An alternative

[Batch]

Hello All,

My name is Pete Batcheller, a.k.a "Batch". I don't have Crohn's... My problems are at the other end of the body, the brain... I'm a cluster headache sufferer, (CH'er).

As different as they are, these two conditions have much in common... From what I've read and learned about Crohn's, a co-worker had Crohn's and what I know about cluster headache after more than 20 years living with it... both conditions are a royal pain... albeit Crohn's involves the inflammation of the GI tract and cluster headache involves inflammation in and around the trigeminal nerve... Both conditions can be very debilitating with cluster headache (CH) only slightly more rare and both can be extremely painful. Both conditions can leave the sufferer with bouts of depression, anxiety and a reduced quality of life. Both conditions have no known cause and no known cure. Both conditions have standards of care treatment and management guidelines with a long list of medications including steroid tapers or bursts that are frequently prescribed for both conditions... Nearly all of these medications carry onerous side effects and none are completely effective,

With that as my intro, I would like to offer a different perspective on two seemingly unrelated medical conditions... that I opine are very much related.

Please let me explain. I'm not a physician, but I am a 70 year old retired Navy fighter pilot with a dated degree in Chemistry from the U of W in Seattle, WA. I am also a long time chronic CH'er who hasn't had a cluster headache since October of 2010. I know the wheels are turning... So what does CH have in common with Crohn's... The pathogenisis of these two medical disorders share a common thread... both are idiopathic, chronic, relapsing, inflammatory conditions... and I contend part of this inflammation involves a vitamin D3 deficiency.

I discovered in 2010 that I was vitamin D3 deficient... A lab test for my 25(OH)D serum concentration came back below 20 ng/mL... so I started what I call the anti-inflammatory regimen. This regimen includes 1200 mg/day Omega-3 fish oil and vitamin D3 repletion therapy with 10,000 IU/day of vitamin D3 plus the vitamin D3 cofactors, calcium, magnesium, zinc, boron and vitamin A (retinol) all at RDA. Within two days I was completely pain free.

After three weeks free of CH I got brave and stopped taking the entire regimen to see what would happen. Within 36 hours my CH returned so I restarted the regimen. I call this a burn down test of my 25(OH)D reserves. I do this test at least once a year with the same results... My CH return in a week or less and dissipate as soon as I restart the anti-inflammatory regimen. For those of you familiar with the confusion between coincidence and causality when if comes to the efficacy of any medication, I think you'll see as I do, the relationship between taking this regimen and a cessation of my CH is causal.

I'm not the only CH'er taking this regimen to prevent my CH. Since I started posting about my experiences with this regimen in December of 2010, over 600 CH'ers have started this regimen... Better than 80 % of them have experienced a significant reduction in the frequency, severity and duration of their CH... By significant I'm talking a reduction in frequency from three CH a day to less than 3 CH a week. 60% of the 600 CH'ers experienced a lasting pain free response

You don't need to believe me or understand what I'm trying to tell you... All you need to do is see your PCP or enterologist and ask for the vitamin D3 lab test. It's called 25 Hydroxyvitamin D or 25(OH)D for short. The normal reference range for 25(OH)D is 30 to 100 ng/mL. Unfortunately most physicians will interpret a 25(OH)D serum concentration of 31 ng/mL as normal. While that may be true and a sufficient level of 25(OH)D to prevent rickets, it is far too low a concentration to prevent cluster headache or Crohn's. We need to have our 25(OH)D serum concentration up around 80 ng/mL in order to experience the non-skeletal health benefits of vitamin D3.

Just be aware that many physicians with no experience in vitamin D3 repletion therapy will go into fibrillation over taking 10,000 IU/day vitamin D3 and lab results for 25(OH)D over 60 ng/mL.

If you doubt what I'm saying, and I'm confident many of you will... please check out the cluster headache forum at (attempted link removed - Administrator) treatment section and the threads titled "anti-inflammatory regimen" and "123 Days Pain Free..." You can view these threads as a guest without joining.

You can also go to a website called VitaminDWiki if you want to read about a long list of medical conditions that can be treated and or prevented with vitamin D3.

Disclaimer: I'm not a Troll and I don't work for or hold stock in companies who sell nutraceuticals.

Take care and please post a reply shoot me a PM if this makes any sense...

V/R, Batch

 

[sue2003]

Hi batch, I have both Crohn s disease and cluster headache. My sister have only cluster headache. It is a very interesting theory but I have some concerns about the very high dose.
In Egypt, although we,have a lot of sun, we have a lot of rickets in children. Some times in teens. Researchers found it is genetically determined. The maximum dose agreed is 6,000unit per day. What do you think?

 

[Clash]

There are a number of threads about this.

Here is a good one

http://www.crohnsforum.com/showthread.php?t=48140&highlight=vitamin

 

[Jmrogers4]

Thanks Clash, yes there has been studies done on Vitamin D and Crohn's disease. My son's GI has him supplement with daily vitamin D3 as he thinks that low end of normal for a crohn's patient is not where they should be.
Here's a link to one study
http://www.ncbi.nlm.nih.gov/pubmed/23594800
and another
http://www.gastrojournal.org/article/S0016-5085(11)01638-6/abstract

 

[Lisa]

Batch - thank you for the informative and lengthy post. One thing that many IBD sufferers' know -a s well as their doctors, is that Vitamin D levels is often an issue. This deficiency does not CAUSE IBD - but is a symptom of ongoing issues, as is a deficiency of Vitamin B.

 

[baistuff]

Oh my. Please don't compare crohn's and Cluster headaches. They have nothing to do with each other. To say both are inflammatory would be no different than saying LeBron spairing his ankle is like crohns because both involve inflammatory pathways. Ridiculous.

Let's clear a couple of things up.


Cluster headaches are significant very painful headaches thought to be caused by misfiring nerves. Typically there is a cycle and pattern to the misfiring, more common at night which is why the classic presentation is searing pain behind the eye that awakens one from sleep. VERY commonly, exposure to things like tobacco and alcohol trigger the nerve firiing. Many, but of course not all of those with chronic cluster headaches report alcohol and or/tobacco use.

Treatment of cluster headaches (besdies avoid triggers) is actually pretty simple. Oxygen. some hi flow o2 for 10 or 15 minutes causes relaxation of the area for some reason and can abort the heaache quickly. We do it in the office many times with great success. Tylenol, advil, even the narcs, don't do much for this, because it's neurally generated pain.

Vitamin D deficiency is associated with many ailmenets, and it's actually reasonable to surmise it can play a role in cluster headaches. D is needed for proper calcium absporption, if without calcium, muscle, nerve and many other tissue won't function properly. Could be why calcium channel blockers are actually used to prophylax cluster and other headache syndromes.

Want to avoid Cluster headaches? Don't drink, don't smoke, get plenty of rest, and sure check out you vitamin levels. And if you have them, treat it with oxygen in an MD's office. You will feel a million times better in 10 minutes.

BTW- there is no known chronic complication, iimmune reactions, risk factor for anything associated with Cluster Headaches, even though they themselves are chronic and painful. There is not even the slightest connection to crohn's from an immune, infectious, or pathophysiologic realm.

 

[Batch]

Hello Sue,

Yikes! Crohn's and CH... That's a double whammy! I'm sorry to hear you and your sister have CH...

Regarding your question on dosing with vitamin D3... There are at least two RCTs where seniors like me who were found to be vitamin D3 deficient, i.e., a 25(OH)D serum concentration less than 20 ng/mL, were given a single oral dose of 500,000 IU or 600,000 IU of vitamin D3 as repletion therapy with no ill effects.

There are also studies of RR MS patients taking escalating doses of vitamin D3 for a year with up to 40,000 IU/day for six weeks... again, no toxicity as indicated by serum calcium concentrations above the normal reference range.

In reality, it's not the vitamin D3 dose but rather the 25(OH)D response that's important. You would need to take 50,000 IU/day vitamin D3 for well over a month to come even close to becoming toxic... as indicated by a serum calcium concentration above the normal reference range.

For example, the average 25(OH)D response to a sustained intake of 5,000 IU/day vitamin D3 is 60 ng/mL and the average 25(OH)D response to a sustained intake of 10,000 IU/day vitamin D3 is 80 ng/mL.. I'll post this graphic once I've met your website's 10 post threshold.

I've been running an online survey of CH'ers taking the anti-inflammatory regimen to prevent their CH since December 2011. As of last April, 127 CH'ers have completed this survey. The results follow:

106 of the 127 CH'ers (83%), who completed the survey questionnaire reported significant reductions in frequency, severity and duration of their CH. 75% reported 24-hour pain free responses and 60% reported remaining substantially PF. Average starting 25(OH)D serum concentration reported was 23.4 ng/mL. The average 25(OH)D serum concentration response reported after ≥30 days or a favorable response to this regimen was 78.5 ng/mL. This regimen appears equally effective for both Episodic CH'ers and Chronic CH'ers, although ECH'ers enjoy a slightly higher efficacy of 85% vs. 70% for CCH. This may be due to the ECH’er confusing end of cycle with a favorable response. A stress test of 25(OH)D reserves conducted after 13 mo. PF, resulted in a return of CH after 8 days without vitamin D3. 33% reported comorbidities. There were no major adverse events requiring medical intervention reported.

I submitted the abstract of this survey to the American Academy of Neurology. It was accepted and I was invited to make a poster presentation at the AAN Annual Meeting last April, in Philadelphia. The poster presentation was well received. As a result of that presentation, I've been in direct contact with several neurologists who watched my poster presentation who are now treating their cluster headache patients with the anti-inflammatory regimen. They are seeing and confirming the same clinical results...

Regarding a widespread vitamin D3 deficiency among people in the Middle East... You are spot on correct... Unfortunately the vitamin D3 deficiency it's really global... and pandemic... There are several studies where physicians treating pregnant women with vitamin D3 deficiencies have found rickets in fetus before they were bone. There's are simple reasons for this vitamin D3 deficiency...

[1] The human skin (depending on the amount of pigmentation) can generate upwards of 15,000 IU of vitamin D3 in as little as 10 minutes when exposed to the UV-B in direct mid-day sun... clad in a bathing suit without sun block...

Most of us haven't done that since we were kids... and if we tried it today, the skin cancer mafia would have us douse ourselves with factor 50 sun block chemicals... For those who are curious how this happens... vitamin D3 (cholecalciferol) is produced in the human skin when the ultraviolet B in direct sunlight strikes a molecule of 7-dehydrocholesterol... Yes, we need cholesterol for our skin to make vitamin D3...

[2] Lack of adequate supplemental vitamin D3... Big Government bureaucrats (and Big Pharma) don't want people taking healthy doses of vitamin D3, i.e., 5000 to 10,000 IU/day. Here in the US, bureaucrats at the Institute of Medicine would have us taking no more than 400 IU/day vitamin D3 and that 4,000 IU/day is the maximum tolerable dose. Pardon my French but this is BS!

The real vitamin D3 experts all agree that the IOM recommended vitamin D3 dose is far too low... Unfortunately, too many physicians are taught in medical school that the IOM recommended vitamin D3 dose is 400 IU/day and that taking higher doses can result in vitamin D3 intoxication...

Vitamin D3 toxicity is actually difficult for the otherwise healthy adult to achieve... Moreover, its not the vitamin D3 that becomes toxic, it's the extra calcium pulled from the gut or bones and pushed into the blood stream by vitamin D3 that becomes problematic... The condition is called hypercalcemia. Too much serum calcium calcium can overload calcium homeostasis, a set of physiological mechanisms that control the serum calcium concentration... and try to keep it within a very narrow range...

As it would be unethical to conduct a vitamin D3 study to determine what dose and duration of dose results in toxicity... the "experts" have taken case studies of unintended vitamin D3 overdoses where the patient for example, was provided mislabeled vitamin D3 and took 1 million IU instead of 10,000 IU... There's also reports that some cases of vitamin D toxicity involved vitamin D2, only available by prescription...

[3] Vitamin D3 deficiency is becoming very common in Mexico, Australia and other countries close to the equator... Why? Air conditioning...

[4] As is the custom in many Middle East countries, women are required to be covered from head to toe when out of the house/home... There's no way to generate cutaneous vitamin D3 covered like this...

Now for the bottom line... I'm very confident you and your sister can bring your CH under control taking 10,000 IU/day vitamin D3 and all the vitamin D3 cofactors...

The most important cofactor is magnesium... Any vitamin D3 dose over 4000 IU/day requires at least 400 mg/day magnesium... As magnesium plays several important roles in vitamin D3 pharmacokinetics, and is consumed in these roles, taking vitamin D3 without magnesium supplements depletes systemic magnesium from dietary sources.

I'm not a physician so please discuss this regimen with your PCP or neurologist when you go in for the 25(OH)D lab test.

You can find a photo of all the supplements I take along with a table of supplements and doses at Clusterheadachs dot com in the Medications, Treatments, Therapies section within the thread titled Anti-Inflammatory Regimen. I'll post these photos here when I've made 10 posts...

Again, I'm confident the odds are in your favor that your CH will respond to this regimen. Although I can't prove it yet due to a lack of feedback data, if I'm correct in my assumptions, this same regimen should also result in a reduction of your Crohn's symptoms.

Take care and please keep me posted.

V/R, Batch

 

[Batch]

Clash,

Thanks for the link to the interview with Dr. John Cannell, MD on vitamin D3 and Crohn's. I've been following his work on vitamin D3 for the last four years. He is among a group of physicians I call Jedi Masters of vitamin D3 therapy. That group includes Reinhold Veith, Robert P Heaney, Cedric F. Garland, K Michael Davies, Tai C Chen, Michael F Holick, Carol L. Wagner, Carole Baggerly and M Janet Barger-Lux. I've spent a good bit of time talking with Dr. Robert Heaney, MD about his studies on vitamin D3 and he was kind enough to tutor me on the pharmacokinetics of vitamin D3.

All members of this group of vitamin D3 experts say we need to take the vitamin D3 cofactors when we take vitamin D3 at doses between 5000 and 10,000 IU/day and higher.

I've pulled up 18 studies at clinicaltrials dot gov where Crohn's was the medical condition being investigated and vitamin D3 was listed as the method of intervention... Only a few of these studies call for a vitamin D3 dose of 10,000 IU/day and none of these studies call for any of the vitamin D3 cofactors.

I've also searched your forum for posts on vitamin D3 therapy at 5000 to 10,000 IU/day. There were a few very excellent posts by your forum Co-Founder, David that also covered the vitamin D3 cofactors: magnesium, zinc, boron, vitamin A (retinol), vitamin K2 and the B vitamins...

Part of my motivation for starting this thread was to see if any of your forum members were taking vitamin D3 as a primary or adjunct therapy to control their CD. I found one thread on this topic, but there were only a handful of responses. It was good to hear your son is taking vitamin D3.

We have over 600 members of the clusterheadaches forum taking the anti-inflammatory regimen since December of 2010. Nearly all are taking 10,000 IU/day vitamin D3 plus all the cofactors at the doses indicated below:

Supplement -> Dose
Vitamin D3 (Cholecalciferol) 10,000 IU/day (Adjust as needed to keep serum 25(OH)D 60 to 80 ng/mL)

Omega 3 Fish Oil 1000 to 2400 mg/day (Minimum of EPA 360 mg/day, DHA 240 mg/day)

Calcium 220 to 500 mg/day (calcium citrate preferred)

Magnesium 400 to 500 mg/day (magnesium malate, magnesium glycinate or magnesium citrate)

Vitamin K2 (MK-4 & MK-7) MK-4 1000 mcg/day, MK-7 200 mcg/day (MK-7 preferred due to half-life)

Vitamin A (Retinol) 900 mcg (3,000 IU) for men, 700 mcg (2,333 IU) for women

Vitamin B 50 3-month course of one tablet a day

Zinc 10 mg/day

Boron 1 mg/day

There hasn't been a single case of vitamin D3 toxicity or any other adverse events requiring medical attention.

Take care and thanks again for the link.

V/R, Batch

 

[Clash]

I can only recall one member using Vitamin D3 and cofactors as the only therapy for CD but there may be others about.

Yes, David has some great info on vitamin D3 and its cofactors. There are a lot of members that are on vitamin D3 and it is common advice on this site to get vitamin levels checked regularly. Those who have small bowel disease are often deficient due to malabsorption issues. I think you'll find that many here supplement with vitamin D3 and other vitamins due to this issue.