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123 Days PF And I Think I know Why (Read 533019 times)
Glassman
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Re: 123 Days PF And I Think I know Why
Reply #2225 - Mar 4th, 2015 at 10:10am
 
Good morning Everyone!
I got hit this morning around 9:20. At first I thought it was just a tension headache from sleeping in a twisted position but then I remembered I had been dreaming and as I kept a watch on it, well, it began to build, although very slowly.

So I was able to eliminate it with Oxygen easily enough. The whole thing lasted about 20 minutes.

The last day I had a CH was Friday the 27th.  At this point in my cycle to have 120 hours pain free is pretty amazing. Equally amazing is to have a CH last only 20 minutes! They'll usually last at least 90.

Starting Sunday the 1st, I have dropped the D3 down to 10,000 IU per day.
So, according to a suggestion Batch gave to me, I'll be moving that back up to 40,000 per day for another week.

I'll keep on updating!

Gary
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2226 - Mar 4th, 2015 at 12:38pm
 
Gary,

Five days at 40,000 IU/day vitamin D3 should do the trick.  That works out to a loading dose of 200,000 IU vitamin D3 and that should add a little less than 20 ng/mL to your existing 25(OH)D serum concentration. 

At the end of the five days, drop back to 15,000 IU/day as your maintenance dose and see if that keeps you completely pain free.

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 #2227 - Mar 4th, 2015 at 1:14pm
 
Five days at 40,000, got it!
D3 test kit is on the way.
Thanks Batch!
Gary
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Re: 123 Days PF And I Think I know Why
Reply #2228 - Mar 7th, 2015 at 8:03am
 
Batch,
Update:
Still getting low level hits in the kip 1-2 range for the past four mornings (this morning included) and O2 knocks them out pretty easily (honestly, I've been getting one or two very low level hits that have gone away all by themselves before getting a longer lasting hit that annoys me enough and lingers too long, then I'll get the O2)

I'm on day four of the five day 40,000 IU D3 loading dose you suggested.
I'm going to up that to 50,000 for today and tomorrow and see if that eliminates those low level hits.

I'm still taking all the other co-factors as well including the B-50 and 800 mg magnesium. Still taking vitamin C but now at the 2,000 mg daily you suggested.

Kathy had some minor surgery and was prescribed antibiotics, so to get her back on balance I got a probiotic and have been taking that as well.

Gary
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« Last Edit: Mar 7th, 2015 at 8:04am by Glassman »  

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Re: 123 Days PF And I Think I know Why
Reply #2229 - Mar 7th, 2015 at 9:15am
 
Gary,

Thanks for the update and good move starting the probiotics.  Having a healthy gut makes everything work better...

Regarding the vitamin D3 dose.  There are a number of studies that indicate the maximum vitamin D3 serum concentration occurs between 4 and 12 hours after an oral dose.  Dr. Robert Heaney, MD, one of the Jedi Masters of vitamin D3 therapy, has also opined that serum vitamin D3 can also travel directly to target body cells where it's metabolized to 25(OH)D in support of genetic expression while the rest of the serum vitamin D3 is being metabolized by the liver to 25(OH)D.

See the following link to an article by Dr. Heaney titled "Quantifying the Vitamin D Economy" at Vitamin D Wiki:

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Connecting the dots, it might be helpful to take the oral vitamin D3 eight (8) hours prior to the time you're experiencing the morning hits.  In other words, take half the vitamin D3 at the regular time and the other half just prior to going to bed.  Doing this should help ensure your serum concentration of vitamin D3 is near its maximum around the time of your morning hits.

Make sure you're taking at least 500 mg/day magnesium along with the rest of the vitamin D3 cofactors.

Take care and please keep us posted.

V/R, Batch
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Peter510
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Re: 123 Days PF And I Think I know Why
Reply #2230 - Mar 7th, 2015 at 10:35am
 
Hey Batch,

I had a few hits over the last few days of about 5/6 strength. I had been doing really well up to that.

The only thing I can think of is that I bought a new supply of Magnesium. Ingredients on the back of the bottle says Magnesium, no mention of Citrate, Malate or anything else.

Any advice?

Many thanks as always,

Peter.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2231 - Mar 7th, 2015 at 6:50pm
 
Peter,

There have been a few CH'ers report similar happenings after switching brands of magnesium.  Try looking up that particular brand over the Internet and check the Supplement Facts label.  If all else fails try to find the original brand.

Take care,

V/R, Batch
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Peter510
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Re: 123 Days PF And I Think I know Why
Reply #2232 - Mar 7th, 2015 at 7:44pm
 
Batch,

I'll certainly try that and report back on developments.

Thank you, as always,

Peter.
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Re: 123 Days PF And I Think I know Why
Reply #2233 - Mar 7th, 2015 at 9:09pm
 
Peter,
I just read your post and Batch's reply.
I can't be sure what day it was but I also changed magnesium brands and wonder if that may be a/the reason I'm getting more hits?  I had gone five days in a row PF.  I was running out and the store I was in didn't carry the original brand I was using so I bought another. I did make sure to buy citrate but....? Wish I could remember what day I started the new magnesium but that would fit in close with the time frame...

Batch, I decided to stick with 40,000 IU today but taking 30,000 of that just before bed and see if that will make a difference with the morning hits.

Gary
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« Last Edit: Mar 7th, 2015 at 9:14pm by Glassman »  

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Re: 123 Days PF And I Think I know Why
Reply #2234 - Mar 8th, 2015 at 4:03am
 
Hi all

I have been a 20 year sufferer of Episodic CH.   For the last 4 years I have been in and out of the message board and picked up the D3 regimen.  My period to suffer has always been mis February through to mid June.  I would have a nightmare couple of weeks where it would be a big hit every 1.5 hours and then settle to something liveable with but a right royal pain in the butt for the rest of the time.  Each of the last few years I would tail off the regimen when the pain stopped. Last year I kept going, I tested my serum level in September and in was 325 Nmol/l .  I went to the doctor and got a test and calcium checks and it was 405 nmol/l and the calcium was fine.  She wanted me to stop taking the D3 but understood why I would not.  I took 5000IU per/day through the winter, I tested 4 weeks ago (when the beast usually rears its head) and I was on 250 Nmol/l.  So here we are in the second week of March, no pain for the first time in 20 years, it has let me know it is still there in the background by a couple of low fly bys. But I am fine.  Intend to test again just before Easter, get doc checks at Easter, then see where I am.
I guess the key thing for me here is that I was very very high with my serum level, and with still taking 5K D3 a day it still fell by 150nmol/l over the winter period.  I had no illness at all in that time, so a lesson learnt for next year..........keep a maintenance dose going after the pain goes, think about the future, but check those calcium levels.
Kind regards all PF days to all
Ian
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Peter510
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Re: 123 Days PF And I Think I know Why
Reply #2235 - Mar 8th, 2015 at 4:20am
 
Gary,

That's very interesting, about you also changing your brand of Magnesium recently. I will get my old brand tomorrow (with citrate) and see how the next week or 10 days go.

I'll let you know how I get on.

Ian,

Thanks for the post. Having graduated to Chronic two years ago, I intended to continue taking the D3 forever more, but even if I were episodic I think I would do the same, just to be sure.

Keep well all,

Peter.
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Re: 123 Days PF And I Think I know Why
Reply #2236 - Mar 8th, 2015 at 10:12am
 
Thanks Ian and Peter for the good input.
I'm episodic (and hope to not go chronic!). From my recent "burn down" experience, I see the D3 regimen as being very much similar to blood pressure meds (which, thankfully, I do not need), in that it is a life long and daily necessity.

To give more information on the magnesium switch, I went from softgels (150 mg, and I think the brand was Nature Made) to tablets (200 mg, the Vitamin Shop). I don't know if going from softgels to tablets would make a huge difference but no bit of information should be overlooked...and maybe Batch has heard something along those lines that would verify yea or nay...

On the good side of things... no morning headaches of any size or length of time! Smiley

Cheers!
Gary
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« Last Edit: Mar 8th, 2015 at 10:36am by Glassman »  

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Re: 123 Days PF And I Think I know Why
Reply #2237 - Mar 8th, 2015 at 11:59am
 
I can't believe I only said "good" about not having any headaches this morning.
What I really mean is WONDERFUL, AWESOME, FANTASTIC, OVERJOYED, BEYOND RELIEF, THANK GOD ALMIGHTY AND ANY OTHER DIETY WHO'S LISTENING!!!!!!
Gary
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Re: 123 Days PF And I Think I know Why
Reply #2238 - Mar 8th, 2015 at 12:04pm
 
So you're happy then?   

Peter.
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Re: 123 Days PF And I Think I know Why
Reply #2239 - Mar 9th, 2015 at 10:18am
 
Ian,

Thank you for the detailed update and glad to hear the anti-inflammatory regimen kept the CH beast from making its annual episodic appearance... 

Regarding your 25(OH)D response to dose of vitamin D3, there can be a wide variation between individuals...  The following chart illustrates the average response to the vitamin D3 doses indicated. 

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As you can see, a dose of 5000 IU/day of vitamin D3 results in an "average" 25(OH)D response of 60 ng/mL, (150 nmol/L) and 10,000 IU/day vitamin D3 results in an average 25(OH)D response of 80 ng/mL, (200 nmol/L).

That your 25(OH)D response to dose of vitamin D3 was significantly greater points out the need for 25(OH)D lab tests to determine the optimum maintenance dose of vitamin D3 that keeps your 25(OH)D at a serum concentration that also keeps you pain free.

For most CH'ers, the average maintenance dose of vitamin D3 works out to 10,000 IU/day and a 25(OH)D serum concentration of 80 ng/mL, (200 nmol/L). 

For CH'ers new to this regimen...  10,000 IU/day vitamin D3 is a good starting point as a maintenance dose after you've taken care of your vitamin D3 deficiency. 

However, testing for your 25(OH)D response is still prudent...  See your PCP or neurologist and keep them in the loop if you plan to start this regimen and want to know your present 25(OH)D serum concentration.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2240 - Mar 13th, 2015 at 3:11pm
 
Hi Batch, I've been on your anti-inflammatory regime for about 3 years now, and I just wanted to register, log in, and personally thank you for all of your research. I was episodic for 15 years, until I starting taking the regime and I've been virtually pain-free since.  I've also made some some minor changes in my diet, and started implementing myofascial trigger point therapy, which also helped tremendously. The combination of all three has completely changed my life.  Anyway, thank you again, sir. You've helped hundreds of people become pain-free, & without the use of drugs.
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Re: 123 Days PF And I Think I know Why
Reply #2241 - Mar 13th, 2015 at 3:35pm
 
Hey Brownie,

Thank you for the wonderful update and kind words...  I love to hear success stories like yours...

Comments like yours explaining your experience with this regimen help the wall flower CH'ers sitting on the side lines take the leap and start this regimen...

Thank you again and take care,

V/R, Batch
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Peter510
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Re: 123 Days PF And I Think I know Why
Reply #2242 - Mar 14th, 2015 at 6:22am
 
Hey Batch,

Weekly update and it was a strange one.

If you remember I had changed my brand of Magnesium to one without Citrate, the week before and got a bit of Beast activity.

So on Monday I bought a supply of the previous brand and started them on Monday evening. Other than that, I have not changed a thing with any of the cofactors or dosages.

Anyway, Monday & Tuesday were good, no pain and sleeping well, thank God.

I woke on Wednesday morning feeling well after a decent nigt's sleep. HOWEVER, at about 9:15, while driving to work, I was hit hard (kip 8/9) out of the blue. It came on really fast and I had to pull off the road for about 40 minutes.

Anyway, it eased back somewhat and I continued on, arriving in the office about 30 minutes later.

And it hit again, same strength. This time it lasted about an hour and half, with me hiding behind my desk for that period.

Again it eased back somewhat and I was reasonably OK until about 3:00, when once again, it's back. ( this time I'm in the Baoardroom with about 20 others). So I hold on for about 30 minutes and have to leave, because I would have made a show of myself if I hadn't.

I crawled into the car at 4:30 with heavy shadows, and managed to get home safely, where the shadows stayed with me until about 10:30 p.m.

Slept OK on Wednesday night. Thursday and Friday, not a twinge and so far this morning ( it's 10:15 here in Ireland) everything is good.

SO... Is it conceivable that the change in magnesium and the citrate element was enough of a trigger to cause all that on Wednesday, for one day only?

I would welcome your views.

Gary,

How are you getting on?

As always Batch, thanks a million.

Peter.
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Re: 123 Days PF And I Think I know Why
Reply #2243 - Mar 14th, 2015 at 10:04pm
 
Peter!
I'm glad you gave an update.
I'm so sorry to hear you're having continued problems of such intensity.

As you recall I also changed brands of magnesium citrate and got hit soon after that (at least that's close to the time period). I had one to two morning hits for the next four days (although they were quite mild) and then a blissful five days off from the beast. Then morning hits again and this time I was still on the new magnesium.

So, I'm thinking that in my case, at least, the magnesium had no bearing on the cluster's behavior.  I'm tempting fate today, I'm yet again switching magnesium brands back to the original softgels.

This is day two of the return of the cluster after my five day vacation. I'm still getting morning hits with numerous afternoon/evening shadows now thrown into the mix (they're more like a left side posterior neck muscular tightness with what I call zips and zaps-like a hit coming on and then a second later-gone).

I'm traveling this weekend so I'm leaving the O2 tank behind and packin' the Imitrex.

I certainly hope you get some lasting relief from the beast soon.
Take care and keep on posting!
Gary
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Re: 123 Days PF And I Think I know Why
Reply #2244 - Mar 15th, 2015 at 3:51am
 
Gary,

Well, last Wednesday seems to have been an exception. I am still getting small hits daily, but nothing I can't handle and I started trying Red Bull yesterday to stamp an oncoming attack down and it worked. Same again about half hour ago.

So it's all relatively good again ( for the moment).

I'm going to Rome for a week, next weekend. It will be interesting to see how I get on and how the Beast behaves on the flight.

Also, I think I'll get my bloods done on Saturday next. The results would be available when I get back from my trip and it will be interesting to see what's happening with the D3 and Calcium levels.

I'll update next week.

In the meantime, mind yourself.

Peter.
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Re: 123 Days PF And I Think I know Why
Reply #2245 - Mar 28th, 2015 at 3:35pm
 
A useful aside to the regimen?

Thought i would share this.  What is clear to me reading the message board is that we all have different responses to our condition, all have different positive responses to the regimen and also other extra positive health effects.  Just under 2 weeks ago I had an emergency admission to A and E (ER) for a burst appendix.  I had a laporoskpy to remove the offending organ and then went home a day later.  I rested for 4 days  then went back to work (school Principal) the next day.  Ok i didnt feel 100% but I was definetly ok to work.  During the week I got better and better finally doing 2 12 hour days with no ill affects at all.  Ok I can still feel the wounds, I am a little tired, but it is my CH time, but that has not happened this year due to the regimen, but my rapid post operative recovery is surely down to that as well.  I am not sure which part, perhaps the vit A, i am sure Batch will be able to help me understand that.
Once again this just re-enforces to me the huge gratitude I feel to Batch for keeping us informed and allowing me not to just exist, as I did prior to finding the regimen, but to positively thrive.
Thank you
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Re: 123 Days PF And I Think I know Why
Reply #2246 - Mar 28th, 2015 at 8:17pm
 
Hey Radar,

Thanks for the kind words and excellent observations on the benefits of the anti-inflammatory regimen beyond preventing CH.

There are dozens of studies that have found serum concentrations of 25(OH)D drop by up to 40 percent following trauma and surgery due to inflammation. 

That your serum concentration of this vitamin D3 metabolite was considerably higher than the average individual who doesn't supplement with vitamin D3, gave you a clear health advantage with a rapid recovery following your appendectomy.

In a study by Reid D, Toole BJ, Knox S et al. The relation between acute changes in the systemic inflammatory response and plasma 25-hydroxyvitamin D concentrations after elective knee arthroplasty. Am J Clin Nutr 2011.

The basic finding...  "Serum concentrations of 25-hydroxy-cholecalciferol (25-hydroxyvitamin D; 25(OH)D) fell by more than 40% within 24 hours of elective joint replacement surgery and were still 20% lower than pre-operative values three months after the operation."

In addition... "Vitamin D binding protein (12%) and free 25(OH)D (40%) concentrations were also depressed by the surgery; the response of the vitamin D metabolites was very similar to that of vitamin A..."

As part of innate immunity, inflammation-activated immune cells take up 25(OH)D and synthesize 1,25(OH)2D, which up-regulates IL-10 production and the synthesis of the anti-microbial peptide cathelicidin, and depresses TNFα production.

A similar response takes place in reaction to allergens like pollen and mold spores... and this is apparently one of the reasons why many CH'ers fail to respond to vitamin D3 therapy with an increased serum concentration of 259OH)D as rapidly as others.

Thanks again for the great post.

Take care and please keep us posted....
-
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Re: 123 Days PF And I Think I know Why
Reply #2247 - Mar 29th, 2015 at 8:44pm
 
Hello All

So I have been on the regimen for 4 months now and its probably time for an update.
I have taken the D3 and cofactors religiously with the exception of the calcium as I am on verapamil. I laso dropped the magnesium to 200mg/day as it played havoc with my exhaust system.
Since i started taking the D3 i have been completely PF, which is quite wonderful, I am also feeling extremely well. 25(OH)D levels are steady at around 180Nmol/l as tested last week.
The only negative is that whenever i try titrating off the Verap i begin to feel slight shadows after about 3 days, ramp up the verap and they disapear again. I have tried this three times now with the same result.
I guess that this means that the two are working in concert to keep the beast at bay but alone neither is sufficient. To my mind its still a good result.
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Re: 123 Days PF And I Think I know Why
Reply #2248 - Mar 30th, 2015 at 12:20am
 
Hi Wayne - Great news about being pain free plus feeling extremely well. That is wonderful.

Don't worry that you need the combination of some verapamil plus the D3 for this, all that matters is that you've found your recipe for being pain free.
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Re: 123 Days PF And I Think I know Why
Reply #2249 - Mar 30th, 2015 at 12:18pm
 
Hey Wayne,

Thanks for the feedback.  It appears you've got your beast well under control...

I understand the continued need for verapamil...  We've had a number of CH'ers start this regimen who still take verapamil...  We have even more CH'ers who managed to come off verapamil completely... 

They were able to do this by maintaining a 25(OH)D serum concentration between 200 and 250 nmol/L, 80 to 100 ng/mL. 

It's all a matter of 25(OH)D serum concentration, the higher it goes, the greater the CH preventative effect.  Once you get your 25(OH)D above 200 nmol/L, you should be able to come off the verapamil.

Regarding magnesium and tail pipe problems...  splitting the magnesium dose am with food and pm with food helps reduce GI tract disturbances and the incidence of osmotic diarrhea.

Thanks again for the wonderful feedback.

Take care,

V/R, Batch
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