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  New CH.com Forum › Cluster Headache Help and Support › Medications,  Treatments,  Therapies › 123 Days PF And I Think I know Why
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123 Days PF And I Think I know Why (Read 533082 times)
Batch
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Re: 123 Days PF And I Think I know Why
Reply #1875 - Jun 13th, 2014 at 9:09pm  
3-Foot,

Thank you for the wonderful news and detailed feedback.  It does sound like you are having a favorable response to the anti-inflammatory regimen.  Based on your response so far, I think it's safe to say your CH symptoms will continue to diminish until you're completely pain free.

The beer and or wine test will work once you've been pain free for a week or two...  Until then, it's the temporary spikes in the serum concentration of 25(OH)D that follow each dose of vitamin D3 that are preventing your CH... 

When you've reached a therapeutic serum concentration of 25(OH)D around 80 ng/mL, that should be at the end of the 4th week on the accelerated dosing schedule, you should be home free... 

After that, a maintenance dose of 10,000 IU/day vitamin D3 plus the rest of this regimen year-round will keep you PF...

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1876 - Jun 17th, 2014 at 3:16pm  
Update I got my test results back from my May 27th test 53 ng/mL. That was after 3 weeks of accelerated D3intake. It has been 3 weeks since. I am pretty pain free right now more allergies headaches than anything but still felt on my cluster side more. This is/ would be close to end of cycle for me. I am going to lower my dose of D3 down to 15Iu a day until after I get back from AK and WA next week and a half and send in another test. If I am not back before that I wish you all well and pray for you all.

Todd
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Marc Everette
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Re: 123 Days PF And I Think I know Why
Reply #1877 - Jun 17th, 2014 at 7:00pm  
Hello All,

Wanted to provide an update. I started the D3 regimine on May 5th. I loaded up with the 50k IUs and took 20k IU per day. Headaches started to go away after a few days. Was PF within 1 week. This  was in conjunction with verapamil and a prednisone taper. I've taken the verapmil and prednisone before however it's never knocked out the headaches this fast. Unfortunately, i didn't get a chance to measure my D3 levels ahead of starting. I stayed at 20k IUs for 6 weeks then reread this string and realized i should have backed off. I dropped down to 10k IUs per day this past Sunday. I also had blood work done last week and requested my VD level be tested. I'll provide that once I have it. This has been truly awesome. Batch keep up the good work. I also plan to keep researching and checking in to see how others are doing.
Batch wrote on May 6th, 2014 at 3:29pm:
Hey Marc,

Welcome aboard CH.com... I wouldn't worry too much about taking the 50,000 IU vitamin D3 loading dose once a week for two weeks on top of a daily intake of 20,000 IU vitamin D3.  The 4-week vitamin D3 loading schedule adds up to a total of 600,000 IU of vitamin D3, or a little over an average of 21,000 IU/day.

The attached study reports the results of a single oral dose of 600,000 IU of vitamin D3 with no adverse effects...  I've two other studies where 500,000 IU vitamin D3 was given in a single oral dose...  Again... no problems.

Take care and please keep us posted on your progress with the anti-inflammatory regimen.

V/R, Batch
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1878 - Jun 17th, 2014 at 8:33pm  
Hey Todd,

Thanks for the update...  It sounds like you've got a good handle on your CH... 

As a side note... How's the fishing?  I'll be flying up to Juneau with a beaver hop out to Pelican, AK in two weeks...

Please keep us posted...

V/R, Batch
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1879 - Jun 17th, 2014 at 8:43pm  
Marc,

Thanks for the wonderful update... I love it when the vitamin D3 loading schedule works that fast...

Your 25(OH)D lab results may come back a little above the target serum concentration at 80 ng/mL, but that shouldn't be a worry since you dropped the dose to 10,000 IU/day.

One last note...  It's best to stay on this regimen year-round...  The other health benefits are hard to ignore and the next CH cycle will be a non-event.

Take care and please keep us posted.

V/R, Batch
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thierry
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Re: 123 Days PF And I Think I know Why
Reply #1880 - Jun 18th, 2014 at 3:28pm  
Batch, is there an end to your knowledge, it seems not.
I always enjoy reading your posts and taking in the knowledge, especially when it points towards living a longer and healthier life.
I haven't had a CH for a long time now, June is usually my worst month and so far...... nothing, not even a shadow. Am sticking to the D3 regimen religiously. 10000iu D3 daily and when i remember, i take a loading dose of 50000 weekly as well as everything else in the regimen.
Thank you, thank you, thank you.
Smiley Smiley Smiley
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1881 - Jun 20th, 2014 at 1:16am  
Theirry,

Thank you for the wonderful update and kind words.  We've learned a lot about preventing CH with the anti-inflammatory regimen yet there remains a lot more we don't really know.

Until we get some real science going with molecular biologists at the helm of a formal gold standard RCT on this regimen, we'll still be in the dark over a confirmed mechanism of action.  Even more importantly, we will not have the medical evidence needed to add this regimen to the standards of care recommended treatments for CH...  and migraine.

Lots to do...  Until then we'll just keep plugging away helping as many CH'ers as possible discover the benefits of vitamin D3 and the rest of the anti-inflammatory regimen in preventing their CH.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1882 - Jun 23rd, 2014 at 9:54pm  
Batch wrote on Jun 13th, 2014 at 9:09pm:
3-Foot,

Thank you for the wonderful news and detailed feedback.  It does sound like you are having a favorable response to the anti-inflammatory regimen.  Based on your response so far, I think it's safe to say your CH symptoms will continue to diminish until you're completely pain free.

The beer and or wine test will work once you've been pain free for a week or two...  Until then, it's the temporary spikes in the serum concentration of 25(OH)D that follow each dose of vitamin D3 that are preventing your CH... 

When you've reached a therapeutic serum concentration of 25(OH)D around 80 ng/mL, that should be at the end of the 4th week on the accelerated dosing schedule, you should be home free... 

After that, a maintenance dose of 10,000 IU/day vitamin D3 plus the rest of this regimen year-round will keep you PF...

Take care and please keep us posted.

V/R, Batch


It's Monday night and I've been 100% pain free since Wednesday Morning. I am at the beginning of Week 3 on the dosage schedule as of today, so I'm taking 15k today. After 10 weeks of the worst cycle I've experienced in my 20 years of battling, it feels pretty F*&%ing great.

Thank You!
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1883 - Jun 24th, 2014 at 1:47pm  
3-Foot,

Thanks for the update and great news...  I know the feeling.

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1884 - Jun 25th, 2014 at 9:04pm  
Batch, I have a quick question...is there a difference between what reads the normal "Omega-3 fish oil" and what reads "Ester-Omega fish oil"? Thanks for your attention.

-Andy
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Re: 123 Days PF And I Think I know Why
Reply #1885 - Jun 25th, 2014 at 9:07pm  
3-foot, Theirry...I am so happy to read on your successes! I hope you remain pain-free forever Smiley
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Re: 123 Days PF And I Think I know Why
Reply #1886 - Jun 26th, 2014 at 6:13pm  
Hi  everyone ,

Just wondering if someone has a good reference of an online safe place to order the vitamins ?

I can't buy them localy here in Portugal so would have to go online .
I checked amazon UK and there are several offers there so If anyone already ordered I would be a bit more confident.....

Thanks for the help !
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1887 - Jun 26th, 2014 at 8:00pm  
Andy,

One of the best answers to your question can be found at the following link. 

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There's a lot of marketing hype over which type of Omega-3 fatty acids is best...  and the leading discriminating factor is bio-availability... followed by after taste...

As the above article states, "any claim of superiority may be premature."

In the mean time I look for two things when I buy supplements like the Omega-3 fatty acids...  The first is a USP logo indicating the product has been tested by an independent organization for purity, strength, and assays for any heavy metals...

The second thing I look for after the USP logo is bang for the buck...  So far Nature Made remains at the top of my list...

Hope this helps.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1888 - Jun 26th, 2014 at 8:03pm  
Olá Miguel,

Amazon and iHerb appear to be your best sources of Internet suppliers of these supplements...

Hope this helps.

Take care, até a vista, and please keep us posted.

V/R, Batch
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« Last Edit: Jun 26th, 2014 at 8:04pm by Batch »  
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Re: 123 Days PF And I Think I know Why
Reply #1889 - Jun 27th, 2014 at 4:19pm  
Batch, that was a very interesting and super helpful link. I thank you, sir for clearing that up for me.

-Andy
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Re: 123 Days PF And I Think I know Why
Reply #1890 - Jun 28th, 2014 at 2:22am  
Hi Miguel, I hope you are well. Like you, I am in Europe (Ireland). I have been successfully taking the Batch regimen for over a year now. I have found that the vitamins are very expensive here so I buy everything from iherb.com       There is a 4 US dollars postage option for packets under 4 pounds weight, also this option is less likely to get stopped by customs (when they catch a packet, they sometimes ad custom taxes that can be quite substantial). If i need to order more than 4 pounds weight worth of stuff i just put in  2 orders. iherb is cheap and reliable.
This is what i buy from iherb:

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D3: 1 softgel/day or more when taking a loading dose

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This vitamin A tablet is 5000iu per tablet, so i take half tablet/day.


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Calcium 2 capsules/day

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Magnesium: 2 tablets/day

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B + C complex: 1 tablet/day

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Zinc: 1 tablet/day

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Fish oil: 2 softgels/day

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Boron: 1 capsule/day


I get the K2 that Batch advises to take at amazon.co.uk

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K2: 1 softgel/day

I try to take all of the above with the biggest meal of the day.


It is possible to reduce the amount of tablets by taking a multi vitamin tablet but i haven't found one that can match the regimen requirements. Batch recommends a multi vitamin from Costco, however that same multi vitamin on amazon.co.uk does not contain the same amounts of the vitamin and other supplements than the one that can be bought at Costco in the US, so i just take the vitamins and other supplemments seperately as per the list above.

All the best
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thierry
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Re: 123 Days PF And I Think I know Why
Reply #1891 - Jun 28th, 2014 at 3:44am  
Hi Batch, I hope you are well.
Things have changed a bit for me over the last week.
Last weekend I went to a 3 days outdoor music festival, this was in the countryside and I spent 3 days in the green grass and forest.
Last monday I started a job that entails spending 11 hours a day in a large field surrounded by forest. (I am working on the making of a film as a set construction manager). I will be in this location for the next 10 weeks. My team and I are building a replica of the town of Dawson, Canada, year 1890.
Since wednesday this week, I have been feeling shadows at night and this morning I woke up with a quite substantial shadow. My nose also feels blocked when i wake in the morning and my girlfriend has also noticed that I snore a bit, which i don't usually do.
Prior to this week, i have not been getting any symptoms of CH at all for a long time.
I am guessing that the return of shadows is due to the presence of pollens and allergens in and around the area where i work. I have a strong feeling that if i don't do something about this straight away, it will develop into a full blown CH cycle (it has happened before in similar circumstances). I really can' t afford to go through this while I am working on a big project like this one. It is hard work, for long days and I need all the sleep I can get at night as well as the need to be fully present while at work with the ability to concentrate.

Would it be right to up my daily D3 intake from 10000iu to 20000iu as well as a weekly loading dose of 50000?
Or i could take 25000iu or 30000iu D3 every day?
I'd love your opinion on this if you don't mind.

Take care and all the best to you and yours Smiley
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Miguel Amaral
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Re: 123 Days PF And I Think I know Why
Reply #1892 - Jun 28th, 2014 at 7:39am  
Thanks Batch & thierry ,

I will follow your advice and order from Iherb ....
One question more, what expiration date do these vitamins normally have ? 
I mean, for example, if I order 360 softgels of D3 they should bring a large expiration range, right ?

Thank you so much for yr help ,
All the best
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thierry
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Re: 123 Days PF And I Think I know Why
Reply #1893 - Jun 28th, 2014 at 12:43pm  
Miguel, the expiration for the supplements on iherb is actually written on their page for the item.

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look on that page in the section on the right hand side called "specifications", you can read the expiration date there. It is december 2016.
Happy days
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thierry
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Re: 123 Days PF And I Think I know Why
Reply #1894 - Jun 29th, 2014 at 7:49am  
Miguel, i just saw on iherb that they do free postage to portugal for packets under 4 pounds weight with international airmail option until and including tomorrow. get your order (s) in.  Smiley
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Re: 123 Days PF And I Think I know Why
Reply #1895 - Jun 29th, 2014 at 2:58pm  
Thanks Thierry ,
just finished placing my order ....

have the blood test scheduled for next Friday and all should be ready to start the regimen on the 2nd week July as soon as the package from Iherb arrives ....
Will share my ongoing experience here later on .....
meanwhile I'm continuing my acupuncture, that in my case has helped me going throw my cycles .....

Thanks for all the help !!!
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Re: 123 Days PF And I Think I know Why
Reply #1896 - Jun 29th, 2014 at 3:38pm  
Hi Miguel, that's great. I also placed an order with i herb, they do free postage to ireland too until tomorrow.
Batch's D3 regimen works for 80% of people who take it. If you need any info, he is the man to talk to. He has helped so many people here, he is a mine of knowledge and seems to always be willing to help and answer questions.
Stick with the regimen, take high doses of D3 at the start to build it up in your body. maybe 20000 iu/day for a week or 2 as well as a weekly loading dose of 50000iu. Then after 2 weeks, reduce the D3 to 10000iu/day as well as a weekly loading dose of 50000iu.
Good luck with it. I hope you'll quickly experience relief. Glad to know that accupuncture works for you, any relief from the beast is good.
D3 is good for many many ailments and will also boost your immune system. Take a look at the vitamin d wiki (link below) and be amazed by the virtues of vitamin D.

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All the best.
Smiley
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1897 - Jun 29th, 2014 at 9:31pm  
Hey Thierry,

The amount of vitamin D3 we need to prevent CH can and will vary depending on other sources of inflammation and other competing consumers of 25(OH)D.  In other words, a maintenance dose of 10,000 IU/day vitamin D3 may be insufficient to maintain a therapeutic level of 25(OH)D if you've had colds, flu, an allergic reaction... An allergic reaction could be sub-clinical, i.e., no apparent symptoms.

Upping your vitamin D3 intake to 20,000 IU/day for a few weeks coupled with a weekly loading dose of 50,000 IU vitamin D3 should do the trick.  Make sure you're taking at least 400 mg/day magnesium...

When the CH symptoms have cleared completely for a couple weeks, drop back to a new maintenance dose of 15,000 IU/day vitamin D3...

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1898 - Jun 30th, 2014 at 2:16am  
Hi Batch, thanks for your helpful reply. I have taken 50000iu D3 for the last 2 days and was shadows free last night. I will do as you say and take 20000iu/day until all symptoms disapear. Will keep you posted.
Thanks Batch
All the best
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Re: 123 Days PF And I Think I know Why
Reply #1899 - Jun 30th, 2014 at 10:01pm  
Hi Batch,

Wanted to provide another update and ask a few questions if you don’t mind.

I got the results from my 25 (OH) D test and after 6 weeks of taking 20000 IUs, plus the 50000 loading dose, my level was 84. The lady that gave me the number just said 84 so I’m assuming it was 84 ng/mL. I was expecting it to be much higher after taking 20000 for 6 weeks. I’ve since dropped to 10000 IUs per day and I haven’t had any CHs but it does feel like I get a baby shadow everyone now and again. That could be my mind playing tricks on me as I’m hesitant to take the O2 tanks back that I’m renting. That said…

1. Would you consider 84 ng/mL low after taking the loading dose and 20000 IUs per day for 6 weeks? Keep in mind I didn’t drop the dosage until after the blood work.

2. Could my body have been that depleted of D3 or I possibly just generate less than most people?

3. Should I consider 15000 of D3 as my maintenance dose?

I’m planning to get tested again now that I’ve dropped to 10000 IUs per week.

Here is the regimen I’m on:

Vitamin D3 = 10,000IU
Omega 3 Fish Oil = 1,500mg
Calcium = 200mg
Magnesium = 350mg
Vitamin K2 = 100 MCG
Vitamin A = 5,000 IU
Vitamin B-50 = 1 tablet
Zinc = 25mg
Boron = 2mg

I’m also taking 240 mg of Verapamil each day. Trying to determine if I can drop the verapamil. Anyway, a couple of other questions:

1. Is it okay to take the verapamil with the regimen? I prefer to take all my pills at once in the morning
2. Can Krill be substituted for the fish oil?
3. Any suggested changes to the regimen?
4. I only get CH once per year, hoping I’m past the cycle. I know you said continue with the regimen but should I ever lay off or detox? I want this to keep working the next time the beast comes.

I look forward to receiving your response and thanks again for the work you are doing for CH sufferers.

Batch wrote on Jun 17th, 2014 at 8:43pm:
Marc,

Thanks for the wonderful update... I love it when the vitamin D3 loading schedule works that fast...

Your 25(OH)D lab results may come back a little above the target serum concentration at 80 ng/mL, but that shouldn't be a worry since you dropped the dose to 10,000 IU/day.

One last note...  It's best to stay on this regimen year-round...  The other health benefits are hard to ignore and the next CH cycle will be a non-event.

Take care and please keep us posted.

V/R, Batch
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