I was in remission for the last two years when the beast attacked me 2 weeks ago. The oxygen has not worked this time, only the imitrex injections stopped the headaches for a while. The main reason I am on here is to thank everyone on this board who has helped me deal with this nightmare. Your treatment and ideas have helped me immensely. For years I suffered without taking the proper medication. With this attack I was in fear I might be going chronic. Yesterday I started the d-3 treatment not really thinking it would work. I don't know for sure but after the attack this morning I am feeling better and the shadows are not nearly as bad. I want to thank Batch who came up with this treatment he is truly a Godsend. As for you Chronic-cher's I have a new found admiration for how you deal with this hell on earth. Again can't thank people enough for this web site.

Hey Gary,

Thanks for the feedback.  I was fortunate to go pain free within 48 hours after starting this regimen in October of 2010...  I was getting whacked four times a night for weeks prior to that...  I've also been essentially pain free ever since... with the exception of some intentional 25(OH)D burn down tests where I stopped taking this regimen completely until my CH returned...

We've several hundred CH'ers here at CH.com who continue taking this regimen on a daily basis to prevent their CH.  We've captured lots of data from them and have learned even more over the last four years... 

Accordingly, if you have a problem with this regimen, please let us know.  There's usually an answer to help you get back to a CH pain free status and stay that way.

As time goes by while taking this regimen, you'll start to notice other beneficial side effects.  Henry Lahore at Vitamin D Wiki keeps web crawlers running 7 X 24, 365 days a year gathering all available info on Vitamin D3.  In doing so, he's compiled more information on the benefits of vitamin D3 that any other web site on the Internet.

His latest web page provides proof of 56 medical conditions that are either prevented or treated successfully with vitamin D3 and he provides links to the RCTs that provide the proof.  See the following link for details:

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Take care and please keep us posted.

V/R, Batch

So I am 3 days into the d-3 therapy and I cannot believe this is happening. This morning I felt some shadows but no headaches. I have now gone a day and a half with no headaches whereas I was having 3 to 4 per day. This is like a miracle and anyone who is suffering from this horrible malady please try this treatment. This afternoon even the shadows are  disappearing....again I can't thank Batch enough for coming up with this formula!!!....I do have one question...the vitamin A I am taking is 10,000 IU...is that too much...also I am taking the b-50 should I also take the kirkland mature multi with this or wait till i'm done with the b-50?....again thank you!!!!

Hey Gary,

Thanks for the feedback and kind words...  I'm happy the anti-inflammatory regimen is working well for you and so rapidly...  That is a treat isn't it?  The majority of 82% of CH'ers who start this regimen and experience a favorable response, do so within the first 10 days to two weeks...  I'm working on the other 18% who don't respond in a month and think Benadryl might just make the difference...

Regarding the vitamin A...  check the label. Most vitamin A is a mix of beta-carotene and retinol...Check to see what percent is retinol and what's beta-carotene.  3,000 IU of vitamin A (retinol) is the RDA and all you need. 

Take care and please keep us posted.

V/R, Batch

Hi Gary and Batch,
Gary welcome to the group of people who benefit hugely from Batch's hard work, perseverence and generosity. I am delighted to hear that the regimen is working for you too, what a relief hey!!!.
Batch, I was not aware until now that the Vit A had to be from retinol.
I am currently, and have been for some time now, taking this multi-vitamin

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It contains the vit A, zinc and boron that you recommend in the regimen.
However this is the vit  A content:
Vitamin A (50% [3,750 IU] as Vitamin A acetate and 50% [3,750 IU] as beta carotene).

No retinol.
Should I be changing my multi to one that contains retinol?

Again THANK YOU THANK YOU THANK YOU

All the best to you and yours.  :)

Thierry

Hey Thierry,

Thanks for chiming in with your positive comments on the anti-inflammatory regimen...

Good question...  The body converts beta-carotene to retinol or one of the related retinoids... but the rate is questionable...

Some of the vitamin D3 experts opine the amount of retinol converted from beta-carotene is sufficient to meet the requirements for vitamin D3 genetic expression... others think we need a little more.

One of the better explanations of Retinol Activity Equivalents (RAE) Ratios for Preformed Vitamin A and Provitamin A Carotenoids, can be found at the following link at the Oregon State University's Linus Pauling Institute web site: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

It's a long and convoluted read, but well worth the time if you really want to understand vitamin A in it's beneficial forms.

What is clear is we need vitamin A in both forms... We need a little... but not too much...  The suggested dose of retinol that I've listed at 3,000 IU for men, and 2,333 IU for women is in the middle... not too much and not too little...  It's the Goldilocks blend...

As most good vitamin A preparations list both the beta-carotene and retinol percentages, try to find the blend that meets the suggested dose.

I take the Kirkland brand Mature Multi and so far... it appears to be working just fine for me...

The link you posted lists 50% of the vitamin A as "Vitamin A acetate"... That's one of the retinoids... so you're looking good in my book...

Not likely the straight-forward answer you were looking for...  but as I say... what I'm taking works for me...

Hope this helps.

V/R, Batch

Hey Thierry,

Good to see you back on the Board. This is the Vitamin A product I use. As its 5000 iu I take one every other day. It's Retinyl Palmitate with 19 mg Vitamin C.

The brand is Solgar. I don't know if the photo will be successfully attached.

I get it in my local health store , so it is widely available in Ireland.

Best wishes,

Peter.

---

Thierry,

Sorry, that's 20 mg Vit C.

Peter.

---

Wrong again.... Not awake at all today.... 10 mg.

I'll shut up now!

P.

LoL...  You can use the "modify" button at the top banner of your post to go back and correct typos...

The photo is an excellent example of vitamin A (retinol)... listed in Retinol Equivalents (RE)... in this case 5000 IU of retinyl palminate... at 188% of the RDA.

Retinyl palminate is one of the "retinoids" so 5000 IU every other day is a good dose...

For reference, retinol is an alcohol and retinyl palminate is ester of retinol and palmitic acid...

Esters are aromatic compounds made from an alcohol and an organic acid... Most of the good smells in life are due to esters... like fruits and fresh mowed grass... Isoamyl acetate - (the smell of Bananas) comes from the ester of isoamyl alcohol and acetic acid.

Another familiar example is methyl salicylate (oil of wintergreen). It's the ester of methyl alcohol and salicylic acid.

Sorry about the chemistry lesson...

V/R, Batch

Hi Batch and Peter,
Indeed Peter I hadn't posted for a while, but am logging in every day and reading around a good bit.
I used to take all the ingredients of the regimen separetely and used to take the same Vit A as you do, i used to take half a tablet/day.
Batch, thanks for the reply to my question and info. It looks like i'm all right with the multi I'm taking as regards the Vit A, maybe not ideal but it'll do. I might consider changing my multi when the current bottle runs out. I cannot, here in Ireland get the same Kirkland mature multi as you get in the U.S. If i order it in Costco U.S, it will be sent from Costco U.K and the contents are different and not adequate frot he regimen. I may go back to taking all the regimen ingredients separetely or stick with the same multi or look for a different one. I am not too bothered as the regimen as I take it seems to be working well.
I have taken the B50 for 3 months sometime late last year and am also all the time taking the best acidophilus etc.. I can get.
It's the time of year when i start getting shadows, I got a few early last week so I let 50000 iu D3 melt in the corner of my mouth (as per your advice) and before they finished melting i could feel the shadows dissipating and eventually disapearing. Been shadow free since  Smiley. I suspect that i'll get a few more shadows over the next few weeks and maybe a few more serious hits. When that happens, i'll up the D3 to 20000iu/day. I am not in a position to take Benedryl at the moment as it can make you drowsy and is something I cannot afford to be at the moment as I am working on an intense job, working long hours. I have a good bit of responsibilities and deadlines as well as a fair size crew working for me.
Before Xmas, i went through 3 to 4 weeks of hits, some at kip 8 or 9, i upped my D3 to 20000 iu/day and weekly 50000iu loading doses for 7 weeks. I then got tested and my level came back as >350 nmol/L so I reduced back to 10000iu/day and even skipping the regimen 2 days/week for a few weeks so as to lower the level. I haven't got re-tested since.
I am ever so delighted to have come accross this site over 2 years ago, and even more delighted to have come accross the D3 regimen. Before this i used to get hit by the beast twice a year (spring and late autumn) for 3 months each time. My life used to stop in it's tracks. The d3 regimen has changed all this and I am soooo grateful to you Batch.
It's always a pleasure to read your posts, I am learning in everyone of them.
All the best
Thierry

Hey Thierry,

Thanks for the detailed feedback...  Your multi is just fine... It has the right amount of retinol equivalents so there's no need to change brands...

Allergies are buggers when it comes to cluster headache... It doesn't take much of an allergic reaction to hamper just about all forms of CH intervention...  A single 25 mg tablet of Benadryl a day when you get home at night will help vitamin D3 keep your CH in remission... A cup of coffee the next morning should take care of any cling-on drowsiness...

A 25(OH)D serum concentration of 350 nmol/L (140 ng/mL) isn't a problem either...  It's higher than the normal reference range... but as CH'ers... we're not normal either...  There are times when you need to take as much vitamin D3 as it takes to stay pain free...  I just wouldn't go over 50,000 IU/day for more than a few weeks...  even then, lab tests for serum 25(OH)D, calcium and PTH would be in order...

Remitting Recurring Multiple Sclerosis patients routinely push their 25(OH)D serum concentration up to 400 nmol/L with no problems noted in several lab tests... 

There's a 2009 study where RRMS patients took escalating doses of vitamin D3 from 4000 IU/day up to 40,000 IU/day in six week intervals for 12 months... Their charts follow:
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As you can see... their serum calcium stayed right in the middle of its normal reference range... so no toxicity at all...  The only thing that happened was their MS stayed in remission and they enjoyed an excellent quality of life...

Hope this helps.

Take care,

V/R, Batch

Batch,
           Okay, after going 4 days pain free I woke up the fifth day with shadows which led to a 20 minute kip 4-5. Last night I had another fairly mild attack which lasted about 45 minutes. Either way the pain of the headaches is lessening. My question is do I need to take the b-50 and not the kirkland mature multi or take them both. Also, I don't see a separate bottle of vitamin A in your prescribed dosage, does this mean you get enough of the vitamin A just taking the Kirkland mature multi?...didn't mention I am soon to be 61 years old...so I guess the idea of growing old and becoming CH free is a myth...lol

Hey Gary,

Thanks for the update and good questions...  The pop-up shadows after a few days pain free are not uncommon during the first few days after starting this regimen. 

The shadows should dissipate as you build your 25(OH)D serum concentration...  If they persist beyond 10 days to two weeks, you might be having an allergic reaction, usually to tree pollen. Some allergies can be sub-clinical, i.e., no outward or obvious symptoms... but they're still there pumping histamine into your system.

Accordingly, you may want to try Benadryl (Diphenhydramine).  Check with your PCP.

Benadryl is a first-generation antihistamine that passes through the blood brain barrier to block histamine receptors in brain cells.  Secon- and third-generation antihistamines cannot do this. 

The suggested adult Benadryl dose is (2) two 25 mg tablets a day, one in the morning and the other 12 hours later.  Benadryl is also a mild CNS depressant and it will cause drowsiness so don't drive if at all possible... 

If you do need to drive to work and back, take one 25 mg tablet when you're home for the night...  There shouldn't be much drowsiness the next morning.

The 3-month course of vitamin B 50 takes care of any deficiencies among the seven B vitamins...  After that, there's sufficient amounts of the seven B vitamins in the Kirkland Mature Multi to prevent any further deficiencies.

The Kirkland Mature Multi also contains sufficient vitamin A (retinol) so a separate bottle of vitamin A is not needed. 

Check the Mature Multi back label for the Supplement Facts to be sure... 

Take care and please keep us posted.

V/R, Batch

Hi Batch, thank you so much for the clear and precise info. I'm still shadow-free since disolving 50000iu D3 in the corner of my mouth a couple of weeks ago.
Next thing for me is to stop smoking these horrible cigarettes. Am in the process of looking up everything as regards all the things that can help. I'm 47 years old, it's well overdue. I am very close to setting a quit date. Wish I could head off to a desert island for a month, away from the temptations.
All the best
:)

Just an update: This past Sunday I had heavy shadows and felt like crap. It finally started to morph into a headache at which time I took an imitrex shot. Since then I have had only a few mild shadows and today I felt like the heaviness which hung over my right eye was gone. Still don't think I am out of the woods just yet, but many more days like today and I may very well be in remission. What do I attribute this to..Batches vitamin d-3 formula. If everyone in America understood our pain and most could get relief from a vitamin regimen, then I am sure Batch would be up for a Nobel prize in medicine!!! Hope anyone of you out there suffering at least give this a try. I was at my wits end...the oxygen didn't work and even after the imitrex injections the headaches would come back in a few hours. I never thought in a million years a concoction of vitamins would end my suffering and defeat the beast...but thus far that is the case. Have to say it again this site is a Godsend for those of us suffering from this horrific pain. Sadly there are probably many out there who are not even aware of this site and are suffering and have been misdiagnosed and gone through God knows how many useless tests and procedures. Will keep you updated on my progress with the vitamin regiment...so far...so good!!!

Gary,

Thank you for the kind words. 

Treating cluster headache (CH) patients with the vitamin D3 anti-inflammatory regimen to prevent their CH represents a paradigm shift from the conventional Standards of Care recommended treatments for CH.
   
The standards of care recommended treatments address the neurological symptoms of CH as a trigeminal autonomic cephalalgia (TAC) with neurogenic origins in the hypothalamus and manifestations in the trigeminal nerves.  Acute treatments include oxygen therapy inhalation with non-rebreathing mask at flow rates of 15 to 25 liters/minute, followed by Sumatriptan Succinate (Imitrex). 

Subcutaneous injections of Imitrex are effective in aborting CH in 5 to 10 minutes.  Imitrex nasal spray can be effective in 10 to 20 minutes.  Imitrex tablets are usually effective in 20 to 30 minutes.  Typical prophylactic treatments include a prednisone taper as a transitional preventative while titrating up with the longer-term preventative verapamil, a calcium channel blocker and in some cases, lithium. 

Greater Occipital Nerve (GON) blocks and Sphenopalatine Ganglion (SPG) blocks have also proven to effective preventative treatments for some episodic CH'ers.

The anti-inflammatory regimen with vitamin D3 is a completely different treatment modality that addresses vitamin and mineral deficiencies as an underlying cause or contributor of CH. 

That > 82% of over 600 CH’ers respond favorably to a daily regimen of vitamin D3, Omega-3 fatty acids and the vitamin D3 cofactors that support vitamin D3 pharmacokinetics and pharmacodynamics suggests CH is a genetotrophic disease. 

In 1956 Dr. Roger J. Williams, PhD., the biochemist who discovered the B-vitamin pantothenic acid, coined the term "genetotrophic disease" to describe diseases which resulted from genetically determined nutritional metabolic needs not being met by the individual and which result in poor gene expression. 

Professor Arno Motulsky, University of Washington School of Medicine, a founder of the field of pharmacogenetics, i.e. the role of genetic variation in response to drugs, has recently argued that many of the common degenerative diseases are the result of the imbalance nutritional intake with genetically determined needs for good health.

If you stop and think about it, there are a number of diseases that meet the definition of a genetotrophic disease... 

Beri Beri - caused by a lack of vitamin B1 (thiamine).

Scurvy - a disease resulting from a deficiency of vitamin C.

Rickets - a defective mineralization or calcification of bones caused by a deficiency or impaired metabolism of vitamin D.

Osteomalacia - The most common cause of osteomalacia is a deficiency of vitamin D.

So it's not a stretch to opine that cluster headache is also the result of a vitamin D3 deficiency...

Who knows... In 10 to 20 years, the medical community might just consider cluster headache a genetotrophic disease...

In the mean time, those of us who use this regimen of vitamin D3 and co-nutrients to prevent our CH, know it as a safe, healthy and cost effective alternative to some very expensive pharmaceuticals used to treat our disorder.

Take care,

V/R, Batch

    I continue to do well on the vitamin d-3 regiment. My headaches are all but gone. I occasionally get a few shadows but for the most part I am headache free. I know I am not in remission as I can place pressure on my right eye and illicit some pain to the area. I also have pain behind my neck I still feel when I press on it. Again I would never have thought a group of vitamins could tame the beast, but it has and I am so thankful to Batch and this board. This may not work for everyone but if you have not tried it and nothing else is working what have you got to lose. I take exactly what Batch shows in his photos no varying. Another benefit is I am a runner and I used to have some minor pains in my right leg when I ran...these pains are now gone, not to mention I have lots of energy. I completely got off the Verapamil which was doing me no good at all. All I take now is the vitamin regiment but I do have my imitrex shots available if a relapse occurs. Batch, would like your opinion on the other topic regarding the best information on cluster headaches...very interesting read. Would like your opinion on the licorice root.

Hi Gary,
On your  :question about Liquorice root, you can find
information about this on our sister site, Clusterbusters,
the link is to your left at the bottom of this page, but
taking this remedy long term is not recommended.

Hoppy.