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Cluster Headache Help and Support >> Getting to Know Ya >> New Fellow
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Message started by JRBacillus on Feb 25th, 2017 at 1:52am

Title: New Fellow
Post by JRBacillus on Feb 25th, 2017 at 1:52am
Good evening, I'm happy to have found you guys.
I'm not sure exactly what I have.  My doc in college told me they were cluster headaches and put me on verapamil, later that fall, the pain came back and verapamil appeared to do nothing while making me tired, so I quit it. 

I usually get the pain in late Feb to mid March, then against in August to late September.  For each day in the 4 week or so period, I'll get about 2-3 bouts a day and they last about 2-3 hours.  I'll feel something like a just stepped on a nail, but in my eye, then my jaw feels achy.  After about 2 minutes of that, I get what I call satan's ice cream headache. Usually the pain is the worst I've ever had, but rarely it stays like the nail pain.  Afterwords, the left side of my face will feel like I have a sunburn with a spider web feeling too.  Having or even smelling alcohol pretty much gaurentees that I'll have one but usually only in the 2 periods.  This last period has been going on for 2 weeks, and I've added in an extra slot at about 9:30.  My left side around my eye gets a little puffy and bloodshot, but I don't
get much of a runny nose or sweating.

Fortunately, I was put on melatonin (for insomnia, found out it potentially helps later), and I've been taking 3mg a day for basically the last decade.  Oxygen has seemed to be hit or miss, since sometimes the pain stops early.  I'm actually looking for Doctor recommendations to the Denver area too since I want to figure out if I can never experience this again.  I've recently taken to rubbing capsaicin cream  on my face and neck.  So far, it seems like it might possibly be stopping them some of the time.

Anyway, sorry for my life story.
I'm glad to find this place, and I look forward to meeting you.

Title: Re: New Fellow
Post by Batch on Feb 25th, 2017 at 9:21am
Hey JR,

Welcome to CH.com, You've come to the right place.  We know what you're going through and the good news is it doesn't need to be that way... The odds are you’re vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your headaches.   

The results of lab tests for serum 25(OH)D, the metabolite of vitamin D3 that’s used to measure its status, taken before start of treatment by 187 cluster headache sufferers (CHers) with active bouts of cluster headache (CH) are illustrated in the following normal distribution chart.

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As you can see, it’s a no-brainer.  If you have CH, you are very likely vitamin D3 deficient and for sure, with a 95% confidence interval, your serum 25(OH)D concentration is less than 46 ng/mL.  As a CHer, we need to have our serum 25(OH)D concentration up around 80 ng/mL in order to experience a lasting pain free or significantly pain free response.  That's going to take at least 10,000 IU/day vitamin D3, Omega-3 fish oil and the vitamin D3 cofactors.

Download the anti-inflammatory regimen CH preventative treatment protocol at the following link.  It has all the "How To" and why info.  Be sure to take a copy to your PCP or neurologist to discuss when you ask for the suggested labs for your serum 25(OH)D, total calcium and PTH.

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Better than 80% of the CHers who start this regimen respond within the first month.  Some in as little as a day or two.

Take care and please keep us posted.

V/R, Batch

Title: Re: New Fellow
Post by JRBacillus on Feb 25th, 2017 at 1:56pm
That makes sense, when I forget my multivitamin, I am more likely to get one out of period or get an extra one.  Also, my cycles are in the time where I get the least amount of sunlight.

Title: Re: New Fellow
Post by JRBacillus on Mar 8th, 2017 at 10:00pm
I figured I'd give you guys an update.
It's been since the 26th since I've started this protocol, and I must say, I love you all so much!

I had burned all my sick days, and I felt that I was in danger of hurting my career too.  Now I feel safe.

I had two on Sunday, one on Monday, and one on Friday (I forgot the calcium and fish oil). I've had 8 warnings since then, but they just fizzled!  Feeling that happen had to be the most satisfying experience I've had in a long time.  The Monday and Friday headaches were short duration too.  Thank you so much, Batch!  By the way, that's a damn good paper too.   :) :)

Title: Re: New Fellow
Post by Batch on Mar 11th, 2017 at 3:26am
Hey JR,

Thanks for the update.  Looks like you're on the road to recovery.  Stick with this regimen year round... The health benefits over and above preventing your CH are hard to argue.

Take care and please keep us posted.

V/R, Batch

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