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Anti-Inflammatory Vitamin D3 Regimen and Survey (Read 103467 times)
Constantine
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #775 - Mar 2nd, 2019 at 7:45pm
 
First of all, I loved going thru this thread again just now. And I loved seeing the updated tips on how to battle this thing.

Anyway, I've fallen off the vitamin D of late. I'm not sure when I stopped. Couldn't have been that long ago. Maybe a week. I started experiencing shadows yesterday and today. Typically, I'll get gradually increasing shadows for 3-4 days before a cycle begins and then I'll get 3-4 days of Kip 6 headaches until a kip 9-10 hits. So the shadows are something of a warning system of sorts. Pre-headaches. Whatever you want to call them.

But, since I started using vitamin D to fight this thing, I have evidence in my headache journal that I've busted at least two cycle attempts by this disease. Once in April 2017 and once in January 2018. Even to this day, I'm skeptical over this treatment, but I have numerous passages written in my journal that are swearing that the Vitamin D is actually stopping the headaches from happening. So I'm cautiously optimistic here. I also had shadow bouts in both June 2017† and June 2018, but they were so short lived (less than two weeks) that I'm not including them here. Vitamin D increases may have knocked those out too.

I woke up with shadows this morning and have had them thru the day. Took 20K vitamin D with co-factors with coffee. Around 1pm I went to the beach for about 90 minutes. 15 of those minutes was without sunscreen to max out Vitamin D from the sun. Floated in the ocean for a while. This basic routine is what I did to break up the last two cycles, so we'll see if it works again.

I did a turmeric shot with a vegan smoothie for lunch. I'll probably go back to the beach for a swim again tomorrow. It's been 82 F every day here so it would be pretty stupid of me not to take advantage of the part of the world I live in if I have the time, which I do.

For some basic background info: I started getting clusters at the age of thirteen, and they absolutely destroyed my life. I had no idea what was happening, my schooling tanked, my family grew to hate me, my friends and teachers too, my behavior became toxic, my anger response was extremely high, and no one cared to understand why nor help. I was just chalked up as a troubled kid.

School and family fell away, and I suffered from headaches regularly but still what I would call episodically. Probably at least four months out of every year from age 13 to 22 were plagued by at least one headache per day.

After age 22 for some strange reason, they became less frequent. I would get hit with a 6-8 week cycle once every two years or so for the next eleven years.

In July 2016 at age 33 the cycle started up again (after the typical two year break). About five days in, I was hit with a Kip 9 headache and went to the ER because I thought I was having an embolism even though I obviously knew that pain all too well. The ER doctor suggested my description of the pain and my history of them sounded like "cluster headaches." I'd never heard a doctor say those words to me before. I googled it when I got home and sure enough....

The past few years have been very hard. I had a severe cycle from October 2016 to January 2017 where I experienced multiple headaches per day. I later realized it was because oxygen only stops the headaches in the short term, primarily only pushing the headache back a few hours. When the headache returns, it always returned angrier and with friends. It took a couple months for me to cease all oxygen treatment. Once I did, my cycle returned to its usual "one per day" normalcy.

When that cycle finally ended, I found this forum and Batch's Vitamin D. The moment I started having shadows in April 2017, I started heavily dosing this regimen. Like I said, it knocked it out pretty definitively. The regimen stopped a cycle again in January 2018, and I have notes in my journal clearly indicating a major drop in headache intensity and duration. The cycle itself was mostly daily shadows that went away after about 4-5 weeks, but I had only maybe 3-4 headaches total during that entire time, all below kip 4 and all lasting less than an hour. Unbelievable!

Again, my routine at the start of a cycle is mainly to just start taking 20-30K vitamin D plus cofactors per day. I typically take 10K per day anyway, but usually 1-2 days per week either I forget to take it or I just want to give my body a rest from it. Since I live in West Palm Beach, I have the option of using the beach pretty much any day I want, so I do as often as I can when shadows hit. I make sure to get 30 minutes of sun in just my bathing suit and without sunscreen every day during these periods. If I get burning in random spots, to continue using the sun, I will sun screen those areas or cover them with a bit of cloth as I lay out.

Beyond this though, I don't do much else. No diet changes, no O2, no verapamil. I've never actually taken verapamil in my life believe it or not, despite nearly 23 years of this. I do know prednisone stops my cycles, but it's hardly what I would categorize as an effective treatment. The last time I used it, it stopped my cycle for two months before coming back in greater severity and length. That's how the neuro treated my July 2016 cycle. Some guy from Yale med school. I do have verapamil and prednisone in my medicine cabinet if I need it and I did take an EKG that showed it would be safe for me to take if I ever had to.

Also worth noting is that I have never had a blood test to test my vitamin D levels, calcium levels or anything else. I know I should. But I have not.

2019 is a big year for me. If I can knock this cycle down yet again with just the vitamin D regimen, and if I can make it to January 2020 cycle-free for the third straight year, then that's it for me. It's official. For me: Vitamin D prevents and controls my cluster headaches. I've been hesitant to say this for a while now as I wanted to accumulate more data for this post, but fingers crossed right now that I have good news to update come January. Obviously I'll be back regardless to update this. And if I get a full-blown cycle soon, I'll definitely be back to ask for advice.

Perhaps for the first time in my life, I'll have a long period of time (three+ years) to be able to reflect on the destruction this disease has caused across all aspects of my life. Getting these in childhood has damaged me in ways that are probably not too dissimilar to someone who experiences chronic child abuse as I suffer from both severe anger issues and severe emotional issues. Who knows though, maybe the clusters aren't responsible for those, but if I had to guess, they probably are, with some bad family stuff thrown in to make it that much worse.

It seems every time though I make some decent progress in moving forward with my life, the headaches come back and all progress is lost.

Here's hoping I can stay cluster free for another year so I keep working on myself and keep growing positively as a person.

Edit: Actually according to my journal, I have had a cycle lasting as short as 28 days when i was a kid because I have an old email somewhere where I wrote this to someone in like 2006 (back when I had no idea what these were yet). But even this information is spotty because I was still recalling a cycle length from the late-1990s.

Just wanted to add that to this post for accuracy's sake, even though I know this is anecdotal.

Second Edit: I also want to add that I currently have two frozen shoulders (adhesive capsulitis). Physical therapy makes it worse. I'm the real kind where it's caused by some sort of disease. I guess this would be a co morbidity. Left shoulder since June 2016. Right shoulder since December 2017. Left shoulder is mostly pain free and range-of-motion is very slowly returning (since about October 2018). Right shoulder however is still experiencing major pain symptoms, but the worst on that front is over. No range-of-motion has returned yet though.

Wanted to add this too just in case it was relevant to this or someone else out there. For this disease, nothing helps but rest, ice and time. That community sadly doesn't have a "Batch" to come up with a solution for everyone. And it's a very miserable, sad community too. And also similar to clusters, the doctors don't know jack. They're arguably dumber and more harmful when it comes to adhesive capsulitis, but it's pretty close to equal arrogance/stupidity levels. A real shame of a reality.
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« Last Edit: Mar 2nd, 2019 at 8:14pm by Constantine »  
 
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Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #776 - Mar 4th, 2019 at 4:32pm
 
Hey Constantine,

Sorry you're having shoulder problems...† You're right, most doctors don't know squat about how to treat frozen shoulders (adhesive capsulitis).† Other than mild physical therapy, the listed treatment modalities for this autoimmune inflammatory disorder are all wrong.

For example, nearly all the listed treatments for adhesive capsulitis call for NSAIDs... aspirin, Tylenol, Ibuprofen, etc.† †Avoid them like the plague.† They all cause microbleeds in the GI tract and brain so have a very poor benefit-risk profile.† The use of steroids should be avoided as well.† They interfere with vitamin D3 pharmacokinetics and pharmacodynamics.

Your first step to recovery from adhesive capsulitis is a change in your diet.† The Atkins or ketogenic diets should work just fine.† Start either with a 24 to 36 hour fast drinking only water.† This burns up glycogen (blood starch) stored in the liver.† After the fast, zero sugars of any kind.† That includes fruit juices, they're loaded with sugar.† Zero wheat products, bread, pasta, cereals, cookies, crackers and pizza.†

No grain oils, canola, corn oil, or imitation butter.† Nearly all grain oils are made from GMO grains.† These have been genetically modified to resist glyphosate... i.e., the herbicide Roundup.† That means these GMO crops can be sprayed with gyphosate to kill the surrounding weeds but not the crop.† This results in the crops being loaded with glyphosate.† If you eat them, you may as well top your salad or fry your food with Roundup!

The law suits over glyphosate being cancer causing are just getting started...† That said, the real danger of glyphosate is it's a herbicide...† That means it kills off the friendly colonies of symbiotic bacteria living in our GI tracts called the microbiome...†

The microbiome is like another organ.† It helps maintain our immune systems and nearly every other physiological process in our bodies.† Keeping the microbiome happy helps keep us healthy.† Taking a good probiotic helps recolonize the microbiome with the right kind of bacteria...† Sugar causes a bloom of bad bacteria and yeast in the microbiome.

Good oils/fats include organic butter, extra virgin olive oil, avocado oil and my favorite, extra virgin coconut oil.

You can eat all the free range organic meat, poultry and eggs you want.† A serving or two of grilled or broiled wild caught fish on a bed of fresh sauteed spinach with a side of green beans or asparagus a week is great.† Avoid carbohydrates (starchy foods like potatoes and rice) for at least a month then limit them to no more than a handful a day after that.

You can eat all the organic NON GMO green and colored veggies you want as long as they're low starch.† Avocados are excellent.† †Onions, garlic and fresh ginger are super foods when it comes to combating inflammation.† Acquire a taste for NON GMO, gluten free kimchi and sauerkraut and eat a serving daily.† Your microbiome will love it.

Limit fruits to a handful of dark berries a day like blueberries, blackberries, strawberries and dark grapes.† No bananas... too much starch.

Drink at least 2.5 liters of water a day...

Swing by your local pharmacy and pick up a bottle of ketone test strips. A few drops of urine on the reagent tip should turn slightly pink to purple.† This indicates ketones and that your diet is free of sugars and starches.† If there's no change in color... you've been cheating...

Why go on the Atkins or ketogenic diet?† Simple... sugar and wheat products cause inflammation and that's the last thing you need with an autoimmune inflammatory disorder like adhesive capsulitis.† The human genome evolved nicely without refined sugar and wheat.† Moreover, the other food types in these two diets help limit inflammation.

Treatments for adhesive capsulitis.† You'll need go a long way to find a better treatment for this disorder that's better than the anti-inflammatory regimen.† The only real issue is the dose to therapeutic response curve.†

In simple terms, the level of inflammation associated with adhesive capsulitis exceeds the anti-inflammatory response capacity of this regimen at the doses we take to prevent CH.† In short, you're going to need much higher doses of vitamin D3 and its conutrients to achieve a higher serum concentration of 25(OH)D.† You're also going to need additional anti-inflammatory supplements like Turmeric (Curcumin), vitamin C and CoQ10.† †

The higher vitamin D3 doses will require supervision by a physician and frequent lab tests for serum 25(OH)D, calcium and PTH.† Finding a physician who understands vitamin D3 therapy is the challenge.

Fortunately for you, the nearest physician with experience in the kind of vitamin D3 therapy that will help you is located in Naples, FL.

Dr. Barrett R. Ginsberg, M.D.
77 8th Street South
Naples, 34102, FL
(239) 325-2015
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I've spoken with Barrett on several occasions and sent CHers his way.† He's great!† Check out his website at the above link and set up a consultation.† You're burning daylight and suffering needless pain if you don't.

Take care and please keep me posted.

V/R, Batch

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #777 - Mar 5th, 2019 at 9:42am
 
Just to add to what Batch has written, since I went ketogenic my lifelong back pain has disappeared (along with my clusters!† Cool). From everything Iíve read AND experienced, a LCHF diet (along with the avoidance of most vegetable oils) seriously reduces inflammation throughout the body, so it may well help with the shoulder. My other general aches and pains appear to have disappeared too, but that could be a case of confirmation bias! My partner has/had an autoimmune disease that responded well to Turmeric, but since we both went keto, itís completely disappeared.

One last thing. If you go ketogenic then you may find that your resistance to sunburn increases. Iíve read countless personal accounts of this benefit. Not RCTís of course, but Iíve seen and heard enough to think it may be true.

Best Wishes

Rightsider
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Constantine
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #778 - Mar 5th, 2019 at 10:09am
 
Batch, unbelievably informative reply as always, and thank you Rightsider for a very cool follow-up as well. This forum is amazing.

Yea, it's pretty dumb to not get my blood tested for this stuff. I'm going to explore all these recommendations you've laid out for me and probably finally get that blood test. Yea, the doctor thing is brutal. So many terrible ones down here.

I also admit my diet hasn't been the smartest thing ever throughout my life... and I do suffer from frequent sports injuries like tendonitis and such (when I was still active pre-2016 before my shoulders started to become symptomatic).

I've pondered Keto for quite some time. And these two posts are putting me over the edge to actually try it. I will convert to Keto now and see what happens. Will update the thread at some point.

Thanks again, guys, for taking the time to help me out.

PS- I've actually read how going Keto helps with adhesive capsulitis, but kind of just read passed it. There's so much bad info out there on this disease that it must've just floated passed my net so to speak.

Second Edit (3:02 PM, the original reply was hours ago): I remember now where I read about Keto helping adhesive capsulitis. On one of the forums for that disease, someone wrote a post how after they switched to keto, their symptoms gradually decreased, but they didn't offer any science behind why or anything. It was just anecdotal. Now I can see why that guy found some success with it. I dismissed it at the time, but still remembered it.

Fast begins at bedtime and will run for 36 hours thru tomorrow. I could stand to lose some weight anyway. Looking forward to taking this journey. I'm actually reading a book right now called I Contain Multitudes about healthy bacteria, so Batch, your post was pretty coincidental to coincide with my reading of that. It's a cool book.
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« Last Edit: Mar 5th, 2019 at 3:06pm by Constantine »  
 
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #779 - Mar 6th, 2019 at 1:45am
 
Hi Constantine

I donít want to hijack the thread/conversation, but I feel slightly compelled to raise a caution about fasting. First of all, I believe fasting is quite simply a fantastic thing to do. Iíve read many benefits from doing it and there are very few people who have anything bad to say about it within polarised world of diets. I totally get why Batch recommended it, itís great for inflammation, and healing due its effect on growth hormone levels. However, whenever I have fasted (intermittent 16/8 breakfast skipping, not multi day) it caused me serious problems. I can only speak for myself on this, though I have heard one other account of a CH sufferer experiencing problems when skipping meals. After going around a week of 16/8, I start to get nocturnal attacks when drifting off to sleep. The problem starts slowly, then builds over weeks until Iím barely getting to sleep because of the attacks. My record was 17 oxygen aborts in one night. Took me a while to figure out what was going on because my daytime attacks were seriously reduced.

So, just a word of caution from me, simply because of my personal experience. Iím not claiming any wider knowledge on this.† It may be perfectly fine for you but be vigilant.

Regards

Rightsider
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Constantine
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #780 - Mar 6th, 2019 at 7:01pm
 
Hey Rightsider,

I appreciate the reply. I'm 23 hours into my fast right now... pretty brutal haha. My goal was to reach 36 hours tomorrow morning at 8am, but I'm going to have a hard time keeping this going once I hit 24 in an hour haha. I don't feel particularly great right now, with weakness and light-headedness, but I can certainly survive til 8pm, when I'll cook myself up my first ever Keto meal. Looking forward to that. I really wanted to make it a full 36 hours here to burn off as much sugar from my liver as possible, but I think it's probably better for me that I eat something tonight. 24 hours is probably good enough, I would hope.

I did go shopping today though and am prepared to eat Keto for the next few days, so that's good. I got some eggs, veggies, sugar free bacon, sauerkraut, dark berries, whole greek yogurt, feta cheese, and raw almonds. I'll grill up some fish or chicken tomorrow night. Overall though, I'm in the process of mentally preparing myself for the long term. Frankly, I'm looking forward to seeing if in six months time my overall health sees improvement. Fingers crossed!

But yea, like you said, I don't want to hijack this thread too much, so any Keto talk I'll direct over to the thread for that. Appreciate the reply though for sure, thank you.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #781 - Mar 6th, 2019 at 9:03pm
 
Hey Constantine,

Happy Birthday!† I know what you're going through with the fast.† Enjoy your keto meal and when done, don't forget the anti-inflammatory regimen.† †Once you start burning fat, you won't feel hungry all the time...† at least that's how it's been for me when starting an Atkins/keto diet as I usually had plenty around the waist to burn.

The real feedback will be an improvement in frozen shoulder discomfort...† I'll be waiting.

Take care,

V/R, Batch
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« Last Edit: Mar 6th, 2019 at 9:03pm by Batch »  

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #782 - Apr 6th, 2019 at 1:24pm
 
So Iíve had an abnormal few months.† Iím episodic and usually have two cycles per year, one in the Spring and one in the Fall, but Iíve been able to skip some of them in the past with the D3 regimen.

But for the past few months, I almost feel like Iíve become chronic.† I started a cycle at the end of October.† Switched over to Bio-Tech D3 50,000 IU every 3 days on November 6th.† That seemed to decrease the intensity and duration of the attacks but my cycle didnít subside until the end of November.

Then, after less than a month, I started getting hit again on December 26th.† Here are the dates of my attacks starting with the original cycle in October:

10/31 through 11/29

12/26 through 1/20

1/25 through 2/12

2/21

3/1

3/8 through the present

Caught a cold on 3/4 so I started taking 50,000 IU/day for a week.

Most of these have been night attacks that have rarely ramped up above a KIP 6 and theyíve been relatively easy to abort with oxygen.† Iím currently been getting hit 1-3 times per night though.

I switched back to taking Now Foods D3 15,000 IU/per day on March 12th.† Hereís my current regimen:

Breakfast:
Now Foods Curcubrain Curcumin 400mg
Kirkland Vitamin C 1000mg
Nature Made CoQ10 200mg

Lunch:
TruNature Probiotic
Kirkland Vitamin C 1000mg
Nature Made Fish Oil 2400mg
Life Extension Magnesium 500mg
Kirkland B-12 Methylcobalamin 5000mcg
Doctorís Best Benfotiamine B-1 300mg
Now Foods Bromelain 500mg

Dinner:
Now Foods D3 15,000 IU
Nature Made Fish Oil 2400mg
Life Extension Magnesium 500mg
Kirkland Mature-Multi Vitamin
Nature Made CoQ10 200mg
Life Extension Super K
Life Extension Curcumin 400mg

Also taking 4 more of the Kirkland Vitamin C 1000mg throughout the day and Benadryl (Kirkland generic Diphenhydramine HCl) every 4 hours including 50mg before bed.

My 25(OH)D blood test from yesterday came back and I'm at 119.0 ng/mL.†

Any suggestions?

Should I try going back to the Bio-Tech D3 50,000 IU every 3 days?
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« Last Edit: Apr 6th, 2019 at 1:32pm by slacker032 »  
 
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #783 - Apr 6th, 2019 at 7:11pm
 
Hey Slacker,

Thanks for the detailed feedback.† At the vitamin D3 doses you've been taking, your 25(OH)D serum concentration should have been a little higher.† That means absorption and/or hydroxylation of vitamin D3 to 25(OH)D3 and on to 1,25(OH)2D3 may be problematic.†

In either case, I would load at 50,000 IU/day vitamin D3 for one week then bump the daily vitamin D3 maintenance dose to 25,000 IU/day for a week to see what happens.† If there's still no change in CH patterns, bump it again to 30,000 IU/day.† I would shoot for a 25(OH)D serum concentration between 140 ng/mL and 150 ng/mL.†

Here's my rationale.† I have problems with allergic reactions, typically April through June.† This requires a higher maintenance dose and higher 25(OH)D response.† A 25(OH)D serum concentration of 117 ng/mL was not enough to prevent burn through CH so I averaged a vitamin D3 dose of 25,000 to 40,000 IU/day to get through the heavy pollen season.

I would also pick up some quercetin. It increases vitamin D receptor (VDR) activity.† Quercetin also acts as an anti-inflammatory and immune system booster.† I order the NOW brand Quercetin with Bromelain from amazon.† The recommended Quercetin dosage is around 12.5 to 25mg per kg body weight. This equates to around 950 Ė 1800 mg/day, for a 75kg person.† I weigh in at 80 Kg so take 2400 mg/day (3 X 800 mg capsules).

Before raising your daily vitamin D3 intake, you'll need to see your PCP/GP for labs of your serum calcium and PTH.† You need to make sure your serum calcium is still within its normal reference range and we need a baseline on your PTH.† My guess your PTH intact is around 25 to 30 pg/mL and it appears keeping it at 22 pg/mL or less means your serum 25(OH)D is in the therapeutic range.

You're collection of supplements look great.† You're also taking enough Benadryl (Diphenhydramine HCL) to stop the effects of most allergic reactions...† That leaves diet as another next step.†

The Atkins - Ketogenic diet is proving effective in reducing the frequency of CH.† Zero sugars, zero wheat products including bread, pasta, cereals, crackers, cookies and pizza.† Avoid grain oils like Canola and corn oils.† Good oils/fats include organic butter, olive oil, avocado oil and my favorite, extra virgin coconut oil. You can eat all the organic free range meats, poultry and eggs you want.† You can also eat all the organic Non GMO green and colored veggies you want.† Limit fruit to a handful a day of blackberries, blueberries, raspberries and dark grapes.

Take care and please keep us posted.

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #784 - Apr 6th, 2019 at 11:23pm
 
Hey Batch,

I'm in the process of finding a new PCP because my current one refuses to order that kind of blood work more than once a year unless it's for a specific malady.† So i actually pay for the 25(OH)D test out of pocket.

I'll try the 50,000 IU/day loading dose for a week and add 1600 mg of Quercetin since I weigh about 70 kg.† I'lll also give the keto diet shot.

As always, thanks for the advice.
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« Last Edit: Apr 7th, 2019 at 2:14am by slacker032 »  
 
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #785 - Apr 9th, 2019 at 5:52pm
 
Hello,

I am returning after my most recent brief bout (in Dec. 2016) with clusters that I attribute killing the spell with the D3 Regimen.

I recently started up with a new cycle a few weeks ago.† †I had been maintenance dosing for the last 2 years at just 5,000 IU D3 plus the 1,000 that my multivitamin provided.

I decided to arbitrarily bump up my dosage to 40,000 IU, and re-added Vitamin B50complex and Vitamin K2 into the mix at the recommended level.† After one week, I upped it to 50,000 IU.† I'm not at I think day 18 with the increased doses.

I did not get lab work done right away, so I don't know what my Vitamin D levels were when they came back.† †I just got it checked today, and my Vitamin D level was 122.27, which after reading this thread, is actually seemingly very high.† †It would seem that the logical thing to do is to go back down to a maintenance dose.

Long story short... I'm still getting blasted both mid-sleep (when I'm not afraid to fall asleep) as well as during the day.† Some days are better than others but no days are cluster free completely.† †

It's also worth noting that the recent spell is accompanied by what we believe is a pinched nerve in my neck that we are also working on, but it's been giving my left back shoulder (the headache side,) and sometimes all the way down to my elbow, some pretty rough days itself.† Actually to be honest my shoulder is kicking my butt every day.† This started right around the same time as the clusters.

I'm starting a 3 day each 80/60/40/20/10 Prednisone taper today, because, frankly, I don't know what else to do, and I have missed a lot of work in the last two weeks.

Also, from a diet standpoint, I have not gone keto, but I have consciously reduced by intake of breads and cereals and have cut out any sweets/candy, etc.† †Just drinking water throughout the day, and a morning coffee.

I'd just like to add my thanks to everyone who participates here and adds their own experiences.† It's very interesting, albeit unfortunate (because clusters suck,) to see all of the similarities as well as differences in our experiences.

And Batch, just a side note, when I started getting them again, one of the first things my wife said to me was "you should go read what that Batch guy said again."† Grin
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« Last Edit: Apr 9th, 2019 at 6:52pm by eeallen »  
 
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #786 - Apr 9th, 2019 at 6:34pm
 
Hi eeallen,

check out this thread on our sister site clusterbusters.org

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #787 - Apr 9th, 2019 at 10:01pm
 
Many thanks Jon...

That was a great thread.  It amazes me how educated so many people here are on clusters and their potential root causes, etc.  It's a testament, unfortunately, to how bad these really are, and the seemingly general lack of attention they get in the medical community itself.


Since I started the ever-dreaded Prednisone taper today, I'm hoping that at least this time, it can serve a sort of dual purpose for both my clusters as well as potential pinched nerve that it seems I have in my neck, in conjunction with some therapy/traction that i'm using.  Currently I have issues with certain neck stretches cause pain/tingling into my left shoulder and elbow.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #788 - Apr 9th, 2019 at 10:55pm
 
Hey Eeallen,

Nothing wrong with a 25(OH)D serum concentration of 121 ng/mL... unless it was 121 nmol/L in which case, it's too low for a therapeutic response for CH.

I've kept my serum 25(OH)D between 120 ng/mL  and 188 ng/mL over the last three years with average maintenance doses as high as 40,000 IU/day.† My PCP has no problem with my 25(OH)D this high as long as my serum calcium remains within its normal reference range... and it has...† †I needed it this high due to heavy pollen count so I suspect you're having the same problem.† Allergy! An allergic reaction dumps a load of histamine into your system that makes just about all CH interventions less effective.

Accordingly, many CHers having trouble kick starting the anti-inflammatory regimen find that a week to 10 day course of Benadryl (Diphenhydramine HCL) at 25 mg every four hours throughout the day and at bedtime helps kick start the vitamin D3 CH preventative effect. Just be careful and not drive if possible as this much Diphenhydramine will make you drowsy.† If you need to drive during the day, wait until you're home for the day then take 50 mg of Benadryl (Diphenhydramine) as you walk through the door and another 50 mg at bedtime.

I kept my maintenance dose of vitamin D3 between 30,000 and 40,000 IU/day while on the Benadryl (Diphenhydramine HCL) for at least a week after a CH pain free response then tapered the dose back down to 15,000 IU/day over a 10 day period.

Prednisone is a double edged sword for CHers on the anti-inflammatory regimen. On one hand it functions as an anti-inflammatory which helps reduce the frequency of CH.† On the other hand, it slows the genetic response to vitamin D3.† The Pred taper should give you an indication one way or another.† If it reduces the frequency of your CH, great!† The vitamin D3 should help hold down the CH frequency after that and hopefully cause a complete cessation of your CH.

Once you get back to a CH pain free state.† STAY ON THIS REGIMEN YEAR ROUND...† That will keep the CH beast from jumping ugly when you least expect it.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 10th, 2019 at 6:13am by Batch »  

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #789 - Apr 10th, 2019 at 7:52pm
 
Many thanks Batch.† Since starting Prednisone yesterday afternoon I actually have not had an attack since yesterday afternoon, so that's actually a somewhat normal response for me during the short duration that I do run a Pred taper... the problem of course, as you mentioned, is what happens afterwards.

With the 122 ng/ml I have decided to run down my D3 intake to 20,000 IU / day (from the 50,000 IU I was taking, with no response,) plus whatever natural sun intake and an extra 1,000 from my multivitamin.

My current plan is to see how it goes with that and if I come off the taper pain free then move down to the 10,000 IU maintenance dose.

I'm also taking a morning and evening Benadryl now.† Thanks.
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« Last Edit: Apr 10th, 2019 at 7:52pm by eeallen »  
 
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #790 - Apr 11th, 2019 at 9:23am
 
Hey EEAllen,

All good moves...  The proof of efficacy will come when you've completed the pred taper plus a day or two to wash out the residual pred.

Take care and please keep us posted.

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #791 - Apr 12th, 2019 at 12:05pm
 
Hi all,
Iím looking for some advice along with a little reassurance about my current D3 regime. I did not do the loading dose but rather I started with 10k iu D3 & cofactors when my cycle began.  I was on that for 8 days before I could get to the Dr for my 25(OH)D. I wanted a baseline prior to loading. My results at 8 days were 25(OH)D 52.4, PTH 17, Calcium 9.7. I then increased my dose to 20k iu for the next 38 days. I will say at the 38 day mark this was the best cycle I have ever experienced in 27 years with CH as far as frequency & intensity.

I went back to the Dr on the 38th day to recheck my blood work. My 25(OH)D now 104, PTH 23, Calcium 9.8.  My Dr highly suggested I discontinue all D3 supplements as she said my level was ďdangerously highĒ. This of course scared me so I brought my dose down to 10k that day, then 5k the next day, then zero vitamins the following day.  The night with zero vitamins my CH hit with vengeance. The next day I went back on 15k but it proceeded to be the worst CH week of this entire cycle.  I have now been taking 15k for the last 6 days and relief is finally back.

My question is, I only went one day without any D3 & my cycle ramped up immediately, is it possible my levels dropped that quickly?  Also, my blood work was 9 days ago when my 25(OH)D was 104, I donít want to increase my 25(OH)D any higher but I also donít want to be in pain so how do I know what maintenance dose to continue to take without increasing my D3? I am 5í2 114lbs if that matters.  I am not quite in remission but feeling like I am very close. 

I should also note that I have friends sending me articles about how dangerous high doses of D3 are for you.  Iím trying to not let it get in my head, but every day I take my D3 Iím wondering if my kidneys are gonna shut down lol. Any advice on how I should move forward is greatly appreciated.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #792 - Apr 13th, 2019 at 12:06pm
 
Hi LAW,
I hope Batch responds soon, but I'll put in my two cents. Not taking the D3 for a day shouldn't have triggered attacks. But an allergic reaction can do that. When my CH breaks through, I don't start raising my dose until I try taking Benedryl (dyphenhydramine). This will often fix the issue. It will make you drowsy, so I don't take it until evening, unless I don't need to drive anywhere. Batch has mentioned this additional drug and dosage a lot lately, so read back in this thread a little, and you will find it. I wouldn't panic over your 104 bloodwork number if your calcium and PTH remain in the normal range, but Batch is definitely the one who can help you get your dosing regimen straightened out.† I would PM him directly for some advice. Sorry you have to deal with this new recurrence. Keep us up to date on how you are faring.

Take care,
Patti
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #793 - Apr 13th, 2019 at 12:42pm
 
Hi Patti,
Thanks so much for your reply.  I should have mentioned that I am taking Benadryl, 50 mg at night like Batch recommends but the HA are still breaking through.  Last night I was hit every hour,  frequency was high but intensity was low.  02 aborted everyone but they persistently returned.  I'm at the stage in my cycle were there is enormous pressure in the back of my skull every time my head hits the pillow.  Around 4am I finally just resorted to my recliner for the remainder of the night.  I have emailed a bit with Batch since my last cycle in 2017 when I first tried the D3, he has been so helpful.  I emailed him a week or so ago when I received my last blood work results but thought I would post here for some insight from others on the regime while I await his response.  I'm just about 7 weeks in so hoping this cycle is coming to an end soon.  I did not stay on the regime in 2017 when my cycle ended and I don't want to make that mistake again which is why I'm trying to find a healthy maintenance dose.  Thanks again for your advice & reassurance Patti!
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #794 - Apr 13th, 2019 at 10:03pm
 
Hey LAW,

The 25(OH)D lab test is a very poor indication of vitamin D3 intoxication/toxicity.† Physicians who say a 25(OH)D serum concentration of 101 ng/mL is "dangerously high" have apparently not connected the dots between calcium homeostasis and the pharmacokinetics of vitamin D3... particularly if the serum calcium concentration is within its normal reference range.

The 25(OH)D normal reference range of 30 to 100 ng/mL (75 to 250 nmol/L) is artificially low and very conservative, likely as the result of Big Pharma influence.† Big Pharma doesn't want people to know how effective vitamin D3 can be in treating and preventing a wide array of medical conditions because they want to sell their patented pharmaceuticals.† Their business model is based on the principal that there's no profit in healthy people.†

The only valid indication of vitamin D3 toxicity is the lab test for serum calcium.† If your serum calcium concentration is above it's normal reference range, that is when you stop taking vitamin D3.† Until then, as long as your serum calcium remains within its normal reference range, there's no hypercalcemia a.k.a., an indication of vitamin D3 toxicity so the actual 25(OH)D serum concentration doesn't really matter... even if it's above 100 ng/mL.†

It is also important to note that roughly 1% of the general public suffers from a mild to moderate form of hypercalcemia without taking any vitamin D3. Most of them have an abnormally high level of PTH.† This is a good reason why CHers who want to start the anti-inflammatory regimen should see their PCP/GP for labs of their serum 25(OH)D, calcium and PTH before starting this regimen.

For reference, over the last three years I've maintained my 25(OH)D serum concentration between 120 ng/mL and 188 ng/mL with average vitamin D3 doses between 25,000 IU/day and 40,000 IU/day.† I've done this to remain CH pain free during periods of high pollen or mold spore count.† My PCP has no problem with my 25(OH)D serum concentration being this high as long as my serum calcium concentration remains within its normal reference range...† and it has.

Regarding a spike or return of CH if you miss a day of vitamin D3 during the first month after starting this regimen...† The short answer is the parent vitamin D3 and 25(OH)D molecules pass from the bloodstream directly into cells in the periphery throughout the body where they are hydroxylated to 1,25(OH)2D3 the genetically active vitamin D3 metabolite responsible for preventing our CH.†

This is particularly important when it happens to neurons within the trigeminal ganglia where 1,25(OH)2D3 down-regulates the synthesis of Calcitonin Gene-Related Peptide (CGRP), Substance P (SP) and Vasoactive Intestinal Peptide (VIP), all of which play a role in triggering neurogenic inflammation and the terrible pain we know as CH.

Accordingly, missing a dose of vitamin D3 during the first month of this regimen or before the 25(OH)D has reached a therapeutic concentration of 80 ng/mL, means the CHer is likely going to get hit.† This is another great reason why CHers should start this regimen with th 12-Day accelerate vitamin D3 loading schedule at 50,000 IU/day vitamin D3 for 12 days then lower vitamin D3 intake to an initial maintenance dose of 10,000 IU/day.† See the following notional chart on the benefit of starting this regimen with the 12-Day vitamin D3 loading schedule.
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Regarding the use of a first-generation antihistamine like Benadryl (Diphenhydramine HCL).† The dosing scheme for Diphenhydramine is designed to maintain a relatively high serum concentration for roughly 18 hours.† That's why it should be taken every four hours throughout the day and at bed time.† This helps make sure its serum concentration is higher relative to the serum concentration of histamine.

In simple terms, if the histamine H1 receptor is already occupied by histamine, the first-generation antihistamine will be ineffective.† Moreover, these histamine H1 receptors operate on the basis of first come first serve.† This means if the histamine serum concentration is higher than that of the Diphenhydramine (due to infrequent dosing), the histamine H1 receptor has a higher probability of being occupied by histamine.

If on the other hand, if there's a relatively stable serum concentration of Diphenhydramine and it is higher than the serum concentration of histamine, the probability of Diphenhydramine blocking histamine H1 receptors goes up.† This helps prevent histamine from stimulating the release of CGRP and that helps vitamin D3 prevent CH.

I hope this answers the questions.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 13th, 2019 at 10:41pm by Batch »  

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #795 - Apr 14th, 2019 at 9:30am
 
Hey Batch,

Yes, your response answers all of my questions and then some.  I am now very clear on why my 25(OH)D is insignificant compared to my PTH and Calcium numbers.  One would think a Doctor would understand the important connection between all three rather then being an alarmist over just the elevated 25(OH)D.  None the less my anxiety is now eased & I will continue down this D3 path.

For anyone reading this that is considering the D3 Regime please note: I did not do the loading dose at the beginning nor am I taking Benadryl every 4 hours as suggested, I thought just taking it at night would do the trick. This is most likely why at 50 days into my cycle it's still all over the place.  Don't do I as I did but rather do as as Batch & the Regime suggest.  It will save you a lot of painful nights.

As always, thank you Batch!  The amount of time you take to help people with the D3 regime is truly commendable.

All the best, LAW
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #796 - May 8th, 2019 at 1:44pm
 
Hello Batch and all!† I must say, I'm not excited to be back on this forum.†(No offense - you're all lovely but I'm sure you understand Smiley ) My wife had a bout with what we fully believed were clusters back in 2014 for 2 months.† They came back briefly in 2015 while she was pregnant and she battled them back with the D3 regimen and they were gone in 2 weeks.† Last week they started hitting her hard again every other night.† The first time around her neuro said she couldn't have CH because she was a woman.† This time around she went to the neuro yesterday and saw the female P.A., who said the are "probably" clusters, but she still isn't 100% sure because they are so rare.† †Angry

Anyway, she prescribed her a dexamethasone taper over the next 4 days as well as Imitrex tablets. (I know people recommend injection or nasal, but the tablets were actually relatively effective in either aborting or vastly reducing severity the last two times so we stuck with that to see how it would work.)† That prescription was just filled today.

She started the D3 regimen again loading 50K IUs on Sunday.† (She had been off of it for a few years.)† Last time she started seeing improvements within 2 days but as of last night they were still hitting her hard.†

Two questions:

- I thought I read somewhere that the steroid tapers might actually interfere with D3 absorption.† Is that the case?† My hope was the (hopeful) 4 day relief from the steroids would let the D3 build up in her system.† Am I thinking about that correctly?

- Secondly, she has been using her prenatal multivitamin in place of the Costco Senior MV.† I wonder if this would be leaving out something crucial that would inhibit the effectiveness of this regimen?† I've tried to attach a picture of the supplement label here - so hopefully it work.† But it's the Nature Made Prenatal with DHA.†

Thanks so much for any feedback here!† As a husband, it's so hard to helplessly watch her go through this and there is absolutely nothing I can do.

(Side note, she hasn't had the 25(OH)D test this time around, but she was on the lowest end of the "acceptable" spectrum when she had the test in 2015 before she started taking the vitamins.)
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #797 - May 8th, 2019 at 4:52pm
 
Hey MJ,

I know how bad it can be when the CH beast jumps ugly after a couple years remission.  Your wife is on the right track starting this regimen with a loading schedule.  I sent you an email that should explain why she needs to do the full 12-Day loading schedule at 50,000 IU/day for 12 days.  She also needs to double her magnesium dose during the vitamin D3 loading schedule to 800 mg/day split am/pm to avoid osmotic diarrhea.

The Kirkland brand adult 50+ mature multi has most of the vitamin D3 cofactors.  It just doesn't have enough magnesium or any vitamin K2.  CHer feedback indicates the mature multi is more effective than other multi vitamin mineral formulations when taking this regimen.

Steroids will slow the both the pharmacokinetics and pharmacodynamics of vitamin D3.  That said while taking 50,000 IU/day vitamin D3 and only a 4-day burst dose of steroids, the impact on vitamin D3 should be minimal.

Please let me know if you got my email.  Take care and please keep us posted.

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #798 - May 8th, 2019 at 8:06pm
 
Thanks so much Batch! I did get your email but didnít notice it before I posted.† Smiley. Thanks for the advice. Today is the first day of the steroids and 4th day of D3 loading so praying she gets some relief tonight. Sheís a terrible combination of scared, anxious, and exhausted right now.

Do you think the Benedryl is ok with the steroids?
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #799 - May 8th, 2019 at 9:51pm
 
MJ,

There shouldn't be any problems taking sterioids and Benadryl (Diphenhydramine HCL).† Steroids are anti-inflammatory agents and Diphenhydramine HCL blocks histamine H1 receptors so both should help reduce the effects of CGRP expressed during CH.

Make sure your wife is drinking 2.5 liters/day of water and get her started on the Atkins-Ketogenic diet.

Take care and please keep us posted.

V/R, Batch

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