Hi,

I am close to 3 weeks on the D3 regime, and so far it is very promising.
Just wanted to let you know how this is working for me, since it seems to be several of us starting this these days.

Basic info: Female 47 y/o, CH sufferer since 1989, only medication Imigran injections, attack starts exactly 1 h after falling asleep, and keeps coming all night, shadows all day.
Cycle usually between 5 and 8 weeks, returning every 4th or 5th year.

Had bloodwork done this fall, came back with "Possible vit D deficiency"
Test read:
S-vit D (25-OH)  65,5  nmol/L      should be 50 - 200

So 2 weeks before this cluster cycle started, I started taking 5000 iu a day.

Cluster cycle came, and to my horror the Imigran injections did not work this time. I went to cyberspace for help, and found this site and the D3 regime.

Started up with a loading dose of 50.000 iu and 10.000  a day after that togehter with 1000 mg fishoil, 400 mg magnesium, 400 mg calsium citrate and a multivitamin to cover the rest.

I had an imediate reaction the first night. A lot of ch-attacks, but all very short and no more than Kip 7. Back in be within 15 min every time.

Next night was the same. The two following nights the attacks was a little longer but still no more that Kip 7.

Then I had the nigth from hell, Kip 9 for 3 hours.
Next day I took another loading dose of 50.000 iu, and the same happend again.
2 very good night, hardly out of bed, then 3 nights of a short Kip 7 and a Kip 6.
2 nights ago I felt it was speeding up again, so yesterday I took another 50.000 iu, and had a great nigth again, turning in bed with the Kip6, and fell asleep within 2 minutes.

My plan now is to increase the daily dose to 20.000 iu, to see if that is enough to keep the beast away so I don't have to take another loading dose of 50.000 iu for the 4th week in a row. Maybe that will help on the shadows during the day also.

Hey Vikinggirl...

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Thanks for the detailed feedback...  It sounds like you're starting to get a good handle on the beast with the anti-inflammatory regimen.

By our lab testing standards here in the US,  a 25(OH)D serum concentration of 67 nmol/L (26.8 ng/mL) indicates a vitamin D3 insufficiency...  Some of the vitamin D3 experts consider it a deficiency... 

We use a normal reference range for 25(OH)D of 75 to 250 nmol/L.  Your target serum 25(OH)D concentration should be 212.5 nmol/L and most CH'ers respond to this regimen when their 25(OH)D serum concentration reaches a range of 150 to 275 nmol/L.

Your neurologist will likely suffer anal leakage if your 25(OH)D gets above 200 nmol/L.  When that happens, have him test your total calcium and PTH (Parathyroid Hormone) serum concentrations...  Both should be well within their normal reference ranges for these lab tests... and that will calm his irritable bowel syndrome...

An up-tic in frequency of CH after starting this regimen is an interesting phenomenon and not uncommon.  We don't know why it happens.  That said, roughly 5% of the CH'ers who start this regimen experience an increase in the frequency and severity of their CH for a few days to a week.

You're already on the accelerated dosing schedule but are you taking the rest of the anti-inflammatory regimen supplements?  If so I'd suggest you cut the calcium intake for a week and bump your magnesium intake to 500 mg/day. 

Vitamin A (retinol) is also an essential component of this regimen as it plays a significant role in supporting the autocrine path of vitamin D3 metabolism that's responsible for the genetic expression we think prevents cluster headaches... Most multivitamins contain sufficient vitamin A (retinol).

When you get your cluster headaches under complete control with this regimen and PF for at least a week, make sure your neurologist is aware of it...  We'll need to have him call a few other neurologists there in Norway who think I'm a crazy snake oil salesman...

Take care and please keep us posted...

V/R, Batch

Hi Batch,

;D  You really nailed me with that drawing.....give me short, dark hair and you have a pretty good picture of me fighting the BEAST.

Thank you so much for your post and your explanation. I see you help all of us newbies with this regiment, you must truly be a good man.

Yes, I am taking the rest of the supplements, have been from the beginning except for the Calcium citrate that i started just 2 days ago. I ordered it online from US, and it took its time to travel over the sea...

Daily dosage is now:

D3 20.000 iu  (increased from 10.000 today)
Fishoil 1000 mg
Magnesium 400 mg, will increase to 500 mg
Calcium 400 mg, will decrease to 150 mg (that is 1/2 tablet)
1 multivitamin to cover vit A and the other things

I will of course keep you posted, suppose it is of interest for all of us starting D3 now. I know I am curious about how other do, and if they have the same effect as me.
At least I am not scared to death to go to bed anymore.

Again, thank you very much, and by the way, crazy snake oil salesmen is a favorite over here.

Connie

I see you help all of us newbies with this regiment, you must truly be a good man.

An under statement if ever there was one. ;)

Hoping you find the relief I have with the D-3.

Joe

Hey Connie,

Uff da!  Your post sounds like a plan (SLAP)...  a good one too!  Bump the Omega-3 Fish Oil up to 2000 mg/day and you'll have all the bases covered.

Be sure to take the vitamin D3 and Omega-3 Fish Oil with the largest meal of the day with the most fats... This improves vitamin D3 absorption by up to 50% over taking it on an empty tummy.

The following chart illustrates response time data from the online survey of 110 CH'ers taking this regimen to prevent their CH... 

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So far 80% of the 110 CH'ers have experienced a significant reduction in the frequency, severity and duration of their CH.  70% experienced a 24 hour pain free period and 60% remain pain free.  It works equally well for episodic and chronic CH'ers.

Accordingly, the odds are in your favor that you'll experience a favorable response to this regimen within the next 10 days to 2 weeks...  And if that doesn't happen, make sure you get another lab test for 25(OH)D...

If it's up in the green zone (150 to 275 nmol/L) and you're still getting hit... there's always the nuclear option...  Lutefisk  ::)

Fortunately, there are a lot of other nutraceuticals to try before it comes to that...

Take care and please keep us posted.

V/R, Batch

Batch,

You ARE the man!

Don

Vikinggirl wrote on Oct 29^th, 2013 at 6:10pm:

I see you help all of us newbies with this regiment, you must truly be a good man.

He helps the non-newbies too!

And it isn't just with D3 but Batch is also the oxygen guru too.

Thanks again  :)

Bumping fishoil and making sure that my stomack is ful !

ANYTHING to avoid the Lutefisk !!!!!!!
In fact, getting control of CH must be the ONLY reason to eat that awful stuff  ;)

Oh I hear you....fish oil burps on an empty stomach  [smiley=hurl.gif]

;D

Joe

Guiseppi wrote on Oct 30^th, 2013 at 9:07am:

Oh I hear you....fish oil burps on an empty stomach  [smiley=hurl.gif] ;D Joe

Ha, ha. That smiley says it all  8-)

Finally back with an update. A little late, but I wanted to see "things" over time before i got back to you.

It has been 10 days since I bumped D3 to 20.000. iu.
Quite good nights, got down to 1 attack, and that was a minor one every night, max Kip 7, over in 15 min.
Then I had a day with really bad shadows, and for the 4th week in a row I took a loading dose of 50.000 iu.

That is 5 days ago, and I have had PF night ever sine  [smiley=2vrolijk_08.gif]

I had a few short shadows on Friday, but that is all I have felt of the beast these last 5 days.

I don't think I am out of the woods yet, but I FEEL GOOD  !!!!!!!!!!!!!!

That's awesome! Hope to hear even more good news! Man this D3 regimen is something else, isn't it?

Jair Crawford wrote on Nov 11^th, 2013 at 12:57pm:

Man this D3 regimen is something else, isn't it?

D3 is definately my new best friend !!!
It's even better that  .........x   :D

Hi Connie,
I'm keeping my fingers crossed for you.

Wishing you pfd forever, Hoppy.

Hey Connie,

Uff da!  Thanks for the update.  It sounds like you're getting your 25(OH)D up in the therapeutic range that gets you pain free and keeps you that way.

Try to get another 25(OH)D lab test in a few weeks and let us know the results.  Like I said earlier, there are a few neurologists there in Norway who think I'm a wacko snake oil salesman full of lutfisk suggesting vitamin D3 prevents cluster headache...

Take care and please keep us posted.

V/R, Batch

Hoppy wrote on Nov 11^th, 2013 at 3:05pm:

Hi Connie, I'm keeping my fingers crossed for you. Wishing you pfd forever, Hoppy.

Thank you Hoppy, and the same right back to you  :)

Yes Batch, I totally agree with you. I also think that I am within the therapeutic level now.

Everything points to that.
I had a possitive change from day one with the fist loading dose, got better for a few days and then a little worse again. New loading dose, first better and then a little worse just as the first time.
This has happend 4 times now, so to me it is clear what is happening.
Every loading dose has brought med closer and closer to the green zone, and the last one 5 days ago did the trick.

Since my cycles normally are a few weeks loner that this, I will continue as I am today with the 20.000 iu. Hopefully I will manage to keep within theurapeutic level now, without the weekly loading dose.

Will have bloodwork done in a few weeks, and of course keep you posted.

Thank you so much Batch, for all your help. You truly are a lifesaver  [smiley=hug.gif]

DAMNIT Viking that's AWESOME news. I'm 3.5 years pain free on D-3, so glad to hear it's working for you too. Crossing my fingers the beast never finds his way through.

Joe

Yes Joe, this is THE best news in a veeeery long time  :)
It is such a relief not beeing afraid to go to bed.