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Anti-Inflammatory Vitamin D3 Regimen and Survey (Read 241460 times)
Kurama
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #325 - Apr 11th, 2015 at 1:06am
 
In the spirit of keeping the experiences rolling... My Feb 25(OH)D labs came back at 72 ng/ml.  I had been feeling much better than I had in a long time at that time.  Then the shadows returned in early March and I went into a full CH cycle two weeks ago.  I got in to the doctor's office, got some Verapamil (180 mg/day), and had my 25(OH)D test run again.  Test results came back this Thursday... apparently I consume Vitamin D at the exact same rate that a T-Rex consumes a cheeseburger.  Grin

Even on 15,000 IU/day maintenance, my 25D levels had dropped to 52 ng/ml!  I am thinking a series of illnesses in mid-Feb, coupled with the start of allergy season (I literally live in the allergy capital of America), sucked up all of my D reserves.  So I have increased my D3 intake to 20,000 IU/day and have been loading an extra 50K IU for the last two days to bring it back up.  I already feel better and I haven't had a CH since Wednesday morning, although the shadows are still lingering.

A couple of points to note:  My normal cycle hits at a rate of 6 - 8 CH/day for two weeks, drops to 2 - 3 for two weeks, then gradually tapers to 1 per day or every-other-day until it fizzles out at the end of week 6 or 7.  The first four weeks worth are nothing lower than a Kip 7.  Oxygen has only ever worked to delay the onset, never abort it.  THIS CYCLE started at 1 CH/day for three days, shifted to 1 CH every-other-day for 6 days, and I've only had a few Kip 1/2 shadows for the last 3 days.  And, God bless, the oxygen works to abort most of them for the first time ever!  Additionally, only one of my CH hit a Kip 8 and it was at the very start (didn't get to the O2 tank in time).  The other two that broke through were about in the 5/6 range.  If this is all the worse it gets, it's bearable... I never thought I would ever call this condition bearable, but after having been in hell with it, this is a far less traumatic version of the norm.

As a side note, I generally have really bad allergies at this time of year and I have to take allergy meds and use a nasal spray daily, in addition to eye drops from time-to-time.  This year, a once a day allergy pill has taken care of it all.  I'm fairly confident that the higher levels of D in my system are also suppressing my usual spring allergic reaction to all things green or blooming.  I was outside a good deal of today doing yard work with nary a nasal drip, nor an itchy eye to be had.

As long as the CHs keep trending towards rapid shut-down, my next neuro appointment/D test is in June.  I will be interested to see if I can figure out how to maintain a decent 25(OH)D range.

Cheers!
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Chuffy
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #326 - Apr 11th, 2015 at 5:56am
 
Here's one for you Batch.

I just got my Calcium Serum results back  as I have never had that test before, of course they mean absolutely nothing to me, I'm sure you'll make sense of them.

As follows:

Albumin 40 g/l
Adjusted Calcium Concentration 2.50 nmol
Calcium 2.49 nmol

It just said satisfactory so I assume all is ok?

Thanks Batch.  Smiley

By the way Tony, I use the same Healthy Origins D3 as you and I always struggle keeping the levels low and have gone way over at times. I now only take 5,000iu a day and that seems to keep me in the ball park.
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« Last Edit: Apr 12th, 2015 at 4:40am by Chuffy »  
 
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Hoppy
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #327 - Apr 11th, 2015 at 10:01pm
 
Hi Chuffy and Tony,
I get my vitamin D3 on line from Biovea, and never had
a problem keeping my levels within the green zone. just
a thought.

Cheers, Hoppy.
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Peter510
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #328 - Apr 12th, 2015 at 12:37am
 
Hi there,

I get mine on-line from Iherb.com. The brand is Healthy Origins.  Cost me about $30 (US) for 360 10,000 iu soft gels (postage included) and they arrived to Ireland in a few days. They are currently on offer at $19.99, plus, of course, postage to your own country.   

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Never any problems with them and fairly good value for money.

Best wishes,

Peter.
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Hoppy
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #329 - Apr 12th, 2015 at 3:45am
 
Biovea vitamin D3 are made in the US with one of the
highest safety rating worldwide GMP. 60 softgels, not
cheap, but I'm happy.

Hoppy.
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Peter510
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #330 - Apr 12th, 2015 at 4:42am
 
A happy Hoppy!

Can't argue with that.

Peter.
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #331 - Apr 12th, 2015 at 6:28pm
 
Hey Rob,

Thanks for the update and the lab data.  You're correct, your serum calcium concentration is just fine.  Had it been above or below the normal reference range, the lab and your PCP would have gone to General Quarters...

You still on the road?

Take care,

V/R, Batch
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #332 - Apr 13th, 2015 at 1:18pm
 
Thanks Batch, thought that might be the case.

No, I'm not touring at the mo. Just teaching guitar, trying to get my band back together and doing a lot of fishing  Wink
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Kurama
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #333 - Apr 14th, 2015 at 11:27pm
 
For those who have been struggling with getting the Anti-Inflammatory Regimen to work, here is a suggestion...  I have been in an active cycle for two and a half weeks.  I've been on AIR for months, since I knew I was nearing the start of a CH cycle.  AIR seems to have lessened the frequency and pain of the CHs a little, and it is helping the oxygen to work better as an abortive, but it is not stopping the cycle as it has for most.  I also have been having constant, painful shadows in between CHs.  I've been loading on D3 to boost my 25(OH)D levels really high, but I haven't noticed much of a difference past 70 ng/ml. 

My neurologist's nurse practitioner suggested adding 400 mg of Vitamin B2 (Riboflavin) per day to my other vitamins.  She said it has a history of helping to reduce the number of headaches that people with headaches have and that they have added it to their suggested homeopathic preventatives.  It is tricky to find it outside of a B-Complex vitamin, but I located some at GNC.  She said that you can also take it in the B-Complex form as well. 

At any rate, I took the B2 today with my other vitamins and about two hours later the horrible, stuffy, cramped feeling in my head started to break up.  Over the last 8 hours almost all of the pain has dissipated.  I can still tell that the nerve is a little active, but considering what I've dealt with the last few weeks, this is like a picnic.  I checked into the B2 vitamin and it doesn't conflict with any medications used for treating CH or any other vitamins.  It does say that it can take up to 3 months to work, but I experience results within hours.  Additionally, after further research, I think I will include the B-Complex (B1-7, B9, B12) in my regimen.  B-Complex vitamins work to support cell metabolism, which supports healthy nerve function. Additionally, they are water-soluble, so you essentially will tinkle out any excess vitamins your body doesn't use. Smiley


My suggestion: if you have been having mixed or little results from AIR, add in 400 mg of B2 per day via B2 or B-Complex vitamins.  I will post back in a few more days to let you know if it is still working.
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #334 - Apr 15th, 2015 at 6:28am
 
kurama,  that's great news.
for your info, quite some time ago, the vit b multi which has all the main vit b no's in it, was added to the regime.
It was recommended to take them for 3 months
looks like you may have missed that ????
batch added it after another neurologist was treating their patents with a similar vit d3 regime for sleep disorders, as batch introduced, apart from the vit b side, so Batch introduced it, or recommended we follow suit with a 3 month coarse.
At least now you've recognised it can help, So hopefully it improves your current cycle.....

all the best
colin
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« Last Edit: Apr 15th, 2015 at 6:31am by N/A »  
 
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Batch
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #335 - Apr 15th, 2015 at 7:03am
 
Hey Kurama,

Thank you for the update... I need to know if you tried the 3-month course of vitamin B 50 shown in the table of supplements and doses called for in this regimen at the following link or if you were using an older version of this regimen:

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I added Vitamin B 50 to this regimen a year ago at the suggestion of Dr. Stasha Gominak, MD.  I added it for the very reason you started taking the Vitamin B2 (Riboflavin)... It appears you had a vitamin B2 deficiency.

The vitamin B 50 called for in the Anti-Inflammatory Regimen is formulated with 50 mg each of the seven B vitamins plus 400 mg Folic Acid... Accordingly, one of these tablets will also contain 50 mg Vitamin B2 (Riboflavin)...

If you were taking the vitamin B 50 and needed to take more vitamin B2 (Riboflavin) in order to experience a pain free response from this regimen, I'll need to know that so I can make a note about this for future users of this regimen.

We've also confirmed that allergic reactions to a wide range of allergens from spring pollen to dust mites can and will overpower this regimen and keep it from working properly to prevent your CH.  Allergic reactions result a flood of histamine within the mucus membranes in the nasal passages and blood stream.  When this happens, it keeps this regimen from preventing your CH. 

If you suspect you're having an allergic reaction or you've been taking this regimen for 10 days without any relief, the simple fix is a week-long course of Benadryl 25 mg   taken 4 times a day every 4 hours.  If the CH return within a day or two after the first week, continue the taking the 25 mg Benadryl tablets three times a day.

The rationale for taking benadryl is due to the fact that it is a first-generation antihistamine that passes through the blood brain barrier to block histamine receptors in the brain's nerve cells.  This helps stop the neurogenic inflammation in and around the trigeminal nerve and in the process, helps this regimen work as intended to prevent CH.

The downside of benadryl is it acts as a CNS depressant so you will get drowsy and shouldn't drive if you take it.

Check with your PCP or healthcare provider before starting the benadryl, particularly if you're taking any other prescription medications.

Thanks again for the update.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 16th, 2015 at 6:06pm by Batch »  

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #336 - Apr 15th, 2015 at 11:34am
 
Hey Batch,

Long time since I have been in cycle thanks to your anti-inflam. regiment. The beast came back with a vengeance last week. It has been 1 1/2 years since last episode. I think I am in the same boat as you with the pollen here in Huntsville,Al.Last check d3 level was 101. I will get my D3 levels checked again tomorrow. Getting slammed every hour at night Angry Beast wakes me up and get on O2 then pass out then whamo 50 minutes later. This goes on all night long till I give in and get up for good at 5am. They also have been hitting during day 2-4 times a day which is new for last 3-4 cycles. I am a chiropractor here in Huntsville and the sleep depravation is beginning to show!!! Upped vit d to 15,000 - 20,000 and started verapamil yesterday.
   In short I was looking on the site to see if anyone was trying antihistamines in combo with your regiment and look what I came across. I wanted to tell you I am going to try the Benadryl also today and let you know the results. Trying not to take steroids but am about to give in. Thanks for all you do. I send all my patients that have clusters to the website and give them your thread to read, then to the neuro.  Jay
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #337 - Apr 15th, 2015 at 8:33pm
 
Hey Jay,

Pick up some vitamin B 50 (90 count) if you haven't already done so... a tablet a day for thee months should take care of an B vitamin deficiencies...  for some reason that happens on vitamin D3 at the doses we take.

You also need to pick up some Benadryl for the allergies... They trigger massive floods of histamines that make all forms of CH intervention limited at best in efficacy to totally ineffective.  Take one of the 25 mg tabs four times a day for a week then back off and see what happens... I'm still tapering off the benadryl at 2 per day... You should be showing the beast the way out the door after 12 to 24 hours of benadryl...

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 16th, 2015 at 6:05pm by Batch »  

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #338 - Apr 16th, 2015 at 1:08am
 
Hey Batch!  I didn't take the B-50 because I have taken multi-vitamins for years that contain B vitamins.  For your records, the specific breakdown is: 25% DV of B1, B2, B3, and B5; 100% DV B9 (folic acid); 125% DV B7; and 150% B6 and B12. However, I have been on really high doses of Vitamin D for months due to illness, allergens and CHs.  I wonder if this didn't impact my B vitamin levels or if the multi DVs are too low for me. 

My car was literally greenish-yellow this morning from all of the pollen (it is actually a metallic gray).  Not surprisingly, I had two CHs last night despite feeling an overall improvement with the addition of the B-2 yesterday.  I take an allergy medication daily, but I'm wondering if it isn't working as well as the Benedryl would due to the blood-brain barrier challenge.  It's an over-the-counter medicine, so I could change it at my leisure.  I'm on low doses of Verapamil, but that's it for prescripts.  I don't see that Benedryl and Verapamil would cause any bad interactions (other than inability to stay awake during work(which may not be entirely bad considering the lack of sleep lately)).  Fortunately, I work from home and have an awesome boss that let's me do whatever I need to do to balance health and work when the CHs flair up.

I think I will go see if I can find the B-50 tomorrow or a super B-Complex and get some Benedryl, too.  I'm super determined to figure out how to get this to work!  I will post back after tinkering with it for a few days with the results.

Thanks for the tips, Batch!  You da man!
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #339 - Apr 16th, 2015 at 11:45am
 
Hey Kurama,

Thanks for the feedback.  I spent some time discussing the anti-inflammatory regimen with Dr. Stasha Gominak, MD, a neurologist in Tyler TX.  She's been using a similar regimen for her patients with sleep, chronic pain and headache disorders for over six years.

She was seeing similar result to what we've seen with the anti-inflammatory regimen.  However, she also observed an interesting phenomenon that after a year or two on her regimen, a number of her patients started reporting it was no longer working and the symptoms that had been under control and absent for so long were reemerging again.

She ran tests on a number of these patients and couldn't find any reason why they stopped responding.  Then one of her patients called to say she had started taking Vitamin B2 (Riboflavin), like you, and that the vitamin D3 began to work again.

Dr. Gominak ran tests for the B vitamins on some of her other patients who had stopped responding to vitamin D3.  What she found was they all had one or more B vitamin deficiencies...  Her solution was to take a shotgun approach using vitamin B 50 to make sure any deficiencies among the seven B vitamins were being addressed.

Why this happens is still a mystery, but a logical reason follows.  Our bodies need nutrients to stay healthy and it's also clear that vitamin D3 is so essential, our bodies make their own when exposed to the UV-B in sunlight. 

It's equally clear vitamin D3 helps our bodies function more efficiently so it's not unreasonable to assume that many of the processes helped by vitamin D3 also consume other nutrients more rapidly.  This is likely the case with respect to the B vitamins.

The 3-month course of vitamin B 50 should help.  However, Dr. Gominak also cautioned not to take the vitamin B 50 for more than 3 months.  This warning came as some of her patients who had taken vitamin B 50 for more than 3 months started reporting the vitamin D3 regimen had again stopped working.  A few days to a week after stopping the vitamin B 50, the vitamin D3 started working once again.

Bottom line, as you've already been supplementing with most of the B vitamins, you may not need a full three month course of vitamin B 50.

The other interesting thing we've discovered over the last few months is allergies play a major role in CH due to the flood of histamine they cause. As allergies can easily cause a significant increase in frequency and severity of CH, it's best to treat them as soon as you detect any symptoms or experience an up-tic in CH activity.  It's common for some allergies to be sub-clinical, i.e., no obvious symptoms other than an up-tic in CH.

I've found a one-week course of 25 mg benedryl taken 4 times a day every four hours is sufficient while taking the anti-inflammatory regimen.  Benedryl is a potent antihistamine and it's also a CNS depressant that will cause drowsiness, so don't drive if possible and if you do drive, be very careful.

If your CH symptoms return after the week of benedryl, start a second course or 2 to 3 benedryl tablets a day and try to taper off it completely in two weeks.  It takes roughly three hours for oral benedryl to reach a maximum serum concentration and the half-life is 8 to 12 hours depending on age.

As always, please keep your PCP or neurologist in the loop with any change in supplements and medications like benedryl.

Thanks again for the update.

Take care and please keep us posted.

V/R, Batch


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Re: Anti-Inflammatory Regimen Update and Survey
Reply #340 - Apr 17th, 2015 at 7:11pm
 
I'm having one of those days where I feel really defeated.  The B-2 stopped them for one day, then they fired back up.  I couldn't find the B-50, but I found a B-100, so I figured that would work well enough for the time being.  Started the B-100 and the Benadryl almost 48 hours ago.  By my count, my 25(OH)D concentration should be hovering around 107 ng/ml.  I still had 3 CHs last night and had to use the Miganal to get them to stop.  Honestly, the only thing that seems to be working is the Migranal.  If I use it I get about a 48 hour break before they return.

My neuro just upped my Verapamil to 120 mg 3x/day.  So far, that hasn't been working either.  O2 works to stop the first hit, but none of the ones that come after.  The D3 Reg seems to lessen the constant pain I have in between hits, but doesn't appear to be slowing or breaking the cycle.  I'm going to stay the course and hope for the best, but considering nothing other than the ergots have helped to stop them, I have a feeling I'm just going to be waiting them out as usual.  Cry
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #341 - Apr 17th, 2015 at 11:31pm
 
Kurama,

Sorry you're having such a rough time.  Regarding the Vitamin B100.  Take one every other day...  That will give you the same net intake as vitamin B50.  This supplement can take a few days to bring up any deficiency among your B vitamins.

I suspect it's going to take a little longer for the Benadryl to kick in...  Cmax is about three hours and the half-life for adults is 10 to 12 hours...  It still takes a while to block the histamine receptors... longer if you had a big gush of histamines.

Take care and please keep us posted...

V/R, Batch
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #342 - Apr 18th, 2015 at 1:21am
 
Batch, thx a lot for your time spending to help other clusterheads. would you be so kind a post a link to your updated specification including Vit B or else. Thank you
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #343 - Apr 18th, 2015 at 4:35pm
 
Hey Hans,

Good question...  Go to page one of this thread and scroll down...  The latest list of supplements, doses and the basic "How To" are all there.

Take care and keep us posted when you start this regimen.

V/R, Batch
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« Last Edit: Apr 18th, 2015 at 4:35pm by Batch »  

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Re: Anti-Inflammatory Regimen Update and Survey
Reply #344 - Apr 18th, 2015 at 10:13pm
 
i ordered all the different capsules and pills which is not that easy in Germany. i will keep you posted trying to give you some valueable details because we will monitor different parameters at least weekly. my goal beside kicking clusers ass is to link the improvements with changing parameters and to find some benchmarks.

i studied the mechanism of Clusterheadache and had a few discussions with the s c specialist in Germany. after all it is more or less dispappointing. looking forward to do something with a new perspective.

anybody ever added Melantonin 10 mg (NOT RETARDED)?
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #345 - Apr 19th, 2015 at 8:01am
 
Hans,

Thanks for the update you've got the supplements on order.

Regarding the availability of these supplements in Germany... it's always a shame when the MPH bean counters and bureaucrats decide what over the counter supplements you can and can't have.

A CH’er in the UK has found a source for all the needed supplements at iherb.com.  See his post at the following link for details on pricing and how to order them over the Internet:

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You might want to check on pricing as iherb.com gets aggressive with its specials and shipping...  You just need to keep orders under 4 pounds weight.

Regarding Melatonin - We have several CH'ers who have continued with their prescribed CH preventatives and Melatonin while taking the anti-inflammatory regimen with no problems noted.

There are also several CH'ers in Germany using the anti-inflammatory regimen...

There should be some posts about this regimen and possibly other sources for the needed supplements at the following link:
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Take care and please keep us posted.

V/R, Batch
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #346 - Apr 20th, 2015 at 5:25pm
 
Update,

Batch my D3 came in at 96ng/ml, all other labs checked out normal. I tried Claritin and did not help maybe Benadryl would have been better but already was walking zombie due to no sleep. Gave in and started prednisone taper and verap at 400mg a day. Good news is since starting steroid taper no bad headaches for last 5 days and sleeping through night. Tomorrow is last day of taper. Hopefully the verap. is up to speed. I got the vit B complex going. We shall see how things work out. Fingers crossed I can tell the beast is still lurking. Vit d back to 10,000 iu daily. Thanks for all you do.      Jay
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #347 - Apr 21st, 2015 at 12:08am
 
Hey Jay,

Claritin (Loratadine) is a second-generation antihistamine and much larger molecule than Benadryl, so can't get through the blood brain barrier like Benadryl to block histamine receptors in the brain...  Switch to Benadryl if possible.

10,000 IU may not be enough vitamin D3...  I'm presently taking 10,000 IU vitamin D3 in the A.M. along with a 25 mg Benadryl tablet and the same thing at night and that's keeping the beast away.

If I skip one of these doses, the beast comes a knocking...

Your 25(OH)D is fine for normal times... If you've got an allergic reaction in progress... that's not normal and may require a higher serum concentration of both vitamin D3 and 25(OH)D to keep the beast away...  particularly so if your pred taper is ending.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 21st, 2015 at 12:17am by Batch »  

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Tony Only
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Ain't Life Grand


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Re: Anti-Inflammatory Regimen Update and Survey
Reply #348 - Apr 23rd, 2015 at 7:32am
 
Finally I'm back in the range they are able to measure here (350 nmol/l or under). Now my blood test showed 279 nmol/l. I've been pretty accurately 40 days without any vitamins and since starting count was 473 nmol/l (probably a bit higher since I used regimen couple days before I got the first results) it looks like I have been coming down around 5nmol/l per day.

I'm trying hard to figure out at what kind of dose to continue beginning from next blood test (in 3 weeks) since my levels seem to rocket high so easily.
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Kurama
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Re: Anti-Inflammatory Regimen Update and Survey
Reply #349 - Apr 26th, 2015 at 12:01am
 
Ugh!  I win a battle here or there, but I'm still losing the beast war!  Neuro finally upped the verapamil to 360 mg last week, but won't go any higher for another week or so.  I've been on four 25 mg Benadryl per day for a week.  B-100 every other day for a week.  20,000 IU Vitamin D daily along with all the other cofactors.  Still getting hit once every other morning, which is an improvement, but not a victory.  Natural cycle should end in about two-ish weeks, so I'm trying to get this figured out before then.  Mine are spaced so far apart (two to three years between cycles) that I don't have much time to test and tinker.  Not that I'm complaining about the time between cycles, but it would be nice to find something that works when they do hit and to help with the random shadow attacks I get every few months.

I think I'm going to try a few more loading doses of D3.  Any bad juju from going up to 120 ng/ml territory?  150?  By my count, I should still be hovering in 100-110 ng/ml range.

Hope it's going better for everyone else.
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