Hey guys,

As much as I love you all, I'm not glad to be back on this board!

Seems like I've just entered a new cycle after being painfree for about 4 years. I'm an episodic CH sufferer for about the last 17 years, typically during the beginnings of fall and spring with around 2 years of remission between cycles.

Sucks because I'm coming out of an atypical 4 year painfree period. I thought maybe the beast had decided to retire, but it looks like he was just on sabbatical.

Since 2003ish I've used the standard protocol- prednisone taper, verapamil 480mg/day, sumatriptan injection as an abortive. I've tried O2 and unfortunately it didn't work for me. Kudzu did something but it didn't make me painfree. About 10 years ago, I was able to abort all attacks during one cycle by hyperventilating, but it's worked inconsistently since then. I guess the beast adapted. :-/

I think my cycle is going to be a relatively long one this time because i've had shadows for about a month (with a handful of mid level headaches breaking through). so far, it's similar to my last cycle which lasted 6 months. Yesterday the beast finally went full time with 3 attacks in a 24 hour period. I think it was his formal declaration of war.

Enough babble- just wanted to let you guys know i'm going to give d3 a try. just picked up a nature's way 240 capsule container. I'm going to skip the pred/verap cocktail for now and do the d3 for a week to see if there's any relief. i'll add my data to the d3 thread afterwards.

Keeping my fingers crossed. :D

Welcome back but understand why you didn't want to have to return.

Have you got anything to abort the CHs whilst the vitamin D3 method takes effect?

You mentioned that O2 didn't work for you. Were you using a high flow rate and a non-rebreather mask? For many people who say it didn't work they were using either a wrong mask or a low flow rate. For some 10lpm is enough, others need 15, 25 or higher.

Welcome back! ON the D-3, I assume you're doing the whole "Batch regimen?" It's more then just the D-3, here's a quick link to it.

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

Joe

@Guiseppi

Thanks for the warm welcome and congrats on 3 years PF! Also thank you for the link to the full batch regimen.

Google kept dropping me in the middle of discussions and I got the (mistaken) sense that d3 was the only active component and that batch thought the fish oil was just a complement. I'll head to my local vitamin store today to complete the cocktail with fish oil and the calcium citrate.

@Mike NZ

Thanks for the welcome! For an abortive, I have a stockpile of sumatriptan injections from my last cycle (40+ injections- i was diligent), so i should be ok for now. I did not have a rebreather mask when i tried o2 so I guess I really shouldn't write that it didn't work for me.

I did try 15lpm but without a proper mask I guess I can't say anything. Unfortunately I'm uninsured right now, so I don't have access to o2 for the near future. When my insurance situation changes I'll give it a proper try.

I guess I stop lurking on the board when I'm painfree because somehow it tempts the beast or something stupidly irrational like that. I still find it so odd that this wholly negative thing (beast, this means you) can create such a positive community across the world. :)

Using the wrong type of mask will probably have been enough to stop oxygen working for you, although it isn't impossible to abort with a standard mask (I've done it by putting fingers over the wholes which improves things).

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That has a load of info about using oxygen, equipment, etc.

Some people who don't have access to medical oxygen use welding oxygen instead. This is as pure as medical oxygen as otherwise welds would fail. If you search the forums (search box at top) you'll see posts where people describe what they've done to set this up.

Hey Hoss,

The anti-inflammatory regimen isn't a 1-week thing...  You need to stay on it...  Most of us are on it for life...  There's a lot more health benefits to this regimen than just preventing CH... 

If you like your prostate, heart, lungs, brain, skin, and a lot of other "essential body parts" that all work a lot better and last a lot longer if your vitamin D3 status is up...  see the following link for results of hundreds of studies on vitamin D3:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

You get your vitamin D3 status checked by asking your PCP or neurologist for the lab test for 25(OH)D.  That's the serum level metabolite of vitamin D3 that's used to measure its status.

The normal reference range for 25(OH)D is 30 to 100 ng/mL.  Unfortunately, most physicians will say you're "normal" with 31 ng/mL... That's way off the mark for CH'ers...  We need a target 25(OH)D serum concentration of 85 ng/mL and that will take the average adult 10,000 IU/day vitamin D3 over a 4 to 5-month period to attain.

The results of the online survey indicate 68 of 84 CH'ers (81%) using this regimen who completed the online survey experienced a favorable response.  Their response times are indicated in the following chart:

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As you can see... 75% of the CH'ers with a favorable response had it occur within the first 10 days...  On the other hand... some took as long as two months to achieve a pain free response.

Accordingly, if you bail out of this regimen after just a week... you could easily miss out on the benefits of a very effective and inexpensive preventative... with no real side effects.  Stick with this regimen for at least a month then see your PCP for another lab test for 25(OH)D.  When you have the results, please take the anti-inflammatory survey at the following link:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

You'll also find the latest update to the list of supplements used in the anti-inflammatory regimen at this link.

The next chart illustrates the time 25(OH)D serum concentration response to various doses of vitamin D3:
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The top exponential line indicates the average response to a vitamin D3 dose of 10,000 IU/day.  The green color band indicates the range of 25(OH)D serum concentrations (60 to 110 ng/mL) reported by CH'ers after going pain free while taking the anti-inflammatory regimen.  The running response total of CH'ers who have gone pain free on this regimen is 240 out of 300 (80%).

Most CH'ers, myself included, get impatient  when the beast is hammering away and want CH medications to work as fast as possible.  We've found that an accelerated vitamin D3 dosing schedule increases the 25(OH)D response so we can go pain free a little faster.

The most popular and well tolerated accelerated vitamin D3 dosing schedule is 20,000 IU/day plus a 50,000 IU loading dose once a week.  You can stay on this schedule for a month or until you go pain free, which ever comes first and then drop back to a maintenance dose of 10,000 IU/day vitamin D3.

At the end of a month on this schedule, you'll need to see your PCP or neurologist for another 25(OH)D lab test then adjust your vitamin D3 intake down to a maintenance dose of 10,000 IU/day.  You're looking for a target 25(OH)D serum concentration of 85 ng/mL.

The rational for maintaining this serum concentration of 25(OH)D is simple...  It has a half life of a week to 10 days...  Go without any vitamin D3 for that length of time and you'll fall out of the "Green Zone" and the beast will come after you.

In case you're wondering about vitamin D3 intoxication... the dosing schedules used in this regimen are conservative and very safe as illustrated in the following chart.

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Finally, don't forget to take the rest of this regimen.  The vitamin D3 cofactors are very important part of this regimen.  The 2000 mg/day Omega 3 Fish Oil acts as an anti-inflammatory and also aids in vitamin D3 absorption.  500 mg/day calcium helps maintain bone mineral density (BMD). 

The most important vitamin D3 cofactor is magnesium.  It's essential in vitamin D3 metabolism.  Vitamin D3 at the doses used in this regimen also depletes magnesium so you'll need 400 mg/day to 1000 mg/day.

Magnesium glycinate, magnesium malate or magnesium citrate are the preferred magnesium compounds to take.  All three have a high bioavailability.  Magnesium glycinate has the least laxative effect at higher doses... Magnesium oxide has the lowest bioavailability and can also make you loose as a goose.

Vitamin K2 MK-7 helps direct serum calcium away from soft tissues and arteries towards building BMD.  120 mcg/day should be sufficient.

Vitamin A (retinol) is also essential.  It plays a significant role in the autocrine mode of vitamin D3 metabolism that takes place at the cellular level throughout the body. This is the mode of vitamin D3 metabolism we think is responsible for the cluster headache preventative effect...  A little vitamin A goes a long way.  Don't take more than 900 mcg/day (3,000 IU/day).

Hope this helps...

Take care and please keep us posted.

V/R, Batch

@Batch

Thanks for reposting the info. earlier i received a link to your original post and am trying the basic cocktail.

I'm glad that some people are receiving relief and that yet others are pf (esp the chronics). i'm giving it a week; my personal preference is to go with something that i know will work (pred taper/verap) rather than wait for something that might (while getting hit multiple times per day).

I wanted to add, respectfully, that I hope people not get carried away thinking there's strong evidence of a cure for all/most. To me, the hype around this regimen is starting to feel like kudzu in the early 2000's.

I'm no statistician (I only took one course during my MBA) but there are lots of issues at play here that make this preliminary data 'interesting' or 'worthy of further study' but nowhere close to strong scientific evidence.

A small sample size based on self reported survey data is rarely a recipe for accurate conclusions. Conflating correlation for causation when it comes to 25(OH)d levels is also an issue. if i get started on the supplements industry this post will never end, but suffice it to write that i'm skeptical that the contents of their pills match their labels, so i'm skeptical about dosages being consistent across respondents.

once gain, no disrespect intended, and i'm glad that it's worked for many. i'll post back if i get any relief.