I decided to forego the verapamil and try the D3, calcium citrate, and fish oil instead. I'll keep you posted on how it works and do the survey Batch! My only issue is I am vegetarian... so fish oil?  [smiley=frown.gif] But I will try anything to prevent more CH's!!!

Thanks for the information and here's to hoping it works for me too.

Maybe you can find a non-animal source of that much Omega-3 fatty acids....

Hey Tizzy,

I understand your situation...  Some times it's best to take supplements that help make you healthy... even though they come from fish oil in this case as the alternative may not be acceptable. 

The following comes from a VeganHealth site at the link below:

There are three important omega-3 fatty acids:

• ALA - alpha-linolenic acid; found in a wide range of foods
  

• EPA - eicosapentaenoic acid; found mainly in fish
  

• DHA - docosahexaenoic acid; found mainly in fish and seaweed
  

The body can convert ALA into EPA and DHA. ALA is efficiently converted to EPA, but it may require large amounts of ALA to produce optimal amounts of DHA. A small amount of recent evidence has raised a concern that large amounts of ALA could be harmful to the eyes over the long term.

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

Hope this helps.

Finally, have you had your 25(OH)D serum concentration tested?  25(OH)D is a metabolite of vitamin D3 that's used to measure its status.  The normal reference range for this lab test is 30 to 100 ng/mL.

If your 25(OH)D is below 30 ng/mL, i.e., vitamin D3 deficient, you may need to bump your vitamin D3 intake up to 20,000 IU/day plus an additional 50,000 IU loading dose once a week on top of the daily dose.  Staying on this accelerated vitamin D3 dosing schedule for a month or a week after you experience a pain free response, whichever occurs first, will get you into the green zone (60 to 110 ng/mL) much faster and that can help you go pain free faster as well.  After that you can drop the vitamin D3 to a maintenance dose of 10,000 IU/day.

Take care and please keep us posted

V/R, Batch

Thanks Batch!
You know, I did take a vitamin with a vegetarian based DHA (probably from seaweed) in it while I was pregnant. I can look for that again.
I haven't had the blood test yet. I got the referral to get it done and plan on it next week. I'll let you know how it turns out and I appreciate all of the information.

Tristen

Wow. So I don't want to jinx myself... and I can hardly believe it... but yesterday was day 2 on the vitamins and I DID NOT get a CH last night. Then nothing but a shadow today. !!?? Working already?!?!?  :D

I remember the first day I took the vitamins I got a Kip 7 and aborted with immitrex shot before it got worse. The next day was more like a Kip 4, and I road it out as it leveled off rather early and went away in around 30 minutes. After that, nothing. And still nothing 8-)

Hope it keeps working for you.

Hey Tristen,

Thanks for the exciting news...  A pain free response in less than 24 hours is great!  The important thing now is to stick with this regimen 7 days a week, 365 days a year.   At 20 to 30 cents a day... the other health benefits made possible by the anti-inflammatory regimen with 10,000 IU/day vitamin D3 are too good to pass up...

You need to build your 25(OH)D serum concentration up around 85 ng/mL to have a sufficient reserve to enable your body's immune system to fight off infections and still have sufficient 25(OH)D to prevent your cluster headaches.

That's why lab tests for 25(OH)D are so important.  Without the results of this lab test... you're flying blind.  Get one now and again in 2 to 3 months.

Getting this lab test is kind of like pumping gas into a car and you're unsure how much it will hold or how much you've pumped until you turn on the key and check the gas gauge.

After you've been on this regimen for a month or two and have the results from the second 25(OH)D lab test in hand, please take the online survey.  You'll be helping thousands of CH'ers worldwide...

Take care and please keep us posted. 

V/R, Bath

Hey Batch,

I got the test done yesterday. I will take again in a couple months. So I've been pain free since Friday evening until a CH woke me up at 2am today. Is it strange to be without for days and then have one again? I'm still taking the vitamins everyday. It was disappointing... I hope I can keep them away. :-[

After I started with D3 I had a hit on day 6. I've had nothing since, and I'm on day 21 now. It takes some people longer than others for it to kick in properly, so keep it up. Hope it works out for you (me too).

Tristen,

Don't be disappointed...  You're doing great...  Leakers/burn through hits during the first week or so of this regimen, even after a few days pain free, are not uncommon.  They'll go away when you build your 25(OH)D reserves North of 60 ng/mL to around 85 ng/mL.

The reason for the random hit is simple...  It turns out there are other processes and systems in our bodies competing for the same vitamin D3 and its metabolites that are preventing your cluster headaches... 

If your 25(OH)D reserves aren't high enough, some of these processes will take priority and consume available vitamin D3 and its metabolites.

Your immune system is a good example...  The immune system's T-cells (your gut and lungs are full of them) will consume as much 25(OH)D and the active metabolite, 1,25(OH)2D3 as possible in response to a viral infection like a cold or flu... 

These viral infections are frequently sub-clinical (no obvious symptoms).  When exposed to these antigens, our immune system will frequently take control generating an explosion in the number of T-cells in response to these antigens...

Once sensitized to the virus, the T-sells then run around our bodies like a PAC-MAN army gobbling up virus like vacuum cleaners to make the infection go away...

Some of the T-cells don't do anything but remember the virus... in case it comes around again...  In a word... immunity.

In short... Hang in there... Like I said, you're doing great!

Take care and please keep us posted.

V/R, Batch

Thanks for the pep talk Maz and Batch. I really needed it. Truthfully, a little afraid of bed time tonight, but you all know how that goes. Positive thinking though... I'm still hopeful and going to be optimistic.

Thank you.

T

So... after a good start reaction to D3, I've had many, many hits this last week. It's too the point of 2 headaches during the day yesterday and woken up twice last night. :-(
I went back to the neuro today and she wants me to start on verapamil. I am considering it.... HOWEVER... I did finally get results of the blood test from 8/19 and my 25-OH D3 level is only 33 ng/mL!Would you take more than the 10,000 IU of D3 to increase? I've been taking just the 10,000 IU everyday since 8/13.

I need to decide to either bump up D3- what is safe? Or go back on verapamil....

Trizzy wrote on Sep 4^th, 2013 at 2:15pm:

So... after a good start reaction to D3, I've had many, many hits this last week. It's too the point of 2 headaches during the day yesterday and woken up twice last night. :-( I went back to the neuro today and she wants me to start on verapamil. I am considering it.... HOWEVER... I did finally get results of the blood test from 8/19 and my 25-OH D3 level is only 33 ng/mL!Would you take more than the 10,000 IU of D3 to increase? I've been taking just the 10,000 IU everyday since 8/13. I need to decide to either bump up D3- what is safe? Or go back on verapamil....

Hi Trizzy,
Sorry to read you are still Vitamin D deficient.  With all due respect, Batch replied to you the same day you posted this thread advising you may need to bump up your dosage to 20,000 iu/daily with a loading dose up to 50,000 iu/week.

This should be done beginning today!

As for the Verapamil, why wait and trust this vitamin regimen alone?  Just keep in mind the Verapamil will also take time (commonly 2 weeks) to titrate your blood levels to a therapeutic range.  Your dosage is critical, as is the release type.

Keep at it! 
You will get through this one way or the other! ;)

-Gregg in Las Vegas