Hey Heather,

Thanks for the update on your response to this regimen...  It never hurts to hear from someone capable of pouring heavy metal rods in a very bright arc lite...

Take care and please keep us posted.

V/R, Batch

Hey Renée,

I like your style...  Flatlining the beast is clearly a goal we all share... And all of us who have suffered from CH for any length of time without benefit of a meaningful method of intervention have looked over the edge at one time or another...

What I find most amazing is that when you finally do come across something that works well enough to not only control the beast, but give you back a quality of life you didn't think possible with CH...  Everything changes for the better...  and you enjoy life so much more than ever... 

It's like having an Angel flying cover for you...  to assassinate the beast...  making all the fear and anxiety associated with the next CH a thing of the past...  And if the beast does manage an appearance...  no biggie... Just blow it away with oxygen therapy at flow rates that support hyperventilation.

As far as reports on the efficacy of this regimen go...  the numbers just keep getting better.  Ian, with your report, we're pushing 80% efficacy with no real side effects or adverse events reported.  That's a heck of a lot better than verapamil at 50% efficacy and all kinds of side effects!

I know we still have a few folks who also suffer from comorbid disorders that can prevent the full response so many others are experiencing so I'll continue to look for other possible solutions.

In the mean time for others thinking about trying this regimen for the first time... please discuss it with your PCP or neurologist...  I'm not a doctor...  or a snake oil salesman...  just another CH'er like you.

For those of you who find this regimen is making a difference, be sure to discuss it with your PCP or neurologist as well...  they might just learn something new...  and be better prepared to help the next CH'er who walks in to the office with a red eye, drooping eyelid and saline gush complaining about a screwdriver lodged behind the eye...

Take care,

V/R, Batch

Renée,

"Pushing 80% efficacy" with this regimen is better than a SWAG...  The raw numbers for folks trying this regimen who have either posted here on CH.com or directly to me via PMs, Skype, or Email with positive results of either a significant reduction in the frequency and intensity of their CH or gone into a CH PF remission is 23 out of 29 or 79.3%...

The most common comment is PF sleep...  followed second by an uplift in energy...

I've not kept track of how closely folks are following the regimen I use, but it appears the vitamin D3 dosing is between 5,000 and 15,000 I.U.

Until we can get a formal, gold standard (randomized, crossover, double blind, placebo controlled) study funded, started, and completed with published results, all we're doing at this point is collate anecdotal information. 

Having said that, what's significant at this point even as an informal survey is the efficacy is far greater than what might be expected from the highest possible placebo effect, and that there have not been any adverse events reported...

That makes this is a very positive first step as it provides me with the kind of data I need to go out dialing for dollars to fund such a study.

I hope you had good luck with your doctor today.

Take care,

V/R, Batch

Hey Lance,

Thanks for the update.  As a chronic type with heavy hitting cycles that caused my abort times with oxygen therapy to jump from 3 to 4 minutes up to 12 to 14 minutes, my initial motivation for using this regimen was to make my CH more manageable with oxygen therapy at flow rates that support hyperventilation, lower the abort times and cut down on the number of hits while sleeping.  Going PF was a total surprise.  I went from a consistent 4 hits a night to PF in 48 hours..

You do bring up another good point that I commented on in the thread on warfarin that may be worth repeating.  Essentially, there is no silver bullet...  Having said that, there appear to be a number of things we can do to make our CH more manageable if we take a more holistic approach.

The first is not to treat our CH in isolation.  In other words, it's becoming clear that diet can play a role.  A diet high in acid forming foods can bias our systemic/arterial pH to the lower end of the normal range and that may be all it takes to push us into a heavy hitting high cycle.

Accordingly, a change in diet to eat more alkaline forming food types listed in a link in my post above to Knuckles might be all it takes to make this regimen even more effective.

Comorbid disorders can also impact CH medications including oxygen therapy making them less effective.  In working with the heavy hitting CH'ers who have not had a significant improvement with this anti-inflammatory regimen after more than a week, we found they all share one or more of the same comorbidities.

These comorbid disorders include cardiac, renal, and thyroid insufficiencies as well as COPD and diabetes.  Moreover, these same CH'ers also tend to be refractory to other CH preventatives and abortives.

There appears to be concurrence on at least some of the comorbid disorders we noted as a multivariate analysis conducted by Zidverc–Trajkovi JJ et al. and reported in an article titled: Comorbidities in cluster headache and migraine, Acta Neurologica Belgica, 04/18/2011, that chronic sinusitis and diabetes mellitus, adjusted by gender, age and duration of headache, are more frequently associated with cluster headache(CH) than with migraine.

The interesting thing about the comorbid disorders we've noted with respect to the anti-inflammatory regimen is they all have the potential to lower arterial pH.

The sinusitis reported by Zidverc–Trajkovi JJ et al. is also of interest as it may be an indication of an inflammatory reaction that could easily encompass the sphenopalatine ganglion located in the back of the nasal passage and possibly spread to the trigeminal ganglion as the two nerve bundles are directly connected to each other by a branch of the trigeminal nerve.

What all this points out to me, is that as cluster headache sufferers, we need to make sure our PCPs and neurologists take a more holistic approach in treating our disorder to include looking for other comorbid disorders that can easily prevent CH medications from working effectively. 

In short, if we have one of these comorbid disorders, they need to be treated at the same time as our CH or it's entirely possible the medications prescribed for our CH will not have the desired therapeutic effect.  Some food for thought...

Take care,

V/R, Batch