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Cluster Headache Help and Support >> Cluster Headache Specific >> initial diagnosis
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Message started by poconokevin on Jul 8th, 2015 at 7:49am

Title: initial diagnosis
Post by poconokevin on Jul 8th, 2015 at 7:49am
Hey folks,
Yesterday, had my appt. with my doctor. Talked about the headaches, went over bloodwork, urynalysis, etc...pretty good all around. 2 things of note, low vitamin D, high WBC. He says take 5000u vitamin D. Then, he sends me down the road to a neurologist, and since I showed up with a good headache, he gives me an injection in the brow area, nerve block and numbing. We talk for a few more minutes, he says classic cluster headache symptoms. I still woke up around 1am with a pretty good headache, but feel pretty good this morning.
Anyway, since I believe I am coming out of this cycle, (hope), I made an appointment for the month before my next cycle should start. At that time, the neuro will do a more in depth interview and talk to me about my options.
So from all the pros here, does it sound like I am headed in the right direction? Forgot to mention, no insurance at the moment, so I got that going for me.
Thanks for reading, and any thoughts appreciated. Also, thanks for the pm's a few people sent.....poconokevin

Title: Re: initial diagnosis
Post by AussieBrian on Jul 8th, 2015 at 8:35am
Mate, you're heading in the right direction while you continue pushing for answers, while you continue asking questions, and while continue learning everything you can about the monsters we must live with.

You're not alone, either, because we truly understand.

And we care.

Title: Re: initial diagnosis
Post by BarbaraD on Jul 8th, 2015 at 9:55am
Ok, here's a little advice. Check in with Batch and get on the D3 "regimen" right now and stay on it. If you do it "right" you may just not have your next cycle. It's worth a try and not that expensive.

I've been chronic since '97 and since getting on the D3 regimen have been PF almost 2 years now. But it's not something you get on and off of... it's a commitment and you STAY on it.

And read this board... there are a lot of us who've been here for a LONG time and are here to help. Ask questions - don't just come when you're hurting. Stay when you're not. Pay it forward so to speak.. Help others when you can.

Ok, Granny has spoken.. PF days to you.. :-*

Title: Re: initial diagnosis
Post by Batch on Jul 8th, 2015 at 2:09pm
Hey Kevin,

Thanks for the back brief.  It's encouraging to hear your PCP checked your serum 25(OH)D concentration, found it low and suggested 5,000 IU/day vitamin D3.  You might want to ask what the actual 25(OH)D results were.  The normal reference range for the 25(OH)D lab test is 30 to 100 ng/mL.  CH'ers need to keep their serum 25(OH)D concentration up around 80 ng/mL to remain CH pain free.

If you're 25(OH)D was less than 30 ng/mL, you might want to consider a vitamin D3 loading dose of 500,000 IU of vitamin D3 spread over two weeks.  That comes to less than an average of 40,000 IU/day.

Doing the math, you can take 50,000 IU/day for 7 days (350,000 IU) and 15,000 IU/day for 10 days (150,000 IU).  This should result in an average gain of 50 ng/mL over your starting serum concentration. 

At the end of this loading schedule, drop back to a maintenance dose of 10,000 IU/day plus Omega-3 fish oil and the cofactors and stay on that regimen year round...  It comes to 35 cents a day...  50 cents a day if you add the Super K...

The following table represents the latest list of anti-inflammatory regimen supplements and doses:

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I've found the following supplements shown by brand in the photo below are formulated with most of the supplements we need.  I buy them at Costco, but you should be able to find similar formulations at most Vitamin Shoppes, supermarkets, Wall-Mart or over the Internet:

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Take care and please keep us posted.

V/R, Batch

Title: Re: initial diagnosis
Post by poconokevin on Jul 8th, 2015 at 6:33pm
Picked up the D3 today....level was 25.2, listed as insufficient.  Going to continue to read here, and try to contribute.  Thanks Batch for the personal attention. I am going to try to follow the "batchrules". I actually called my docs office prior to my visit and asked that he check the 25(oh)d,  based on what you folks are saying here.
Poconokevin

Title: Re: initial diagnosis
Post by Batch on Jul 8th, 2015 at 8:21pm
Kevin,

You've made a wise decision... Good on you... 

V/R, Batch

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