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123 Days PF And I Think I know Why (Read 444463 times)
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Re: 123 Days PF And I Think I know Why
Reply #725 - Apr 23rd, 2012 at 10:59pm
 
Jerry - I've heard stories of MS patients that take 100,000 i.u.'s per day for three months at a time. I don't think you're even CLOSE to toxic levels.
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Re: 123 Days PF And I Think I know Why
Reply #726 - Apr 24th, 2012 at 12:15pm
 
Yeah, Bill, I know that and you know that, but the doc has Linda worried about it.  The time they spend on nutrition is proportional to what they spend on HA's in Med School.

Jerry
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Re: 123 Days PF And I Think I know Why
Reply #727 - Apr 24th, 2012 at 2:57pm
 
Hello everyone, my name is Felipe, I'm a 22 year old student from Chile, and this is my third cycle (2008 and 2010 being the other two). I know I should introduce myself first in the other part of the forum but I thought that, as this concerns batchs formula I should merge both posts in this one.

My first cycle lasted only 2 weeks, getting hit  once a day in the morning. On my second cycle I inmediatly started taking pred taper and that took care of it, for a week... When I begun to lower the doses the beast came back with vengance, two hits a day and very nasty ones... That lasted a month ( I know this is nothing compared with what some of you guys must endure, but that one month broke me real hard emotionally...)

Last week I started a new cycle (1-2 hits per day ranging from 5 to 8 on kip scale) and came here looking for an alternative to the pred taper, as I am afraid of "the vengance".
I found this post and read the first 12 pages of it. I started following Batch's formula and test my luck:
1) first day I used 6000 UI vitD and 3000mg of O3, as I get my hits usually at 9am I waited for the next day....
2)that day i got a mild hit at 11am ( weird) and a second one, more intense and lasting an hour at 10:30pm. I started using 8000 UI that day.
3) third day only got hit once in the morning, moderated, almost an hour long, so I boosted up to 10000 UI
4) fourth day got hit twice: 10:30am and 1:30pm (really weird!) both moderated in intensity, and lasting about 40 min each. I started to lose faith in this formula for me...but mantained the dose 10000 UI and added calcium citrate (350mg) and Mg (75mg) with Zinc (20mg).
5) today, got hit twice 9:45 am and 12:00am, both very mild and responded to oxigen very well, lasting 15-20min each.

Now, this was the last day I wanted to try the formula before starting with the prednisone taper, but. I still don't know what to do. I'm afraid that I havent been taking the vitD in a correct manner ( here in Chile we only have 400UI pills, so I must take 25 pills a day to get 10000UI....thats right...25!) after each attack I feel completely tired and the only thing I can do is sleep for a while, so I have been taking the vitD pills only in the afternoon when I wake up. Maybe I should start taking them before the first hit? About 7:00am?
My neuro recommended me to start with the pred ASAP, but he hasn't read or really know anything about the vitD treatment.
I'm afraid that if I start taking prednisone today I will prolong my cycle and make it worst at the end. I know I will be PF if I start it, but maybe...and just maybe, the cycle is ending with Batch's formula and in a few day I will be PF without the prednisone.

I really need your advice in this one... Should I start with the pred and keep taking the vitD at the same time? Should I wait for it to kick in? Have I been taking the vitD in a correct way? Do you guys know if the pred taper can prolong the cycles or make them worst?

I have complete respect for you guys, this is a horrible condition and it takes a lot, and I mean A LOT to overcome the fear and anxiety it envolves. Your opinion means very much to me.
I am proud to share with you from now on in this beautiful community.

PF days to you all,

Felipe
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Re: 123 Days PF And I Think I know Why
Reply #728 - Apr 24th, 2012 at 4:17pm
 
Hello Felipe,

   Here's one vote for all of the above. Start the Pred taper now and continue the D3+ (can take a while for the D3 to reach a sufficient level to do it's thing). I'd also ask the neuro for a preventative (like verapamil or lithium) to start immediately (the pred taper should buy time for these to build up in your system).

   The D3 is working for me, but it took a while to get PF. And I also saw the variations in my CH during the first week on the D3 (stopped getting my daily 3AM wake-up call, but was getting hit at other times of day I normally wouldn't and varying in severity).

   Stick with it (25 is alot...at least they're small), but don't give up on the other treatments. I think the idea here is to be PF as soon as possible and for as long as possible.

   Keep reading the boards and asking questions. There's alot of information here...

-dvb-
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« Last Edit: Apr 24th, 2012 at 4:29pm by -dvb- »  
 
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Re: 123 Days PF And I Think I know Why
Reply #729 - Apr 24th, 2012 at 4:40pm
 
Felipe
Same story in Norway: 400 IU D3 is max.  Make sure you take them with food, preferably some fatty food.  You should up Mg and Ca to 500mg.
Don't lose faith, be a scientist Smiley

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Re: 123 Days PF And I Think I know Why
Reply #730 - Apr 24th, 2012 at 5:35pm
 
Thanks for answering so promptly! I will keep taking my 25 little pills, up my Ca to 600, and see how it goes tomorrow morning. If I get hit once more I'll start the pred taper and continue anyways with the D3+ treatment.
I'll post as soon as I notice any changes.
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Re: 123 Days PF And I Think I know Why
Reply #731 - Apr 24th, 2012 at 6:54pm
 
Felipe,

I've been collecting data on response times for the anti-inflammatory regimen from here at CH.com and also from an online survey of CH'ers using this regimen. 

Response times to a significant reduction in the frequency and severity of CH or going pain free range from 12 hours to two weeks with a handful taking up to 30 days.  The average is a little less than a week and it appears that the 25(OH)D level is a factor.

Vitamin D3 won't affect your prednisone taper, but there are some studies that suggest prednisone will slow the metabolism of vitamin D3 through 25(OH)D3 and into 1,25(OH)2D3, the active metabolite...

Having said that, the decrease in serum 25(OH)D was small, and most of these studies centered around glucocorticoid-induced osteoporosis with the vitamin D3 doses involved ranging from 400 to 600 IU/day.

Accordingly, as long as you're taking 10,000 IU/day vitamin D3... the prednisone taper should not pose too much of a problem.

Regarding your present 400 I.U. vitamin D3 capsules...  You can order the 5000 IU liquid softgel capsules over the Internet from a number of sourced. 

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The above link should work.

As it appears you are starting to respond to this regimen, you can also up the dose of vitamin D3 from 10,000 IU/day to 15,000 or 20,000 IU/day.  This will help speed up the process of building 25(OH)D3 reserves and that should also increase serum levels of the active metabolite 1,25,(OH)2D3.

Splitting the dose so you take half in the morning and half before bed time might also help.

Have you seen your doctor for a lab test for 25(OH)D?

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 #732 - Apr 24th, 2012 at 11:33pm
 
Felipe,

Don't forget the magnesium. It an important co factor
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Re: 123 Days PF And I Think I know Why
Reply #733 - Apr 25th, 2012 at 11:03am
 
Hey Everyone,

It's been a few weeks since I started my D3/Omega3/Calcium and unfortunately, I haven't seen the results I had hoped for just yet.  Definitely not giving up but was hoping to get some addtional advice.  I'm wondering if I need to increase the D3 dosage.  I'm 6'10" and about 240lbs so just wondering if I am above the height / weight for the 10,000IU dosage. 

I've been chronic for 11 years now and one thing I've learned is that my CH have a mind of their own.  I generally get them at the same time each day but they can change any time and shift me to a new cycle or a new level of severity.  I think I've seen a drop in the amount of pain for each headache but not in frequency.

Just to refresh what I'm taking:
10,000IU D3
1800mg Omeg-3
666 mg Calcium
266mg Magnesium
10mg zinc

Really appreciate everyone's efforts here...just need a little more help...I feel like I'm doing something wrong.
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« Last Edit: Apr 25th, 2012 at 11:06am by Mandarb »  
 
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Re: 123 Days PF And I Think I know Why
Reply #734 - Apr 25th, 2012 at 11:07am
 
I'd go to 20,000 i.u. of D3 per day.
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Re: 123 Days PF And I Think I know Why
Reply #735 - Apr 25th, 2012 at 2:59pm
 
Seed,

Bill is spot on...  Now that you've been taking vitamin D3 for more than a week without any reaction to it, you can up the dose to 20,000 IU/day.  Depending on your 25(OH)D level, increasing your vitamin D3 to 20,000 IU/day can shave a week to 10 days off the time needed to reach a serum concentration of 60 ng/mL.  The dashed line in the graphic below provides an estimate of the 25(OH)D response to 20,000 IU/day vitamin D3.

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Have you gone in for the lab test for 25(OH)D?  Knowing your serum concentration of this vitamin D3 metabolite will help tell you when to expect a favorable response.  Most of us respond to this regimen between 60 and 110 ng/mL.

It's also a good idea to have this test done again a month after you go pain free...  You'll likely need to reduce the vitamin D3 dose back down to 10,000 IU/day.

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 #736 - Apr 26th, 2012 at 12:24pm
 
Hey Batch and others,
Yesterday I got two new hits, one at 8:30am (very mild) and the other at 9:30 (mild to moderate), both responded very well to oxigen. Given the fact that I have to get back to class I started the pred taper yestererday. Today is my first morning pain free!
A couple of things I'd like to add to this: this is my second week of the cycle and thats usually when the hits start to get really nasty. I believe that the very low intensity of the hits ive been having is due to the D3+ formula. Another fact to take into consideration is the dosage of prednisone that Im taking : only 60mg a day, I dont think that would have been effective by itself ( last time I took 80mg to shake the beast off my back), so again... Maybe it's the vitD working!

Hey guys, do some of you feel your heart beat stronger (annoingly so) and find trouble sleeping while on Prednisone?

Thanks a lot for your help, I'll keep on with the vitD formula and keep you posted on how it goes when I lower the pred doses, i should be ordering pretty soon the 5000 UI pills!

PF days and nights to you all!
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Re: 123 Days PF And I Think I know Why
Reply #737 - Apr 26th, 2012 at 12:50pm
 
Quote:
Hey guys, do some of you feel your heart beat stronger (annoingly so) and find trouble sleeping while on Prednisone?

Yes.
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Re: 123 Days PF And I Think I know Why
Reply #738 - Apr 28th, 2012 at 3:54am
 
Hey all,

I've just finished reading all 30 pages of this and have decided I want to try it too!  I've ordered the suggested cocktail of vitamins and minerals and will start taking them as soon as they arrive.  Will update results when I have something to report.

Thanks to all for your information and especially to Batch for making your posts easy to read!!   Smiley

David.
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Re: 123 Days PF And I Think I know Why
Reply #739 - Apr 28th, 2012 at 11:31am
 
Hey David,

Thanks for the headzup that you'll be starting the anti-inflammatory regimen...  Try to get the lab test for 25(OH)D, the serum level metabolite of vitamin D3. 

If you can't get your PCP to order the 25(OH)D lab test, I'm told there are labs in the UK that do this test at a reasonable price without need of an Rx.

Take care, do keep us posted and cheers,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #740 - May 2nd, 2012 at 5:34pm
 
Hey Batch
Getting hit for 2 nights now, upped to 18000 iu hoping it will show some effect soon.   The tests that you can buy online in the uk come from Birmingham and Sandwell hospital.. If you google this vita vit d blood spot test you get the required place.  £25 for a test.
Keep smiling Cheesy
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Re: 123 Days PF And I Think I know Why
Reply #741 - May 2nd, 2012 at 6:36pm
 
Hey Radar,

Thanks for the info on where to obtain the vitamin D3 blood spot home test in the UK. 

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This is the same technology used at ZRT labs here in the US.  I have two of their test kits on hand and the cost here is comparable.  Have you ordered this test?

Regarding upping your vitamin D3 dose.  Check out the attached paper by Heaney et al.  As long as you're tolerating the present vitamin D3 dose, it appears a loading dose of 50,000 IU/day one day a week and 20,000/IU/day the rest of the week will elevate your 25(OH)D safely and rapidly.

When you get your CH under control and go pain free, I would continue another week on this dosing schedule then stop the loading dose and lower the daily dose to 15,000 IU/day.

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 #742 - May 2nd, 2012 at 10:52pm
 
First, I want to parrot some and say "Thanks Batch and all other guru's on this board." Without you all CH would not be as easy to handle alone.

Second, I wanted to express my thanks in teaching me biology. I'm pretty sure after reading all 30 pages of this post I can now (finally) pass high school (if not college) biology! LOL  Grin

Third, I started using a 1/2 dose of the VD3/Omega-3/Ca/Mg/Zinc 'cocktail' last Saturday. Saw a little bit of a reduction in intensity the first few days. Today was my first full day of nothing larger than a shadow. Even slept through most of the night last night.  Cheesy I'm not wanting to use a full dose of the vit/min until I get my 25(OH)D test. I'm seeing my doctor on Friday morning and I'm hoping she'll be open to getting an education in CH. I'm armed and ready for the fight with all the information I've gained since finding this website. Don't worry, I won't over whelm her on the first visit. But I do plan on getting what I want, which is the 25(OH)D test, Chem Panel, CBC and a prescription for O2. I’ll get you the SITREP as soon as I have the results.  Wink

Thanks again all and here's for PFDAN soon!
Amy
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Re: 123 Days PF And I Think I know Why
Reply #743 - May 2nd, 2012 at 11:43pm
 
Hey Amy,

You go girl !!!  I love the attitude and I'm confident you'll do just fine on all counts...  In fact, even at a half dose of vitamin D3, I'll wager a coke & candy bar you'll be mostly PF by the time you see your doc on Friday...

Some physicians are hesitant to take continuing medical education (CME) from their patients...  The big reason for that is they don't get any credit for it...  However, the wise physician should be attentive to the dramatic symptomatic improvement in a patient's condition...

If your doc goes into fibrillation when you tell him you intend to dose on vitamin D3 at 10,000 IU/day until your 25(OH)D serum concentration stabilizes at equilibrium around 90 to 100 ng/mL, and then stay at a dose of vitamin D3 that keeps your concentration of 25(OH)D at that level...  show him the attached study...

I'll assume from your handle...  JandS Momma, that you've got kids...  Putting them on 5,000 IU/day vitamin D3 would be a good idea...

Take care...  This is exciting...

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #744 - May 2nd, 2012 at 11:59pm
 
You know... I was going to ask about that. Both of my children have high cholesterol (from their father's side Undecided ). And my son was officially diagnosed with ADHD (although I don't agree Angry ) and was put on medication (Methylphenidate @ 54mg). After reading so much on this site (and this post specifically) I'm wondering if maybe a modified version of the suppliments might work wonders for both of them. I'll have to do a little more research on acceptable doses for a 10 & 11 year old. I'm also worried about them developing CH in the future, although they don't show any signs now. *fingers cross* That they get to live PF and never know this HELL.
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Re: 123 Days PF And I Think I know Why
Reply #745 - May 3rd, 2012 at 2:45am
 
Hey Amy,

Good on you for taking the initiative with these vitamins and micronutrients for your kids.

The following slight modifications to the basic anti-inflammatory regimen should be just fine for your kids...

5,000 IU/day vitamin D3*
1,000-1,300 mg/day calcium**
2,000 mg/day Omega 3 Fish Oil***

* Many nutritionists and pediatricians in the know prescribe 4,000 IU/day vitamin D3 for infants...

** The calcium citrate tablets with magnesium, zinc and boron are ideal for kids... Four (4) of the Kirkland brand of calcium citrate tablets a day will be spot on...  Meets Calcium, magnesium, zinc and boron RDAs per the charts below

*** Does wonders to lower high cholesterol and high triglycerides.  You can also add Nature Made Cholest Off, a mix of natural plant sterols and stanols to help bring down total cholesterol and triglycerides even further.

The following two tables of recommended RDAs for calcium and magnesium supplements come from the Food and Nutrition Board at the Institute of Medicine...

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As far as your kids inheriting CH...  Although there's a link... the odds remain very low... Maintaining a healthy serum concentration of 25(OH)D should do the trick to prevent CH even if the odds were much higher...

I'm not a doctor but I think methylphenidate is being over prescribed...  In addition two of my kids are teachers.  Ryan teaches music and voice in middle school, Jr, High and High School in Boise, Idaho.  Gretchen is an Art professor at a small private collage in Southern VA...  Both did two year stints in special education. 

They take a busman's holiday for a month each summer as senior councilors at Camp Goodtimes West here in the State of Washington on Vashon Island.  They've done this for over 20 years since Gretchen beat out ALL...  so both spend a good bit of time with kids in need...  They also share my concern that CNS stimulants like methylphenidate are being over prescribed...

Accordingly, after your son has been on the vitamin D3 for a month, order the 25(OH)D lab test.  If his serum concentration of 25(OH)D is > 40 ng/mL, do your own assessment of his ADHD...   If you see what you're looking for, ask his doctor about taking him off the methylphenidate...

Balancing work-home life can be difficult at best these days, but if you can find the time to take him out for a 10 minute jog three to four times a week, you can work off any leftover hyperactivity...  The vitamin D3 will give you more energy and a little physical activity will also do wonders in helping you shed a few pounds and inches...  Roll Eyes

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #746 - May 3rd, 2012 at 7:07am
 
Hi All,
I'm very interested in this combination, would love for my partner davy to be on as natural remedies as possible. At the minute he has gone back up to 60mg of steroids, is starting on 480mg of verapamil, has had his head botoxed and is awaiting an oxygen trial. He is up and down at the minute(literally) with attacks, he is chronic and I mean chronic. I will let you know if there is any improvement.
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Re: 123 Days PF And I Think I know Why
Reply #747 - May 4th, 2012 at 12:46pm
 
Back in cycle. Just completed a pred taper. While on the pred I was pretty much PF. 1st day off and I'm back in the saddle though.

I'm going to the store to grab all this stuff now and get in on the experiment.

Batch, it looks like this routine doesn't break a cycle, but just stops hits from happening while in cycle?

Has anyone tried some triggers while successfully doing this to see if the hits occur? It would be interesting to know if this suspends the cycle not just the hits, or if the cycle is continuing but the hits are just absent from the cycle.

And thank you very much, Mr. Batch sir! This is most excellent work!!!!
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Re: 123 Days PF And I Think I know Why
Reply #748 - May 4th, 2012 at 1:53pm
 
superhawk2300
For me, at least, this regimen almost immediately broke the cycle. Both the immediate I was in, and also the close-to-chronic that had lasted a year. The third night was pain free, and so long to you Mr. Cluster, my nemesis and tormentor for 21 years!

But others have different stories, and about 3 of 10 reports no effect at all. Let's hope you're as lucky as me!
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Re: 123 Days PF And I Think I know Why
Reply #749 - May 4th, 2012 at 2:49pm
 
I have to share with you all how incredible I feel right now. I've been mis-diagnosed with migraines for the last 2 years (even after my self diagnoses a year ago, that doctors didn't believe) and thought I'd just give up and deal with these things on my own when they happen. Besides, my episodes only lasted 2 weeks every 6 months. Piece of cake! Then the beast decided to change the rules, I'm in week 6 now  Angry So last week I got online to do more research and found.... HOME! This place is great. After reading the first couple of pages of this post I decided to purchase the ingredients of this regime and start with a ½ dose. I also made an appointment with a new doctor and continued to read everything my brain would absorb on CH.

I just got back from my new doctor's office where I gave her the exact same 'symptoms' that I gave the previous 2 doctors. She asked a couple of questions about migraine symptoms and I thought I was gonna have to break out the literature I brought. Lucky for me, she said that she would like to refer me to a neuro and that she didn't believe these were migraines. I asked her what she thought they were and she started to tell me about this very rare condition called cluster headaches! She was hesitant to diagnose this only because I am female and it's rare for women to have it. I was so excited that I found a doctor who had, at least, heard of them!!  Cheesy She also wanted me to have some blood work done and told me that she was ordering a CBC. Then she asked if there was anything else and I told her to please include the 25(OH)D along with that. She smiled and said "You've done some homework."

I'll keep you posted on the results, but for now... I'm going up to full dose on the Batch Regimen! The hits lessened with the ½ dose… let’s see if I can knock ‘em out with a full dose  Kiss
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