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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> D3 opinion.
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Message started by TeeJ2379 on Nov 4th, 2013 at 11:32am

Title: D3 opinion.
Post by TeeJ2379 on Nov 4th, 2013 at 11:32am
I'll cut to the chase.  D3 helps my CH.  I thought I was out of cycle - so I cut my d3 down to 10k daily.  Was good for a few weeks. But then I started shadowing pretty bad.  Had one mild attack, maybe a kip 4-5 about two weeks ago.  Started to up my dose of D3.  Still had bad shadows at 15k for about 3 days.  Finally had enough of the pain, and went with a 50k loading dose.  The next few days I felt better then ever.  I've been staying around 20k daily for the past few days and my head feels clear and I feel free of the beast.  Just a note, the reason I was down to 10k for a while was my d3 levels were at 111 ng/ml and I thought 10 daily would keep my levels up - but I am guessing I was wrong.  I have not found my sweet spot yet, but I know that at 20k I feel pretty good.   I am getting another D3 test soon and we shall see where I am at.  Please also note that I had several colds pass through my household and work, and while I didn't feel "sick" I think my D3 levels dropped because I was fighting off these bugs.  Sorry for the jumbled mess of a message, but I'm writing this quickly at work.  I guess my main point is that for me, D3 helps.  I am convinced of that now.  Just need to find your sweet spot for a proper dose and work closely with your Doctor to get D3 levels tested regularly.

PF days and nights folks.

Title: Re: D3 opinion.
Post by Batch on Nov 5th, 2013 at 1:44am
Hey TJ,

Thanks for the update...  You're not alone when it comes to needing more than 10,000 IU/day vitamin D3 to stay CH pain free.

I've been bouncing between 15,000 and 20,000 IU/day for the last two months to stay PF.  No colds around here, but lots of falling maple and alder leaves...  I've also been after them with a leaf blower a couple times a week so it's likely I've been exposed to a lot of mold spores.  We've also been experiencing a larger than normal mushroom bloom that's been going on for the last two months.

It's just a guess at this point, but I suspect leaf mold spores have my immune system spun up in response to a sub-clinical (no obvious symptoms) allergic reaction and that's consuming the vitamin D3 metabolites, 25(OH)D3 and 1,25(OH)2D3 at higher rates than usual.

Don't be surprised if your 25(OH)D serum concentration comes back above 110 ng/mL and even as high as 150 ng/mL at your next lab test.  That's still well below the lower threshold for vitamin D3 intoxication. 

If your PCP or neurologist suffers anal leakage over your 25(OH)D serum concentration, have him run tests for your total serum calcium and serum PTH (parathyroid hormone).  Your total calcium should come back elevated, but within the normal reference range and that should ease the IBS... 

Your PTH serum concentration should come back near the low end of it's normal reference range. This would be consistent with a total serum calcium concentration near the upper limit of its normal reference range.

Take care and please keep us posted.

V/R, Batch

Title: Re: D3 opinion.
Post by sue_g on Nov 5th, 2013 at 5:48am
Interesting note Batch, thanks for sharing.  I know you mentioned its a guess, but how did you suspect that the leaf mold spores is a annoyance to your CH's. 
In your opinion, is it worth getting tested for sensitivity/allergies to foods by a naturalpath doc, or is it better just go with the flow, try to be aware of your seasonal surroundings.
PFW's to all :)

Title: Re: D3 opinion.
Post by The Alchemist on Dec 9th, 2013 at 11:54pm
Glad to hear about all the people who benefit from D3 or the full D3 protocol.  I have been very interested in vitamin K2 over the past year or so, a family member has osteopenia and vitamin K seems to be one of the best way to move calcium into the bones.

It is worth considering whether to take a higher dose of vitamin K.

One serving of the Japanese food natto may contain 940 micrograms. I believe that most people on the protocol take 200 micrograms or so. I believe that 200 ug might be enough to have an effect, it is a good maintenance dose, but a higher dose might activate the calcium-grabbing proteins quicker.    

K2-MK7 in natto is the most active form - it stays in the blood longer than any other form, it has been shown to be better at activating the various proteins that are vitamin K dependent (like osteocalcin in bones). 

It is easy and inexpensive to ferment natto. Because my family member cannot tolerate soy, we ferment a batch of natto every month or so using black beans or red beans, and divide it into small servings and freeze most of it. For the price of beans and a little kitchen time, we get beans that are loaded with vitamin K.

The taste of natto can only be described as spoiled or rotten - it is definitely 'an acquired taste' that people learned to accept when food was scarce. I would advise people to get frozen natto at an oriental market to become familiar with its unique aroma, flavor, and texture (thick goop, like snot). Yes, that is what it is like, and if you are not familiar with it, you will not want to eat any natto that you fermented. You probably won't want to eat it regardless, but at least you will know what it is supposed to be like, and can make yourself eat it if you don't want to spend $$$ on pills.

Natto also contains lots of PQQ, which is involved in energy production in the mitochondria. Some studies have shown that clusterheads and migraneurs have disturbed mitochondria function, not sure if this nutritional factor might also be helpful.

One potential drawback is that natto is also a rich source of polyamines, and these might be a trigger when someone is in cycle. People here have commented on various fermented foods triggering before, and there are some studies from the Italian CH group about trace amines being a trigger (and red wine is the alcohol richest in trace amines, and probably the best alcohol to trigger a neurovascular headache). Might want to use a purified K2-MK7 in cycle, and switch to natto when the beast is on vacation... maybe it will encourage him to stay away. 

Title: Re: D3 opinion.
Post by pattik on Dec 10th, 2013 at 3:13pm

The Alchemist wrote on Dec 9th, 2013 at 11:54pm:
Glad to hear about all the people who benefit from D3 or the full D3 protocol.  I have been very interested in vitamin K2 over the past year or so, a family member has osteopenia and vitamin K seems to be one of the best way to move calcium into the bones.


I was diagnosed with mild osteopenia 5 years ago. So when I started the D3 regimen almost two years ago, I was eager to see if there would be some improvement when I had a second bone density scan last month. I have taken one 100 mcg capsule of MK-7 per day religiously during this regimen.  It seems to be paying off, as I was told that the progression of the osteopenia has stopped for now.  I think I would have to be a lot worse off before I would be brave enough to eat freshly fermented natto.  :-/

Title: Re: D3 opinion.
Post by TeeJ2379 on Feb 1st, 2014 at 10:46pm
Still going strong on D3 - Coming up on my 1 year of my first cycle in June.  I've had a few shadows and a minor attack that occurred while I was sick with a cold / flu - upped my d3 dose back to 30k for a few days, and it knocked it back.  This regiment works, but you have to know your body and take action when you feel the beast edging his way back in.  These days i take 15k daily as I found 10k D3 doesn't do the trick for me.  My levels at last check were 77 ng/ml after recovering from the cold /flu - been feeling good since so I'm gonna wait till my next doc appointment to get another lab test done.  Plus new year for my HSA, so most likely I'm paying out of the pocket for the test :(

Title: Re: D3 opinion.
Post by Guiseppi on Feb 1st, 2014 at 11:26pm
3.5 years pain free for me TJ...I'm a believer!

Title: Re: D3 opinion.
Post by blacklab on Feb 2nd, 2014 at 5:16am
teej,  that's brilliant mate.
           I think we started the regime at a similar time
I think you hit it on the head with regards to knowing your body !
ive had troubles lately, but am starting to get a handle on it now.
great to hear your going well

regards
colin

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