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ihatech

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Re: 123 Days PF And I Think I know Why
Reply #1800 - Apr 24^th, 2014 at 4:17pm

Hi Batch,

I'm going to try to get my husband who is chronic for the last 5 years to try the regimen. He tried it some time ago with not much luck, but I think he did not try it for a long enough period of time. He is in a bad cycle now.

Do you take all of the recommended regimen doses at the same time (ie., with breakfast)?

Thanks! I'm glad you are still PF.

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slacker032

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Re: 123 Days PF And I Think I know Why
Reply #1801 - Apr 24^th, 2014 at 4:19pm

ihatech wrote on Apr 24^th, 2014 at 4:17pm:

Hi Batch,

I'm going to try to get my husband who is chronic for the last 5 years to try the regimen. He tried it some time ago with not much luck, but I think he did not try it for a long enough period of time. He is in a bad cycle now.

Do you take all of the recommended regimen doses at the same time (ie., with breakfast)?

Thanks! I'm glad you are still PF.

Batch will confirm but I believe he recommends that you take everything at once with the biggest meal of the day.

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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 #1802 - Apr 24^th, 2014 at 5:11pm Hey Ihatech, Try to get your husband in to his PCP and ask for the 25(OH)D lab test... Knowing the 25(OH)D actual serum concentration will help in determining the most effective dose of vitamin D3 and also approximate the 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 #1803 - Apr 25^th, 2014 at 1:08pm Hey Batch, I had been pain free for a couple of days (4/23-4/24) before getting hit a couple of times last night. I added 250 mg of calcium citrate back into my regimen on 4/23. Do you think there's any correlation or should I just chalk it up to just being a couple of rogue hits? Thanks, Brian
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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 #1804 - Apr 25^th, 2014 at 6:38pm Hey Brian, Good question... It's hard to tell until there's a clear trend one way or the other. In any event, I'd skip the calcium for a few weeks to see if you get back to a completely PF status... 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 #1805 - Apr 25^th, 2014 at 11:59pm Thanks Batch. Will do and keep you posted.
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ihatech

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Re: 123 Days PF And I Think I know Why
Reply #1806 - Apr 28^th, 2014 at 11:22am

Hi Batch,

Thanks for your response. My husband's 25 (OH) D level was pretty low at 24 ng/mL on his blood work. What do you suggest?

Hard to believe, but we just talked to his Neuro - a well known cluster H/A specialist in the Houston area (Dr. Ninan Matthew) and he is telling us that if Verapamil and Caffergot do not work as preventives (and they haven't) that Botox injection is one we can try that may work and then that's all that can be done. Quite frustrating. We're going to seek a second opinion.

Thanks.

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1807 - Apr 28^th, 2014 at 12:02pm

Ihatech,

Your husband needs to start the vitamin D3 loading schedule. This dosing schedule calls for 600,000 IU of vitamin D3 over a 4-week period... Yes, I know that sounds like a lot but it averages out to a little over 20,000 IU/day.

The key part of this loading schedule is it's front loaded with higher doses to elevate your husbands 25(OH)D serum concentration a lot faster and that should translate to a favorable response in less time.

He needs to start this loading schedule with two weeks at 20,000 IU/day vitamin D3. In addition, he needs to take a 50,000 IU loading dose of vitamin D3 on top of the daily 20,000 IU vitamin D3 once a week during the first two weeks. For the next two weeks he can lower the vitamin D3 dose to 15,000 IU/day. He also needs to take all the other supplements and doses listed in the anti-inflammatory regimen table below.
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The following photo illustrates the supplements by brand that I take to get the required doses listed in the table above.

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At the end of the 4-week loading schedule, your husband needs to see his PCP for another 25(OH)D lab test. If this loading schedule works for your husband like it has for many other CH'ers, his 25(OH)D response should average 60 ng/mL on top of his starting serum concentration...

In other words, his 25(OH)D serum concentration should be around 84 ng/mL at the end of the loading schedule.

Again this is a very safe vitamin D3 loading schedule. I have a study where 600,000 IU of vitamin D3 was given in a single oral dose to 43 adults with no evidence of hypercalciuria, hypercalcemia, parathyroid dysfunction or radiological evidence of calcification.

There's a second Phase I/II Safety trial where 25 multiple sclerosis patients were put on an escalating vitamin D3 dosing schedule for one year that reached a maximum dose of 40,000 IU/day vitamin D3 for six weeks before dropping back down to 10,000 IU/day. Again, no problems... Their RRMS got a lot better.

Regarding botox injections... Botulism Toxin... It will kill any and every cell it comes in contact with and these cells will never be replaced.

We all come with a very functional set of nerve cells that serve a number of essential functions... Killing some of these nerve cells to stop a pain is a bad move when all you need to do is give these cells the nutrients they need and they'll heal themselves.

Sorry... I didn't mean to get up on the soap box... I just find it hard to believe that big pharma makes a killing in the pharmaceutical market space selling a very toxic poison... after talking physicians into using it... I may be old school, but that sure throws "Do no harm" under the bus...

Take care, hang in there and please keep us posted.

V/R, Batch

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Kutsuki

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Re: 123 Days PF And I Think I know Why
Reply #1808 - Apr 28^th, 2014 at 8:56pm

Hello, I have started the Vitamin D regimen a little over 4 weeks ago. When I started, my 25(OH)D test came back with 28 ng/ml. I've been relatively pain free for the most part but I still get daily shadows. I've tried adding vitamin B-50 complex suggested earlier since I know I am allergic to the pollen. In addition, I have tried taking those off the counter Zyrtec anti histamines to see if that works.

Any suggestion welcome! thanks

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Mike NZ

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Oxygen rocks! D3 too!

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Re: 123 Days PF And I Think I know Why
Reply #1809 - Apr 29^th, 2014 at 1:49am

ihatech wrote on Apr 28^th, 2014 at 11:22am:

Hard to believe, but we just talked to his Neuro - a well known cluster H/A specialist in the Houston area (Dr. Ninan Matthew) and he is telling us that if Verapamil and Caffergot do not work as preventives (and they haven't) that Botox injection is one we can try that may work and then that's all that can be done.

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Treatment of headache with botulinum toxin A—a review according to evidence-based medicine criteria
Cephalalgia
Volume 22, Issue 9, pages 699–710, November 2002
S Evers, A Rahmann, J Vollmer-Haase and I-W Husstedt

Quote:

The aim of this review is to evaluate the studies available from reference systems and published congress contributions on the prophylactic treatment of idiopathic and cervicogenic headache with botulinum toxin A, and to classify these studies according to evidence-based medicine (EBM) criteria. The studies were analysed with respect to the study design, the number of patients enrolled, the efficacy parameters, and the significance of results. We used the following classification of EBM. I: randomized, controlled study with sufficient number of patients; II: well-designed, controlled study (or randomized, controlled study with insufficient number of patients, no exact diagnosis, missing data of botulinum toxin A dose); III: well-designed, descriptive study; IV: case reports, opinions of experts. For tension-type headache, two studies were found with negative evidence of I with respect to the primary endpoint. There are about as many positive as negative studies with evidence of II or III. For the therapy of migraine, one study with both negative and positive evidence of I, one in part positive study of II, and three positive studies classified as III are available. Two studies on cervicogenic headache with evidence of II and III are contradictory. In addition, we found several positive case reports. For patients with cluster headache, there are positive and negative case reports. We found one positive case report for the treatment of chronic paroxysmal hemicrania. As a result of this analysis, we consider no sufficient positive evidence for a general treatment of idiopathic and cervicogenic headaches with botulinum toxin A to date. Further studies are needed for a definite evaluation of subgroups with benefit from such treatment.

There is very limited evidence for the benefit of using botox for the treatment of CH, so this isn't a great option to try.

I'd be much more inclinded to try the vitamin D3 option as this is getting good results for over 80% of people trying it with some people (including myself) going several years CH pain free.

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« Last Edit: Apr 29^th, 2014 at 1:50am by Mike NZ »

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blacklab

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Re: 123 Days PF And I Think I know Why
Reply #1810 - Apr 29^th, 2014 at 3:52am

the nuero that I go to has a colleague that works at the same hospital that has been using botox for a few years on headache patients.
she told me that I could if I wanted give it a go, but she told me his success rate for cluster sufferers was quote, about 5 %. and none have had any long term reductions.
the vit d3 regime has a success rate of around 80 %
some of these proceedures like botox, the specialists are claiming it a success if 5 % of there patience have any sort of lessening of their symptoms ! and this was from the horses mouth. in my opinion, the odds are extremely low and the only one that would insist its worth the effort is the specialist sticking the needle in and charging you an arm and a leg in the hope of being one of the 5 % that it gave any short term relief. here in Australia they recently did a trial of low dose vit d, in female patience over 50 that suffered from migraines. the 6 month result of the full placebo trial, was that in 27 % of those on the vit d showed positive reductions in symptoms and then declared the trial a success and said within 5 years they could see it being a standard preventative. sort of makes a mockery of what batch has been doing and the success that has been achieved.
an interesting comment by dr Gominak in her link that batch put up, was that in effect in America there is one person that has the final say on what medical papers are allowed to be published, the older school of medical practicioners that refuse to adopt any new methods other than that published in medical journals are the reason,like the doctor I first saw, who said that that much vit d3 consumed will kill you ! is the only reason that the likes of batches work and dr Gominak aren't more widely known.
well that's my rant for today lol
but the more I research, both here and on the net about our disease the more I see how closed minded and completely dismissive some of the medical profession are.
my original doctor refused a script for oxygen, said it wouldn't work for me, and reffered me to my first specialist, a professor of neurology at monash university here in Melbourne, who diagnosed me as having cluster headaches, at his headache practise, and sent me away with a script for bulk neurofen !
thank god I found this forum !!!!! lol
regards
colin

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Guiseppi

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Re: 123 Days PF And I Think I know Why
Reply #1811 - May 2^nd, 2014 at 7:09pm

I'm 4 years pain free on the D-3 regimen after well over 30 years of episodic CH. Just got blood results back from this years physical, D, 25-OH, D-3 is at 86. I'm no soap box preacher but I tried:

Fiorinal. Midrin, Cafergot, Oxycontin, Hydrocodone, Verapamil, Prednisone, Oxygen. Imitrex, Lithium....and I'm sure I'm leaving a sh%$ load of pharmaceuticals off the list. Now I take daily, every night at dinner:

1 multi vitamin, I fish oil, one calcium, 1 5000 unit D-3 and 1 magnesium.

Pennies a day, no side effects from dangerous medications and no headaches. Ya GOTTA give this a try.

Joe

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Imitrex4Breakfast CH.com Veteran Offline Posts: 200 Kentuckiana Gender:	Re: 123 Days PF And I Think I know Why Reply #1812 - May 2^nd, 2014 at 10:46pm A little off topic, BUT I've been around for ages and I can't remember another thread w/ OVER 1800 replies and 182,000 views. Anyone??
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blacklab

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Re: 123 Days PF And I Think I know Why
Reply #1813 - May 3^rd, 2014 at 2:52am

that's great news Joe,
im sure hoping to get that sort of result !
Its funny how everyones reaction is different.
was your pain free state instant ?
I sort of feel, that when we are suffering, that's when we first start taking it, during a cycle and expect an instant result ! ive been on the regime for about 10 months, app.
and for me, still having to fine tune things. I can feel the monster lurking at the minute ! some red bulls have so far quelled its attemps to surface, so, so far, touch wood, he hasn't come out, but a few shadows and other symptoms are showing, so I know its there ! im really happy that in a week or so, i'll be taking no drugs ! just the regime. hearing your success really, really gives me and im sure others to either start the regime or continue with it.

colin

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Guiseppi

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Re: 123 Days PF And I Think I know Why
Reply #1814 - May 3^rd, 2014 at 10:06am

It wasn't instant relief for me but I wasn't on the "current D-3" regimen either. It started out as an anti inflammatory regimen that Batch was working on, he suggested I go on it when oxygen stopped providing relief for my attacks. Within 36 hours on the original regimen, the oxygen was knocking beasty out again. That cycle was fading out as Batch continued to tweak the regimen.....I continued to tweak it as Batch added the D-3, Beasty has never returned!

Joe

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TheAndyT CH.com Junior Offline Love is our resistance... Posts: 65 North Hollywood, California Gender:	Re: 123 Days PF And I Think I know Why Reply #1815 - May 4^th, 2014 at 10:42pm Been pain free since starting the D3 regimen in January Glad to be back at work without the beast at my side. -Andy
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: 123 Days PF And I Think I know Why Reply #1816 - May 4^th, 2014 at 11:14pm Great news Andy!
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TheAndyT CH.com Junior Offline Love is our resistance... Posts: 65 North Hollywood, California Gender:	Re: 123 Days PF And I Think I know Why Reply #1817 - May 4^th, 2014 at 11:17pm Thank you!
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blacklab Ex Member	Re: 123 Days PF And I Think I know Why Reply #1818 - May 5^th, 2014 at 3:23am yeah, that's great news Andy and Joe ! Joe, when you say pain free, have you ever felt shadows occasionally appear ? or are you in a complete state of pain free, no shadows or "twinges" ? colin
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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: 123 Days PF And I Think I know Why Reply #1819 - May 5^th, 2014 at 5:06am Quote: when you say pain free, have you ever felt shadows occasionally appear ? or are you in a complete state of pain free, no shadows or "twinges" ? For me I've been totally CH pain free, so not even shadows or twinges, for over 2 years. I've still had migraines which is a different story.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: 123 Days PF And I Think I know Why Reply #1820 - May 5^th, 2014 at 8:54am Nuthin....Lab, my wife and I are still in dis-belief that something that dictated so much of our lives for over 30 years, could be laid to rest with a simple vitamin regimen. Needless to say, I'm NEVER going off of it! Joe
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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: 123 Days PF And I Think I know Why Reply #1821 - May 5^th, 2014 at 1:48pm Great news, Joe! Besides that, look what it did for your mustache! Jerry
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: 123 Days PF And I Think I know Why Reply #1822 - May 5^th, 2014 at 3:40pm Callico wrote on May 5^th, 2014 at 1:48pm: Great news, Joe! Besides that, look what it did for your mustache! Jerry
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1823 - May 5^th, 2014 at 5:59pm

I had a great visit with Dr. Todd Rozen, MD, last Monday at the American Academy of Neurology Annual Meeting in Philadelphia.
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I was there presenting the poster on the results from the online survey of CH'ers taking the anti-inflammatory regimen to prevent their CH.

Todd indicated he's been treating his chronic CH'ers at the Geisinger Neurosciences Institute in Wilkes-Barre, PA with vitamin D3 and seeing the same wonderful results we've been experiencing.

Todd looked like a Rock Star... sharp, lean and cut... while I was my portly self... Todd is a migraineur, so I suspect he's been taking vitamin D3 as well...

Todd wasn't the only neurologist to come up to me to talk about their patients taking the anti-inflammatory regimen with vitamin D3. One neurologist looked over the poster then turned to me and said... "So you're the one..."

I raised my hands and pleaded "guilty" with a big smile... He said one of his long time CH'ers had called for an appointment because his CH had ramped up and had become a real problem... Then he received another call from this patient a week before the appointment saying he'd stopped his CH by taking vitamin D3... and was completely pain free...

The poster presentation at the AAN Annual Meeting is already starting to pay dividends... for all of us... I've been responding to a number queries from neurologists about the anti-inflammatory regimen... Hopefully this will translate into more neurologists testing their CH patient's 25(OH)D... then starting them on the anti-inflammatory regimen.

I'll be posting the survey results from the poster as soon as I get it reformatted. The poster page size is 5' X 3.5' so it's a bit too big at the moment.

None of this would have been possible without support from all the CH'ers who took the time to take the online survey and comment on their experiences with this regimen here at CH.com...

Thank You and take care.

V/R, Batch

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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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Guiseppi

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Re: 123 Days PF And I Think I know Why
Reply #1824 - May 5^th, 2014 at 8:33pm

Batch...there's a sh%$ load of people pain free because of your tireless efforts at figuring out what made this silly sounding "anti inflammatory" regimen work. I'm just hitting 4 years using your "silly assed" idea of Vitamin D-3 stopping CH. Smiley

Seriously sir, it's one thing to find something that makes you pain free and then getting on with life. You've chosen to spend thousands of hours of your own time, trying to get this out to the rest of the world. For that I salute you sir, you're a fine man, it's a pleasure to know you and call you my friend. Smiley

Joe

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