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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3708 Bremerton, WA Gender:	Re: 123 Days PF And I Think I know Why Reply #1675 - Jan 29^th, 2014 at 7:21am Hey Andy, Great news... The odds are in your favor you'll continue the PF string as long as you stay on this regimen. Take care, V/R, Batch
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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: 123 Days PF And I Think I know Why Reply #1676 - Jan 29^th, 2014 at 10:12am Hey Andy, that's great news, and it should get even better. Delighted that you are also off the drugs and not experiencing their sometimes nasty side effects. All the best
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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: 123 Days PF And I Think I know Why Reply #1677 - Jan 29^th, 2014 at 10:24am survey completed
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sue_g CH.com Junior Offline I love YaBB 1G - SP1! Posts: 76 x0\|Gananoque\|Canada\|\|0\|0\|ON,Ontario Gender:	Re: 123 Days PF And I Think I know Why Reply #1678 - Jan 29^th, 2014 at 10:38am me too Have a good day all! pfw's!
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1679 - Jan 29^th, 2014 at 11:59pm

Thierry, Sue,

Thanks to the both of you for completing the survey. There's strength in numbers when it comes to survey's like this on orphan disorders.

The more completed surveys, one way or the other by the end of March, with respect to efficacy of this regimen, the better.

I'll be making a poster presentation of the survey results at the American Academy of Neurology 2014 Annual Meeting in late April in Philadelphia.

The additional survey entries will strengthen the empirical evidence needed to convince neurologists and headache specialists to give the anti-inflammatory regimen a try with their cluster headache patients.

Thanks again.

V/R, Batch

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blacklab

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Re: 123 Days PF And I Think I know Why
Reply #1680 - Jan 30^th, 2014 at 1:18am

hi batch, thankyou for the survey and 02 info.
I presented it to my doctor and she tucked it in her bag and said I want to take my time and read it !
well results. cholestriol, I was down 3 points to 6.1, but my bad was up and my good was down !! she told me to double up on fish oil, which I have been and test again in 3 months.
the important one, I was 200 nmol ( buga)
I was 194 nmol 4 months ago and ive consistently averaged 15,000 vit per day.
ive lifted my dosage up to 20,000 for the previous 3 days, after my blood test, but im feeling like I should take a loading of 50,000 and continue 20,000 for another 3 or 4 days, go max dose on my magnesium citrate, leave out the calcium citrate, I know this will elevate my d levels, but how much batch would you say a week of 20 plus the 50 loading would lift it up ? maybe I need to try a higher level to see if it busts this cycle rearing its head at the moment ? worth a try ? oh, my calcium count was 2.3.
the doctor actually said to me, I don't have an answer on adjusting the regime to help you, but QUOTE " this guy peter would be the one to ask on the elevating my level higher to see what happens" hows that batch lol
she was happy with my calcium score, and was amazed that I was taking on average 15,000 vit d aday for 4 months and only risen by 6 nmol !!
she's a believer !!
so im going to titrate up the 50,000 tonight batch, as this post will arrive to u after ive had dinner etc, and stay on 20,000 for another 3 or 4 days, and see what happens.
would love your opinion on it though ??
cheers batch
colin

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TheAndyT

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Love is our resistance...

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North Hollywood, California
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Re: 123 Days PF And I Think I know Why
Reply #1681 - Feb 1^st, 2014 at 1:50am

Well my first neuro appt. didn't go all too well for me. He didn't want to take the time to hear about the D3 regimen or the O2. He just decided to prescribe me a higher dose of 100mg Imitrex and some preventative called Propranolol. I was unable to obtain the meds because they are having trouble with my crappy state insurance, so I am almost certain I will be without meds 'till atleast Monday. I wasn't able to do the 25 (OH) test because the insurance won't cover. I will try to gather up some money to get my own later. It sucks because this is the only neuro I can see around my area that takes my insurance. Otherwise it's $300 for a consultation with another one. I have a second appt. in one month.

On a brighter note.... today was my second day being totally pain free!! It is a beautiful thing! I am starting to believe that this D3 regimen might actually be kicking in after all

For this reason, I am not worried about not having any meds handy, because I simply have no reason to use them lately. Thanks everyone for you continued support and special thanks to Batch for the valuable info and for always being there. I'll be checking in.

-Andy

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« Last Edit: Feb 1^st, 2014 at 1:52am by TheAndyT »

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slacker032

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Re: 123 Days PF And I Think I know Why
Reply #1682 - Feb 1^st, 2014 at 2:29am

TheAndyT wrote on Feb 1^st, 2014 at 1:50am:

Well my first neuro appt. didn't go all too well for me. He didn't want to take the time to hear about the D3 regimen or the O2. He just decided to prescribe me a higher dose of 100mg Imitrex and some preventative called Propranolol. I was unable to obtain the meds because they are having trouble with my crappy state insurance, so I am almost certain I will be without meds 'till atleast Monday. I wasn't able to do the 25 (OH) test because the insurance won't cover. I will try to gather up some money to get my own later. It sucks because this is the only neuro I can see around my area that takes my insurance. Otherwise it's $300 for a consultation with another one. I have a second appt. in one month.

On a brighter note.... today was my second day being totally pain free!! It is a beautiful thing! I am starting to believe that this D3 regimen might actually be kicking in after all

For this reason, I am not worried about not having any meds handy, because I simply have no reason to use them lately. Thanks everyone for you continued support and special thanks to Batch for the valuable info and for always being there. I'll be checking in.

-Andy

Andy,

You can get a 25(OH)D test done via Direct Labs for $53 with the coupon code, DISCOUNT10.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

The lab where they did my blood work is on Vanowen and Sepulveda but there might be one even closer to you.

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« Last Edit: Feb 1^st, 2014 at 4:49am by slacker032 »

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TheAndyT

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Love is our resistance...

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North Hollywood, California
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Re: 123 Days PF And I Think I know Why
Reply #1683 - Feb 1^st, 2014 at 4:44am

Slacker. Thanks a lot for the link. I am on Vanowen and Whitsett, so that lab is the closest to me. I will try to gather some money towards the end of the month to order a test. How exactly does this work? Do I draw my own blood and take it to the lab or do they do it when I go? Hope you are feeling much better!

-Andy

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« Last Edit: Feb 1^st, 2014 at 4:45am by TheAndyT »

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slacker032

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Re: 123 Days PF And I Think I know Why
Reply #1684 - Feb 1^st, 2014 at 4:46am

TheAndyT wrote on Feb 1^st, 2014 at 4:44am:

Slacker. Thanks a lot for the link. I am on Vanowen and Whitsett, so that lab is the closest to me. I will try to put gather some money towards the end of the month to order a test. How exactly does this work? Do I draw my own blood and take it to the lab or do they do it when I go? Hope you are feeling much better!

-Andy

No, they actually draw your blood there and then email you a few days later when your results are ready on their website.

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« Last Edit: Feb 1^st, 2014 at 4:47am by slacker032 »

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blacklab

Ex Member

Re: 123 Days PF And I Think I know Why
Reply #1685 - Feb 1^st, 2014 at 8:14am

well,
as per last post, nmol 200, and shadows all afternoon, with 2-3 kip 5-6 hit every nite.
have done 6 days of 450mg magnesium, 3000, fish oil no calcium, 20,000 vit d daily with a 50,000 one of.
last nite, slept thru p/f for the first time in a week and a half, and not even a hint of a shadow today !!!!
will take another 20,000 vit d tomorrow nite and if im still p/f I will go back to my normal regime maintenance of 10,000 vit d.
seems as though mu p/f level is what ever it elevated me to by increasing the vit d for a week, as above.
cautiously, YAHOO
if I remain pain free, i'll test again in 4-5 weeks and hopefully that is my target or optimum level to be at.
was really starting to feel like ground hog day, January being my worst ever time, this time last year.......
can it be this simple ??? Undecided

regards
colin

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: 123 Days PF And I Think I know Why Reply #1686 - Feb 1^st, 2014 at 9:25am can it be this simple ??? My wife and I keep asking this question. After over 30 years of watching me suffer these stupid things, I'm over 3.5 years pain free.......with just these stupid vitamins!!! I'm still just in awe. Joe
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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: 123 Days PF And I Think I know Why
Reply #1687 - Feb 1^st, 2014 at 8:27pm

TheAndyT wrote on Feb 1^st, 2014 at 1:50am:

Well my first neuro appt. didn't go all too well for me. He didn't want to take the time to hear about the D3 regimen or the O2. He just decided to prescribe me a higher dose of 100mg Imitrex and some preventative called Propranolol.

Since 100mg Imitrex sounds like it is the pill form of imitrex and propanolol is one of the standard migraine preventives (it works great for my migraines), it sounds as if he is just treating you for migraines and not CH. This probably points to the neuro not having the skills or experience to treat CH properly.

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TheAndyT CH.com Junior Offline Love is our resistance... Posts: 65 North Hollywood, California Gender:	Re: 123 Days PF And I Think I know Why Reply #1688 - Feb 4^th, 2014 at 4:45am Batch, quick question... when buying the 1200mg fish oil, is there a difference or advantage between the 768mg active omega-3 and the 360mg active omega-3?
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1689 - Feb 4^th, 2014 at 6:22am

Hey Andy,

Good question. The anti-inflammatory regimen calls for a minimum of 360 mg/day eicosapentaenoic acid (EPA) and 240 mg/day docosahexaenoic acid (DHA) for a total of 600 mg/day of Omega-3 Polyunsaturated fatty acids (PUFAs).

There are other Omega-3 fatty acids, but EPA and DHA are the two essential fatty acids that experts claim are most beneficial.

Some nutrient producers also list "other Omega-3 fish oils" on the label in addition to the EPA and DHA.

The important point is check the "Serving Size" on the back label that lists all the ingredients that are totaled by serving... That means you may need to take one, two or three liquid softgel capsules to get the total Omega-3 listed on the front label.

Take care,

V/R, Batch

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« Last Edit: Feb 4^th, 2014 at 6:28am by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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TheAndyT CH.com Junior Offline Love is our resistance... Posts: 65 North Hollywood, California Gender:	Re: 123 Days PF And I Think I know Why Reply #1690 - Feb 4^th, 2014 at 9:33pm Thank you for clearing that up for me, Batch. I can now shop for my supplements with confidence. Today would have been my fifth PF day. Oddly enough I got an attack on the first day of taking my preventive med. I think im going to hold off on that med for now. -Andy
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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: 123 Days PF And I Think I know Why Reply #1691 - Feb 4^th, 2014 at 10:28pm Hi TheAndyT, here is a link to a 5 months supply of fish oil for $22.69. It is the omega 3 fish oil Batch has on his regimen (2 softgels/day) Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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TheAndyT CH.com Junior Offline Love is our resistance... Posts: 65 North Hollywood, California Gender:	Re: 123 Days PF And I Think I know Why Reply #1692 - Feb 4^th, 2014 at 11:20pm Thierry, thank you so much. Great deal -Andy
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CHMatt CH.com Junior Offline Posts: 45 Chicago Gender:	Re: 123 Days PF And I Think I know Why Reply #1693 - Feb 5^th, 2014 at 10:42am Amazon has the same thing for $9.37.
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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: 123 Days PF And I Think I know Why Reply #1694 - Feb 5^th, 2014 at 4:10pm Wow that is cheap, unfortunately the shipping prices to Ireland are prohibitive. the prices on amazon.co.uk are way higher. It looks like i'll have to stick with Iherb, it's still a lot cheaper than buying here in Ireland.
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CHMatt CH.com Junior Offline Posts: 45 Chicago Gender:	Re: 123 Days PF And I Think I know Why Reply #1695 - Feb 5^th, 2014 at 4:40pm Sorry - wasn't paying attention to the details.. However, you should consider taking a trip across the pond and stocking up on our super cheap dietary supplements some time. It's why we have the immigration problems we have...
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erk

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Re: 123 Days PF And I Think I know Why
Reply #1696 - Feb 6^th, 2014 at 5:30pm

hello all,

I thought I'd chime in on my progress with this regimen.
To recap, I went into cycle on Nov.5., which is unusual, typically its Jan. or Feb. starts for me. I had complete blood work done on Nov.8. My 25(oh)D was 74 ng/ml. No other problems found except high trigylecirides.
I decided to follow the d3 load dose protocols and did so for one month. I still continued to get hit 1-3 times a night. They were more easy to abort with ice, energy drink and/or o2 than in previous cycles. Which I attribute to a more alkalizing diet I've been following pretty close. I only used trex a couple times early on in the cycle before I got the o2. Still the disruption of sleep was really getting old.
By the end of Jan. the hits were starting to diminish in intensity, but I wanted to be completly pf. So on jan. 24 I slacked off of the calcium for the a few days to see what would happen. The wake up hits stopped a few days later. Subjectively speaking, its hard to say if this helped or it just stopped on its own. I took a 25(oh)d test also on Jan.24. Level was 123 ng/ml.
I intend to stick with regimen for sure. I just hope to figure out what is keeping me from being pf on it????
Thats my 2 cents.

Best of luck!!!

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CHMatt

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Re: 123 Days PF And I Think I know Why
Reply #1697 - Feb 6^th, 2014 at 7:17pm

Although I don't feel knowledgeable enough to suggest stopping the calcium to other people, not knowing what the long-term results would be with this regimen, my story was similar - on the D3 regimen but it wasn't working (actually seemed to be making things worse), but as soon as I discontinued the calcium supplements the headaches went away. I'm still on verapamil, amitriptyline, and cyproheptadine, but we're tapering my amitriptyline and cyproheptadine (slooooowly, because I've been on those three for 15 years now). I feel confident that for me the calcium supplement was interfering with the verapamil efficacy. Twice since being pain-free I've added back the calcium supplement and both times the headaches returned within 24 hours. The first time I took 1 citracel, the second time only 1/2 citracel, and both times I timed it as carefully as possible to avoid interactions with the verapamil.

I'm sure Batch can speak to the advisability of being on the regimen minus the calcium better than I'm able to, but that's my $.02 worth (where the hell did they put the cents sign on todays keyboards, dammit!?!?! LOL).

Matt

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1698 - Feb 7^th, 2014 at 12:07am

Erk, Matt,

Thank the both of you for your feedback on the calcium supplement. I've gone over data from the online survey and posts here at CH.com. It appears there's a clear correlation between stopping the calcium supplements and a cessation of CH attacks.

There's also a companion correlation as some of these same CH'ers reported an increase in the frequency of their CH after starting the complete regimen.

That said, the total of CH'ers who either reported an up-tic in the frequency of their CH after starting this regimen or who have reported a cessation of their CH after stopping the calcium supplement appears under 10% of the total number of CH'ers taking this regimen.

The 500 mg/day calcium part of this regimen is essentially an insurance policy against loss of bone mineral density. Accordingly, if CH'ers are eating a healthy diet, they're likely taking in adequate calcium from dietary sources, i.e., cheese, other dairy products and dark leafy greens like spinach and kale... so skipping the calcium supplement is likely quite safe...

Given the correlations above, I'll be making some notations regarding the calcium supplements in the anti-inflammatory regimen.

Thanks again... As I've said many times, we're out in front of the neurology community in general on preventing cluster headaches with this regimen. We're also still learning how to make this regimen even more effective. That makes comments like yours valuable to other CH'ers just starting this regimen or having problems making it work.

Take care,

V/R, Batch

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blacklab Ex Member	Re: 123 Days PF And I Think I know Why Reply #1699 - Feb 7^th, 2014 at 11:37pm a little update, still p/f after a week, since I titrated up with 20,000 vitd a day and a one of 50,000 dose back to 15,000 a day with 300mg magnesium 3000mg fish oil, no calcium and a multi vit.
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