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Lenny

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WARNING-vitamin "D"
May 23^rd, 2012 at 5:58pm

for those that are taking this or for those that are considering taking vitamin D...please go to google and type in.....

vitamin d too much

i was shocked by the information on it...i brought my father to his doc today"cardiologist" (and i thought i was doing my pops a favor by buying him a bottle of vit.D 5,000 IU) i mentioned it to his doc and when i told him how much (he looked at me and asked me if i love my dad) thank god he only started on it this past sunday... do yourself a favor and read up on it...hopefully this will post,as i am using someone's phone for this.....Lenny

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Zeitgeist CH.com Alumnus Offline Clustery szcmustery Posts: 91 \|Norway\| Gender:	Re: WARNING-vitamin "D" Reply #1 - May 23^rd, 2012 at 6:34pm Thanks for your concern, but did you read any of the google hits? If your father had taken 10 x 5.000 IU a day for some time, the eye of the cardiologist might have been justified. Not for 5.000. Having said that - it is repeated dozens if not hundreds of time: Test vitamin d level blood regularly.
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Batch

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Re: WARNING-vitamin "D"
Reply #2 - May 24^th, 2012 at 12:47pm

Hey Lenny,

Rune is spot on... You need to read more than one hit on a Google search before you post an alert like this... Better yet, read 10 to 20 hits on a topic like this then take a consensus...

The risk of vitamin D3 intoxication at the doses and durations we've been talking is very rare...

Moreover, the health risks resulting from a vitamin D3 deficiency are significantly greater and potentially far more dangerous than any possible risk of vitamin D3 intoxication.

See what the experts are saying at the following link:

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Spend some time reading about vitamin D3 on the following link to GrassRootsHealth DAction web site:

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In particular look at the long list of physicians and medical centers advocating higher doses of vitamin D3

Take care,

V/R, Batch

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: WARNING-vitamin "D" Reply #3 - May 24^th, 2012 at 7:35pm Quote: and i thought i was doing my pops a favor by buying him a bottle of vit.D 5,000 IU You were. Some docs just aren't on board yet. My neuro takes a 50,000 i.u. wafer once a month and takes 5,000 i.u.'s a day.
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Lenny

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Re: WARNING-vitamin "D"
Reply #4 - May 26^th, 2012 at 11:38am

Perhaps i should of read a few other links...i only read 2 of them...Mayo clinic and John Hopkins...figuring that i will not get any BS from either one of them...if i recall correct,the reports were both from 2012 and one of them had a number of 15,000 patients...so after i was done with those 2-links,my fu..ed brain went into action (and i started to hear that theme song from a cartoon that i use to watch as a kid)"here i come to save the day" Grin

...if i recall correct,that was mighty mouse...

Batch...as you know and i have told you this before in the past,that i respect and admire you very much for all you do for us clusterheads.....Lenny

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Re: WARNING-vitamin "D"
Reply #5 - May 28^th, 2012 at 2:06am

Medical Dr's. spend less time on nutrition in Med School than they do on Headaches. That being the case, they are a very poor source generally for advice on proper vitamin/nutritional matters. I've seen some very poor stuff come out of Mayo. Fortunately, they do more right than wrong, but when they are wrong they do it up royally.

As Denny used to say, "Take what you need and leave the rest."

Jerry

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Re: WARNING-vitamin "D"
Reply #6 - May 28^th, 2012 at 10:04am

Lenny, I appreciate your posting this warning for it serves to illuminate a special problem with self-help group, like ours. We lack the education/experience to be aware of the full range of potential outcomes surrounding any treatment we choose to use--or to recommend to others. While docs and mfgs are shaped by law and ethics to give this information, it's too easy for us to not pay attention to this issue--nor to even know how/where we would find such material.

A related issue: side effects are not neat, 1:1, effects from using any particular med, dose, or technique. There are so many variables affecting whether a troubling side effect develops that the best any medical authority can do is to provide ranges of variables associated with the potential for a negative effect.

You can see this in the following material. There is useful guidance but no, "use this dose and it's O.K.; use this dose and it creates problems." BUT to not have any guidance leaves us flying blind.
================================

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Health Risks from Excessive Vitamin D

VITAMIN D TOXICITY CAN CAUSE NON-SPECIFIC SYMPTOMS SUCH AS ANOREXIA, WEIGHT LOSS, POLYURIA, AND HEART ARRHYTHMIAS. MORE SERIOUSLY, IT CAN ALSO RAISE BLOOD LEVELS OF CALCIUM WHICH LEADS TO VASCULAR AND TISSUE CALCIFICATION, WITH SUBSEQUENT DAMAGE TO THE HEART, BLOOD VESSELS, AND KIDNEYS [1]. The use of supplements of both calcium (1,000 mg/day) and vitamin D (400 IU) by postmenopausal women was associated with a 17% increase in the risk of kidney stones over 7 years in the Women's Health Initiative [65]. A serum 25(OH)D concentration consistently >500 nmol/L (>200 ng/mL) is considered to be potentially toxic [5].
Excessive sun exposure does not result in vitamin D toxicity because the sustained heat on the skin is thought to photodegrade previtamin D3 and vitamin D3 as it is formed [6]. In addition, thermal activation of previtamin D3 in the skin gives rise to various non-vitamin D forms that limit formation of vitamin D3 itself. Some vitamin D3 is also converted to nonactive forms [1]. Intakes of vitamin D from food that are high enough to cause toxicity are very unlikely. Toxicity is much more likely to occur from high intakes of dietary supplements containing vitamin D.
Long-term intakes above the UL increase the risk of adverse health effects [1] (Table 4). Most reports suggest a toxicity threshold for vitamin D of 10,000 to 40,000 IU/day and serum 25(OH)D levels of 500–600 nmol/L (200–240 ng/mL). While symptoms of toxicity are unlikely at daily intakes below 10,000 IU/day, the FNB pointed to emerging science from national survey data, observational studies, and clinical trials suggesting that even lower vitamin D intakes and serum 25(OH)D levels might have adverse health effects over time. THE FNB CONCLUDED THAT SERUM 25(OH)D LEVELS ABOVE APPROXIMATELY 125–150 NMOL/L (50–60 NG/ML) SHOULD BE AVOIDED, AS EVEN LOWER SERUM LEVELS (APPROXIMATELY 75–120 NMOL/L OR 30–48 NG/ML) ARE ASSOCIATED WITH INCREASES IN ALL-CAUSE MORTALITY, GREATER RISK OF CANCER AT SOME SITES LIKE THE PANCREAS, GREATER RISK OF CARDIOVASCULAR EVENTS, AND MORE FALLS AND FRACTURES AMONG THE ELDERLY. The FNB committee cited research which found that vitamin D intakes of 5,000 IU/day achieved serum 25(OH)D concentrations between 100–150 nmol/L (40–60 ng/mL), but no greater. Applying an uncertainty factor of 20% to this intake value gave a UL of 4,000 IU which the FNB applied to children aged 9 and older, with corresponding lower amounts for younger children.
Table 4: Tolerable Upper Intake Levels (ULs) for Vitamin D [1] Age Male Female Pregnancy Lactation {see at citation source}

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Re: WARNING-vitamin "D"
Reply #7 - May 28^th, 2012 at 1:56pm

Hey Lenny,

Thanks for the reply and kind words... I must admit, I too would be inclined to weight higher reports coming from the Mayo Clinic and Johns Hopkins.

That said, the older I get, the more I discover I don't know or really understand. What I have learned however, is a process to determine the five "Ws" associated with articles and studies like this, i.e., (who, what, when, where. and if possible why) along with any peer reviews and then roll up the results to see where they land.

Accordingly, when I read results of a study or an article about that study that concludes hard over one way or the opposite as to the effectiveness and safety of a given treatment for any disorder... be it cluster headache or vitamin D3 deficiency, I look first at the Principle Investigator who conducted the study...

Nearly all of the definitive studies and papers on the treatment of CH over the last 10 years have come from the same list of neurologists who include names like, Cohen, Goadsby, Leon, May, Rosen, Rozen, Sándor, Saper, Sheftell, and the list goes on...

The list of physicians frequently conducting studies related to vitamin D3 over the last 10 years includes names like Heaney, Holick, Hollis, Garland, French, Baggerly, Veith, Davies, Chen and Barger-Lux.

There's the "Who" and the "What"... at least the who and the what I tend to read most...

The "Where" are also interesting... Most CH studies not so surprisingly, come from neurologists at the major headache centers or university hospitals. Vitamin D studies generally come from endocrinologists at university hospitals and medical centers.

"When" the last 10 years with most of the really interesting studies coming out in the last 3 to 5 years.

The "Why" can be difficult to determine at times. If the complete study results are available, there is usually a section in the study report that lists any potential conflicts of interest and essentially says who paid for the study... As most clinical studies about cluster headache methods of intervention are funded by the big pharma's... you can draw your own conclusions...

The study you cited in your original post is a good case in point. It's actually a statistical meta-analysis of data taken from the Continuous National Health and Nutrition Examination Survey 2001 to 2006 run by the CDC.

It was easy to find the Who, What, Where, and When. The authors were trying to relate vitamin D more specifically, serum concentrations of 25(OH)D with C-Reactive Protein in (cardiac) Asymptomatic Adults.

Finding the "Why" wasn't possible as the complete paper by Muhammad Amer, MD and Rehan Qayyum, MD, MHS as published in the American Journal of Cardiology isn't available unless you pay to read it...

What I did find was a fascinating peer review of this study by Dr. John Cannell, MD at the Vitamin D Council that stated the following:

"If you will notice, both physicians know that vitamin D offers “cardiovascular protection.” However, they are concerned 25(OH)D levels higher than 20 ng/ml will increase inflammation as measured by CRP and thus worsen cardiovascular protection. CRP is a protein in the blood which tends to rise in response to inflammation or injury.

The authors arrived at this conclusion by adjusting their data for up to 9 variables and finding that a 25(OH)D of 20 ng/ml is associated with a CRP (range 0-5) of approximately 1.7 while a 25(OH)D of 50 ng/ml is associated with a CRP of 1.9. Their raw findings contradict their adjusted data in that the raw data showed what we have known for some time and that is that in the lower ranges of 25(OH)D, vitamin D reduces CRP.

As with most biomarkers of vitamin D, the big improvement is in people who get their 25(OH)D up from 5 ng/ml up to 20 ng/ml. We know that in most cases, the biggest bang for the buck is in treating severe deficiency in people with such low levels.

So if you have natural levels of vitamin D, say a 25(OH)D of 50 ng/ml, and you want to decrease your CRP by 0.2, then stop your vitamin D and stay out of the sun, get your levels to 20 ng/ml, and see if all the corrections and adjustments the doctors performed were correct. I certainly am not going to do such a silly thing.

Dozens of studies now exist showing supplemental vitamin D3 reduces mortality rates, in part due to its cardiovascular protection. The majority of these studies show that improvement in mortality continues through 30 ng/ml and even up to 40 ng/ml. Not enough people have levels of 50 ng/ml for scientists to see if such levels offer further protection. However, cardiovascular disease is rare in native peoples around the equator where vitamin D levels of 50 ng/ml are not uncommon.

The takeaway message from this paper is that scientists will need to recalculate lots of different “normals,” using vitamin D sufficient subjects. It’s not just that normal CRP may be a bit higher in vitamin D sufficient people, their red blood count and the protein albumin may be a bit lower, for example. The point is that pathologists and epidemiologists will need to redo much of their work. We don’t know the normal range of CRP in 65-year-old men; we know the range of CRP in 65-year-old vitamin D deficient men. Likewise, we don’t know the incidence of heart disease in 65-year-old men; we know the incidence of heart disease in vitamin D deficient 65 year-old men. We have lots of work to do."

Peer reviews add needed context to many studies... There was another study of nursing home subjects given 1000 IU/day vitamin D3 that found a higher incidence of broken bones than a similar group given a placebo... so concluded taking vitamin D3 was responsible for bone mineral density (BMD) loss with an increased incidence of broken bones.

A peer review of this study came to a completely different conclusion... It found that the subjects in this study who were given 1000 IU/day vitamin D3 were far more active than their counterparts in the group given a placebo.

Moreover, even though there was a greater incidence of broken bones in the vitamin D3 group, there was also a two fold increase in the number of falls presumably due to the increased physical activity over the placebo group.

The telling tale was in the number of broken bones per fall. When the vitamin D group was compared to the placebo group in this category, they found the placebo group was twice as likely to suffer a broken bone as a result of a fall than the vitamin D3 group... so vitamin D3 actually helped build BMD and bone strength.

One of the really interesting things about research on vitamin D3 is the number of studies listed in clinicaltrials.gov. For example, there were eleven (11) studies initiated on vitamin D in all of 2005. In 2011, there were 111 studies initiated involving vitamin D.

I'm sorry this got so long winded... It's just that it would be unfortunate for the CH'ers who could clearly benefit from taking vitamin D3 and avoid the needless pain of this disorder... to get spooked from even trying it due to a study with a confusing or misleading conclusion...

Take care,

V/R, Batch

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« Last Edit: May 28^th, 2012 at 5:04pm by Batch »

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Re: WARNING-vitamin "D"
Reply #8 - May 30^th, 2012 at 11:08pm

Well said Batch!

On to my story. I've waited a while to post because mine have been up and down and all over the place. It wasn't until last week I was able to get the blood test done again. My results were as follows:

VIT D 25-OH, D3 131

VIT D 25-OH, D2 <4

I would say my HA's are somewhat milder, and if I miss a dosage I know about it the next day, but I'm far from PF. I'm definitely open to ideas.

It appears I am not amenable to any of the treatments out there. Everything I've tried in the last 10+ years if it works at all works for a short while and then quits. My Neuro, who is NOT knife happy, told me about a NeuroSurgeon at Loyola that he observed doing a Deep Brain Stimulator a couple of weeks ago. He said the Dr. has done a few of them and has had good success. He suggested I look into it. That is the LAST thing I want to do, and they will have to be a whole lot worse than they are now for me to go that route. I'm waiting to hear more from him about the procedure and his results. My doc said he will get a copy of the results and the paper that was written about it. If I can get permission I'll pass it along. Unfortunately, I can't find out who it was that was operated on. If anyone knows someone that had DBS done at Loyola University Medical Center in Maywood IL I would love to get a chance to talk with them.

Jerry

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Re: WARNING-vitamin "D"
Reply #9 - May 31^st, 2012 at 5:21pm

Hey Jerry,

Thanks for the kind words, but I'm not happy until you're PF and happy... This regimen should be working more effectively for you. but isn't for some reason... We need to figure out why.

I've sent you an email with some info and a couple suggestions...

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

V/R, Batch

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Re: WARNING-vitamin "D"
Reply #10 - Jun 2^nd, 2012 at 11:08pm

Thanks Pete,

I printed it out and will take a good look at it when I can focus my attention on it and retain more than I can now. I think I'll probably pass it along to my Neuro, who is impressing me more each time with his openness to discuss things. He is the first one I've had who has recognized I have researched and know more about this mess than does he. I am not versed in the medical or technical side of things, but know what works and what doesn't. I really appreciate your appreciate your time and effort in this.

JErry

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Re: WARNING-vitamin "D"
Reply #11 - Jun 3^rd, 2012 at 2:05pm

Hey Jerry,

Thanks for the reply... Remember, your neurologist may start citing the evidence based mafia cop out, that one or two randomized, placebo controlled, double blind studies will be needed before he'll start taking more than a casual interest in the anti-inflammatory regimen with 10,000 IU/day vitamin D3 as a preventative for cluster headache...

If he does, let him know there have been more than 30 Level I RCTs conducted with statistically significant results indicating patients supplemented with vitamin D3 have a significantly higher response to standards of care pharmacotherapy for a wide range of medical disorders...

Moreover, there were no RCTs with a negative outcome where vitamin D made the condition worse... That trumps any possible placebo effect...

Of course none of these vitamin D3 RCTs involved cluster headache, but there is one RCT presently running for migraine headache...

Neurolgists tend to be a bit egocentric so tell him he can be the first to provide clinical observations on the efficacy of vitamin D3 as a preventative for cluster headache.

That said there are a number of neurologists treating patients suffering from remitting/recurring multiple sclerosis (RRMS) with vitamin D3 doses up to 10,000 IU/day and more.

In fact there are 15 RCTs involving the treatment of RRMS with vitamin D3 running or completed... Seven of them are double blind and placebo controlled...

Take care and please keep us posted...

V/R, Batch

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Re: WARNING-vitamin "D"
Reply #12 - Jul 20^th, 2013 at 2:51am

Hi there

I have tried to take in as much of this thread as possible but I am still a novice when it comes to D3 and to all the terminology.

I live in the UK and started on the D3 regimen as recommended on this forum in April this year. I saw a neurologist and CH specialist in May to see what his thoughts were. He was slightly sceptical (as expected) as there have been no clinical trials and placebo studies, however although he couldn't prescribe it he said that he didn't see any harm in it as long as I had my levels tested regularly. (ie as per the forum).

Therefore I recently had a blood test done at my local GP surgery. However, they rang me a week later (which they never do unless it's serious!) to tell me to stop taking it immediately as my levels were 252 (apparently 150+ is considered toxic?)

My problem is that my GP has absolutely no understanding of cluster headaches and just prescribes whatever the neurologist tells him (previously Prednisolone, Verapamil, Zolmitriptan, Sumptriptan etc etc none of which work any more and my condition has definitely worsened) and because the neurologist isn't prescribing the Vitamin D he thinks I am self medicating and as such am in a very dangerous area! I have to have another blood test in 2 weeks and he will know if I am still taking it.

I do not know about this 25(OH)D and whether those levels were checked. I also know that my calcium levels were OK. What I dont know is whether I should continue with the D3 and if so, what I should say to my GP when the next test results come back high.

I have been taking 5000 UI daily since I got the call.

I would be very grateful of some advise here please

Many thanks

Abby

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: WARNING-vitamin "D" Reply #13 - Jul 20^th, 2013 at 7:27pm Hi Abby, All the info you need is on this thread.For the vitamin D3 Regime to be effective you need a 25 (OH) D serum concentration around 80 ng/ml.So maybe you were taking to much vitamin D.Now your on 5000iu /day wait and see what your next blood test show's and let us know. Good Luck, Hoppy.
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Batch

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Re: WARNING-vitamin "D"
Reply #14 - Jul 22^nd, 2013 at 3:59am

Hey Abby,

Educating physicians on vitamin D3 therapy will continue to be an issue with many of them... Unless they've had some recent continuing medical education in vitamin D3 therapy... most are clueless. In your case with a PCP following your neurologist's recommended treatments... it sounds like you've got the blind leading the blind.

Physicians are what they were when they went through med school... and most medical schools teach 400 IU/day vitamin D3 is sufficient. IT ISN"T !!!

Show the following charts to your PCP when you see him for your labs in two weeks.

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I'll make the assumption because you're in the UK that your 25(OH)D serum concentration was measured in nmol/L. If that's the case, your 25(OH)D works out to 101 ng/mL.

Vitamin D3 toxicity is very rare. Assuming no thyroid or parathyroid problems, the best estimates are it would take a serum concentration in excess of 500 nmol/L, (200 ng/mL) to reach the lower threshold for vitamin D3 intoxication.

The simple thing to do is have your PCP test your total calcium and PTH (parathyroid) serum concentrations when he dose the 25(OH)D lab test. As long as both calcium and PTH are in the normal range, there's no indication of vitamin D3 toxicity.

Now for the real question... Howz the head? Have you experienced any reduction in the frequency, severity or duration of your cluster headaches?

If not, "tuning" the rest of the anti-inflammatory regimen is in order.

Your 25(OH)D serum concentration is in the green zone at 252 nmol/L... That's good!

Dropping back to a dose of 5,000 IU/day vitamin D3 is ok... but your 25(OH)D will drop to around 150 nmol/L, (60 ng/mL) in a few weeks.

What kind of magnesium are you taking and how much? We've found that magnesium malate, magnesium glycinate or magnesium citrate work best... 400 mg/day should be sufficient.

Several CH'ers have reported they needed more Omega-3 Fish Oil... up to 2000 mg/day.

You can also cut your calcium supplements in half.

You may have a low arterial (systemic) pH... (too much acid). The body senses this condition and triggers vasodilation in response. That makes cluster headache medications, vitamin D3 and oxygen less effective.

If this is the case, you can try a baking soda tonic 4 times a day... an hour after each meal and just prior to bed time. That's a half teaspoon of baking soda in 4 ounces of water. Taking an Alka-Seltzer 3 to 4 times a day may help as well to raise your systemic pH.

If alkalizing your system helps, going on a GOMBS diet is the next step. GOMBS = Greens, Onions, Mushrooms, Beans-Berries and Seeds (including nuts). A handful of each a day will do for starters.

See the following link for details:

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Finally, regarding clinical trials of vitamin D3... There have been over 570 since 2000 and 375 since 2010. Over 30 of these RCTs have been done to the gold standard, (randomized, placebo controlled and double blind.

Unfortunately only three dealt with headaches and none were conducted on cluster headache patients.

If you'll pass me your neurologist's email address I'll be happy to send him the results of the survey of CHe'rs using the anti-inflammatory regimen with 10,000 IU/day vitamin D3. To date, the raw efficacy of this regimen is 80% with 70% experiencing a pain free response.

It's not a gold standard study but the empirical results indicate a clear causal relationship between a vitamin D3 deficiency and cluster headache.

Take care and please keep us posted.

V/R, Batch

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Re: WARNING-vitamin "D"
Reply #15 - Sep 3^rd, 2013 at 9:44pm

Went in for surgery last week and was told prior...no aspirin and no fish oil as these are anticoagulants, meaning they will prevent blood from clotting properly after they cut me open/stitch me up.

Was told it takes roughly 14 days for the fish oil or aspirin to leave the system, so stop 14 days prior to surgery and wait to take fish oil or aspirin until stitches are removed.

I am taking this anti inflammatory regimen and had to weigh it out....longer heal time while taking fish oil or risking my cycle to begin. I chose to avoid torture by the dragon and stay on the fish oil.

At this morning's follow up appointment to check my stitches/healing progress, I am NOT healing well at my area of incision! The doctor reminded me today that my choice to continue fish oil is evident upon his review of my area of incision.

However the good news is I am not in cycle and normally would be this time of year and believe taking this anti-inflammatory regimen is the reason I am not in cycle.

Risk vs Reward?!

-Gregg in Las Vegas

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Re: WARNING-vitamin "D"
Reply #16 - Sep 4^th, 2013 at 2:47am

Gregg,

I spent a lot of time at the National Naval Hospital in Bethesda MD having my eyes examined every two wees to a month for over 5 years...

I always made time to go up on the ward to visit with our wounded warriors at every opportunity. One of the high-tech wound dressings they used that had the most rapid healing was Aquacel Ag.

It's a primary wound dressing made from sodium carboxymethylcellulose (NaCMC) containing 1.2% silver in an ionic form that supports healing from the inside out. See the following link:

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I witnessed some horrific wounds being dressed with Aquacel AG and the healing process over a few week's time was dramatic.

I've used it a couple times to dress some awe-shit gashes from logging and fishing... The healing process was never faster and each time it was totally free of secondary infection.

Take care and do keep us posted.

V/R, Batch

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purpleydog

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Re: WARNING-vitamin "D"
Reply #17 - Oct 2^nd, 2013 at 1:33am

I've been reading up on the D-3 regimen, however, I'm not seeing any studies posted here, nor any links to any actual studies. Only anecdotal info from how Batch interprets what he reads. Now, Batch has been instrumental in getting the O2 usage listed, and surveys up, and studies done and published. He does great research on anything to help a clusterhead.

With all due respect, Batch, do you really think it's safe to just write here what you read, and your own interpretations of what studies mean on D-3? Why not post links to some studies, or better yet, post an abstract, or an entire study(s) here, so people can read them.

Vitamin D-3 is a fat soluble vitamin, and stays in your system, and you can build up to toxic levels if you're not careful. Telling someone their doc doesn't know what they are talking about when that doc tells their patient their D-3 levels are way too high, and encouraging them to ignore their doc (I've seen others do this too) is irresponsible.

I agree studies need to be done on cluster heads concerning vit D-3. Why not contact Rozen, Goadsby, etc, and send them some data, maybe they can do some. There should be enough by now, maybe send them a copy of the thread that is now up to 62 pages.

Yes, there are some people who's bodies don't hold vit D, and they do have to take a 50,000 unit loading dose, along with higher than normal daily doses. But that isn't most people. People with low D levels (3ng/ml to around 20ng/ml) need to take higher doses to get their levels up. Would it be worth it to pay for a study and post it?

Doctors are becoming more aware of how vit D works in your body. Neuro's need to be aware of how it may help CH, obviously. But I'd much rather read published studies, and listen to my doc tell me where my level should be, if it's low (which for me, is), or if I'm at toxic levels. And how much I should be taking.

Just be careful what you tell people. Your interpretations of the vit D studies you've read, even though the studies have been done on several different groups of people with different ailments except CH, appear to have a bit of spin put on them. I know you mean well. Please be careful.

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: WARNING-vitamin "D" Reply #18 - Oct 2^nd, 2013 at 3:34am Hi Purpleydog, Your treading dangerous ground here, i found some of your comments quite rude and not called for.I think an 80% success rate of being pain free speeks for it's self. Hoppy.
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Batch

CH.com Alumnus

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Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: WARNING-vitamin "D"
Reply #19 - Oct 2^nd, 2013 at 8:47am

Purpleydog,

I'll assume your comments were well intended as this is an open forum and members are free to comment on whatever topic they wish as long as they stick with the rules of engagement laid out by DJ.

That said, the title of this thread and the tone of your comments have likely damaged any near term opportunity we had to do the kind of RCTs and observational studies needed to elevate the use of vitamin D3 as a standards of care recommended preventative treatment for cluster headache.

I've already received two calls from Europe, one very late last night and the other very early this morning regarding your comments and the title of this thread...

We've been working quietly with a group of prominent neurologists who have been following the two main threads: 123 Days PF and the Anti-Inflammatory Regimen here at CH.com for well over a year...

They were impressed with the results from the online survey of CH'ers using the anti-inflammatory regimen. They also commented that 10,000 IU/day vitamin D3 with all the cofactors plus a 50,000 IU loading dose once a week on top of the daily dose with frequent lab tests for serum 25(OH)D and calcium was a conservative approach to treating a vitamin D3 deficiency and preventing CH... They use higher vitamin D3 doses when treating patients with Relapsing Remitting MS...

In fact they were in a meeting discussing how to do the very studies of CH'ers using vitamin D3 as a preventative we all want and desperately need... Unfortunately, they also had CH.com up live on a large screen display when your post popped up... I'm told the meeting ended abruptly at that point as did the discussions on possible studies of vitamin D3 as a CH preventative...

You know me... We could have discussed your concerns off line... However, if this is what you intended with your comments using this particular thread as the delivery vehicle... You succeeded... Actions have consequences...

The more immediate concern is the title of this thread represents a virtual turd in the punch bowl with respect to the use of vitamin D3 to a lot of CH'ers in pain wondering what to do next... It serves no useful purpose in its present location and does more damage than good...

DJ, is it possible to reword the title of this thread to Chances of Vitamin D3 Toxicity Low and/or move it to another location? I'm confident Lenny would agree to this.

The Internet links Lenny eluded to in his initial post and the title of this thread were completely out of context and at cross purposes... The first three links discussing vitamin D3 indicated it would take 40,000 to 50,000 IU/day for several months to approach vitamin D intoxication with elevated serum calcium...

Neither the anti-inflammatory regimen or the accelerated vitamin D3 dosing schedule call for doses that high for that length of time...

There were three other articles about the same study in Denmark, A Reverse J-Shaped Association of All-Cause Mortality with Serum 25-Hydroxyvitamin D in General Practice, the CopD Study

The Vitamin D Council and several noted endocrinologists discount the results of this study as flawed...

VitaminDWiki provides an excellent review of this study and many others indicating mortality actually drops as serum 25(OH)D rises...

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Unfortunately, the net effect of this thread's title is no different than the more recent actions of a whack-o who cockaroached data from another study to do a drive-by on Omega-3 Fish Oil with a bogus claim that it was linked to cancer.

Finally, there are no US studies of vitamin D3 as a CH preventative and there never will be... Big Pharma won't fund them...

Why would Big Pharma jeopardize billions in sales of their headache and anti-psychotic pharmaceuticals to do a study of a safe and more effective regimen of off-the-shelf USP nutrients, vitamins and minerals costing 20 cents a day that prevents or significantly reduces the frequency of CH in 80% of the CH'ers who try it?

The only near term opportunity we had for vitamin D3 to gain traction with neurologists was a series of case studies in Europe... Unfortunately, that opportunity has likely gone down the dumper...

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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Emjay

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Posts: 78

Re: WARNING-vitamin "D"
Reply #20 - Jan 16^th, 2014 at 1:26pm

I just received another blood test and my D3 level is 184 ng/ml, up from 39! I was taking 15000mg vit D3, 3 50+ tabs age defense vitamins, 500 mg calcium citrate, 2400 mg burpless fish oil, and 400mg magnesium glycinate. Since yesterday, I stopped all D3 and the calcium. The doctor suggested 2 months off. I feel fine. No evidence of toxicity. No hits!!!!! What do to now? When to reintroduce D3? Any suggestions? I see the neuro in a month...

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: WARNING-vitamin "D" Reply #21 - Jan 16^th, 2014 at 6:36pm Hi Emjay, Some folk here, stay on a maintenance dose of 5000iu /day. Hoppy.
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Batch

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Control The Beast With
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Bremerton, WA
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Re: WARNING-vitamin "D"
Reply #22 - Jan 16^th, 2014 at 7:58pm

Hey Emjay,

Thank you for the feedback... Your post reinforces the need to have the 25(OH)D lab test at 30 day intervals any time the daily dose exceeds 10,000 IU/day until the 25(OH)D serum concentration reaches a steady state equilibrium.

Although high at 184 ng/mL, your 25(OH)D serum concentration is still below the minimum lower threshold for vitamin D3 intoxication of 200 ng/mL...

There are several vitamin D3 experts who claim the real lower threshold for vitamin D3 intoxication is more like 300 ng/mL. We've also had a few CH'ers under close supervision by their physicians, keep their 25(OH)D around 190 ng/mL for up to a month or more with no indications of vitamin D3 intoxication.

The real lab test for vitamin D3 intoxication involves lab tests of total calcium serum concentration and PTH. As long as both are within their respective normal reference ranges, there's no vitamin D3 intoxication.

There are also studies that show the half-life of 25(OH)D3 is 15 days at concentrations up to 80 ng/mL. I suspect the 25(OH)D3 half-life is likely less than 15 days at a serum concentration of 184 ng/mL.

You can do us all a favor by getting another 25(OH)D lab test in 30 days without taking any further vitamin D3 supplements. If the above half-life figures are correct, your 25(OH)D lab results should come back between 45 and 50 ng/mL.

I wouldn't hesitate to restart vitamin D3 therapy with this regimen should your cluster headache return. I would also continue to take the rest of the anti-inflammatory regimen less the vitamin D3.

As a side note, my wife has been taking the complete anti-inflammatory regimen with 15,000 IU/day vitamin D3 for three years and her 25(OH)D has not gone above 110 ng/mL.

When you do restart vitamin D3 therapy... and you'll know when one way or another... stick with 10,000 IU/day and test again after 30 days at that dose.

Regarding the optimum maintenance dose of vitamin D3... The best information available indicates the average sustained 25(OH)D response to a dose of 5,000 IU/day is 60 ng/mL while a maintenance dose of 10,000 IU/day results in a sustained average 25(OH)D response of 80 to 85 ng/mL.

While 60 ng/mL may be sufficient to prevent CH, any viral infection like colds or flu can trigger the immune system into consuming 25(OH)D at much higher rates leaving insufficient levels of this vitamin D3 metabolite to prevent CH.

A maintenance dose of 10,000 IU/day vitamin D3 with a resulting 25(OH)D serum concentration of 80 to 85 ng/mL, should provide sufficient 25(OH)D reserves to meet immune system needs and still prevent CH.

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Jan 16^th, 2014 at 8:19pm 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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Emjay CH.com Junior Offline I Love CH.com! Posts: 78	Re: WARNING-vitamin "D" Reply #23 - Jan 16^th, 2014 at 8:51pm Thanks for the feedback. Will get tested within 30 days.... don't want to wake the beast,
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blacklab

Ex Member

Re: WARNING-vitamin "D"
Reply #24 - Jan 17^th, 2014 at 1:40am

great topic and discussion batch,
and has prompted me to get that test this week, its been nearly 4 months, ive taken either 10,000 or up to 15,ooo a day with all other supplements, last test 194 nmol.
we heard here yesterday, here in australia that they will be doing vit d testing over a 5 year period, firstly with a group of over 60's, they said they believe vit d has the potential to do amazing things, from bone, to skin etc and they will conduct this full trial with placebo recipients and monitor over the 5 year period. I believe batch I might have mentioned they did a vit b study with female migrane sufferers late last year and the results were 27 % had favourable results, so they called it a complete success and are currently working on a vit b laced pill for distribution.
27 % favourable success rate !! geez
so it seems you are well and truly batch a trend setter in this sudden "awareness" for them to start conducting clinical trials down under, I will ofcourse try and post up any info they put out on the vit d clinical trial, since its not directly for ch sufferers, it will be interesting what other findings they come up with and if indeed intoxication levels are questioned or monitored. they also said they were alarmed at levels of peoples vit d levels and are concerned firstly at aging peoples response to monitored dosages
batch, at least its a start I suppose, and its starting to bring the attention of doctors and the health institute that there's something worthwhile in that damn little tablet.

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