Hey Avalon,

Welcome to CH.com.  You've come to the right place.  Good questions too, but let's star with your headaches. 

Have you talked to your PCP or a neurologist about your headaches?  If not, you should.  Headaches are not normal.

Regarding vitamin D3 taken as part of Dr. Stasha Gominak's regimen or part of the anti-inflammatory regimen many cluster headache sufferers here at CH.com take to prevent their CH. 

Both regimen are very similar.  Dr. Gominak and I have discussed both regimen and she convinced me to add the 3-month course of vitamin B 50.  Both regimen result in better, more restful sleep.  We also suggest the vitamin D3 be taken with the largest meal of the day to increase absorption.

We start with higher doses of vitamin D3 than Dr. Gominak.  She shoots for a 25(OH)D serum concentration of 60 to 80 ng/mL which requires a vitamin D3 intake of 5000 to 10,000 IU/day plus all the cofactors.

As cluster headache sufferers, (CH'ers) we shoot for a target 25(OH)D serum concentration of 80 ng/mL and that requires roughly 10,000 IU/day vitamin D3 plus all the cofactors.

As you can see from the following chart developed by Dr. Robert Heaney, MD, it takes 5,000 IU/day of vitamin D3 to achieve a 25(OH)D response of 60 ng/mL, and that a vitamin D3 dose of 1000 to 2000 IU/day is too low to achieve a meaningful therapeutic effect.

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Regarding the spaciness and foggy feeling during the day...  How much sleep are you getting at night?  I've survey results from 127 CH'ers taking the anti-inflammatory regimen and there are no reports of spaciness or foggy feeling during the day.

What other medications are you taking?

The "Go To" link with info on all the anti-inflammatory supplements, their doses, drug interactions and contraindications follows:

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The following table represents the latest list of anti-inflammatory regimen supplements and doses:

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I've found the following supplements shown by brand in the photo below are formulated with most of the supplements we need.  I buy them at Costco, but you should be able to find similar formulations at most Vitamin Shoppes, supermarkets, Wall-Mart or over the Internet:

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If you can’t get to a Costco outlet, a CH’er in the UK has found a source for all the needed supplements at iherb.com.  See his post at the following link for details on how to order them over the Internet:

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The vitamin B 50 is not shown.  You’ll need a 3-month course of vitamin B 50 to handle any deficiencies among the seven B vitamins.  Although the Super K with vitamin K2 complex isn't essential in preventing CH, it is needed to handle the increased serum calcium made available by taking vitamin D3 at the doses we take.

There are a growing number of studies finding the super K2 complex helps direct calcium away from soft tissues and arteries directing it instead to bones and teeth improving overall bone mineral density.

There are also a number of studies that have addressed the optimum ratio of calcium-magnesium supplements.  The general consensus is to keep these two supplements at a 2:1, magnesium:calcium ratio.  Many of us have found 400 mg/day magnesium is sufficient.

We've found that taking a vitamin D3 dose of 5000 to 10,000 IU/day depletes magnesium rapidly unless we take at least 400 mg/day magnesium...  Hand and leg cramps are an indication you're not taking sufficient amount of magnesium

Hope this helps.

Take care and please keep us posted.

V/R, Batch

Gary,

The rogue heavy hits may indicate you're still fighting off the remnants of your last cold.  I've sent you a pm with some additional suggestions.

Regarding the latest method of oxygen therapy...  Did you experience any symptoms of paresthesia when you inhaled and held the lungful of 100% oxygen? 

You should have experienced a very slight tingling or prickling sensation to your face, lips and fingertips shortly after you started holding your breath.  If you didn't, practice the following forced exhalation technique and hyperventilation procedure before your next hit. 

Stand with jaw dropped like saying the word "Haw."  This gives the diaphragm full range of movement to ventilate the lungs as completely as possible.

Exhale rapidly and forcefully until it feels like your lungs are empty... they're not.  At that point do an abdominal crunch like doing situps and hold the chest squeeze until your exhaled breath makes a wheezing sound for a couple seconds.  This will squeeze out another half to full liter of exhaled breath that's highest in CO2 concentration.

Then without any delay, inhale rapidly and fully from the diaphragm and repeat the forced exhalation technique.   You should be able to complete 10 inhalation-exhalation cycles in 30 seconds.  When you exhale for the 10th time, hold the squeeze for at least 4 seconds before inhaling the 100% oxygen.

The goal of this method of hyperventilation is to blow off CO2 faster than your body generates it through normal metabolism. This increases blood pH making it more alkaline.  The increased alkalinity enables blood hemoglobin to offload CO2 more completely and upload more oxygen to aid in the CH abort process.

If you've done this properly, you'll experience the symptoms of paresthesia when you inhale and hold the lungful of 100% oxygen.  The slight tingling/prickling sensations should last for 20 seconds then dissipate. Try to relax while holding the lungful of oxygen.  you should feel the CH pain level off and start to drop slightly.

At the end of 30 seconds, exhale forcibly and squeeze till you wheeze then start the entire procedure all over again.

Again, practice makes perfect...

Take care and please keep us posted.

V/R, Batch

Hey Peter,

Thanks for the update and good news.  Your CH symptoms should disappear completely as you approach a 25(OH)D serum concentration of 200 nmol/L.

Keeping your 25(OH)D near this target serum concentration also buys you a comfortable safety margin and reserve in the event of colds or flu that would easily burn through at 180 nmol/L.

Take care and please keep us posted.

V/R, Batch

Peter,

Thanks... That is great news...  Based on data from the online survey, the 50:50 tipping point is close to a 25(OH)D serum concentration of 150 nmol/L, (60 ng/mL) so you're ahead of the game so to speak at 163 nmol/L.

Take care and thanks again for another important data point.

V/R, Batch

Gary,

Thanks for the update... and glad to hear you had a better day.

I should have added the following caveat to my suggested instructions... 

"If using this method of oxygen therapy hasn't slowed or halted the increase in CH pain after two complete 1-minute sequences, take the closest bailout abortive, i.e., imitrex SC injection or nasal spray...  and then return to the oxygen therapy..."

Before I started the anti-inflammatory regimen there were times when I felt a very nasty fast rising CH coming and I knew the pain wouldn't stop rising until it reached a KIP-9 or KIP-10 no matter what I did.  Imitrex and oxygen had no apparent effect. 

It's kind of like trying to "woe up" a runaway horse with the bit in his teeth...  No amount of tugging on the reins was going to stop the critter until it got tired...

It's the same thing with rogue CH hits...  There's no stopping the beast until it feels like it's made a meal out of the back of your eye and most of your brain on that side...

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When that happens, all you can do is resign yourself to some heavy sledding and hang on...  The only consolation is you know it will end... eventually.

Take care,

V/R, Batch

Gary,

Thanks for the update...   I like to hear good news like that.  It appears this regimen is starting to kick in.

The sculpture was done by one of my daughter's classmates at Temple.  As soon as I saw it I said to myself...  "There's the cluster beast" took out my camera and took several photos.

Regarding the vitamin C...  I'd stick with the present schedule until the cold symptoms are completely gone then drop back to 2000 mg/day.  Humans are unable to make vitamin C so a dose like this is very healthy...

If you want to turn the vitamin C into a heart insurance policy... add 2,000 mg/day L-Lysine.  That's essentially Linus Pauling's Therapy that keeps plaque from forming inside the arteries that supply blood to the heart.

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Pauling's therapy had a lot of critics... The funny part about that is Pauling had two more Nobel Prizes than any of his critics...  He also outlived most of them.

Of course if you go this route with vitamin C and L-Lysine...  you'll want to avoid sugar and in particular, high fructose corn syrup.  That crap is in everything...

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The only reason we keep a bag of sugar around here is to feed the hummers that live with us year round.  I even picked up a heated feeder to keep a warm supply of sugar water available during freezing temps.

Take care and please keep us posted.

V/R, Batch

Gary,

Good start... Given the track record for this regimen so far... I'd say the odds are well in your favor you'll continue to improve with longer periods PF...  Hang in there and thanks for the update.

Take care,

V/R, Batch

Hmmm...  I'm told a drop or two of vitamin D3 on your driver or putter might produce a better score...    

Sorry...  I couldn't resist...

Peter, Gary,  Great updates... Now that you've taken control of this disorder the next steps are getting tested for 25(OH)D and tuning the regimen by varying the ratios.  If your 25(OH)D is up around 80 ng/mL, (200 nmol/L), start by changing the calcium:magnesium ratio.

The vitamin D Council has a home test kit for $50 USD at the following link:

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Grassroots Health offers a similar 25(OH)D3 home test kit for $65 USD at the following link.  I've sent their test kits to CH'ers in Canada and they claim no problem shipping them overseas.

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Take care and please keep us posted...

V/R, Batch