Hello, my name is Vinnie. I've been a clusterhead since 5th grade and didn't know it until a proper full cycle blew out toward the end of this January.

I'd always had a couple of completely debilitating headaches either December or January of almost every year. Always the left side of my head, always a kind of burning intense pain. Difference from this year was their intensity, duration, and how many of them I had. This year, it's made me scream and curse and punch things, scaring the *** out of my poor girlfriend. It's had me in spasms laying in bed. And I go to sleep every night with great fear of what will awake me.

The neurologist I was referred to did not believe my list of symptoms at first. He literally said "I don't think your nose was running enough to classify you as having cluster headache". So, I took a picture during the attack I had the night of the appointment and sent it to him. He put me on Relpax after thatn, and, after trying to get more than "4 pills for a month" (I was in absolute terror that I would not have something to stop these demon headaches), I discovered how disgusting my insurance company really was, only to wind up in the ER because of chest pain, severe shortness of breath, etc. It was only when I called him from the ER that he reluctantly told me over the phone that he would prescribe me o2 (as if this were some afterthought !!!!).

I now have a size M with re-breather sitting next to my bed, rented for $200/mo (!!) until it eats away my deductible, I guess. And I am about to embark on Batch's D3 regimen and WILL report back.

Very quickly (I have to catch a bus) - I am interested in data, analytics, and programming, and would love to collaborate in collation of treatment data to see if we can run any analytics or reports from the data, be it small or large. I was wondering if anyone would like to collaborate. (I'm friendly with perl/python/Java and SQL).

Cheers
Vinnie

I'd suggest that if your neurologist is offering so little help, you should get a new one immediately!  While I don't love mine (his bedside manner leaves much to be desired) he did immediately diagnose me, and get me O2 as an abortive not to mention prescribing meds to try and break this cycle.  It took us several different types of meds (and in different dosages) to get the right combination (Depakote and Verapamil) - but never questioned my sincerity or description of my symptoms or not recommend abortives for the pain.

Anyway, read through this board carefully - there are many stories of what has and hasn't worked.  You aren't alone!

Good luck!

The previous poster has it right...your neuro seems a bit less energetic in treating your CHs than we would like. You do have O2, and it seems the proper equipment, although you don't mention the flow rate. A minimum of 15lpm will help, but a rate of 25lpm+ is better. The relpax is helpful but it takes so long. Injections are much better. And no mention of a preventative? Or introducing steroids into the cycle? You do deserve more and better to battle the beast. Let us know how you get along, OK? God bless. lance

BTW: I meant to add that there is lots and lots of anecdotal data, and some empirical data, to be had just by researching the site. Reading through it will also help you learn more about your CHs.

Welcome to the board, do get busy on the Batch regimen. I'm a 53 year old 35 year episodic that's been cycle free since starting his regimen about 2.5 years ago. As you read peoples success stories you'll realize there's something to this! Hoping it proves the magic for you it's been for me.

Here's a link to sufferer recommended docs in the U.S. Might be worth a look see to see if any are near you:

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Hopefully Batch's Magic will make this unnecassary!

Joe

Hey Vinnie,

Thanks for the headzup you're starting the anti-inflammatory regimen with 10,000 IU/day or more vitamin D3.  See the following link for the complete list of supplements, suggested dosing, dosing strategies, drug interactions and contraindications.

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This thread also contains instructions for taking the online survey as well as some of the results reported by CH'ers taking this regimen.

I've been collating user response data on the anti-inflammatory regimen from multiple sources for over two years.  Most of this data comes from a rough tally of posts taken from the following link indicate the raw efficacy of this regimen is around 80%.

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240 out of 300 CH'ers who started this regimen have reported a significant reduction in the frequency, severity and duration of their CH attacks.  Most of them have experienced a pain free response.

The online survey results to date are consistent with this rough tally. Unfortunately only 61 of the 113 CH'ers who started this survey have answered the essential questions on efficacy.

The basic demographics obtained from this online survey are consistent with the largest survey of sufferers diagnosed with cluster headache conducted by Dr. Todd Rozen and Royce Fishman where 1134 CH'ers participated, so I'm confident these results are valid.   Two of these demographics are shown below:

Anti-Inflammatory Survey  Rozen-Fishman Survey

Men : Women 
           Count  Percent           Count   Percent
Men         86     76%                816    72%
Women    27     24%                318    28%

Episodic : Chronic
           Count  Percent           Count  Percent
Episodic   72      72%               873   67%
Chronic    28      28%               261   23%

Episodic CH'ers using the anti-inflammatory regimen have a slight edge in efficacy but this can easily be attributed to possible confusion between a response to this regimen and end of cycle.

If you take this efficacy data at face value, in concert with data provided by CH'ers on the results of their 25(OH)D lab tests as illustrated by the color bands overlaid on the chart below developed by Dr. Robert Heaney, MD, it is easy to see the relationship between a vitamin D3 insufficiency/deficiency (a 25(OH)D serum concentration < 30 ng/mL) and the incidence of cluster headache is clearly causal and not a coincidence.

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Moreover, this causal relationship is further supported by a cessation of cluster headache symptoms when 25(OH)D serum concentrations are elevated by a vitamin D3 dose of at least 10,000 IU/day into a range of 60 to 110 ng/mL.

Additional reports from chronic CH'ers who stopped taking this regimen and suffered a reoccurrence of cluster headache symptoms after a week to 10 days further supports the validity of this causal relationship.

At this point we're 39 completed surveys away from the magic number 100.  With 100 completed surveys, the data from this survey will have a relative power of 90.  100 completed surveys will also carry sufficient statistical significance to back up the conclusion that the incidence of cluster headache is directly related to a vitamin D3 deficiency or that the cluster headache triggering mechanism is somehow enhanced and enabled by a vitamin D3 deficiency. 

In either case, I think it's safe to say the anti-inflammatory regimen with 10,000 IU/day or more vitamin D3 acts as an effective cluster headache preventative.

When you stop and think about it, this is really no different than the well known medical fact that rickets and osteomalacia are caused by a vitamin D3 deficiency.

So there you have it...  The news about treating our disorder with the anti-inflammatory regimen doesn't get much better than that...

Take care and please keep us posted,

V/R, Batch

Hi Batch, I'm on day 5 of the regimen. I have a blood test scheduled for tomorrow. I will report back findings and take the survey.

Please keep in mind in my case I may have already ended my cycle by the time I started the regimen. Except I still have strong shadows. If I continue to have strong shadows within two days I will up the regimen as described, since this will make 7 days in total.

As I write this I've realized that aside from the subjective assessment of headache improvement, an increase in 25(OH)D as it correlates to decrease in CH frequency/intensity/recurrence is what you're after. I suspect in my case I will need some time to roll through this and .

I'll end by saying I'm extremely grateful for having come across this board early on. It is endlessly fascinating how such seemingly disparate treatments work (oxygen, D3, psilocybin). I think I have a new obsession: trying to figure this out.