie

Offline

I Love CH.com!

Posts: 1

Re: Anti-Inflammatory Regimen and Survey
Reply #67 - Apr 14^th, 2013 at 9:32am

"Vitamin D toxicity is determined clinically by lab tests of total calcium serum concentrations above the normal reference range. This condition is also frequently associated with another comorbid condition called hyperparathyroidism were one or more of the four parathyroid glands are involved with a parathyroid adenoma, a noncancerous (benign) tumor of the parathyroid glands."

--Hello Everyone,

I'm new here, but have spent the last few weeks reading through these posts. (There's a lot of info!)

Background - 2006 had a parathyroid adenoma removed. Then in 2012 my hyperparathyroidism came back with a vengeance. In June I was diagnosed with parathyroid carcinoma, had the parathyroid removed, some muscle tissue and a thyroidlobectomy.
I've never had any issues with headaches until late February and I couldn't figure out what this beastly and fast headaches were until diagnosed by my PCP as having CH. After reading more here I'm beginning to wonder if they are related in some way.
I did speak with my PCP about D-3 regimen and she advised not seeing an issue with it.
However, I am allergic to fish and cannot take fish oil supplement, so I have substituted flax-seed oil for the omega-3 (though I know they are not diriviatives of the same omega-3). PCP put me on a 9-day prednisone taper which has helped, yesterday was the last day and last night I woke up with a shadow - I can feel the shadow there now. Sad

My questions are as follows - If I can't take the fish oil and substitute it with flax-seed oil, will it still be effective?
Also, any further information on how hyperparathyroidism may or may not play a role in CH? -I've had difficulty finding information anywhere else, maybe I'm just not very good at researching!

Very happy for all the folks who are PF on this regimen and many, many thanks for everyone's contribution on this board it's made a scary situation not so scary any more!

Back to top

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: Anti-Inflammatory Regimen and Survey
Reply #68 - Apr 14^th, 2013 at 10:26pm

Hey DR,

Great questions... For starters, hyperparathyroidism may very well play a role in CH... although the primary culprit is more likely a vitamin D3 deficiency.

The come-down or taper off prednisone is always a bummer for cluster headache sufferers (CH'ers)... The beast usually comes back with a vengeance...

Prednisone is really only effective as a transitional preventative until you titrate up on another preventative like verapamil... Staying on it too long has some onerous side effects.

I loved prednisone because it kept my CH under control... unfortunately it was slowly destroying my endocrine system...

Knowing what I know now... I'll never take it again. Instead, I load up on vitamin D3 calcium, and the vitamin D3 cofactors...

Omega 3 Fish Oil isn't a critical component of the Anti-Inflammatory regimen... It has well known anti-inflammatory properties and it aids in vitamin D3 absorption... and that's a good reason to take it. However, that's as far as it goes... It's not on the critical path to preventing CH.

If your thyroid was surgically removed, you were likely prescribed a synthetic thyroid hormone as a replacement therapy...

You should have also been prescribed vitamin D3 and calcium... See:

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

or

Unfortunately, there's no such hormone therapy for hypoparathyroidism... your remaining three parathyroid babies went out the the thyroid bath water... That said, the tradeoff between removing the thyroid containing the parathyroids to cut out the cancer and the resulting hypoparathyroidism was a good one. You can live with hypoparathyroidism...

The parathyroid hormone (PTH) signals the kidneys to metabolize serum 25(OH)D into 1,25(OH)2D3 that's needed to pull calcium from the gut to maintain bone mineral density (BMD) in what's called calcium homeostasis.

Fortunately studies have shown that people with with postthyroidectomy hypoparathyroidism actually experience an increase in BMD... See the following study:

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

or

It's also fortunate, that 80% of the vitamin D3 metabolized to 25(OH)D in the liver is metabolized extrarenal (outside the kidneys so no PTH is needed) at the cellular level in the peripheral path of vitamin D3 metabolism to 1,25(OH)2D3...

This is the autocrine mode of vitamin D3 metabolism we think is responsible for the cluster headache preventative effect.

10,000 IU/day Vitamin D3 and 500 mg/day calcium along with the vitamin D3 cofactors: 400 mg/day magnesium, 10 mg/day zinc, 1 mg/day boron and vitamin A at RDA should be sufficient to help prevent your cluster headaches... At least you'll have an 80% probability of a favorable response...

If your PCP sees no issue with vitamin D3 therapy, that's great! Ask her for the lab test for 25(OH)D to confirm the vitamin D3 deficiency then start the Anti-Inflammatory regimen less the Omega 3 Fish Oil.

Regarding your research on the use of vitamin D3 as a preventative for cluster headache... it's spot on... You won't find any other sources of info on this topic. This site and a couple related cluster headache sites are the only source of information on the anti-inflammatory regimen, it's efficacy in preventing cluster headache and the causal relationship between a vitamin D3 deficiency and cluster headache.

I'm working on changing that, however I still need additional survey information from CH'ers who have tried this regimen.

You'll find the latest info on the Anti-Inflammatory Regimen supplements, dosing and vitamin D3 dosing strategies along with drug interactions and contraindications at the following link:

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

or

This link also contains another link to the survey when you've been on this regimen for at least a month and had a second lab test for 25(OH)D.

Take care and please keep us posted.

V/R, Batch

Back to top

« Last Edit: Apr 14^th, 2013 at 10:42pm 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

IP Logged

thierry

CH.com Alumnus

Offline

I Love CH.com!

Posts: 406
Galway, Ireland
Gender: male

Re: Anti-Inflammatory Regimen and Survey
Reply #69 - Apr 16^th, 2013 at 7:24am

Hi, Day 21 on the regimen. 3 days ago i took 50000iu D3 and that night I did not take the zolmitriptan i usually take and got no attacks

, then the next day i took 40000iu D3, again no attacks, yesterday i went back to the normal 10000iu D3 and again no attacks

. I have now been pain free for 3 days YIPPEE YIPPEE YIPPEE. It seems the D3 regimen is working for me, i feel like i have wings and living normally again without the pressure and fear of knowing that an attack is surely around the corner, although i know it's only been a couple of days PF so i can't say for sure but for the last few years my spring attack would have lasted until the end of may or even until sometime in june. Will keep you up to date with progress. Thank you so much batch.

Back to top

« Last Edit: Apr 16^th, 2013 at 8:39am by thierry »

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: Anti-Inflammatory Regimen and Survey
Reply #70 - Apr 16^th, 2013 at 3:59pm

Hey Thierry,

Great news! I know that wonderful feeling...

Vitamin D3 loading doses like that will usually jump-start a rapid buildup of 25(OH)D and that's likely what's responsible for your pain free response.

Try to see your PCP or neurologist to report your results and get the lab test for 25(OH)D as soon as possible so you'll know the threshold serum concentration for your pain free response. Then, in 60 days at 10,000 IU/day vitamin D3, and as long as you remain pain free, try to get a second lab test to see where you stand.

If the beast starts slinking around at a vitamin D3 dose of 10,000 IU/day, you may need a maintenance dose of 15,000 IU/day in order to maintain a therapeutic 25(OH)D serum concentration.

The other thing to watch for are viral and bacterial infections... Upper respiratory infections, like colds. Although vitamin D3 supercharges your immune system making infections like colds and flu less likely, they can and will occur.

When infections like this do occur, your immune system will gobble up most of the available 1,25(OH)2D3 and lower the 25(OH)D substrate concentration to the point there may be insufficient concentrations of these two vitamin D3 metabolites to remain CH pain free.

Accordingly, at the first sign of a viral or bacterial infection, or even an allergic reaction, you may want to consider doubling the maintenance dose of vitamin D3 for a week to 10 days. Discuss this with your PCP or neurologist.

Take care and please keep us posted.

V/R, Batch

Back to top

« Last Edit: Apr 16^th, 2013 at 4:03pm 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

IP Logged

thierry

CH.com Alumnus

Offline

I Love CH.com!

Posts: 406
Galway, Ireland
Gender: male

Re: Anti-Inflammatory Regimen and Survey
Reply #71 - Apr 17^th, 2013 at 11:57am

Hi Batch, 4 days PF now

. You are a walking encyclopedia Batch. I will try to get my doctor to do a D3 blood test again. As i posted above a few days ago, I got the test done before i started the regimen and the reading was 41nmol/L.
It is lucky that I very rarely get respiratory infections like colds and flu but i will keep in mind what you're saying about the depletion of D3 when one happens.

Back to top

« Last Edit: Apr 18^th, 2013 at 2:04am by thierry »

IP Logged

JoeV CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 7 x0\|Valdosta\|USA\|\|0\|0\|GA,Georgia Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #72 - Apr 18^th, 2013 at 7:05am Batch, I've just discovered your regimen and went to Sam's and bought the D3 and fish oil, what is the purpose for each ingredient other than the D3? Would just the D3 work to hold off the CH's?
Back to top	IP Logged

thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: Anti-Inflammatory Regimen and Survey Reply #73 - Apr 20^th, 2013 at 5:56pm Hi JoeV, the answer to your question is in the link below, the other supplements in Batch's regimen are cofactors, they help in the absorption of D3. All the best. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Hope this helps,
Back to top	IP Logged

HossDelgado

CH.com Newbie

Offline

I Love CH.com!

Posts: 14

Re: Anti-Inflammatory Regimen and Survey
Reply #74 - Apr 20^th, 2013 at 6:51pm

Just a caveat, I think that people are a bit too accepting of the 'vitamin d council' as an impartial expert. I looked through their form 990's (last year available: 2010) and to me, it looks like an external marketing department for a handful of supplement companies. Just look at their list of major sponsors- all supplement companies.

Their expense break down shows that they do no research (at least in 2010)- they simply maintain a website (at $80k/year!) and publish a monthly newsletter promoting vitamin d.

thierry wrote on Apr 20^th, 2013 at 5:56pm:

Hi JoeV, the answer to your question is in the link below, the other supplements in Batch's regimen are cofactors, they help in the absorption of D3. All the best.

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

or

Back to top

IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!