Greetings,
I've recently become aware of this wonderful site and felt it necessary to share my experience and gratitude here. I'm 39 years old CH started in my mid 20s, episodic with attacks every year in late summer and winter usually lasting 4-5 weeks and mostly at night every 2-3 hours or as I now understand: when I enter REM sleep.  I went to a couple Drs in the beginning before I understood anything about this condition, and unfortunately it was always kind of dismissed by them and since it would completely disappear for months at a time I would not be persistent with visits.
     I have been very aware that I missed my annual cycle of attacks this past fall that would have included the Thanksgiving holiday. It was really a noticeable and pleasant event for me to not have the fear of an attack around family this year and I have been wondering why it didn't happen.
     Well this past Monday night around 8:00pm I felt it start and within 10 mins...It was ON! Full blown k-10 out of nowhere! After I spent the next 2 hours in hell I thought of all the things that could have brought it on.
    I had been low carb dieting for about 6 mos prior but got off track around Christmas and also quit taking the vitamins and supplements which included 4000IU D3, 1000mg fish oil, and a multi vitamin of calcium, magnesium & zinc. Well Tuesday morning I immediately initiated the vitamin regime and began limiting carbs to 20g/ day. This diet also calls for lots of water  which I have successfully used to abort an attack in the past,  but I am beginning to think it's the D3/fish oil that has had an effect.
     I began researching this morning to see if my theory had any merit and was led to many post by Guisseppi and Batch about the topic and WOW! Could it really be something this simple?
     I only had 4 really bad attacks this week(of what I consider my annual cycle period), the last of them during the night on Thursday, This morning(Sunday) I awoke and noticed the crunching sound in the back of my neck and slight numbness in my jaw  which always accompanies a cycle had almost disappeared. I think today is too early to celebrate with a beer, but I do have a calming feeling of success!
Thank you so much for the efforts and support of this site, I have a good feeling about this concoction of natural supplements and encourage all to try it if you haven't. I'm gonna have a stiff drink after a pain free 7 days, Ill let you know how it is. Thanks Again.

I think the biggest problem with this regimen is it goes back to what your daddy always told you: "If it sounds too good to be true, it probably is!"

Honestly, this seems to be the exception to that rule. It is that simple, and it works. Coming up on 3 years cycle free after well over 30 years of episodic CH. I swear by it. Lemme know how the beer test goes, will be looking forward to the results.

Joe

I am Elated! I have spent the entire day (PF) here reading the incredible stories and in-depth replies by Batch on his D3/fish oil regime. Hope Im not getting ahead of myself here but I feel like this is very close to miraculous! This treatment should be headlined on the homepage at the very least. This needs to be know by everybody dealing with this nightmare!

unclebbq wrote on Feb 17^th, 2013 at 9:29pm:

This treatment should be headlined on the homepage at the very least. This needs to be know by everybody dealing with this nightmare!

It is miraculous to those of us for whom it works. Problem is that it doesn't work for everybody.

Hey Unclebbq,

Thanks for posting your results after starting the anti-inflammatory regimen with 10,000 IU/day vitamin D3.

Joe is correct...  It's true...  This regimen is that simple... and it works!  The evidence is mounting with sufficient numbers and statistical significance, that the relationship between a vitamin D3 insufficiency/deficiency and cluster headache is clearly causal and not just a coincidence...

At this point I think it's safe to say that cluster headaches, and likely the other trigeminal autonomic cephalalgias including migraines, are either a direct result of a vitamin D3 deficiency/insufficiency or their triggering mechanism(s) are aggravated by this condition lowering the triggering threshold.

If you stop and think about it, this is essentially no different than rickets, osteomalacia or osteoporosis being caused by the same vitamin D3 deficiency.

The important thing to remember is the anti-inflammatory regimen with vitamin D3 is not a cure...  If you're a chronic CH'er and you stop the intake of supplemental vitamin D3, your cluster headaches will return within a matter of 10 days to two weeks.   

If you're an episodic CH'er and you stop the intake of supplemental vitamin D3, your cluster headaches will return with your next regularly scheduled cycle.

Bottom line...  It's prudent to take this regimen for life...  The odds are you'll likely live longer too.

Brew is also correct...  This regimen doesn't work for all CH'ers...  That said, the present efficacy is 81%, up from 75%, and edging higher so we are learning how to make it effective for an even greater percentage of CH'ers who start this regimen. 

Determining why 19% of the CH'ers who start this regimen don't experience a favorable response takes up a lot of my time.  It's been worth the effort because we do have some fascinating answers...

Based on my analysis of related posts here at CH.com, the online survey of CH'ers using this regimen, PMs, email, Skype and phone calls with CH'ers having problems achieving a favorable response, I've come up with likely reasons that fall into three categories:

The first category was easy to spot.  Too many CH'ers give up and stop taking the anti-inflammatory regimen after a few weeks or less when they don't have a favorable response. 

It's this category where feedback from other CH'ers and lessons learned have resulted in the most progress...

• Knowing that 5% of the CH'ers taking this regimen don't respond until they've been taking this regimen for a month or two has given several CH'ers hope and courage to stick it out a little longer.
  

• Getting tested for 25(OH)D after a month on this regimen, no matter if there was a favorable response or not, has also helped.  Knowing their 25(OH)D serum concentration was below the "green zone" (60 to 110 ng/mL), where 81% of CH'ers respond, also motivates CH'ers to stick it out a little longer.
  

The final area of helpful feedback and lessons learned, deals with "Tuning" this regimen.  Tuning includes:

• Take vitamin D3 and Omega 3 fish oil with the largest meal of the day - This improves absorption

• Vitamin K2 (MK-7) plays a far more important than originally thought. Vitamin K2 is an important part of calcium homeostasis and vascular health. It works in concert with vitamin A to make vitamin D3 even more effective. The latest data on vitamin K2 (menaquinone-7 (MK-7) indicates we should take between 100 µg/day up to 1000 µg/day (1 mg/day) menaquinone-7 (MK-7) to send calcium to the bones and away from the arteries to prevent plaque buildup.

• Without vitamin A at RDA, the peripheral or autocrine path of vitamin D3 metabolism where 25(OH)D is converted to 1,25(OH)2D3 at the cellular level throughout the body would not be possible.  It's becoming more evident this path of vitamin D3 metabolism is an essential part of the mechanism of action that prevents our CH

• Use a more aggressive vitamin D3 dosing strategy and so far we have two that appear equally effective:

[1.] 20,000 IU/day vitamin D3 + a 50,000 IU loading dose once a week.  Maintain this dosing schedule for a month then get your 25(OH)D serum concentration tested.  If you're in the green zone by then, drop back to a maintenance dose of 10,000 IU/day.

[2.] 50,000 IU/day vitamin D3 X 2 weeks followed by 20,000 IU/day X 2 weeks then get your 25(OH)D serum concentration tested.  If you're in the green zone by then, drop back to a maintenance dose of 10,000 IU/day.

• Stopping the calcium intake for a couple weeks has also made a difference for some.

• The final area of tuning doesn't involve any of the supplements in this regimen but rather arterial/systemic pH.  Our normal pH range of arterial blood is 7.35 to 7.45.  As the pH drops to the lower end of this range towards 7.35 making the blood more acidic, the body's homeostatic mechanism that tries to keep arterial pH near 7.4 cuts in.  It signals the arteries, arterioles and capillaries to dilate, the heart to beat faster and the respiration rate to increase.  This speeds up the flow of blood to the lungs in order to pump out as much CO2 as quickly as possible as the body senses the low pH is the result of too much CO2.  Accordingly, if the arterial/systemic pH is at the low end of the normal reference range or below, the increased level of acidity results in a constant state of vasodilation which in turn makes nearly all CH abortives and preventatives much less effective and in some cases, totally ineffective.  The best way to test for this condition is to take a couple Alka Seltzers or a baking soda tonic four times a day and right before bedtime...  You make this tonic with a half teaspoon of good old Arm & Hammer baking soda in 4 ounces of water.  If either of these antacids result in a decrease in the frequency of CH, then a longer term solution of an alkalizing diet or GOMBS diet consisting of Greens, Onions, Mushrooms, Beans/Berries and Seeds may be effective.

The second category of reasons why some CH'ers don't respond to this regimen is due to comorbid medical conditions that either interfere with vitamin D3 metabolism, calcium homeostasis, or both.  These include insufficiencies of the:

• Liver

• Kidneys

• Thyroid

• Parathyroid

• Pancreas

• GI Tract

Bacterial and viral infections as well as allergies can consume 1,25(OH)2D3 (calcitriol) making less of this active hormonal metabolite of vitamin D3 available to prevent our CH. 

The lesson learned here is simple.  Even though vitamin D3 helps prevent colds and flu, when we do have one of these viral infections or even a bacterial infection, our immune system gobbles up 25(OH)D at a much higher rate...  That means a maintenance dose of 10,000 IU/day vitamin D3 may not be sufficient to prevent our CH...  so we need to add 5,000 to 10,000 IU/day vitamin D3 to the existing maintenance dose.

The third category of reasons why some CH'ers don't respond to this regimen is still not clear and there are few answers.  Here is what we know so far:

• It's characterized by no change in CH patterns even with a 25(OH)D serum concentration in the green zone.

• Some CH'ers in this category are taking vitamin A at RDA and have tried tuning their magnesium and calcium intake

• Nearly all the CHe'rs in this category are forced to use abortives like imitrex, and wide range of preventatives

• Many CH'ers in this category have either suffered a previous head injury or had neurosurgery.  They also have difficulty making oxygen therapy work effectively

We'll need more information to get our arms around the reasons why CH'ers in this category don't have a favorable response.

In closing, I urge CH'ers who have been on this regimen for at least a month to take the Anti-Inflammatory Regimen Survey if they've not already done so. 

I've had several physicians look at the raw data from this survey and they all commented this is exactly the type of information needed to get the ball rolling on an RCT and to attract the required funding.  See the following link for instructions on this survey.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take care,

V/R, Batch

unclebbq wrote on Feb 17^th, 2013 at 9:29pm:

This treatment should be headlined on the homepage at the very least.

My thoughts exactly!  [smiley=sayyes.gif]

Why not add a yellow tab on the side bar with a link to the Anti-Inflammatory Regimen and Survey thread? (Evidently I can't post a link until I've made 10 posts. I'd better get busy. ;) )

I've been wondering why there's one for water x 3, but none for D3 and the anti-inflammatory regimen. It certainly would have saved me a lot of time looking for information I remembered seeing here in an earlier visit.

Unclebbq - It's great to hear you're having good results! In my opinion, this regimen is a lifesaver. Thanks again to Batch for his hugely valuable contribution. [smiley=thumbsup.gif]

We prevent first time posters from providing links as it helps reduce the "spam" advertising generated by computers! The link is being discussed...stand by.. ;)

Joe

Batch your one heck of a guy! As I'm sure many here do, I feel indebted to you. I've been taking 10,000IU d3 as of Sunday along w fish oil and a calcium citrate. I have not been getting any K2 in a supplement. Today at SAMs club I purchased a bottle of "calcium citrate petite w D3 & K". A two tablet serving contains 500iu D3, 40 mcg K, 400 mg calcium. Neither it or the multi vitamin(1 a day) that I got say k2, only K. Is this the same?  I've not had an attack since I originally posted but I have had a dull regular ole headache that feels like dehydration or a hangover headache for most of the past two days. It does not feel threatening or even cluster related, just annoying. My instinct tells me I've almost got it but need to up the D3.
     I'm not a fan of the Drs. Office and have no idea what my levels are, I may have to man up and make an appointment to have them checked. I am going to begin taking 20,000 IU of D3 and see if there is a difference. However, I've gotten 3 solid nights of good sleep with out any painful interruption and this is huge. I will certainly take the survey after 30 days. An 81% success rate is amazing, and certainly more than a fluke, hopefully soon it will be 100!
     This board is great, and I'm very thankful to have ruled out the possibility that aliens have placed a device in my brain that horribly malfunctions at regular intervals. Best wishes to everyone here!

FYI - The Vitamin D Council website sells home testing kits for Vitamin D3 blood levels. Hope this helps!  :)

Thanks! I just ordered one for $70. Quite the bargain compared to an hour or two in a waiting room with a bunch of sick folks.

I'm very thankful to have ruled out the possibility that aliens have placed a device in my brain that horribly malfunctions at regular intervals. Best wishes to everyone here!

I wouldn't go that far ;).......but awesome to hear it's working so well for you. Pretty amazing stuff huh?

Joe