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Thank you Pete (Read 1883 times)
tareq
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Thank you Pete
Jan 4th, 2018 at 1:48am
 
Dear all,

I will start by wishing you and your loved ones a very happy 2018.

I am 48 years old and I am a CH episodic sufferer for more than 30 years.  The main reason of writing this post is to thank my Hero Pete Batch for making my suffering much more tolerable through the Vitamin D3 regimen, It did not only shortened my last cycle and the intensity of pain it also gave me confidence because I know I have a powerful weapon to fight the beast.

In addition, I would like to share with you a personal observation that may give slight comfort to other episodic sufferers. I realized that with age my pain-free days are increasing, in my 20s I used to have 2 to 3 cycles per year then one cycle per year and currently one cycle every 5 yrs.

The observation I would like to make is that, since I started keeping a journal in 2003, I realised that with age the pain-free days usually increased by considerable percentage from cycle to cycle as shown in the data below: 

Start date       Age    Duration   no of attacks       Pain free days      % increase of pain free                                                                                                      
                                                                                               days from last cycle                                                

1/8/03       33         19 days              29                       N/A                       N/A

9/20/04       35         33 days            43                       601                      N/A

7/26/06       37         56 days            75                       641                     6.6%

4/16/09       40         33 days            49                       938                      46%

1/10/13       44          55 days            33                      1,324                     41%

12/15/17    48        Still active   Still active                  1,748                       32%



Notes:

-      Usually I will have between 30 to 70 attack per cycle excluding shadow headaches
-      My first line of defense to abort attacks are Imitrex injections
-      My preventive since 2013 cycle is Pete vitamin D regimen,I stop taking
        the maintenance dose one month after end of cycle
-      I am a smoker

I hope the above observation will help to better understand the beast and give younger sufferers some hope.

Wish you all good health,

Tareq
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« Last Edit: Jan 26th, 2018 at 9:53am by tareq »  
 
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Batch
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Re: Thank you Pete
Reply #1 - Jan 4th, 2018 at 3:39am
 
Tareq,

Thank you for the kind words and detailed headache log.  That you're still having calls from the CH beast tells me you need a higher dose of vitamin D3.  Data from the online survey of CHers taking the anti-inflammatory regimen indicate the pain free 25(OH)D serum concentration range is between 80 and 120 ng/mL and higher for some CHers.   Even with 25(OH)D concentrations above 150 ng/mL and seven years of feedback on the results of this regimen, we've yet to have a CHer report hypercalcemia, too much serum calcium, the only real indication of vitamin D3 toxicity.

If you're still in cycle, see your PCP for lab tests of your serum 25(OH)D, total calcium and PTH, then start adding more vitamin D3 to the daily intake by 5,000 IU/day of vitamin D3 on top of your normal maintenance dose.  Do this for 3 days.  If the CH continue, bump the daily vitamin D3 dose by another 5,000 IU/day.

I suspect you'll find the optimum dose to keep you CH pain free between 15,000 IU/day and 25,000 IU/day.  After a month of increased vitamin D3 intake, see your PCP for another round of labs for your 25(OH)D, total calcium and PTH.   As long as your serum calcium remains within its normal reference range, there's no problem with the vitamin D3 dose or the resulting 25(OH)D serum concentration.

For reference my average vitamin D3 intake over the last few years is 20,000 IU/day to remain CH pain free and my 25(OH)D has averaged 140 ±50 ng/mL.  My serum calcium has remained within its normal reference range...

It's also best to stay on this regimen year round.  There are several advantages in doing this and the biggest two are, there's no ramp up in vitamin D3 required when your regular cycle time comes around. The second is there are so many wonderful health benefits from taking this regimen, taking it year round helps ensure optimum health.

Thanks again and please keep us posted.

V/R, Batch
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« Last Edit: Jan 4th, 2018 at 3:43am by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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tareq
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Re: Thank you Pete
Reply #2 - Jan 4th, 2018 at 4:24am
 
Thank you very much Batch for your reply, I will follow your recommendation word by word.  Just one small query, I develop large Calcium Oxalates kidney stones (require surgery to remove) and my PCP warned me of to much vitamin D3.  I read Vitamin D Wiki article, recommended by you, which defy the relation between developing kidney stones and high intake of vitamin D3 but would appreciate your opinion on the matter.

Note: I had the kidney stones issue years before starting to boost my vitamin D3 level.

Best wishes,
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Batch
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Re: Thank you Pete
Reply #3 - Jan 4th, 2018 at 5:20pm
 
Hey Tareq,

Good question...  I'll stand by the overwhelming medical evidence that vitamin D3 does not cause kidney stones...  and you've already broken the code with respect to causality and your kidney stones as you had this condition prior to starting vitamin D3 therapy.

One of the best examples of medical evidence follows...

Kidney stones independent of vitamin D levels in range 20-100 ng – Oct 2013

25-Hydroxyvitamin D in the Range of 20 to 100 ng/mL and Incidence of Kidney Stones


Stacie Nguyen, MPH, Leo Baggerly, PhD, Christine French, MS, Robert P. Heaney, MD, Edward D. Gorham, PhD, and Cedric F. Garland, DrPH

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When it comes to causality and kidney stones, dehydration and high Body Mass Index (BMI) are the two leading factors...  As CHers, we need to drink 2.5 liters of water a day.  This helps prevent CH and in the process, helps prevent kidney stones...

The chemistry behind crystal formation in water is fairly simple...  Higher dissolved salt concentrations lead to the formation of crystals and continued crystal growth.  As our kidneys function by filtering and concentrating dissolved salts, minerals and proteins from the bloodstream into urine, it's important to keep the blood flow hydrated to help flush these dissolved salts from the kidneys into urine before they concentrate to the point of crystal formation. 

In short, as we drink more water our kidneys produce more urine with lower concentrations of dissolved salts and minerals.  Urine color is the clue you're looking for to determine if your water intake is adequate.  If the urine is dark yellow to yellow... we need a lot more water.  It its pale straw color to nearly clear, we're looking good with plenty of hydration...

In addition to the 2.5 liters of water a day, taking vitamin K2 also helps by moving calcium from arteries and soft tissues into building bone mineral density...

A high BMI (too much body fat) is another story...

1. My goal for 2017 was to lose 10 pounds. It's now 2018 and I've only 15 to go...

2. Ate salad for dinner last night. Mostly croutons & tomatoes. Really just one big round crouton covered with tomato sauce. And cheese. FINE, it was a pizza. I ate a pizza.

3. How to  prepare Tofu:
   a.  Throw it in the trash
   b.  Grill some meat

4. I just did a week's worth of cardio after walking into a spider web

5. I don't mean to brag, but I finished my 14-day Nutrisystem diet in 3 hours and 20 minutes.

6. A recent study has found women who carry a little extra weight live longer than men who mention it.

Hope this helps...  Take care and please keep us posted.

V/R, Batch
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« Last Edit: Jan 4th, 2018 at 5:39pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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tareq
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Re: Thank you Pete
Reply #4 - Jan 7th, 2018 at 12:22am
 
Thank you for your priceless input. Also, from now on I will follow your recipes to prepare salad and Tofu  Smiley Smiley Smiley .

Have a great day,
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« Last Edit: Jan 7th, 2018 at 4:11am by tareq »  
 
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