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Anti-Inflammatory Vitamin D3 Regimen and Survey (Read 247880 times)
roland88
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #500 - Jun 29th, 2016 at 6:28am
 
I'm a bit miserable and tempted not to post - but then again, I often surprise myself.

My guess is that it's been about 2 years since my last post and have been PF for most of that time. Just a couple of migraines throughout the year. The lat migraine commencing the start of my CH's again.

Not sure if it's been a perfect storm or not: winter here and no sunshine, been a bit slack with the vitamins and been missing most Fridays and weekends (although 10K of D3 and the others religiously on weekdays), a tooth infection (mild) followed by a course of anti biotics, and a reasonable amount of stress.

The migraine happened just after the trip to the dentist and that had me wiped out for the rest of the day. About 4 or 5 days later the CH's started again. That was nearly 2 weeks ago and the CH's have been getting worse. Like clockwork - 1PM, 7PM and 3AM. I've been taking 20-30,000 daily of D3 along with the 2x  Magnesium, 1 x Calcium, 2 x Fish Oil, 1 x Multi and last night I had a loading dose of 50K of D3. So all up over the last 2 weeks I have had around 350,000 of D3.

I now have a stash of Imigran - both tablets and nasal spray. The spray is better, taking around 15 minutes. The tablets have me sitting in a corner somewhere with me clutching my head and rocking backwards and forwards for 40 minutes or so until the pain dissipates. 40 minutes would probably have seen the pain go away by itself anyway..?

I'm slowly convincing myself that the Vitamin D is not working anymore.

I've read this thread backwards 2 times in the last few days. Why backwards you may ask? Well, I always look for the latest post, and since I am on page 20 already, seems like a great place to start.

Maybe I should read it all again to get some inspiration................. Sad
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« Last Edit: Jun 29th, 2016 at 6:53am by roland88 »  
 
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Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #501 - Jun 29th, 2016 at 10:23am
 
Hey Rolan,

Thanks for the update...  From the descriptions of all you've been going through it's easy to see you've encountered a perfect CH storm.

It's also easy to have doubts about the effectiveness of any CH preventative when the beast is jumping ugly several times a day.

Your action to start loading is good, but it should have been coupled with a trip to your PCP for a 25(OH)D lab test.  In short, you can't really say the vitamin D3 regimen isn't working unless you're taking the complete regimen at 10,000 IU/day vitamin D3 with all the cofactors and you know your 25(OH)D serum concentration is around 80 ng/mL or higher with a recent lab test.

There are a number of other things you need to do.  The two year period of essentially CH pain free time coming to an end may be an indication of a B vitamin Deficiency.  The best course of action is to start a 3-month course of vitamin B 50 complex.  A tablet a day will do just fine. 

The second thing to start is Benadryl (Diphenhydramine HCL).  It's likely you're experiencing an allergic reaction that results in a flood of histamine.  When that happens, nearly all CH preventatives become ineffective.  A week to 10 days taking 25 mg tablet every 12 hours can have a dramatic effect...  Just be careful if you need to drive as Diphenhydramine will make you drowsy.  If you need to drive during the day, take 50 mg Diphenhydramine after eating the evening meal.

Diphenhydramine is a first-generation antihistamine that crosses the blood brain barrier to block H1 histamine receptors throughout the brain and in particular, the hypothalamus and trigeminal ganglia where histamine triggers the release of CGRP and other cytokines that result in neurogenic inflammation and pain. 

Once these histamine receptors are blocked, vitamin D3 and other CH preventatives have a much better chance of preventing CH.

Infections are just as bad as allergies when it comes to CH preventatives...Infections trigger inflammation as part of the body's immune system response and that includes seemingly minor tooth infections.  When that happens, our immune systems go into hyper drive taking priority on the consumption of vitamin D3 and its metabolites leaving too little to control and prevent CH.

Finally, if you've taken an antibiotic, you need to start taking a good probiotic.  The reason for this is simple once you understand that nearly all antibiotics are indiscriminate, so wipe out the friendly colonies of bacteria called the microbiota living in your GI tract along with the offending bacteria causing the infection.

The microbiota includes bacteria, fungi, and archaea are also called the microbiome.   Most people get loose as a goose within a day or two after starting an anitbiotic.

Medical science is finally starting to understand the role played by the microbiome and why it is an important part of the human immune system we need to have functioning properly to keep us healthy.

Taking a good probiotic is just the first step.  The microbiota also need special food to flourish and that includes fermented vegetables like fresh sauerkraut and kimche.  A serving of one or the other once a week can work wonders...

If you want to get smart on the Human Microbiome Progect (HMP), check out the following link.  It's a fascinating read.

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Regarding how to read this thread...  You're right, it can be a daunting task, particularly so when the CH beast is jumping ugly.  I suggest starting on page 1 as I try to keep the latest version of the anti-inflammatory regimen posted there.  The later (most current) posts generally cover individual situations and why we need to take these supplements.

Hope this helps.

Take care and please keep us posted.

V/R, Batch
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Peter510
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #502 - Jun 29th, 2016 at 10:25am
 
Roland,

Read the second part of this link for the latest update:

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Also, try taking 50mg of Benadryl with your evening meal. Benadryl is an anti-histamine and it's possible your tooth infection has upset the balance.

Generic Benadryl is just as effective. Take it for 4/5 nights. It makes you drowsey, thus the advice about taking it with your evening meal, avoids driving. Photo below of the product I buy from Ebay.

Best of luck,

Peter.

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« Last Edit: Jun 29th, 2016 at 10:28am by Peter510 »  

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Peter510
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #503 - Jun 29th, 2016 at 10:29am
 
Oops,

I see Batch got to you first......even better.

Peter.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #504 - Jun 30th, 2016 at 3:49am
 
Thanks Batch and Peter

Woke with a heavy shadow and a bit of a headache - knocked that back with an Iboprofen. 2 x CH's so far today - 1 at 10am and 1 at 3PM both killed with an under the tongue Imigran. The tablet form of Imigran takes too long to be effective if swallowed. It's 5.42PM now and normally I have another CH at 7PM, but think they have shifted in timing a little.....

Got myself some B complex becuase the pharmacy didn't know what B50 was. Had one of these at lunch time.

Can't get Benadryl in Australia in tablet form. Best I could get is something labelled as a sleep aid and contains 50mg of Diphenydramine Hydrochloride. I'm guessing, that although double the strength, they should be OK. Obviously for pre bed time use only zzzzzzz.

Will be taking another 20K of D3 with the other factors at dinner time tonight.

Wish me luck!
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #505 - Jun 30th, 2016 at 4:12am
 
Hi Roland,

the sleep aid containing 50 mg of Diphenydramine Hydrochloride will do just fine.
I find that when i take 50 mg, i sleep a long and heavy sleep.

All the best
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Peter510
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #506 - Jun 30th, 2016 at 5:42am
 
Roland,

You can also take 10mg Melatonin, if you want to up the odds of a great sleep.

Hope you have a PF night with a good 8 hours sleep, minimum.

Everything is easier to cope with after quality sleep.

Peter.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #507 - Jul 3rd, 2016 at 4:46am
 
No relief yet Sad

Headaches are worse and now I have a morning one as well at 6am. So last night at 2am, then 6am, then 2.30pm and just fighting one off now 6.30pm with an under the tongue Imigran. My Imigran tablet dissolved in the mouth at 2.30pm today took nearly an hour to work!

I have limited nasal sprays, so save these for the nocturnal one - the spray works in 15 minutes.

I did add the B complex and the Bendryl equivalent 50mg which I take just before attempting some sleep. Tonight will be the 4th day of the added Bendryl and B.

I've taken a lot of D3, the 2 weeks up to the 29th June my count was 350,000, I've added another 150,000 in the last 3 days since then with another 50,000 by the end of today.

Should it really take this long to find relief?
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Peter510
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #508 - Jul 3rd, 2016 at 6:51am
 
Roland,

Sorry to hear that you have not found relief yet.

I suspect that your 25 OH (D) is depleted to the point where you are effectively starting the D3 Regimen again.

As Batch pointed out, you need to get your levels checked to confirm (or deny) this theory.

If it is the case, it can take some weeks before you start to feel the benefits. I was a chronic sufferer for a couple of years when I started and it took all of 4 weeks and more, before the D3 started to work.

Persevere and get your bloods done.

Best of luck,

Peter.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #509 - Jul 3rd, 2016 at 6:55am
 
Peter510 wrote on Jul 3rd, 2016 at 6:51am:
Roland,

Sorry to hear that you have not found relief yet.

I suspect that your 25 OH (D) is depleted to the point where you are effectively starting the D3 Regimen again.

As Batch pointed out, you need to get your levels checked to confirm (or deny) this theory.

If it is the case, it can take some weeks before you start to feel the benefits. I was a chronic sufferer for a couple of years when I started and it took all of 4 weeks and more, before the D3 started to work.

Persevere and get your bloods done.

Best of luck,

Peter.



Where you taking 50,000 a day beck then, or just the original 10,000 per day?
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Peter510
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #510 - Jul 3rd, 2016 at 7:50am
 
Roland,

I was taking 50,000 per day, but you have already taken 500,000  in the last few weeks, so you're already well on your way.

Batch can come back and correct me if I'm off the mark here, but I would suggest 20,000 per day and an additional 50,000 at the end of each week, for two weeks.

That should put you a little over the target 600,000 in 4 weeks, with a maintenance dose of 10,000 per day included.

Again I would emphasise the importance of getting your bloods done in the meantime. At that level of dosing you should get your Doctor to test your 25 OH (D), Calcium and PTH.

Best of luck,

Peter.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #511 - Jul 3rd, 2016 at 8:28am
 
Hi Roland, like Peter, I am sorry to hear that you're in pain.
The fact that the pattern of your headaches is changing since you have started the D3 regimen is usually a good sign of things to come.
it looks like you're doing everything as per Batch. You are therefore in with a good chance of exeriencing less pain.
I understand that you are probably finding the wait frustrating, however 80% of us are relieved to some extent (Partial or full PF) with the D3 regimen, so try to hang in there.
It took me a fw weeks too to get PF.
I still experience shadows but very rarely, and in spring i occasionally experience a kip 5 or 6, but they are very few and far between and only in spring and maybe 1 or 2 around november/december.
The d3 regimen has been a huge relief for my life and I've now found that i can live my life for 6 to 7 months more every year rather than spend my days recovering from unbearable pain only to be hit again 40 minutes to an hour after i went to bed.
All the best.
Keep us posted please
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« Last Edit: Jul 3rd, 2016 at 8:48am by thierry »  
 
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #512 - Jul 6th, 2016 at 2:26pm
 
Is there a specific brand of probiotic you guys recommend?
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #513 - Jul 6th, 2016 at 4:55pm
 
Hey Slacker,
this probiotic is of a high quality

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All the best
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #514 - Jul 6th, 2016 at 5:04pm
 
Hey Slacker,

Good question...  I go to Costco and look for the best bang for the buck...   In the case of probiotics, it's the brand with the highest number of probiotic strains, the highest number of live probiotic cultures and lowest cost.

I've found the Probiotic 10 sold by Nature's Bounty meets my needs...
10 different probiotic strains and 20 Billion live probiotic cultures per serving (2 capsules) at $20 for 70 capsules or 54 cents per day...

Or you can go the Cadillac route with 1MD Complete Probiotics Platinum at $39 for a bottle of 30 capsules ($1.30/day) containing 50 billion live cultures in every serving and 11 robust, clinically studied strains.

It's also important to know these little beasties need fermented veggies to flourish.  That means a serving of fresh Kimche or Sauerkraut a week...   The alternative is a good Dil Crock with garden fresh veggies pickling away...

Hope this helps...

Take care,

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #515 - Jul 6th, 2016 at 5:59pm
 
Thanks Batch...I'll check out that Nature's Bounty.

And I'm Korean so getting some kimchi in my diet won't be a problem  Smiley.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #516 - Jul 7th, 2016 at 7:02pm
 
No relief for me yet. Still have the CH at 10am, 2am, 6pm, 10pm and the nocturnal 2am.

2 nights ago I went all nauseous and got a mixture of cluster and a "normal" intense headache. I ended up chewing an Imigran tablet followed by the Imigran nasal spray am hour later. The cluster went away after about 2 hours but I was left with an intense headache on the same side. Took me a while to realise it wasn't a cluster and ended up coming to my senses and took 2 x ibuprofen at 3am. 20 minutes later I was able to fall asleep.

Same thing happened last night, wake with with a CH, try to abort and it morphs into an intense non cluster type headache. I'm now waking with annoying headaches on my cluster side. This I can knock back with the Ibuprofen. I am left with a shadow and slight headache all day between the clusters.

It's confusing trying to work out if the pain that starts to develop is the start of a cluster or will turn into a painful non CH. If it's not a CH and I abort, I waste $$'s with the meds and time with the treatment. If I don't try to abort and take Ibuprofen and it turns into a CH, then I've lost valuable time to abort.

I try to abort using the Imigran tablets dissolved in my mouth because the nasal spray is so expensive, but if I leave the abort attempt too long - it's close to useless and I end up with an hour of CH pain.

I,m into 3rd week of D3 loading and now down to 30,000 D3 a day with all the other stuff. I feel a bit cheated since I have been taking the regime for 2 years since my last CH attack - 10K a day (missing most weekends though).

I'm now thinking that maybe I didn't respond last time to the regime and my cycle naturally ended on it's own.

Yep - shooting in the dark without knowing my D3 levels.

Question is (after all the ranting) is it common for the D3 regime to break a cycle similar to what I have experienced?

P.S. Do others wish Batch was on here 24/7? Sometimes I don't post because being in Australia, the replies take a long time. By then there are other problems to worry about!
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« Last Edit: Jul 7th, 2016 at 7:04pm by roland88 »  
 
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #517 - Jul 7th, 2016 at 7:07pm
 
thierry wrote on Jul 6th, 2016 at 4:55pm:
Hey Slacker,
this probiotic is of a high quality

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All the best


Sorry, I missed this post originally.  Thanks for the suggestion.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #518 - Jul 7th, 2016 at 8:40pm
 
Hey Roland,

Thanks for the update and sorry you're still having a rough time.  Have you tried the Diphenhydramine you reported on 30 June?  That should make a difference in your CH patterns if an allergy is causing the problems preventing the anti-inflammatory regimen from doing its thing in stopping your CH.

The following chart illustrates the response by day of CHers after starting this regimen.

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As you can see, most CHers respond to this regimen in the first 10 days...  only a handful take longer than a month.

The best course of action at this point is to see your PCP for a lab test of your serum 25(OH)D, calcium and PTH.  Knowing your 25(OH)D serum concentration is important at this point. 

If your 25(OH)D serum concentration is not up to 80 ng/mL (200 nmol/L) or above, you may have a vitamin D3 absorption problem.  If your 25(OH)D is up in that range and the Diphenhydramine hasn't made a difference after 3 to 5 days, then you've got something else cooking like a low grade infection or some kind of inflammation.

In any case, if there's no joy in a few days, I'd head for my PCP for a checkup including a CBC.

As far as being on line 7X24...  I stay logged into this forum around the clock and check it several times a day and night...  I do need sleep so after being up most of the night responding to posts from all over the world, I crash for 6 hours between 6 am and noon...(Pacific Daylight Time). I also grab a combat nap after dinner.  At 73, that works just fine for me. 

My wife Joyce and I spend a good bit of time together, and as she reads many of the posts by CHers, she understands the time I spend responding to those posts.  After that, there's a yard and garden that need constant attention so although I'm logged in, I may not be at my laptop.

I try to respond to posts for information as soon as I see them...  but then with only one good eye... and it goes on the blink from time to time, I may miss one for a while...  If I've taken too long to respond to a post, shoot me a PM.  They pop up when I refresh my screen so are hard to miss.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Jul 7th, 2016 at 9:35pm by Batch »  

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #519 - Jul 7th, 2016 at 9:15pm
 
Batch, I did try the Benedryl for 5 nights, just made me groggy through the early hour CH's. The clusters now abort into a huge headache which does respond to Ibuprofen. One thing to note is that the D3 has improved my hearing. I sufferer from tinnitus which has dropped to half the volume over the last 3 days.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #520 - Jul 8th, 2016 at 1:52am
 
roland88 wrote on Jul 7th, 2016 at 7:02pm:
Do others wish Batch was on here 24/7? Sometimes I don't post because being in Australia, the replies take a long time. By then there are other problems to worry about!


Certainly wish we had Batch around 24/7/365 for his wisdom.

However there are a few of us in this corner of the world, both in Australia and New Zealand, plus people seem to post around the clock around the world, so there is always someone around.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #521 - Jul 8th, 2016 at 1:58am
 
Hey Roland,

Let's be thankful for small blessings...  A reduction in tinnitus may be a small blessing...  but it's still an improvement. I've found vitamin D3 has reduced my tinnitus over the last six years to the point it no longer bothers me.   It's still there, but not the roaring hiss it used to be.

I suspect you're starting to respond to the anti-inflammatory regiem and first-generation antihistamine, so I wouldn't change anything at this point...  Stay the course and please keep us posted...

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #522 - Jul 8th, 2016 at 8:01pm
 
Cluster timings are all getting messed up - hope this is a good thing.

I aborted yesterday at 5.30pm and sailed through the evening without the usual 7-8PM one. Went to sleep at 10.30PM feeling pretty good. Even thinking I was actually going to miss the ritual - what a strange thought!.

Wham - one at 12.30am - aborted with a nasal spay, then another at 2am Sad Got through the night and woke with a huge headache at 7.30am, had 2 x ibuprofen and layed back down, then chewed on another Imigran tablet at 8.30am which has me sitting here now in relative painless comfort.

Took this ugly palm out a few days ago:
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Now dealing with the stump, hoping to see the CH's disappear when the stump disappears!

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The fibrous nature of the stump is really hard on my little chainsaw!
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #523 - Jul 11th, 2016 at 3:56am
 
Missed my 1PM CH - feeling like maybe I've broken the back of the beast Smiley
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #524 - Jul 11th, 2016 at 4:01am
 
batch it looks like you are doing great work for people, question on the survey, i think im still episodic but ive been on topomax for over a year straight (wasnt worth the risk coming off anymore) so maybe im chronic. i just started d3 sat and will get the rest of the supplements today, i had recent blood work and my vitamin d was low so hopefully i can get you that number when i get a script for virapimil (new topomax isnt working at all)
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