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Greeneyes,

2,000 IU/day of vitamin D3 is not enough!  If your doctor said your vitamin D3  a.k.a., serum 25(OH)D was low, it was likely less than 30 ng/mL...  Ask to be sure.  If it is that low, you need to start a vitamin D3 loading schedule of 50,000 IU/day for 12 days, then drop back to an initial vitamin D3 maintenance dose of 10,000 IU/day.  Try to pick up some 10,000 IU vitamin D3 liquid softgel capsules and take five (5) of them a day for 12 days along with 400 mg/day magnesium, 1000 to 2000 mg Omega-3 fish oil and the Kirkland brand Mature Multi...  You can order the Super K once you've got the CH beast under control.

Here's what I take.

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The 12-day/2-Week accelerated vitamin D3 loading schedule will elevate your serum 25(OH)D up to 80 ng/mL per the following chart.  I suspect you'll be mostly CH pain free by the end of the first week on this loading schedule...

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Read the treatment protocol and give a copy to your neurologist.

Instead of the 5 hour energy drinks, try sucking Ice Cold Water from a straw or suck on a fudge sickle.  Chilling the roof of your mouth with ice water or ice cream is just as effective as a 5 hour energy drink and a lot better for you.

Take care and please keep us posted.

V/R, Batch

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I did finally see that my D level was at 28 ng/mL.  I still have until next Monday until I see the dr. again.  After having a pretty awful last week Friday was better-first day back to work after vacation with no major attacks.  Was hit Saturday afternoon and then again Sunday morning.  The past two days I have not had any attacks but have had the constant pressure and eye pain on my left side with ice pick pains sporadically.  Since stopping the carbmazepine I am strictly on vitamins... here is my list of what I am currently taking...

1200 mg Calcium-i have osteopenia, 400 mg magnesium, 400 mg B2(Riboflavin), 1500 mg Tumeric, 4000 mg D3 (i started at 2000 as the doctor recommended and then upped it-thinking I was up again to see if I can get rid of the dull pressure and ache (shadows?), OmegaPlex (I have been taking from Advocare for a while 2 at lunch and 2 at dinner-don't know the exact dose).  I also have been taking melatonin at night 10 mg- but then upped to 20 mg because I was still waking up alot at night and not sleeping well.  The only thing I have taken is Flexiril becuase of my neck and shoulder pain but just maybe one a day and not every day.

 

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Over in the ClusterBuster Files, under "D3 regimen," the specific ingredients for that regimen are presented in a table.  You should take what it says there.

Have you tried ginger for shadows?  Here's what's written in another document over in the ClusterBustre Files section:
>>>A teaspoon of ginger simmered in a cup of water, sweetened to taste, is a pleasant way to hold off the shadows for a couple of hours. Ginger doesnÂ’t dissolve well, so simmer the powder or finely chopped ginger root for a while, and keep stirring while you drink.

In hot weather, a very strong ginger ale or ginger beer can do the trick enjoyably. Look in health food stores or delis for brands such as ReedÂ’s Extra Ginger Brew, Ginger PeopleÂ’s Ginger Beer, Natural Brew Outrageous Ginger Ale or Blenheim 1903 Hot Ginger Ale. The usual ginger ale used for mixers, such as Schwepps or Canada Dry, is not strong enough.

A company called The Ginger People makes strong ginger candy in several varieties (www.gingerpeople.com).<<<

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Hey Greeneyes,

With a baseline 25(OH)D serum concentration of 28 ng/mL, I would start the 12-day vitamin D3 loading schedule at 50,000 IU/day.  After 12 days you can drop back to an initial maintenance dose of 10,000 IU/day vitamin D3.  This loading schedule speeds up the time it takes to elevate your serum 25(OH)D concentration to a therapeutic level around 80 ng/mL.  Doing this should also reduce the time to a favorable response to this regimen with a significant reduction in the frequency, severity and duration of your CH.  You can speed up this process even more by taking the vitamin D3 loading dose sublingual.  I do this frequently by popping the vitamin D3 softgel capsules between my back teeth then swirl the contents under my tongue and hold them there for 4 to 5 minutes without swallowing.  The vitamin D3 tastes slightly sweet and the gelcaps turn into a gummy bear consistency after 4 to 5 minutes so I chew them up and swallow.  This method of taking vitamin D3 gets it directly into the bloodstream and bypasses the GI tract where absorption is slower.

It is not uncommon for CHers to have allergic reactions that slow or stop vitamin D3 from preventing CH.  These allergic reactions can be sub-clinical with no outward or obvious symptoms, but the allergic reaction is still there pumping out a flood of histamine that makes nearly every CH intervention less effective.  Accordingly, if you haven't responded with a reduction in the frequency of your CH after 10 days on the vitamin D3 loading schedule, I would also start a 5-day to one week course of Children's Benadryl (Diphenhydramine HCL) liquid allergy medicine. 12.5 mg (5 mL in the measuring cap) once or twice a day.  The only word of caution is even at a low dose like this, Diphenhydramine will make you drowsy so don't drive if at all possible.  If you need to drive during the day, take it when you're home and done driving for the day.

Diphenhydramine is a first-generation antihistamine that crosses the blood brain barrier to block H1 histamine receptors on neurons throughout the brain and in particular, the trigeminal ganglia, where histamines trigger the release of calcitonin gene-related peptide (CGRP).  Second- and third-generation (non-drowsy) antihistamines cannot readily cross the blood brain barrier so will be less effective.  CGRP in turn, triggers neurogenic inflammation and the pain we know as cluster headache.

Hold the liquid Benadryl (Diphenhydramine HCL) in your mouth swirling it under the tongue and between cheeks and gums for 3 to 4 minutes.  Like the sublingual vitamin D3, this gets the Diphenhydramine into the bloodstream at a higher concentration and much faster than swallowing and this helps vitamin D3 to do its thing with genetic expression to prevent your CH.

I realize this may be confusing, but give it a try.  The sooner you do, the sooner you'll find you finally have control of the CH beast that's been controlling you...

Take care and please keep us posted.

V/R, Batch 

 

 

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  • 3 weeks later...

I do seem to be having some positive response since starting the loading schedule over a week ago.  I had to order the mature multi but have been taking everything else.  My last really bad atttack was last Wednesday night (lasted about an hour).  I still have had the pressure, stabbing pains, and burning off and on throughout the day(most only last a couple minutes....except today I have had it since last night very dull) but my last 3 attacks have not been as high on the pain level and have only lasted 10 min.  I'll take what I can get.  It's better than getting them everyday...multiple times a day... less than a week to go before I finally get in to see the neurologist.

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Hey Greeneyes,

As you appear to be responding to this regimen, I would continue the accelerated Vitamin D3 loading schedule at 50,000 IU/day vitamin D3 for another four to five days along with the rest of the anti-inflammatory regimen.  This is a safe and effective way of elevating your serum 25(OH)D up near 80 ng/mL where at least 83% of CHers experience a significant drop in the frequency of their CH or a complete cessation of CH.

Poping and chewing the 50,000 IU of vitamin D3 softgels between your back teeth and swirling the contents under your tongue for 5 minutes without swallowing will help in absorption...  I do this frequently during my 25(OH)D burn down tests where I stop taking vitamin D3 until my CH return...

I'm a chronic CHer and take an average of 15,000 to 20,000 IU/day vitamin D3 along with the rest of the anti-inflammatory regimen.  I've also maintained an average 25(OH)D serum concentration around 140 ng/mL for the last three years.  Yes, I know that is above 100 ng/nL.. I also know that the 25(OH)D lab test results are a very poor indicator of vitamin D3 intoxication/toxicity...  If we were to equate a high serum concentration of 25(OH)D to vitamin D3 toxicity, there are several RCTs indicating the concentration would be well North of 200 ng/mL.

My PCP is comfortable with my 25(OH)D being this high (It's been over 167 ng/mL) as he has a copy of the anti-inflammatory regimen treatment protocol so knows as long as my serum calcium stays within its normal reference range... and it has... there's no real issue with vitamin D3 toxicity.

As the CH beast is still jumping ugly after a week of 50,000 IU/day vitamin D3, I would start a week to 10 day course of Benadryl (Diphenhydramine HCL) at 25 mg/day...  If there's no joy at this dose and the CH beast is still jumping ugly, bump it to 50 mg/day.

Take care and please keep us posted.

V/R, Batch

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