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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 450640 times)
Batch
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Re: 123 Days PF And I Think I know Why
Reply #2350 - Oct 21st, 2015 at 8:18am  
Clarkster,

Welcome to CH.com and the anti-inflammatory regimen...  Stick with this regimen year round and everything starts getting better.

I also want to thank you for the kind words... in a great first post.  It's experiences like yours that help convince more CH'ers to start this regimen... 

Educating your neurologists on the efficacy of this regimen is also very important...  Who knows... he might just suggest this regimen to the next CH'er who walks into his office...

Thanks again, take care and please keep us posted.

V/R, Batch
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« Last Edit: Oct 21st, 2015 at 8:21am 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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slacker032
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Re: 123 Days PF And I Think I know Why
Reply #2351 - Oct 21st, 2015 at 10:33am  
Very happy for you Clarkster.
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Mike NZ
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Re: 123 Days PF And I Think I know Why
Reply #2352 - Oct 22nd, 2015 at 1:09am  
Great news Clarkster.

This is the sort of tears we like to see and not those from the pain of CH. Long may you be pain free.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2353 - Oct 23rd, 2015 at 8:44am  
Now is a good time for a request to CH'ers who have been taking the anti-inflammatory regimen to prevent their CH for at least a month to see their PCP or neurologist for the 25(OH)D lab test.  Once you have the results in hand, please take the online survey.

I am also interested to know if you took Benadryl (Diphenhydramine) while taking the anti-inflammatory regimen and what affect it had on the frequency, severity and duration of your CH.  There's a comments section in the survey where you can explain this.

To start this survey, click on the following link:

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The reason for taking this survey is very important.  We can't convince neurologists and headache specialists to suggest the anti-inflammatory regimen to their patients with CH unless there is compelling medical evidence. 

The results of this survey provide that evidence.  Moreover, the statistical power of that evidence is based on the number of completed surveys or sample size.  In simple terms, if 100 completed surveys is good, 200 to 300 completed surveys is even better.  The greater the sample size the more statistical power.

As of 15 April 2015, 280 participants started the online survey. 156 CH'ers completed the required questions and submitted so we're closing in on the near term goal of 200 completed surveys.

For the CH'ers who started this survey but didn't complete it or hit the submit button, you should be able to use the link above to go back into your survey to complete and submit.

Many of you have indicated you wanted to "Pay it Forward" after discovering the benefits of taking the anti-inflammatory regimen...  Taking this survey is a great way to pay it forward...

Thank all of you for your support.

V/R, Batch
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« Last Edit: Oct 23rd, 2015 at 8:48am 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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Re: 123 Days PF And I Think I know Why
Reply #2354 - Oct 23rd, 2015 at 10:51am  
Batch - Thought I completed the survey awhile back but wasn't sure so I filled it out just in case.
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Re: 123 Days PF And I Think I know Why
Reply #2355 - Oct 27th, 2015 at 5:34pm  
Batch

I wanted to give you some feedback with my first run with the D3 treatment.  I haven't been to the doc yet to get blood work, but I will follow up with your survey once I do.

A quick history of my situation.

I found this site 10+ years ago and it was a savior because it helped form the CH diagnosis with my PCP.  I had been dealing with the issue, deemed as migraine's by all the docs, for 10 years prior to finding this site.  I'm episodic and deal with the beast for 5-6 months every 2-3 years.  I've gone thru a variety of meds.  Now I stay on Verapamil all the time and use O2 (thanks to this site) to abort as well as triptans if o2 is not around.  My cycle typically ramps up and eventually I have 1 or 2 rounds of prednisone before it fades away.

I'm about 2 months into my current cycle.  Once I hit the point of multiple daily attacks (4-6), I start my first pred taper.  This time, the taper re-ignited an issue with my eye called CSR, so I had to stop.  I came limping back to this site found your thread.

It took some time sifting thru all the responses to get to the best cocktail as it seems to have evolved over the years.  This past Saturday, I picked up D3, Calcium Citrate, and Fish Oil.  I took 40,000iu D3 and the bottle recommended dose of Cal Citrate and Fish Oil.  I did the same on Sunday and then tapered down to 20,000iu yesterday and today.  My pred taper ended the prior Sunday.  I wasn't getting attacks while on the pred, but I started get an 11am hit the day after my last pred dose.  The same 11am hit lasted thru Saturday when I started the D3.  Sunday I got a light hit at 6pm that went away with 2-3 mins of o2.

Yesterday and today, I've had no hits and no shadows at all.  I don't want to jump the gun, but I feel different.  We all know the feeling of the beast in the background, but right now it's not there.  I'll follow up with updates but so far so good.

First, I want to say thanks for doing this research and seeing this through.  It takes a special person to keep this momentum going after they have been freed of the pain themselves. 

I likely won't have a chance to get to my doc for a few weeks due to craziness on the work schedule.  I was planning on working my way down to a daily 10,000iu dose with the weekly 50,000iu load dose and keeping on the Calcium Citrate and Fish Oil.  I've also been doing a glass of lemonade with the doses.  Does this sound about right?

Sorry for this long-winded post.  You seem to be interested in detailed feedback, so I figured it was the least I could do with all the work you put in.

Thanks again

Frank
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2356 - Oct 28th, 2015 at 3:35am  
Frank,

Thanks for the feedback.  Off hand, I'd say you're on the mend and the anti-inflammatory regimen is doing its thing to prevent your CH.  The following chart from the online survey illustrates response times...

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I keep the latest version of this regimen as well as the latest results from the online survey of CH'ers taking this regimen on page one of the following link:

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You'll need to scroll down a bit...

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Nov 1st, 2015 at 2:42pm 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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Melissa
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Re: 123 Days PF And I Think I know Why
Reply #2357 - Oct 31st, 2015 at 12:38pm  
Since starting D3 four days ago (I'm on the minimum amount); Thursday night I only had one attack instead of three, and last night no attacks at all. Only thing is I woke this morning with what felt like a raging sinus infection (we have a big storm system moving through), so I took an oil of oregano and an Aleve. Feeling much better now! I will not say anything good or bad D3's efficiency though until I have 5 PF nights in a row, THEN I am hoping to be able to say it works for me! <crossing fingers>
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Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way.  ~Bernie S. Siegel
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Re: 123 Days PF And I Think I know Why
Reply #2358 - Oct 31st, 2015 at 1:31pm  
Great to hear, Melissa.  Keep at it!
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Melissa
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Re: 123 Days PF And I Think I know Why
Reply #2359 - Oct 31st, 2015 at 10:20pm  
slacker032 wrote on Oct 31st, 2015 at 1:31pm:
Great to hear, Melissa.  Keep at it!

Thank you so much! I'm trying! Smiley
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Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way.  ~Bernie S. Siegel
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blacklab
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Re: 123 Days PF And I Think I know Why
Reply #2360 - Nov 1st, 2015 at 12:39am  
Melissa,  good luck with The D3 !
          I hope you continue to improve.  As a footnote, I hope your one of the ones it works for immediately, for me, it took quite some months !  Stay on it for life, at the least its very healthy for you and like most who start it during a cycle, find that its the next cycle where the benefits truly shine thru.....  all the best

colin
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Melissa
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Re: 123 Days PF And I Think I know Why
Reply #2361 - Nov 1st, 2015 at 8:13am  
Thank you, Colin. Smiley


I woke with two attacks last night that I killed within 10 min. with O2, but I'm not giving up! I will give it time to work. Plus, I've noticed my head does feel better in between the pain time.
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Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way.  ~Bernie S. Siegel
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slacker032
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Re: 123 Days PF And I Think I know Why
Reply #2362 - Nov 1st, 2015 at 10:42am  
Melissa, have you tried adding Benadryl to your regimen?  Check out this post by Batch:

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« Last Edit: Nov 1st, 2015 at 10:43am by slacker032 »  
 
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Melissa
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Re: 123 Days PF And I Think I know Why
Reply #2363 - Nov 1st, 2015 at 12:25pm  
slacker032 wrote on Nov 1st, 2015 at 10:42am:
Melissa, have you tried adding Benadryl to your regimen?  Check out this post by Batch:

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

I won't take benedryl, it always makes me feel like I got hit by a train since I am med sensitive. It's alright, I am doing ok so far. The hits I had were killed at 6 min. and 9 min. respectively.
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Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way.  ~Bernie S. Siegel
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Chuffy
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Re: 123 Days PF And I Think I know Why
Reply #2364 - Nov 4th, 2015 at 7:37am  
Seeing as it's coming up to 3 years since my last attack, thanks of course to the D3 regimen, my O2 supplier is picking up my dusty neglected tanks next week. Quite a moment, hope it doesn't jinx anything. Hat's off as always to you Batch! Smiley
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Re: 123 Days PF And I Think I know Why
Reply #2365 - Nov 4th, 2015 at 8:41pm  
Hello All, I'm ech. Ive started this D3 deal 3 days ago. I'm getting about 7-8 hits, but Oxygen I received yesterday is helping to cut em short. I've gone thru just over 2 E tanks in 24 hrs. Shadows seem to be dissipating, but still present. You know how it is ya don't want to proclaim victory just yet with so many setbacks in the past. Hoping the D3 will work its magic for me. Appreciate the regimen batch.
SemperFi
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2366 - Nov 5th, 2015 at 1:55am  
UhrrrraH... ECH

Here's to an Early 240th Happy Birthday to the United States Marine Corps... and you too!!!  Have one on me at Tun Tavern.

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Hang tough Devil Dog...  God loves a Marine... so it will get better as long as you stick with this regimen...  If you're not PF by the USMC Birthday, start taking Benadryl (Diphenhydramine hydrochlorid), 25 mg at bed time...  No joy after two days... try 50 mg for another five nights.

See your local quack for details... or PM me...

Semper Fi

V/R, Batch
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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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Re: 123 Days PF And I Think I know Why
Reply #2367 - Nov 5th, 2015 at 4:45am  
Chuffy wrote on Nov 4th, 2015 at 7:37am:
Seeing as it's coming up to 3 years since my last attack, thanks of course to the D3 regimen, my O2 supplier is picking up my dusty neglected tanks next week. Quite a moment, hope it doesn't jinx anything. Hat's off as always to you Batch! Smiley


It took me just over 3 years of being CH pain free before I returned my O2, although I've still got two regulators plus masks, just in case...
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Re: 123 Days PF And I Think I know Why
Reply #2368 - Nov 5th, 2015 at 5:48am  
Thanks batch, A Marine will never give up. May have thought about it briefly, but I'm all about defeating this beast one battle at a time. Thanks for The goal date of the USMC Birthday on Nov 10, The Corp will be 240 years. I hadn't thought of it till you mentioned it. Caught up in my mind at the moment.
Not sure about all the vitamins I'm taking so heres a pic.
Cluster02 mask arrives today.  Cheesy
Thanks for the support. And batch, God loves a batch of good deeds done for the benefit of others. I salute you Sir. Amen.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2369 - Nov 6th, 2015 at 12:37am  
Hey Chuffy,

Thanks for the feed back...  I love long term success stories with the anti-inflammatory regimen like yours...  Please shoot me a PM so we can cover what's been happening since Joyce and I met with you in Seattle...

Take care,

V/R, Batch
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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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Re: 123 Days PF And I Think I know Why
Reply #2370 - Nov 27th, 2015 at 1:59pm  
Hi all, Baer is back in cycle after a three and a half year remission.  Started, as is typical, around the time change late October. He has been taking the D3 regime diligently since April 5, 2012 which we are convinced has kept this bastard at bay for so long.

This current cycle is also proof that the regime is working because this has so far been the LIGHTEST one ever.  He has several days in between headaches and when he does have them it is just one or two during a 24 hour period.  He has had three thus far which required O2 to put it to rest in a few minutes.  Only one of these occurred during the night so he has been getting plenty of rest. 

Having just read the updates on the D3 regime, he will be adding 50B and the multi vitamin. 

I am so very encouraged by this development and we are both happy that he will get through this cycle without excruciating pain.  Thank you Batch and to all who have been so supportive through the years.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2371 - Nov 28th, 2015 at 4:48pm  
Hey Debpa,

Thanks for the update... The vitamin B50 will help, but I suspect some Benadryl (Dipehnhydramine) will help even more.

It's quite possible Baer is having an allergic reaction... These can be sub-clinical, i.e., no obvious or outward indications...  but the allergic reaction is still there.

As a first-generation antihistamine, Benadryl has the capacity to pass through the blood brain barrier to block histamine receptors on neurons within the brain and in particular, the hypothalamus and trigeminal ganglia.  A 25 mg Benadryl tablet every 12 hours should work wonders in getting Baer back completely pain free.

Be sure not to let him drive as Benadryl will make him drowsy...  If he needs to drive during the day, have him take two 25 mg tablets of Benadryl when he's home for the day.

If there's no response to the Benadryl after 48 hours, it might be wise to have Baer check with his PCP as he may have a low grade infection that's sucking up available vitamin D3 leaving too little to prevent his CH.

Take care and please keep us posted.

V/R, Batch
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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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Re: 123 Days PF And I Think I know Why
Reply #2372 - Dec 9th, 2015 at 11:09am  
Hey can somebody please post a link to the most current D3 regimen with all the cofactors? I think it has changed since I last looked. Thanks.

Lbh
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Re: 123 Days PF And I Think I know Why
Reply #2373 - Dec 26th, 2015 at 5:50pm  
lbh wrote on Dec 9th, 2015 at 11:09am:
Hey can somebody please post a link to the most current D3 regimen with all the cofactors? I think it has changed since I last looked. Thanks.

Lbh




Supplement Dose

Vitamin D3 (Cholecalciferol)
10,000 IU/day (Adjust as needed to keep serum 25(OH)D near 80 ng/mL)

Omega 3 Fish Oil
1000 to 2400 mg/day (Minimum of EPA 360 mg/day, DHA 240 mg/day)

Calcium *
220 to 500 mg/day

Magnesium
400 - 600 mg/day (magnesium chloride, glycinate, citrate or oxide)

Vitamin K2 (MK-4 & MK-7)
MK-4 1000 mcg/day, MK-7 200 mcg/day (MK-7 preferred due to half-life)

Vitamin A (Retinol) *
900 mcg (3,000 IU) for men, 700 mcg (2,333 IU) for women (Maximum Dose)

Vitamin B 50
3 month course, after that the 7 B vitamins in the Mature Multi will be sufficient

Zinc *
10 mg/day

Boron *
1 mg/day

* Included in the Mature Multi in sufficient quantity

You might consider sending a PM request to Batch for his recently published detailed pdf. Good luck Wink

-Gregg in Las Vegas
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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
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Re: 123 Days PF And I Think I know Why
Reply #2374 - Jan 4th, 2016 at 12:30am  
Hi Batch!

Here's a recap and a follow up.

Got my first classic cluster headaches in Feb 2015.  The pressure in my head was so great at all times that I had to stay upright, even during sleeping.  Got major hits at 1am, 4am, 6am.  Slept 5 hours a day, sitting up, for a week.

Started the Batch D3 regime at the start of the second week.  My head pressure was gone the first night!  But I still got the 1am, 4am, 6am hits, with half intensity.

Two days later I went to bed at 11pm and woke up a 9am the next day!!!  No headaches.  WOW!

My eyes watered every day at 10pm and I had a few nagging pain shadows during the day that lasted three weeks.  After that 100%, pain free.

So, I'm at around 10 months pain free!

A light shadow will come back if I -
1. Miss the regimen for 2-3 days.
2. Drink wheat beer, home made brewery beer, or tequila.
3. Drink a lot of sugar with any alcohol.  Like jack and cokes.

Thanks again Batch and you have a Happy New Year!!!! Smiley Smiley Smiley
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« Last Edit: Jan 4th, 2016 at 12:32am by MiRose »  
 
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