I know that normally prednisone tapers are done to provide help while another medication is getting to its therapeutic level. Just wondering if a taper could be used solely to buy some relief?  Ive done three busts using vitamin m and have been on the d3 regiment since last cycle. I am trying to get the d3 up and since I have been getting crushed thought the prednisone might buy ne some time. Biggest concern is its not exactly the friendliest drug on the planet to use solely for some temporary relief. Right???
And while on taper, does the beast hibernate or keep ticking in the background??

Certainly something to discuss with your doctor, however I've seen plenty of people here use a taper to get some relief when they really, really need it. Just be careful about using it too often as it can be pretty harsh on your body.

As to what the beast does whilst on the taper, for most people it is in hibernation until either the taper finishes or drops to a low enough level that it can break through. Some people think that once either of these happens that it seems to come back with a vengeance.

Hey Birdman,

Great question.  The short answer is yes, prednisone can buy some relief... but at a price.

Prednisone is a steroidal anti-inflammatory.  It's also known as the world's best-worst medication.  It's best because it knocks down inflammation very effectively and worst as it carries a number of onerous side effects.

There's no clear confirmation on its specific mechanism of action in preventing CH... but halting and preventing neurogenic inflammation in and around the trigeminal complex is a likely candidate.

Based on hundreds of posts from CH'ers reporting about their experience with prednisone tapers, the CH beast almost always returns when the taper runs low or out...  The exceptions are likely CH'ers who reached the end of their episodic cycle.

The anti-inflammatory regimen should work for most CH'ers...  Data from several sources indicate better than 85% of the CH'ers respond to this regimen within the first month.  Others have taken longer up to three months...

Crohn's is likely the spoiler interfering with vitamin D3 preventing it from stopping your CH.  Stick with the oral route, popping the softgels between your teeth and holding the contents between your cheek and gum.

There's always the brute force method... Bump your daily intake of vitamin D3 to 50,000 IU/day for 5 days to see what happens.  Make sure you're taking the magnesium, zinc and boron.  The three-month course of vitamin B 50 is also important

In the mean time, cut all sugars and glutens... bread & wheat.

Do you have oxygen therapy available?  No sense getting whacked when you could be aborting your CH in an average of 7 minutes to a pain free state if used properly.

Take care and please keep us posted... I've a feeling you're not the only CH'er with Crohn's or GI tract absorption problems.  Working our way through this problem to effective CH prevention with this regimen will help many others.

V/R, Batch

Hey batch, have the o2 on hand up to 25 lpm now. I am sort of hoping that after three bust attempts that I'm nearing the end of a cycle. Was hoping the pred taper might get me to the end if it doesn't just hibernate. Today is day three of 30000iu that I am popping with my back teeth. I am not a fan of the pred as the side effects get me real good but I need some sleep for my mental state. Will keep you posted on the gi tract issue as I continue to pop them in my cheeks.

Birdman,

I've gone over your posts and don't see where you're taking vitamin B 50...  A 3-month course could do wonders in helping with quality sleep. 

Some additional vitamin A (retinol) might help as well.

If quality sleep is super critical, there's always melatonin...

Take care and please keep us posted.

Batch, I have not done anything other than d3, fish oil, magnesium and multi. I have tried melatonin but have mixed reviews on it. Could you point me to this other suggestion of b50. Also see you talking about k something. I get confused easy and was wondering if you could dumb a regiment done for me. You rule.

Hey Birdman,

Sorry if I've not explained the vitamin B 50 and vitamin K2 topics sufficiently...

A picture is worth a thousand words...  and a well prepared video can be worth a book's worth of reading...  As Dr. Stasha Gominak, MD is a board certified neurologist and much better looking than me...  I think you'll find her videos in the following link very informative...

As a back drop, Dr. Gominak treats patients with sleep, chronic pain and headache disorders with a regimen very similar to the anti-inflammatory regimen we take to prevent CH... 

The biggest difference is Dr. Gominak adds a 3-month course of vitamin B 50.  A single pill formulated with 50 mg of each of the seven B vitamins plus 400 mg of Folic acid.  You take one tablet a day for 3 months.

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Dr. Gominak and I have exchanged data on several occasions...  She is very supportive of the anti-inflammatory regimen as a preventative for cluster headache.  She is also the reason I added the 3-month course of vitamin B 50.

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There are six videos to watch and I suggest you watch all of them.  The first is about sleep.  The next five are Sleep 202...  All are well worth the time spent.

Regarding vitamin K2...  Pick up some of Life Extension's Super K with advanced K2 Complex.  It contains K1 (clotting vitamin) and both K2 vitamins (MK-4 and MK-7).  B sure to talk with your PCP before you start the Super K if you've been taking blood thinners like Coumadin, (warfarin - the same stuff in rat poison).

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Hope this helps.  Keep asking the questions until we get you completely pain free...

V/R, Batch

Awesome Batch and thanks. I was never good at science and wish we could get some regiment that contains everything needed in one purchase. The Batch vitamin regiment. Haha. I will watch the videos and act accordingly. Will keep everyone posted. Feeling much better today and wonder if the d3 in my check had an impact b helping me avoid the gi tract. Hmmmm

Hey Birdman,

Glad you're feeling better.  Absorbing vitamin D3 between the cheek and gums is just the same as sub-lingual, under the tongue. 

Both methods bypass the GI tract... and in your case with compromised GI tract absorption, should result in higher serum concentrations of vitamin D3 and the first metabolite, 25(OH)D than absorption in the lower GI tract.

Take care and please keep us posted when you've started the 3-month course of vitamin B 50.

V/R, Batch

Will do. As for tonight, hopefully catching up on some much needed sleep.

Pleasant dreams...

Batch wrote on Sep 27^th, 2014 at 9:04pm:

Both methods bypass the GI tract... and in your case with compromised GI tract absorption, should result in higher serum concentrations of vitamin D3 and the first metabolite, 25(OH)D than absorption in the lower GI tract.

Is it worth everyone else consuming our D3 this way?

So all was well until 4am when a tension headache woke me with extreme tightness. Next thing I know I am in full cluster but on the opposite side of the current cycle.  Someone please tell me that the beast didn't take a road trip

Birdman,

Sorry you didn't get a complete night of restful sleep.  Erratic CH patterns are not uncommon with this regimen until a therapeutic level of 25(OH)D is reached.

Again, the 25(OH)D serum concentration is only a bio-marker... The serum concentration of 1,25(OH)2D3, the active vitamin D3 metabolite is roughly a thousand times less than the precursor, 25(OH)D3. 

Serum 1,25(OH)2D3 can also be measured by lab tests.  It's produced by the kidneys to maintain serum calcium within its normal reference range so is not a good measure for us as CH'ers except to confirm what we already know from the 25(OH)D lab test... and that is there's sufficient levels of this vitamin D3 metabolite.

It's the extrarenal (outside the kidneys) metabolism of 25(OH)D3 that's responsible for genetic expression that applies to us as CH'ers as a preventative.  This metabolism of 25(OH)D takes place within the target cells at the nuclear level.  Accordingly there's no direct method of measuring its concentration. 

That said, a physiological response of vitamin D3 activity, in our case, a cessation of cluster headache symptoms, is the only real indirect measure.

If we have a favorable response to the anti-inflammatory regimen, then we can assume all the needed vitamin D3 cofactors are present at sufficient concentrations.

If we don't respond or only partially respond to this regimen, then there are three logical possibilities: 

The needed cofactors and related enzymes are present, but are being consumed by competing cells, i.e., the immune system's T-cells... a response to colds, flu, allergic reactions or trauma.

The second possible reason for no response or a partial response to this regimen is the needed cofactor(s) are not present at sufficient concentration(s) to support the genetic expression we need to prevent CH.

The third possibility is a low arterial pH...  Too much acid.  This condition can and will interfere with nearly all pharmaceuticals used to abort or prevent CH making them less effective... or not effective at all.

I realize this is confusing at best... but it's the only logical measure we can use at this point. 

In short, if we have a favorable response... we got everything right.  When we don't respond... then look for a cause like a comorbid condition and tune the regimen.

Take care,

V/R, Batch

Mike,

As long as oral vitamin D3 and the rest of this regimen is proving effective in preventing CH, then swallowing the vitamin D3 liquid gel caps is working just fine.

However, when there's no response or only a partial response after a few weeks to a month on this regimen (including the loading schedule), with serum 25(OH)D below the green zone... then absorbing the vitamin D3 in the mouth by popping the vitamin D3 gel caps between the back teeth and holding the contents between the cheek and gums for 15 minutes is a reasonable next step.

Hope this answers your question.

Take care,

V/R, Batch

Thanks Batch, 973 CH pain free days with D3 says it is working just fine!

Outstanding...  If I recall correctly, from my uncle's travels to New Zealand, it's getting close to opening season for Chinook or Quinnat...

I only boated one chinook during this years fishing trip to Pelican, Alaska in late August...  That said, I still managed to bring back 40 lbs of vacuum sealed frozen Coho (silver salmon) fillets and another 5 lbs of black cod fillets so the trip was well worth it.

Almost spot on with your memory Batch, the season starts in a couple of days time on Wednesday 1st October (remember we're almost a day ahead of you).

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I'm sure there will be plenty of people counting down the hours before they can get their lines out, while the rest of us keep going with our day jobs.

So I got to see the neuro and explained that clusters appear to have subsided but I am experiencing what I think may be tension headaches or rebound headaches. She suggests instead of a pred taper (she is well aware of how I get on it) that I do a quick four day dexamethasine taper. Also recommended gabapentin to deal with any nerve pain I may be experiencing. Anyone with any background on these drugs?

Day one of four day taper and pain free as usual on this poison. Was hoping for some major insights into gabapentin/nuerontin. Thinking about waiting that one out a few days and seeing how I come out of taper.

Birdman,

Neurontin (gabapentin) may or may not work.  I tried it for a month in early 2005 after turning chronic.  A dose of 300 mg/day resulted in a great 3-martini buzz... along with a slight reduction in the frequency and severity of my CH... 

I don't drink and drive so I started taking Neurontin at night before bed so I could drive the 20 miles to work and back with a clear head. 

Unfortunately, the first week of neurontin resulted in swelling ankles, a common side effect.  The swelling got so bad I needed Hydrochlorothiazide (a diuretic) and support hose to contain the swelling...  Three weeks of that was enough for me...  The risk reward ratio was not favorable so I tapered off the neurontin...

For the next five years as a chronic CH'er, my only CH control was oxygen therapy at flow rates that support hyperventilation...  This method of oxygen therapy was also effective in blowing away shadows...

Edited to add the following:

"Allopathic medicine treats epilepsy and nerve pain with Neurontin (gabapentine). And guess what? Gabapentine causes magnesium deficiency. Whereas if you take magnesium for nerve symptoms you actually have a chance of eliminating the cause of the problem.

Drug researchers say gabapentine affects the cells' calcium channels binding to calcium receptors and thus preventing erratic electrical signals between neurons.

However, magnesium binds to these same receptors and properly opens and closes these calcium channels so you don't get excess calcium and you don't get erratic electrical signals. Whereas, taking gabapentine means you are depleting magnesium and can be making your symptoms worse.

One of the side effects of gabapentine is worsening of seizure activity. You gotta wonder about the wisdom of using a drug prescribed for seizures that can cause more seizures! But now we know why; it's depleting magnesium, so your muscles and nerves go into spasms.

Magnesium deficiency can cause numbness, tingling, seizures, muscle contractions, spasms and cramps and supplementing magnesium should be the first line of treatment for any of these symptoms."

You can read the complete article at the following link.  It's titled:

Magnesium for MS, ALS and Epilepsy
by Dr. Carolyn Dean, Originally published October 1 2014

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In 2010 I stumbled onto vitamin D3 and the anti-inflammatory regimen...  with magnesium...  The rest is history.

Take care and please keep us posted

V/R, Batch

Thanks batch. I am cluster free I believe. Dealing with something that I have never experienced in 27 years of clusters. Maybe a nerve issue or rebound issue. Do you think the d3, which I am still doing at 30,000iu, can also help with this issue?  That would be awesome. Utterly awesome.

Birdman,

Stick with your present vitamin D3 dosing schedule and try to get a lab test for your serum 25(OH)D, calcium and PTH.  Don't be surprised to see a 25(OH)D serum concentration between 120 and 130 ng/mL.  No biggie as long as your calcium stays within its normal reference range... Your PTH serum concentration should be low...

It's been my experience that vitamin D3 and the rest of this regimen dispatched shadows quite effectively...

However, given the term "shadow," with respect to cluster headache, is not well defined in medical literature, there could be other causes.  If a shadow is due to some form of inflammation in and around the trigeminal ganglia... then the anti-inflammatory regimen should work to prevent them. 

Take care and please keep us posted.

V/R, Batch