Episodic for over 25 years, currently in worst cycle since 2009. Discovered oxygen this year and now moving to D3. Only had 2 doses so far and feel fantastic! Light shadow at normal time today that coffee quickly banished ( that rarely happens)

Wish me luck!

Here's hoping you're one of the ones for whom it works quickly.

3 days of D3 regimen in the books and feeling awesome! Had a shadow at normal time yesterday that was quickly aborted with nothing more than an energy drink! For clarity I am o ly taking the main 3 supplements in the regimen (d3, fish oil, and calcium citrate). I started the D3 at 50,000 then stepped down to 25,000, then 20,000.  Will do 15,000 today and then stay at 10,000 indefinitely.

You should get the 25(OH)D serum test, just so you have a baseline to which you can compare future results. They're not that expensive. Most labs will only charge you what they get from the insurance companies if you're paying cash.

That's wonderful!
Brew is right and get your 25 ohd lab test to monitor your D3 level to get to 60 to 110 ng/ml pain free zone and your plan sounds like a good one as you seem to be experiencing the cool effects that D3 has and makes you just feel good all around. I went pf in 3 days after 38 years of CH and going on 182 days now and pf is AWESOME!
Wishing you the best for pf days to come....Johnny ;)

5 days in the books and still feeling generally awesome! Woke up with a minor CH two nights ago but 5 mins of O2 knocked it out and I slept we'll the rest of the night. Tempted to try a beer test today...

Hi Yesdog, Delighted that you're nearly PF thanks to the D3 regimen. I too am experiencing PF thanks to it. YIPPEE YIPPEE YIPPEE. I'll definitely stay on it as it is the only thing that has worked long term for me and it means that i don't have to take Zolmitriptan anymore   :)

Tried the beer test yesterday and drank through the afternoon from 3-9, 5 beers total. No problems until I awoke with a bad one at the end of my first REM cycle. Knocked it out with an injection and went back to sleep. Maybe next weekend will work better...

Started on Vitamin D and fish oil regimen at same time as was on high doses of prednisone and verapamil, so I do not know whether there's any cause and effect directly related to the vitamins.  I seem to be through the cluster for this season -- 12 days PF, but that's after a round of Decadron and a round of prednisone.  However, I have read several articles now that link sunlight, D3, and clusters, so I suspect Batch is onto something powerful.  I am taking 10,000 units per day and about 4,000 units of Omega 3 oils.  And I will continue to do so until spring of next year, because spring (within a four-week period) is when 100% of my clusters have occured in the past 35 years.  So I won't likely be able to report progress until next year, but I will stick with the regimen until then.  Will let you know what happens.

so were the beers worth it? they rarely are.

thierry wrote on May 6^th, 2013 at 2:10pm:

so were the beers worth it? they rarely are.

They are a sign of optimism. The fact that a CH cycle might be over or at least is getting close to being over.

just to throw my 2cents in:

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

1week of D3 regimen in the books. Feeling great and more importantly not experiencing any CH symptoms at all except for after a beer test 2 days ago. I was nearing the end of my cycle soon but when I started the regimen I was in a bad week of really frequent and intense attacks (for me). Almost immediately I noticed a drop off in intensity of pain and frequency of occurrence. Definitely going to stay on it year round.

coming up on 3 years pain free after 30 plus years of episodic. I'm NEVER going off the D-3 Regimen.  :D

Joe

Well, bad news. It's been a a little over a month on D3 now and the attacks just came back with a vengeance. They never fully went away but were much better for several weeks, then all of the sudden, wham! The last 6 days have been hell! I upped my D3 dose about a week ago to a daily 25k. Also added magnesium about 4 days ago. What the hell is going on? These should be gone right now based on my typical cycle. Now they are more than one per day and at abnormal times for me, only one night without sleep interruption in the last week also. Any thoughts or suggestions?

yesdog27 wrote on Jun 10^th, 2013 at 1:00pm:

Also added magnesium about 4 days ago.

This might explain it. You need the extras, like magnesium and calcium, for the vitamin D3 you take to be converted into the active form that your body uses.

yesdog,

I also experienced increases in ha's after upping the doesage. Mine came after load dosing d3 at 50,000iu's once a week.

It was the cycle from hell for me too. I didnt go pf till I added the correct form of magnesium. It needs to be magnesium citrate- not mag oxide. It was a lttle hard to find, read the labels. Also added baking soda in water 3x a day to raise my ph. PF for a month now.

Stick with it, some us it just takes longer !


Eric

Thanks for the feedback! I now have the correct magnesium and have been taking it for a few days. I broke down and got an occipital nerve block yesterday at the urging of my Nuero  and wife. Not as much as a shadow since the nerve block 24 hours ago. I also had my D3 level checked and it is at 110. Going to stick with it and hopefully when the nerve block ends it will be smooth sailing.

110 what?

Usually measured in either ng/ml or nmol/ml. The two are different scales.

Hi Yesdog,
You wrote, " Whats the hell going on." Be patient. My last
episode was Spring 2012 when i started the D3 Regime and
for the first time in 43yrs suffering from CH's they were all
over the place i wondered what the hell was going on it was
driving me crazy not being able to catch them in time [smiley=headbanger.gif] but i persevered with the D3 Regime
through the cycle and kept on it until my next cycle was due
Fall 2013 guess what not a shadow in sight and Winter is here
down under. Heading for Europe and the UK in there Autumn
this year so keeping my fingers crossed  no CH's as thats
when mine kicked off back in 1969. I have always avoided
going back at that time of year, so here's a test.
So i wish you luck you keep pain free on D3 as i am.
Hoppy.

Brew: it was 110 ng/ml.  He was shocked by how high it was and worries I'm toxic. Made me chuckle ...

yesdog27 wrote on Jun 15^th, 2013 at 6:24pm:

Brew: it was 110 ng/ml.  He was shocked by how high it was and worries I'm toxic. Made me chuckle ...

I can relate to the high test results.  One & half years ago I tested at 103 ng/ml and had no relief whatsoever from the vitamin regimen.  It doesn't work for everybody even when your test results are flagged High!  However it does work for many, so try it!

I started this vitamin regimen again a couple weeks ago to hopefully prevent anticipated cycle this Fall.  Regardless of how high my ng/ml is this time, I am still doing it as anything this life offers as a nightmare is better than CH's!

-Gregg in Las Vegas

Yesdog27,

The lower threshold for vitamin D3 intoxication, assuming no other problems, is 200 ng/mL.  If your physician is going hyper... ask him to test you for total calcium and PTH (parathyroid hormone).  I suspect both will be within the normal reference range

We've had several CH'ers on the anti-inflammatory regimen with serum 25(OH)D as high as 110 ng/mL. No other problems and no sign of vitamin D3 intoxication.  The 25(OH)D serum concentration comes down relatively fast.

I stopped the entire regimen to test my 25(OH)D reserves.  At the time my 25(OH)D was at 85 ng/mL.  Eight days after stopping the regimen, I got slammed with a classic Kip-6 cluster headache.  I jumped back on the regimen and was PF in less than 12 hours.

Take care and please keep us posted.

V/R, Batch

Edited to add the following from the Pharmacokinetics of vitamin D toxicity - Glenville Jones, Am J Clin Nutr August 2008 vol. 88 no. 2 582S-586S.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE :

Our current understanding of the components of the vitamin D signal transduction machinery (DBP, activating CYPs, VDR, and CYP24) allows us to theorize in broad terms about how vitamin D toxicity might arise from hypervitaminosis D. Of the 3 hypotheses put forward to explain the triggering event for toxicity, increases in total 25(OH)D and free 1α,25(OH)2D concentrations are the most plausible, although they remain unproven. However, even in the absence of definitive evidence to establish the responsible metabolite, the wealth of animal studies and human anecdotal reports of vitamin D intoxication indicate that plasma 25(OH)D3 is a good biomarker for toxicity, and the threshold for toxic symptoms is ≈750 nmol/L (300 ng/mL). This threshold value implies that 25(OH)D concentrations up to the currently considered upper limit of the normal range, namely 250 nmol/L (100 ng/mL), are safe and still leave a broad margin for error because values significantly higher than this value have never been associated with toxicity.

Well, I was still getting hit hard every night about midnight without relief for over a week. I changed two things at the same time so not sure what to credit but have my suspicions. I started another prednisone taper (my third this cycle) and did not get a PF break until the fourth day which makes me suspicious that it is the prednisone. If it works for me it usually works right away. I also upped my doses of magnesium citrate from 400 mg to 800mg and fish oil from 2000 mg to 4000 mg starting on the same day as the pred taper. On the fourth day after this change I began a pain free Tim that is now finishing its second full day. Last CH I had was around midnight 2 nights ago. I can't express how wonderful a full nights sleep felt last night, although you all know exactly what I mean.

Any feedback on the magnesium citrate dose at 800 mg or the fish oil at 4000 mg? Are these normal doses for any of you, seem high or low? Could this be what changed the game for me with D3? I had a test a couple of weeks ago and was at 110 ng/ml and still getting hits.

I joined CH.com yesterday and this is my first post.  My husband is in a cluster period right now.  He is currently using just O2, but I would like him to try the D3 regimen I have been seeing on these posts.  What exactly is it?  I purchased the D3 and Omega Fish Oil last night.  Do I need to add the Magnesium and Calcium Citrate?  I would appreciate any help.  As you all know, our nights are AWFUL and he is exhausted. Thanks!

All the info you need is in the following thread:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Thank you! :)

PR921 - I would suggest you start a thread in the Getting to Know ya section for your husband with some more details on what hes on and what has or has not helped

Also look over the Supporters Corner section as you may find it helpful. 

Good luck and thank you for taking an active role in your Husband's treatment.

Thank you for the suggestions. I will check out those other areas.

Well, 10 weeks into the D3 and doing much better! It has also only been a month since I started the correct magnesium and 1.5 weeks since I upped my dosage. I have definitely turned a corner. My prednisone taper is also essentially over. The great news is that I am rarely getting hits now and when I do they are relatively mild and aborted with a red bull and/or oxygen. I even tried a beer test 3 nights ago. I did awake with a hit at midnight but it was much better than normal and I had shadows the following day that were kept at bay with red bull and O2.

Anyway, staying positive that this cycle is almost over and the D3 is working its magic. Thanks Batch!

YesDog,

Thanks for the feedback.  It sounds like you've wrangled the beast to parade rest... 

Staying on this regimen is the best way to avoid the next cycle.  Many other episodic CH'ers have reported staying on this regimen full time and it made their next regularly scheduled annual bout with CH a non-event...

Take care and please keep us posted.

V/R, Batch

3 years on the regimen...3 years pain free. I was episodic for well over 30 years, I'm NEVER going off the regimen. A tip of my cap to ya Batch, you sir are THE MAN! [smiley=sayyes.gif]

Joe

PR921 wrote on Jul 2^nd, 2013 at 9:46am:

I joined CH.com yesterday and this is my first post.  My husband is in a cluster period right now.  He is currently using just O2, but I would like him to try the D3 regimen I have been seeing on these posts.  What exactly is it?  I purchased the D3 and Omega Fish Oil last night.  Do I need to add the Magnesium and Calcium Citrate?  I would appreciate any help.  As you all know, our nights are AWFUL and he is exhausted. Thanks!

Start here:

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

all of the above once per day.  I take all mine at once in the morning with 8 oz of orange juice.

yes, you need the magnesium and calcium citrate.  It won't work without them.  I've been pf for four year now just by taking the D3 regimen.

best of luck

Calcium Citrate has been taken out of the regime, instead,
replace it with Kirkland Mature Multi 1/day.
great to read you are pain free.

Hoppy.

Thanks, I'll look into switching, but I am hesitant to change something that works for me...

Hoppy wrote on Jan 11^th, 2015 at 7:54pm:

Calcium Citrate has been taken out of the regime, instead, replace it with Kirkland Mature Multi 1/day. great to read you are pain free. Hoppy.

Hoppy,
I thought the Calcium Citrate supplement was required with this regimen to avoid the D3 pulling calcium from teeth and bones. 

Might want to ask Batch about this before stopping the Calcium Citrate.

Also, most of us are NOT old enough to require the "Mature" multi vitamin and would think any high quality multi vitamin would be sufficient if you read the ingredients label.

IndianaJohn,
What's this about 500mg Potassium?  Never read that before as part of the vitamin regimen.  Please quote your source.  I also would be hesitant to switch something that works.

-Gregg in Las Vegas

The Kirkland brand Mature Multi contains 220 mg/day calcium and the Kirkland brand Calcium citrate contains 500 mg/day calcium. 

After 4 years working with CH'ers taking this regimen, it appears 220 mg/day of supplemental calcium is sufficient to prevent any loss of bone mineral density (BMD).  Moreover, now that we've added vitamin K2, we've optimized the flow of calcium to building BMD.

Both formulations contain most of the vitamin D3 cofactors with the Mature Multi having a better formulation as it also contains the 7 B vitamins and vitamin A (retinol) where the calcium citrate does not.

Both formulations will work just fine, but both require additional magnesium and the calcium citrate lacks vitamin A (retinol) and the B vitamins.

Accordingly, my rational for switching from calcium citrate to Mature Multi was based on the following factors.  The Mature Multi has a better formulation and the cost/dose is less.

Hope this helps.

V/R, Batch