xpywka,

The effect of corticosteroids on vitamin D3 metabolism is a contentious issue...  Having said that, there are several randomized, double blind, placebo controlled studies that prove calcium and vitamin D3 prevents loss of bone mineral density in in patients with rheumatoid arthritis who were treated with low-dose corticosteroids...  so vitamin D3 still works at least to maintain BMD in the presence of steroids...  In short, no big worry... 

Have you seen your doctor for the 25(OH)D lab test?  Knowing the concentration of 25(OH)D will give you a good idea how long on average, it will take for a favorable CH response.

As far as other sources of omega 3 fatty acids for vegans go, any source your wife finds acceptable should work.  It's the anti-inflammatory properties you're looking for not necessarily the source.

My wife has been free of her chronic migraines for 17 months since she started the complete anti-inflammatory regimen.  For nearly twenty years they came like clockwork each month...  Now they're gone...  The only thing she does different is take 15,000 IU/day vitamin D3.

I'm tracking two other chronic migraineurs who are on the anti-inflammatory regimen.  Both of them are going on their 4th month on this regimen and they're still PF of their migraine headaches.

Take care and please keep us posted.

V/R, Batch   

bhb,

Thank you for the fascinating response...  It appears you've come up with a perfectly logical and very effective year-round vitamin D3 dosing strategy to control your cluster headaches...

Fellow episodic CH'ers would do well to see their doctors about using this dosing strategy to prevent their CH instead of resorting to the very invasive prescription medications with all their onerous side effects...

That your neurologist called for the lab test for 25(OH)D and prescribed 50,000 IU/day vitamin D3 for your RRMS is also very encouraging...   My guess is he prescribed the 50,000 IU/day vitamin D3 for four months based on his prerogative as a board certified neurologist...  and the fact that there have been some gold standard studies linking vitamin D3 deficiency and RRMS...

Treating RRMS with vitamin D3 was unheard of a few years ago...   If neurologists have connected the dots between a vitamin D3 deficiency and RRMS...  there's hope they'll do the same for a vitamin D3 deficiency and cluster headache...

BTW...  I've a friend and fellow shipmate I've known for nearly 40 years who's wife has RRMS...  They were exited that she was starting on copaxone (glatiramer)...  Unfortunately, the results were minimal and disappointing... 

I told them about the anti-inflammatory regimen and sent them a copy of a study of RRMS patients taking vitamin D3 to control this disorder...  His wife has been taking 20,000 to 30,000 IU/day vitamin D3 since March of 2011.  She walks just fine, has only an occasional ache and pain... and no major relapses...

A major gold standard study of RRMS patients using vitamin D3 in Finland concluded the relapse-free zone was a serum 25(OH)D concentration above 50 ng/mL...  Sound familiar?

I've spent the last five months trying to interest some of the world's leading neurologists who specialize in treating patients suffering from cluster headache on the safety and efficacy of this regimen in preventing the terrible pain of our disorder...

I've done this in an attempt to elevate this method of treating cluster headaches into the current thinking among the leading neurologists treating patients with our disorder in the hope that one or more of them would take the challenge and start a clinical study on it.

Unfortunately, their response so far has been underwhelming to say the least... 

Most want to see the results of a gold standard double-blind, placebo-controlled, randomized clinical trial showing statistically and clinically meaningful improvements in cluster headache episodes associated with the active treatment... instead of conducting such a study 

It appears they want to see this kind of medical evidence before suggesting the lab test for 25(OH)D and followup vitamin D3 therapy to their patients should the results of this lab test come back indicating a vitamin D3 deficiency...

In short... we're stuck in a "do loop..."  Which comes first... chicken or the egg?

Meanwhile, forward thinking CH'ers like all of you who've responded with posts to this thread because you've taken the bull by the horns and given this regimen a try...  most with very exciting results...

Given the very encouraging results reported so far here at CH.com and ClusterBusters...  I think the CH'er community of sufferers in general is starting to get the word... that this regimen really works to prevent cluster headaches... for an average of 20 cents a day no less...  and it's the neurologists who are at the steep end of the learning curve...

If we continue to ask for the lab test for 25(OH)D to determine if we're vitamin D3 deficient and take information on the effectiveness of this regimen to the neurologists and primary care physicians who treat us, they might just start catching up with us... 

One or two enterprising types might also take pen in hand and publish a clinical evaluation...  When that happens... Katey bar the door...  There'll be a flood of new studies on this topic registered on clinicaltrials.gov.

Most of all we need CH'ers who have either had a favorable response to this regimen or tried it for at least 6 to 8 weeks with increased vitamin D3 doses above 10,000 IU/day take the Anti-Inflammatory Regimen Survey...  Even if you didn't experience a favorable response after 6-8 weeks or had to stop this regimen for some reason...  Take the survey...

Results from this survey will carry far more weight than a claim of effectiveness any one of us can make.

Take care bhb...  and thanks again for the wonderful replies.

Hey Malcom...  Welcome to the club...  Chronic CH'ers respond to this regimen with better than acceptable efficacy...  The odds are in your favor.

Ask your doctor for the 25(OH)D lab test.  With the results in hand, you'll have a better idea how long it might take to have a favorable response to this regimen.

Take care and please keep us posted on your progress.


V/R, Batch

Hey Tammy,

Thanks for the update and great question.  I'm glad your neurologist gave you a green light to switch to vitamin D3. 

I know the feeling that you want the attacks to stop and the beast to go back to sleep so you can get some of the same...  'Been there, done it, and have a T-shirt to prove it...

I also don't see any problem increasing your intake of vitamin D3 to 20,000 IU/day and still continue the loading dose of 50,000 IU once a week. 

You'll be using the brute force method at that point, but even a weekly intake of vitamin D3 this high is still nowhere near what some MS patients take for their disorder and well below the 280,000 IU/week that several studies have shown to be a safe sustainable dose of vitamin D3.

It's clear you're also taking the other important parts of this regimen, so given your cycle is lasting longer than normal, there may be other factors in play like a low arterial pH...  too much acid...

Try taking the calcium tablets with a glass of sugar free lemonade...  I made it fresh and used Splenda to sweeten to taste.  I also like Baja Bob's sugar free Margarita Mix... 

It's fortified with additional citric acid and strange as it may sound, this actually lowers the acid content of the lower GI tract and elevates arterial pH to the upper end of the normal range... I like Baja Bob's sugar free margarita mix with or without the tequila...  Fortunately, alcohol has never been a trigger for me..

An alkalizing and anti-inflammatory diet might help as well.  Cut out all sugars and high starch foods.  Fresh fish and chicken are great, but limit red meat to once a week.  Eat lots of colored vegetables, cheese, fruits, whole grains and nuts...

Try to eat a serving of GOMBS every day...  GOMBS stands for Greens, Onions, Mushrooms, Beans/Berries and Seeds...  A handful of each is usually sufficient.

I make a tasty bean salad using a can of each: string beans, kidney beans and garbanzo beans. I add to that a half sweet onion and three to four fresh jalapeño peppers (split in half and scrape out the seeds and placenta before slicing to cut the heat).  I also add a half a small carton of sliced baby portobello mushrooms and a couple heaping tablespoons of sunflower seeds... 

I season the mix with garlic powder, McCormick's Perfect Pinch Lemon Herb seasoning and fresh ground pepper to taste then top with a dressing of fresh squeezed lemon juice and plenty of extra virgin olive oil.

I also make a killer broccoli soup...  Half a medium head of broccoli tops and stems, half a sweet onion sliced and diced, and a half small carton of sliced baby portobello mushrooms. 

I add these to a frying pan with a couple slices of chopped bacon that's just about done, season the mix with lots of garlic powder and the lemon herb seasoning, then stir fry until the broccoli starts turning bright green... 

When the broccoli is almost done and still a bit crunchy, I add a half can of drained garbanzo beans to warm them up for a minute then dump the entire mix into a blender with a can of chicken consomme and a half cup of heavy cream. 

Blend until the lumps are gone and the consistency looks like thick pea soup. I also kick it up a notch by adding a quarter to half teaspoon of curry powder and blend again for a couple seconds...  Serve with a dollop of sour cream and fresh ground pepper.

The berry and seed parts of GOMBS are easy...  Make yourself a berry smoothie every morning...  Fresh or frozen raspberries, blackberries and strawberries also provide the seeds...  Sweeten with Splenda if the smoothie gets too tart.  If you get hungry during the day snack on some almonds...

Hmmm...  this is starting to sound more like Guy Fieri's Diners, Drive-ins and Dives than Medications,  Treatments,  Therapies...  but then...  we are what we are... or what we eat...  or something to that effect...

Please believe me... I'm not a health food nut...  I smoke like a chimney and enjoy my evening rum & cokes and a glass or two of wine with dinner...  but there is clearly something about eating the right food types that helps the body help itself...

You can read more about alkalizing and anti-inflammatory diets as well as the GOMBS self-healing diet at the following links:

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

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

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

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

Take care and please keep us posted...  I suspect you're only a few days away from going pain free..

V/R, Batch

Seed,

Here's a link to ZRT labs. 

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

They have two options on this page.  You can find a local provider (M.D.) to do the test and use your medical insurance or you can order it direct without a prescription for $65 and DIY at home then mail in the blood spots you collected... 

They'll send the results back to you within a couple days after receipt.  They also have an online training video that walks you through the collection process.

I keep two of their blood spot collection kits on hand...

Hey Tammy,

I know what you're going through when CH makes a wake up call to start your day then try to recover enough to go to work...  Hang in there. The frequency and severity of your CH should start dropping shortly...

Take care and keep us posted.

V/R, Batch