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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> My experience with D3 treatment
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Message started by mhadley on Jun 25th, 2015 at 12:19am

Title: My experience with D3 treatment
Post by mhadley on Jun 25th, 2015 at 12:19am
Hi all, thought I would report on my own experience with the D3 treatment folks talk about.  I'm very hesitant to say this is proof of anything; absent a double blind trial we need to be careful about concluding anything.  Clusters come and go and it isn't always the last thing that made them go away. But anyway with that in mind--I had a really good PF run for about five years through high dosage Verapamil and very rare use of Imitrex.  I was feeling very lucky.  Summer of 2014 they came back and I could not get them under control.  After about six months I decided to try the D3 regimen.  I don't do everything, mostly because I can't swallow large pills.  So my daily regimen is just:
--960 mg Verapamil ER
--3x360mg Fish Oil (I use the mini Nature Made, easier to swallow)
--3xD3 5000iu
--2xK2 100mcg
--One a day men's multivitamin
That's it.  Since going on it about six months ago I've been completely pain free.  Not needed Imitrex once.  Like I said, it's very possible my cluster ended on its own and I'm just off cycle. Also possible the Verapamil just got back in control.  But I'll tell you that I'm staying on exactly this regimen for now.


Title: Re: My experience with D3 treatment
Post by Hoppy on Jun 25th, 2015 at 2:36am
My thinking is the 960mg of Verapamil is working as a
preventative for you, not the vitamin D regime, but hell,
your getting all the other benefits those vitamins give. So,
If you really want to know if the vitamin D regime works
for you! Then my advice is you stop taking the
Verapamil, and prove it to yourself one way or another.  :-/


Cheers, Hoppy

Title: Re: My experience with D3 treatment
Post by Batch on Jun 25th, 2015 at 3:03pm
Hey Mhadley,

Thanks for the feedback on your experience with the anti-inflammatory regimen.  I'm not sure how much magnesium you're getting from the one a day Multivitamin.  If you're not experiencing any hand or foot cramps, you may be getting enough magnesium from dietary sources plus the multivitamin.

I've gone over your posts and it's difficult to tell if you're a chronic or episodic CH'er.  If you're chronic and you would like to know if the anti-inflammatory regimen is responsible for your string of PF days, you can do as Hoppy suggested and stop the verapamil.

Alternatively, you can simply stop the anti-inflammatory regimen.  I do this on a regular basis at least twice a year as a burn-down test of my 25(OH)D reserves.  During the summer and winter months, I can usually last a week before my CH return.  During the spring when the pollen count is heavy or fall when leaf mold is present, it only takes a couple days before I my CH return.

I usually load with 50,000 IU/day vitamin D3 and extra magnesium for a week as soon as I get the first hit.  This usually limits the number of CH to one or two before the vitamin D3 kicks back in and I'm again CH PF.

I realize this may sound like a crazy thing to do...  However, once you've done this and restarted the anti-inflammatory regimen and you're again CH pain free, you gain a sense of confidence in this regimen that will last a lifetime.  You'll have also obviated the need for a double blind trial...

The third option is to talk with your neurologist and start tapering off the verapamil.  There's a long list of CH'ers who have done this and they're still CH PF.

Finally, there's one more environmental factor that can make nearly all CH preventatives less effective and that's an allergic reaction...  In most cases it's a high pollen count or mold spores that causes the allergic reaction, but it could just as easily be a food type that's causing the reaction.  When this happens, the allergic reaction triggers a flood of histamine that all too often results in neurogenic inflammation.  When that happens you're usually in for a world of CH hurts...

The best course of action if an allergic reaction is present or suspect, is to start taking a first-generation antihistamine like Benadryl (Diphenhydramine).  Benadryl passes through the blood brain barrier to block histamine receptors on nerve cells. This blocks the inflammatory effects of histamine.  Second- and third-generation antihistamines cannot do this.

Taking a 25 mg tablet of Benadryl every 12 hours is usually sufficient to bring an allergic reaction back under control and this enables the vitamin D3 to continue preventing your CH.

Take care and thanks again for the update.

V/R, Batch

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