I am curious if anyone here has ever discussed the D3 regimen with a knowledgable doctor who specializes in CH.  I showed some of the info/data to my neuro who is pretty good on CH knowledge and treatment and he was deeply skeptical.

Has anyone had more encouraging responses?

Thx.

I've discussed it with multiple doctors, including my neurologist when I last saw her for migraine related issues. Just about all were very interested, especially when they heard how much of an impact it had made to my CHs, just 10 in almost 3 years and none in just under two years. That was after my first cycle which lasted a shade under 11 months (so almost qualifying for the chronic label).

What they want to see is a formal study with all the usual controls, like double blind, placebo, etc. in place.

What Mike said.  My Neuro is not a CH expert, but I love him because he will work with me and is willing to learn, even from a patient.  He was skeptical about D3, and was concerned about my blood levels, but has become more interested as I have had success with it.  I'm not PF, but about 75-80% better as long as I keep my numbers high. 

Jerry

My neuro is really excited about my progress on it and stated that he has been using it on MS patients and will be recommending it to CH patients also.

He suffers from migraines and is willing to try it himself for that. He's open to anything that will work. And seeing me go for six weeks without a CH was amazing to him (the longest I've gone without a CH since 97).

My question - if you're on D3 regimen and it's working - WHY would your doctor NOT be excited for you and start looking into it for others? Just asking? :-*

BarbaraD wrote on Jan 7^th, 2014 at 7:17am:

My question - if you're on D3 regimen and it's working - WHY would your doctor NOT be excited for you and start looking into it for others? Just asking?

Lawyers

That is the real reason why so many doctors will be reluctant to endorse our use of vitamin D3 or to recommend it to others since there is a lack of large scale medical trials using double blind protocols.

But plenty are very interested in it for sure when they see the results.

Barbara:

I am not currently on the regimen.  I came back into full cycle a few months ago and have been using the usual cocktail of Verapamil and Indocin which is having a good effect. 

I asked my neuro to look over the D3 materials with an eye toward trying it.  His response was essentially that there is no medical reason to believe that this would have any effect on CH.  As noted, he is pretty open minded in most cases, regularly prescribes O2, and seems up to date on the CH literature.

Since I currently have the beast in check I plan to wait the end of the cycle and then switch off the hard drugs in favor of the D3 to see if it can help forestall the inevitable next onset.

"I asked my neuro to look over the D3 materials with an eye toward trying it.  His response was essentially that there is no medical reason to believe that this would have any effect on CH." 

There must be a reason it works though. Over 80% success rate can't be coincidence.

I've never been much of a believer in taking loads of suppliments. I always thought if you had a good diet, and were not deficient in anything, then that was good enough. If I didn't have rickets, scurvy etc. then I was getting enough of what I needed.

But, I do have CH and I was deficient in D3. I saw a possible connection,  so I changed my tune and decided I should be willing to try anything once. I've been on D3 for about 6 months now and am no longer deficient, and while I am not totally pain free the difference is amazing. My CH's are much shorter in duration and the pain is mild enough to be unnoticeable to others. So it works for me.

I would start immediately - you have absolutely nothing to lose.
Good luck with it. Maz.

Just because a doctor does not understand something or can see no reason for something to work based on their experience does not mean that it doesn't work.

The 80% success rate is either due to it working or a very powerful placebo effect. What is remarkable is how many people who are chronic benefit from this.

Well something is sure working for me. Haven't had a hit since Oct 21st and that's amazing to me (and those of you who've known me for a long time). I've been chronic since July of 1997 and have NEVER gone that long (or even over a week) without a CH.

I thought the demand valve was great (and it was), but this is something else.. I'm NOT hurting and I wouldn't miss a dose of vitamins. But just the D3 alone won't get it... have to put the rest of the regimen to work with it (or so Pete told me).

I've tried everything from banana peels to tobacco sauce to who knows what to stop these things and this is the only thing that's worked so far.

I'm a believer...  :-*

BarbaraD, that's fantasic,  October 21
     that was when I basically went p/f as well, well definitely when my cycle stopped, and minimal hits since then,    so I know exactly how you feel.
im actually changing doctors at the moment, not neurologist, as my normal one is just to in excessable, 3 days a week, and the moved. so my first visit to him for a prescription of verapamil and I was amazed at his open attitude.  he said its about letting go of our basic training and the drug companies recommendations and trying these alternative treatments. I spent about an hour with explaining my past and the regime, he does in house blood sampling, which means I don't have to go to the local blood draining centre LOL  so it was a real pleasant surprise.
regards
colin

I'll reiterate this one... Finding the "right" doctor is the best thing you can do for CH. One who will work with you and will be open-minded.

I've been very lucky with my neuro for the past 20 years. His main goal is to get me PF and he's willing to go along with anything WE come up with here. And he LISTENS to what we come up with and asks questions.

He's very excited about the D3 regimen and said he's going to prescribe it to other CH patients since it seems to be working for me (and I've been his problem child for the last 20 years).

The success rate with D3 has been so great that there IS something here with it so if your doctor doesn't understand it - then I'd say find another doctor. Because it IS working for too many people NOT to be worth looking into.

With that said... I'll get off my soapbox.  :-*