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japanzaman CH.com Veteran Offline I Love CH.com! Posts: 210 Fukuoka, JAPAN Gender:	Re: 123 Days PF And I Think I know Why Reply #950 - Aug 7^th, 2012 at 8:09am OK, so can we sticky this thread already?
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CarrieLundgren

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Re: 123 Days PF And I Think I know Why
Reply #951 - Aug 8^th, 2012 at 2:10pm

Hello Batch,

I have read through the entire thread on the D3 Regimen and all I can say is "thank you" for your information and knowledge on CH!

A little bit of background on me...
I'm 32 years old, female, started with my first cluster cycle eight years ago when I was 24 in 2004. Next cluster cycle was two years ago in 2010 and now this third cluster cycle just started at the beginning of June of this year and is going on 9 weeks. It is by far the longest cycle I've had yet. I went on a 5 day course of prednisone which didn't stop the cycle. I then went on a 20 day course of prednisone that didn't stop it. I'm about 3 weeks since that last course of prednisone and still struggling. My headache specialist here in WI wants me to go on another round of 20 day course of prednisone, but I'm just not convinced that it will stop the cycle and I am concerned that it might turn me from episodic to chronic. I'm not sure if that is a valid concern or not. About a month ago, I also tried to go on verapamil as a preventative, but had horrible side effects, so I stopped it. I used 02 at a 15 flow rate to abort attacks. I have also used Imitrex injections to stop attacks, but try to stay away from the triptans as much as possible.

I started taking the D3 regimen a couple of weeks ago. I took a loading dose of 40,000 iu of D3 along with the other co-factors (thanks for the tip on Costco). I then was taking 20,000 iu daily and that seemed to lessen my attacks. I did this loading dose again at the start of the second week. Over this past weekend, I reduced down to 10,000 iu and my attacks came back. I had the 25 (OH) D lab (which was after I already started the regimen on my own) on Monday and it just came back at 54.

Any thoughts on this value?

For the first week and a half on the D3, I had back/trunk body aches. I do not have that now and I have upped my D3 now back to about 20,000 iu daily and my attacks have stopped, but I still have the shadow. I am thinking of increasing again.

Doctors I have spoken with here are saying that Vitamin D3 deficiency is very rare and they pretty much think I'm crazy thinking that there is a link with this.

Any thoughts or advice you might have would be greatly appreciated. Living with CH is so challenging and frustrating since many do not even realize the lengths at which you might go to try to find relief...and many medical professionals do not have any knowledge of this rare disorder.

Thanks,
Carrie

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #952 - Aug 8^th, 2012 at 4:22pm

Hey Carrie,

Welcome to CH.com. Thanks for the informative intro, kind words and back brief on your experience with the anti-inflammatory regimen.

I'm not a doctor or a licensed nutritionist so my reply and comments are for information purposes only... Bounce them off a physician you know and trust who is also familiar with your medical history.

I don't think you're crazy... and from the information provided by other CH'ers in this thread, it appears you're doing the right thing by taking 20,000 IU day vitamin D3... calcium and all the cofactors... The data in this thread also suggests you just haven't taken this regimen long enough as evidenced by your serum concentration of 25(OH)D.

That data suggests a serum concentration of 25(OH)D of 54 ng/mL is still too low... but very promising after only two weeks... The collective data in this thread suggests you need to get your 25(OH)D up into the "green zone" of 60 to 110 ng/mL in order to experience the benefits of this regimen.

IMHO, it appears the doctors you spoke with who claimed that a Vitamin D3 deficiency is very rare are sadly ill-informed and their claim is ludicrous. Moreover, they may be need of some meaningful CME...

Doctors and medical scientists at Boston University Medical Center, Boston, MA claim vitamin D3 deficiency is pandemic... See the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Another good link to read on the vitamin D3 deficiency pandemic follows:

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You might want to print out copies of both abstracts and present them to the doctors you spoke with about this regimen the next time you see them...

You can also tell them that 76% of the 200 CH'ers who reported starting this regimen have experienced a significant reduction in the frequency and severity of their CH and 64% of the 200 CH'ers are completely pain free...

Empirical results like this exceed the highest possible placebo effect for a cluster headache preventative... so this is not a joke.. and you're not crazy.

In the mean time, data in this thread suggest you hang in there at your present vitamin D3 dose of 20,000 IU/day. Most CH'ers who reported they've been completely pain free with no shadows for a few weeks, have dropped their vitamin D3 intake to 15,000 IU/day to see if that holds them in the pain free green zone... Many of them have also found it helpful to see their PCP for another 25(OH)D lab test at that point..

Take care and thanks again for the great back-brief.

V/R, Batch

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« Last Edit: Aug 8^th, 2012 at 4:24pm by Batch »

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TarHeels4Me CH.com Newbie Offline I Love CH.com! Posts: 8	Re: 123 Days PF And I Think I know Why Reply #953 - Aug 8^th, 2012 at 8:59pm Thanks Batch The lab test was 28.1 ng/ml; you sent me some info regarding that reading the other day. I'm suppose to go back and check again in 6 weeks. I'm good with staying on the Regimen for a while and will wait on taking the survey for a month or so. thanks again!!
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CarrieLundgren

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Re: 123 Days PF And I Think I know Why
Reply #954 - Aug 9^th, 2012 at 10:06am

Thank you so much, Batch, and I totally understand that I am to use all this information provided and consult a physician...

I really had to beg my doctors to order the D3 lab for me, but thankfully they agreed. Now, after getting the results of 54 back yesterday, I am still waiting for a call back from them. I emailed and messaged and here I wait. I am trying to get a referral to see an endocrinologist so that I can easily get D3 labs to make sure my levels are ok.

This cluster cycle has been tough because of a few factors...it's been so hot here this summer, the cycle is lasting so long and I have three kiddos age 6 and under that are home with me.

This morning was a rough one...started getting an attack while trying to get all three kiddos out the door for camp. We were late because I had to chug a Red Bull and inhale some O2. Sad

Thankfully, it worked, but I am on the verge of another attack, so I'm currently sitting with the O2 flowing as I type this.

I am three weeks off the last course of prednisone and I keep considering starting it up again. Do you have any information about this steroid contributing to making one turn from episodic to chronic?

I have been really having a tough time coping since no one "gets it" except the support on groups like this. I'm thankful for these online resources.

Hoping you are pain free,
Carrie

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #955 - Aug 9^th, 2012 at 12:55pm

Hey Carrie,

Thanks for the update... Sounds like you've got your hands full with the kids and heat... I know the beast isn't making it any easier. And thanks for understanding the "information purposes only" nature of my posts... Discussing this regimen, even with physicians who are skeptics, may have the benefit of starting them thinking outside the box when they see the improvement in your condition.

It's good to hear you've got oxygen therapy available to abort your CH. It's all I used for nearly five years after turning chronic. My oxygen cylinder, 0-60 liter/minute regulator, demand valve, and O2PTIMASK™ kit are still sitting under a plastic bag where they've been since I developed and started the anti-inflammatory regimen in Oct of 2010.

Asking for a referral to see an endocrinologist is a great move. If that turns out to be too long a wait, look for an Integrative or Homeopathic physician in your area. They're usually easier to see and they're up to speed on giving the body what it needs to heal itself rather than going after the symptoms with medications that may or may not prove effective, but usually carry side effects.

Regarding a link between a steroid taper and changing from episodic to chronic... I'm not aware of any. I'm also of the opinion that claims of a steroid taper breaking a cycle are likely confused with end of cycle. I was on prednisone for nearly a year for another condition... It worked, but nearly destroyed my endocrine system in the process.

Take care and please keep us posted.

V/R, Batch

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CarrieLundgren

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Re: 123 Days PF And I Think I know Why
Reply #956 - Aug 9^th, 2012 at 1:23pm

Thanks, Batch.

I intend on continuing the D3 regimen and hope I obtain some relief sooner than later. I also agree that many physicians are ill-informed and skeptical, unfortunately.

With it being summertime, I desperately want to plan a vacation with my family, but feel like a prisoner to the beast currently. I have also been experiencing different attack times the past three weeks since ending the prednisone. Very unpredictable lately and that has me a bit anxious.

I have also thought about confusing the prednisone taper with the end of the cycle. Yet, it often provides relief from pain (had a few break thru attacks last time), yet the side effects are bothersome, but tolerable compared to the pain. I guess I'm considering starting the prednisone taper again while I get my D3 levels up. Not sure if that is a reasonable thought or not. Just taking it one day at a time, trying to function as normally as possible.

How long on the D3 regimen did it take for you to become pain free?

I also am considering modifying my diet entirely. I was eating very healthy (very little sugar, lots of greens, chicken/fish) until this cluster started and the prednisone "cravings" kicked in. I was also recalling that I had my first really bad bout with gout before my second cluster cycle started. I wonder if I have some ph issues going on, too.

Your research and contribution to CH and this is so appreciated. It is amazing the amount of information now on the web compared to when I first started out with CH.

Again, thank you...

Carrie

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #957 - Aug 9^th, 2012 at 2:37pm

Hey Carrie,

None of the CH'ers on this regimen have reported any real problems with a prednisone taper. Talk to your PCP or neurologist about this.

As to how long it takes for a significant reduction in the frequency and severity of your CH or going pain free... Most CH'ers on this regimen who had a favorable response and then when in for the lab test reported serum 25(OH)D concentrations between 60 and 110 ng/mL.

Given your last test was at 54 ng/mL, it would appear a favorable response is a few days to less than a week away.

The only available data on response times for this regimen times comes from right here at CH.com and the anti-inflammatory regimen survey. I posted a chart illustrating the distribution of response times from this survey in an earlier post.

So far, 80% of the CH'ers with a favorable response to this regimen, experienced relief by the end of the second week... The rest took upwards of a month.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

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CarrieLundgren

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Re: 123 Days PF And I Think I know Why
Reply #958 - Aug 9^th, 2012 at 8:07pm

Thanks, again, Batch.

I am going to hold out on taking the prednisone for as long as I can in hopes that the regimen will provide some relief. I have been saying that I was going to "wait it out" each day for three weeks now...

I will keep you posted and will make sure to complete the survey once able.

Best,
Carrie

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Brooke CH.com Junior Offline :) Posts: 27	Re: 123 Days PF And I Think I know Why Reply #959 - Aug 14^th, 2012 at 5:10pm This has been life changing so far. I have been completely pain free. I will continue to update. I am not even taking as high of doses (I am a pretty small person though) and it has worked for me. Even if it stops working, the break has been a dream . I am forever greatful especially if this continues to work.
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CarrieLundgren

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Re: 123 Days PF And I Think I know Why
Reply #960 - Aug 14^th, 2012 at 10:09pm

Hi Batch,

I have been getting some relief...shorter and less intense attacks...but still attacks. The daily shadows are starting to ease up, too.

I have asked my primary doctor and my headache specialist doctor for a referral to an endocrinologist. Neither would agree to it (HMO) since my Vitamin D3 level was in the normal range last week at 54. I then called the patient advocate for our health system and she pretty much blew me off, too, since the doctors are trained professionals who have the proper training to determine if a patient needs to be referred to a specialist. She said it sounds like I need to see a neurologist. I've already been to them, had all the scans years ago, and they just push the toxic cocktail of meds as well. Sad

I even tried calling the endo office myself, but they wouldn't budge either.

I'm concerned about my levels, especially taking such high doses of D3. I am beyond frustrated currently. My husband is worried about me taking these mega doses of D3. I'm at the point where trying anything is on the table because the pain is so bad. I'm on week 10 of this cycle...longest one yet.

Do you know of any doctors that are on board with this D3 regimen? It is so difficult even talking to a medical professional because most do not know what CH is, let alone understand it or have any compassion for this terrible disorder.

Hope you are well and pain free,
Carrie

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #961 - Aug 15^th, 2012 at 7:06pm

Hey Carrie,

I understand the problems you're facing. Your doctors are quite correct, a 25(OH)D serum concentration of 54 ng/mL is normal. However, data provided by CH'ers here at CH.com suggests it's too low.

All of the CH'ers who reported their 25(OH)D serum concentrations after going pain free, reported values of 60 to 110 ng/mL. This data suggests the CH pain free "Green Zone" is 60 to 110 ng/mL.

Accordingly, this data also suggests you still have a few days to go at your present intake of vitamin D3, before reaching the therapeutic serum concentration of 25(OH)D somewhere in the green zone.

Download and print the attached file and read it with your husband. It's one of the latest studies on vitamin D3 dosing with 25(OH)D response by Garland and Heaney et al. It also speaks to the safety of vitamin D3 intake up to 40,000 IU/day.

Regarding physicians who are up to speed on vitamin D3 dosing and who are also aware of the likely link between cluster headache and a vitamin D3 deficiency... so far there are only two... and I'm not going to be much help. One is a professor of endocrinology at Creighton University Medical School... and I'm not sure he still does clinical work.

The other physician is a neurologist in Australia who became interested in this method of vitamin D3 therapy as a preventative for cluster headaches when one of his cluster headache patients went pain free in less than a week after starting the anti-inflammatory regimen. He was interested enough to call me after an email exchange.

Seeing an endocrinologist might be a bit premature at this point. I suggest this route only if a CH'er has elevated his or her 25(OH)D well into the green zone for a couple weeks with no change in CH patterns.

I'll shoot you a pm with some additional information.

Take care and hang in there.

V/R, Batch

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JSCartier

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Re: 123 Days PF And I Think I know Why
Reply #962 - Aug 16^th, 2012 at 4:12am

Heya Everyone,

Back from a long time of chaos and life

Started this regimen yesterday and we will see how it works.

lets see ...

10,000 ui D3 .. ok
Ca/mg/z ... ok
2000 mn fish oil (600 EPA/DHA) ...check

And a mess of Liquid Lemons to wash it down ( cant stand lime - anything )

We will see how it goes

BTW! Thank you to Batch and all the rest for a lot of info and hard work on this

PFDAN and may the sandman visit ya un-disturbed !

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« Last Edit: Aug 16^th, 2012 at 4:14am by JSCartier »

Anyone Have a Spoon ??.. If i can just get the right eye out ..

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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3706 Bremerton, WA Gender:	Re: 123 Days PF And I Think I know Why Reply #963 - Aug 16^th, 2012 at 4:32pm Hey JS, Welcome to the vitamin D3 group. Try to see your primary care physician to get the lab test for 25(OH)D. Knowing your serum concentration of this vitamin D3 metabolite will take a lot of the guessing out of response time. Take care and please keep us posted. V/R, Batch
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slacker032 CH.com Old Timer Offline Posts: 325 Los Angeles, CA Gender:	Re: 123 Days PF And I Think I know Why Reply #964 - Aug 18^th, 2012 at 3:48pm Not sure if this has been posted but here's a deal to get your 25(OH) tested at a local lab for $62.67: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Jacey

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Re: 123 Days PF And I Think I know Why
Reply #965 - Aug 20^th, 2012 at 3:55am

Hi Batch,
I 've been following the D3 regime since about May although only take 5,000 D3 as my levels came back at 73 before I started the regime. My homeopathic practitioner has also added Starflower oil to the mix. So far so good then bizarrely 2weeks ago I had a sudden flare. Not a shadow but a full blown eye watering hit which only lasted 15 mins. Then nothing for 2 weeks until yesterday when I got another! Same time of day and slightly longer. I've upped my fish oil to 4,000 and just wondering if anyone else has had anything similar. It felt like a proper hit but I've had no shadows before or after and my usual cluster runs January to May. I did have Iririts in May too which is an inflammation of the eye itself, strangely on the same side as the clusters but Drs couldn't put the two together. They did, however, say it would last up to 6 months and was gone in 2 weeks! I put this down to the anti inflammatory regime. Just wondered if the odd hits were proper clusters. They responded to the Imigran nasal spray almost straight away. Any ideas?

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #966 - Aug 20^th, 2012 at 1:11pm

Hey Jacey,

Thanks for the update... Your post brings up some interesting possibilities...

While a 25(OH)D serum concentration of 73 ng/mL is above middle of the normal response range for this lab test at 30 to 100 ng/mL... the cluster headache response range reported to date is between 60 to 110 ng/mL. That's the "green zone" where some CH'ers respond to a serum concentration of 25(OH)D at 60 ng/mL and others need higher concentrations up to 110 ng/mL to go PF or have a significant reduction in the frequency and severity of their CH.

Here's my take on your spurious eye-watering CH attack out of the blue...

1. Your average 25(OH)D serum concentration may be a bit too low... i.e., a higher daily intake of vitamin D3 is likely needed.

2. For some reason(s), the rates at which we metabolize vitamin D3 to 25(OH)D3 (calcidiol) and on to 1,25(OH)2D3, the active metabolite (read the hormone called calcitriol), and the rate at which we consume calcitriol appear to vary throughout the year.

This can result in an imbalance where calcitriol concentrations drop to the tipping point where we start having CH attacks... albeit usually mild and short in duration.

3. The body has built-in mechanisms that limit the cutaneous production of vitamin D3 and its metabolism to 25(OH)D in order to prevent an overdose due to too much exposure to the UV-B in sunlight.

Accordingly, there may be times when a normal intake of 10,000 to 15,000 IU/day vitamin D3 is mediated downward by exposure to sunlight and this control mechanism resulting in insufficient calcidiol and or calcitriol to prevent CH.

10,000 IU/day vitamin D3 is normally sufficient to keep me pain free... However during the spectacular summer (July - August) we've been having here in the Puget Sound area of Washington state ... I've had to up my intake of vitamin D3 to 15,000 IU/day to stay PF.

Moreover, if I'm late in taking my daily dose of vitamin D3... I start feeling the onset of a CH around 30 hours from the previous dose.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Aug 20^th, 2012 at 1:15pm by Batch »

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Jacey

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Re: 123 Days PF And I Think I know Why
Reply #967 - Aug 20^th, 2012 at 6:04pm

Thanks for the response and yet again the info is brilliant! It makes complete sense as the weather has been great and I've been outside more than usual which would explain the possible downturn in d3 levels.
I will up the dose and see if it works. It's amazing how many elements work together or even against each other with CH. I am intending to do another serum test shortly so it will be very interesting to see the results.
Thanks again. Cool

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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3706 Bremerton, WA Gender:	Re: 123 Days PF And I Think I know Why Reply #968 - Aug 20^th, 2012 at 6:57pm Hey Jacey, Good move on upping the dose of vitamin D3 and going in for another lab test for 25(OH)D... I've a spare ZRT home blood spot test kit for 25(OH)D and will do the same thing in a few weeks... Take care and please keep us posted. V/R, Batch
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Joseph BIG

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Re: 123 Days PF And I Think I know Why
Reply #969 - Aug 22^nd, 2012 at 1:30pm

Dear all.

I am into my cycle....Coming every two years and stays for about 2.5 months.

I was hospitalized last week because I simply could not...COULD NOT....had this pain anymore.

The first time in my life I used an O2....Really! It Helps!

I guess throughout the 20 years I was misdiagnosed and I just wonder how many men and women around the world are misdiagnosed.

I read this thread and Batch simply provides hope. Hope to eliminate the beast from coming again by simply consuming natural stuff.

I bought:
D3 (drops);
Solomon oil (Omega3);
Calcium Citrate with d3;
Calcium and magnesium and zinc;

Somehow, I can NOT find one tablet that includes the Calcium citrate + d3 + magnesium + zinc as one tablet.

Is it OK Batch to use the two separate tablets??

I am starting.....and I will update you all.

Batch, you have no idea what you do here.....you provide hope and smile to all of us.

Thank you.

God bless,
Joseph.

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #970 - Aug 22^nd, 2012 at 1:52pm

Hey Joseph,

Welcome to the vitamin D3 group and thanks for the kind words. The simple answer is yes, separate tablets are fine.

You can find the complete list of supplements for the anti-inflammatory regimen, suggested doses, dosing strategy, interactions and contraindications at the following link:

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Please discus this regimen with your PCP or the physician who prescribed you oxygen therapy and ask for the lab test for 25(OH)D. Knowing your serum concentration of this vitamin D3 metabolite will give you a better idea how long it will take for you to respond.

Take care and please keep us posted.

V/R, Batch

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Joseph BIG CH.com Newbie Offline I Love CH.com! Posts: 21 Gender:	Re: 123 Days PF And I Think I know Why Reply #971 - Aug 22^nd, 2012 at 3:05pm Hi Batch. Thank you for your quick response. Yes, I did a blood test 2 weeks ago AND...My Vitamin D 25 (OH) is 10(TEN!!!)ng/ml where the normal values should be between 20 to 100. Joseph.
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #972 - Aug 22^nd, 2012 at 4:16pm

Hey Joseph,

Thanks for posting your serum 25(OH)D concentrations... From data collected here at CH.com you'll need a serum concentration of 25(OH)D anywhere between 60 and 110 ng/mL in order to have a favorable response to your CH.

Take a look at the vitamin D3 dosing strategy for the fastest possible response.

Take care,

V/R, Batch

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TarHeels4Me

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Re: 123 Days PF And I Think I know Why
Reply #973 - Aug 23^rd, 2012 at 9:28pm

Hello Batch et at...
Back after a couple weeks. Here's the latest. As noted before my D3 level was 28Ng/ML (taken on 7/30). I started the D3 regimen (although just realized early last week i was missing the mag). I started with 10K per day first 4 days; then I took the 50K presciption D3 on 5th day; and then upped to 20K per day for 5 day's then 70K; then 20K for 5 days; then 80K for one day; then it's been 30K per day since. So I've really ramped up. And this past Monday (8/20/12) had my D3 taken again and it's up to 89.7NG/ML.

That really surprised me that it jumped so high so quickly. Now...I also had to ask Doc for Verapamil because the Pred was not stopping the headaches. My cycle started on July 15th and I've had a headache at least once per day every day except 5 days.

I also got an O2 tank; 15ML flow rate with the non rebreathable mask; and while it doesn't KNOCK out the attack it certainly lowers the intensity. I don't know if I can get a 25ML or higher.....the doc seemed to frown on that and the respiratory supply store doesn't even carry anything higher than 15ML. Maybe I need a signed order from the President or Congres....oh wait...I won't go there! Shocked

I still think it's early in the process to know the effect of the D3 regimen especially since I'm taking both Pred/Verap....but I have looked over the data since July 15th and I am fairly confident that the severity of my attacks have been much less severe than other cycles.

Now Doc wants me to go to 30K D3 three times a week. Batch...what do you think? I would sorta like to stay at 20 or 30K per day for a while and have it checked again in say 3 weeks or so...

I also need to read more about the anti-imflamatory diets and the PH. I just saw that Sweet n Low is very acid generating.....WOW....I only have like 6 to 8 packs of that a day on average!!!! I have tried very hard to do better with the diets. I'm eating only salads basically...not very much carbs and rarely any red meat now....so if nothing else maybe after I get off the Prednisone and lose my Miss Piggy figure...I'll at least drop some lbs!!!

And a curiosity question for you Batch....in the GOMBS...Onions?!?!? I have always heard that onions (raw/green) cause migraines...so I've refrained from eating them for years. Although i do have onion rings (Fried) ocassionally...love them!! Cool

And finally....if Verapamil is a Calicum Channel Blocker; why do we need so much calcium? I'm confused on that one.

Much love to all you guys and gals for all that you are doing and going through to help everyone!!!

Darrell

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Joseph BIG

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Posts: 21
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #974 - Aug 24^th, 2012 at 3:05am

Hi Batch.

While reading the thread, I am quiet confused when to take what...?

Shall I take both regimen in the morning before/while/after breakfast? Or... Shall I take the first regimen in the morning and the second on other meal? Lemonade on all meals? etc...?

Can you please direct me on this issue.

Thank you very much Batch.
Joseph.

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