PS - No colds or other infections that I'm aware of that could be depleting my 25(OH)D reserves.  Frankly I feel great from the neck down.

I think it's the latter. There's a reason many CH vets call it Dopeymax.

HI Batch and all here
Have not really been in for a while, I have been sat on tenterhooks as for the first time in 15 years I am having a spring without the beast.  Back in Feb Batch you told me to keep the faith and this years would be a non event.  Well I am sat here without even a shadow this year, I have a large G and T next to me and life is so good.  If you are not yet having success with the regimen then keep with it. first year I did not really keep to it religiously, and i got hit to a lesser extent regularly.  THen I did not keep it up after the episode of hits finished, then I got hit again the following year, this time i got into it heavily and it stopped quicker with the regimen, this time though I kept going.  I take the full regimen every single day and have done now for over a year, since the beast stopped last year then I have had no hits since, I should be struggling with major hits now.  I am completely and utterly pain free.  I think that in my case long term use of the D3 regimen has been completely effective.  Do I notice any ill effects, only one, lets say I am often quite loose when I go to the toilet, at least i am never constipated!!  If you are struggling and feeling that perhaps this is not for you keep with it, dont stop ever, you will come through it, and you will be so much healthier as well as an added benefit.
Many thanks Batch you are a legend!

Ian

SouthernCluster wrote on May 3^rd, 2013 at 8:07pm:


Hope I didn't speak too soon.  Headaches last night and today (no wine involved, no changes to conditions).  Both handled easily with O2, thankfully.  Will keep the faith and report back.

Just an update, I've been PF for 15 months

10,000 IU D3
500mg Magnesium
500mg Potassium
500mg Calcium Citrate
2400mg fish oil

It's been working well, no HA's, no bad side effects.

Tell your doc that you're willing to pay for it and that she should just order it, please.

Then talk to the lab and ask them if they will just charge you their normal negotiated rate and pay cash for it. Shouldn't run you more than $40 or $50.

Erk
   I too, had no good response to the D3 protocol.  I had my levels tested and they were up in the high eighties, after seven weeks on it.  I still take the combo, but its not working for me,  I changed my diet, etc. tried the baking soda thing etc.  it just doesnt work for some.  I am going longer than usual as well, although I skipped a cycle last year so the beast is probably punishing the crap out of me.  I already bought all of the vits, so I will finish them out, but I dont think I will buy any more because after four months,  I think I would have seen an improvment.  Things are as bad as they have ever been.  But , as Batch said,  some people take longer to respond, and maybe you should give it some more time.  Just imagine, if you gave up a week before you would have seen great results.

chrisw wrote on May 9^th, 2013 at 8:28am:


Oh Chris, he is the man!

Joe

Jeannie - Be sure you're getting an adequate amount of zinc, magnesium, vitamin A (retinol), and boron.

Could be you're like me - VERY slow to ramp up and get into the sweet spot.

Edited to add: You might also want to try a half-teaspoon of baking soda in a small glass of water 2 or 3 times a day.

I've been onit since Easter and haven'nt noticed real change in clusters but feel better overall.

I think this outstanding Pete!!!

Hi all,

I wanted to give an update, since it appears that I am not in fact pain free, despite the Vit. D treatment.  Interest news though, to say the least.

After 10,000 iu of D3 per day since January of 2013, my 25(OH)D levels went from 14 ng/ml to 76.9, tested last Monday. 

My cycles usually come in the Fall or Winter.  I appear to be in, or fighting, a cycle now, in May, which is new. 

My success with the regimen thus far appears to dependent upon the magnesium, and not just the quantity but the type.  Here's what happened:

- Tuesday before last (about a week and a half ago), I had a low grade evening hit that woke me up.  Aborted with sumatriptan.
- Wednesday, upon Batch's suggestion, I cut the calcium in half and bought magnesium glycinate, 400mg.
- Thursday night slept great (with the help of extended release melatonin), and reported to the board that I was pain free and possibly not in cycle.
- I took the mag Thursday and Friday night, causing some unwanted gastro side effects Friday night. Believing I was not in cycle and wanting to feel good on my weekend trip out of town, I stopped the mag, but continued everything else.
- Monday morning woke up with a "stormy" head
- Tuesday woke up with a low grade hit (at this point obvious that I am in some kind of cycle)
- Wednesday I tried magnesium oxide, hoping it would still protect against the CH's but be easier on my stomach given the lower bioavailability.

Between Wednesday and now, the headaches didn't stop with the magnesium oxide, but they never exceeded more than a low grade, i.e. enough to wake me up but sometimes enough to sleep through or that I could abort with oral sumatriptan (my neurologist is still out of the country, so I have no O2, conveniently).  Yesterday I switched back to the mag glycinate, taking 400 mg around 2 pm with lunch.  No gastro side effects (yet), and my shadows had all but cleared up by last night.  Slept all night with the aid of extended release melatonin...but woke up with probably about a kip 5 this morning at 8 am.  Aborted with oral sumatriptan and currently feel hazy, but fine.

What I've learned from this is that the mag is important.  However, you have to take a mag supplement that is sufficiently bioavailable that there is enough of it in your system to do its thing (I think the Batch recommendation is glycinate or calcitrate, both with apparently high bioavailability).  Oxide may not do the trick.  If the mag is making your stomach upset, taking with a meal may help.

This is just my 2 cents.  I'm hoping that the next couple days and nights with all the cofactors and mag glycinate are smooth.  If this gets out of hand, I'll have to switch to prednisone and verapemil and ride it out.  I'll look forward to any comments and wish you all some good, pain free time.