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Anti-Inflammatory Vitamin D3 Regimen and Survey (Read 103332 times)
Mjedwards409
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #800 - May 10th, 2019 at 10:48am
 
Good news and bad news.  She's on her 3rd day of the steroid taper and today will be day 6 of the D3 regimen.  We still need to pick up the Vitamin K and switch from Prenatal to Mature Multi. 

Bad news is she got hit last night, the good news is that the Imitrex tablet stopped it in 10 minutes and she got back to sleep immediately.  I'm really nervous because last time she did a Pred taper it stopped them dead for 6 days but she got hit with a vengeance when they came back. Also D3 had her PF in 3 days last time. For her to get even a little hit in a steroid cycle and 6 days after starting D3 I'm terrified they are going to come back hard after the taper is done.   Embarrassed  Am I overreacting? 

Also she hasn't done Benedryl yet and has been a little hesitant.  She is alone taking care of our two little ones all day and it does make her drowsy.  Should we maybe start her on two Benedryls before she goes to bed each night and see how she does?
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #801 - May 10th, 2019 at 12:08pm
 
Hi there,

I am a full time carer since my wife had serious surgery last year, and need to be pretty sharp during the day, as she needs a lot of meds and care.

When needed,† I take one 50mg Benadryl at night (not later than 10:00 p.m.) and sleep very well.

I always wake at 7:30 a.m. with no drowsiness at all.

Peter.
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« Last Edit: May 29th, 2019 at 5:24am by Peter510 »  

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Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #802 - May 10th, 2019 at 6:18pm
 
MJ,

The simple solution is to put the kids on this regimen at 50 IU per pound of body weight per day of vitamin D3 AND have your wife start a week to 10 day course of Benadryl (Diphenhydramine HCL).  I'm quite confident maternal instincts will override any drowsiness associated with Diphenhydramine...

My youngest two grandchildren and grand niece have been bathed in maternal vitamin D3 at 10,000 IU/day since concetption and through breast feeding...  They're awesome!

Take care and please keep us posted.

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #803 - May 11th, 2019 at 8:54am
 
Thanks Batch and Peter.  Much appreciated.  She took 50mg of Benadryl last night before bed.  Yesterday was still a 50,000iu loading day of D3 (day 5) and day 3/5 of the steroid taper.  She got hit at 4AM instead of her usual 2AM.  Took an Imitrex tablet which took a little longer to kick in and the pain was more intense, but after about 15-20 minutes it was down to just a very small shadow and she went back to sleep.  I'm going today to pick her up the Mature Multi and the Super K arrived from Amazon yesterday so she took her first dose of that. 

Hopefully going on day 6 this will kick in soon. After the mature multi she will be taking:

1 Mature Multi
2400mg Fish Oil
50,000iu D3 (Nature's Bounty 5K iu softgells)
400mg Magnesium Oxide
1 Super K
50mg Benadryl before bed

Is Oxide ok for the Magnesium as long as her stomach is tolerating it well?

Also.....it's like pulling teeth to get her to drink enough water.  Can I safely tell her that not taking enough water is bad for CH and the D3 regimen?  (She can be stubborn  Tongue )
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #804 - May 12th, 2019 at 8:26pm
 
Hey MJ,

Your wife is off to a good start on the anti-inflammatory regimen.  She needs to double the magnesium dose while loading to 800 mg/day split 400 mg with breakfast and 400 mg with the evening meal.  10 to 12 hours between magnesium doses =10 to 12 feet of GI tract travel so that minimizes the possibility of osmotic diarrhea. 

I suspect her response to the anti-inflammatory regimen will improve when she completes her steroid taper.  Although vitamin D3 has no effect on the physiological activity of steroids like prednisone, steroids slow vitamin D3 hydroxylation (metabolism) and this will slow the vitamin D3 capacity to prevent CH.  Fortunately, this effect is minimized while loading vitamin D3.

You can safely tell your wife that dehydration increases CH and migraine pain levels.  Drinking 2.5 liters of water a day increases absorption of vitamin D3 conutrients making this regimen more effective. 

If you don't get the Adult 50+ Mature Multi soon, pick up some 3 mg Boron tablets and have her take one a day.  Boron down-regulates 24-Hydroxylase, the enzyme that decreases the effectiveness vitamin D3 by converting it to inactive metabolites the body dumps over the side in urine.

Take care and please keep us posted.

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #805 - May 13th, 2019 at 8:30am
 
Batch - As always thanks so much for the thorough feedback and always being enthusiastically willing to help. Quick update - my wife has been two straight nights without a CH. Iíve forced her to drink more water, she added the Mature Multi to the cocktail, as well as the Vitamin K and 50mg Benadryl before bed. That said, we arenít counting our chickens yet because yesterday was the last day of the steroid taper. Sheís going to stay on the accelerated loading cycle of 50K iu of D3 for 12 days. (Sheís 7 days in now)

Still not letting ourselves get overly comfortable as I know the true test will be this week as the steroid leaves her system. She has the Imitrex which has worked every time so if she gets hit even once weíll have the O2 fight with the doctor.

Batch do you still think she needs to add the 400mg extra Magnesium if sheís currently responding well or should we add it for now proactively?
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #806 - May 13th, 2019 at 4:39pm
 
Hey MJ,

Thank you for the reply and the wonderful news your wife is CH pain free.† As your wife is already responding to this regimen, it's dealers's choice on taking the extra magnesium.† I say she's responding to this regimen because if she wasn't, the end of her steroid taper wound have been marked with an increase in CH frequency.

That said, as vitamin D3 metabolism consumes magnesium and your wife is taking 50,000 IU/day, it's still a good idea to double the dose while loading vitamin D3.

Please remember to have your wife see her PCP/GP for lab tests of her serum 25(OH)D, calcium and PTH after 30 days on this regimen.† You're looking for an initial 25(OH)D target serum concentration around 80 ng/mL with calcium and PTH concentrations within their normal reference ranges.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: May 13th, 2019 at 4:40pm by Batch »  

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #807 - May 14th, 2019 at 9:35am
 
Thank you Batch for the feedback.  She did add the extra 400mg of Magnesium yesterday in the morning, and the rest of the regimen with dinner. (Still at 50K iu)  Also took 50mg Benadryl before bed with tall glass of water as she has the last 3 days.

Unfortunately my fears were realized last night and she got hit with a vengeance after her first full day off of the steroid taper. Right after she dozed off to sleep. Tough to put it on a KIP scale since this is only her 3rd cycle, but one of her worst ones ever and it lasted every bit of 90 minutes. Imitrex tab and Red Bull didn't even touch it. (Generally the tablets give her relief within 15-20 mins)

She's going to call the doctor today about O2 and also has an MRI today just to rule out anything underlying.  Really disheartened right now and frustrated that the doctor prescribed the steroid taper with absolutely nothing to help on the back end.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #808 - May 14th, 2019 at 11:55am
 
Hey MJ,

I'm sorry your wife is having such a rough time.  The Rx for oxygen therapy is essential at this point.  Make sure the Rx is written as follows, "Oxygen therapy at a flow rate of 15 liters/minute with a non-rebreathing oxygen mask as an abortive for cluster headache'. 

If it's not written this way, O2 providers will assume COPD is the condition being treated and require your wife's doctor to provide oxygen saturation data.  This will slow down and prevent the Rx from being filled promptly.  The MRI is prudent.

Has your wife started the Atkins-Ketogenic diet with zero sugars and zero wheat products?  This is essential for CHers having trouble kick starting the anti-inflammatory regimen.  Sugars and wheat products tend to stimulate food borne allergic reactions.  During an allergic reaction, mast cells degranulate (dump) histamine and other neuroactive compounds into the blood stream and surrounding tissues.

On a related note, I'd also suggest your wife shift her Benadryl (Diphenhydramine HCL) dosing to 25 mg every four hours throughout the day and 25 mg at bed time. 

The reason for this dosing schema is simple once you understand what's happening.  Histamine released during allergic reactions triggers neurons within the trigeminal ganglia to express calcitonin gene-related peptide (CGRP) that's responsible for the neurogenic inflammation and pain we know as CH. If the histamine H1 receptors are already occupied with histamine, first-generation antihistamines like Diphenhydramine will be ineffective. 

Maintaining a constant serum concentration of Diphenhydramine with frequent doses increases the probability it will find an unoccupied histamine H1 receptor before a histamine molecule arrives. When the majority of histamine H1 receptors have been blocked, the genetically active vitamin D3 metabolite, 1,25(OH)2D3 will be able to down-regulate the expression of CGRP and this is the mechanism of action that prevents cluster headache.

Take care and please keep us posted.

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #809 - May 14th, 2019 at 5:44pm
 
Thanks so much Batch.  My wife is a stubborn woman, and comes from a French/Italian heritage so she'd probably opt for having her hypothalamus cut out of her head before she'd go Keto.  I'll keep trying to fight that fight.  I think she'd have to be convinced that this was going to come more often than once every 5 years before she'd consider it.

I'll also try to convince her on the Benadryl more regularly.  Would 25 mg at dinner time (630PM) and 50mg before bed (1000PM) be a suitable alternative if she's unable to take it during the day?

Her doc prescribed Verapamil which I'm going to pick up tonight along with Imitrex nasal spray. (Tablets have stopped working)   I'm praying that the d3 regimen starts kicking in ASAP...I was really hoping she wouldn't need to start Verapamil. 

O2 is going to be a whole other cluster****.  (Forgive the ironic phrasing)  I started a new thread for that, but lucky us apparently GA is one of the more restrictive states so either we pay nearly $1K per month or look at the welding O2 route.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #810 - May 26th, 2019 at 9:03am
 
Good Morning,

So I am new to this site as I am a husband to a wonderful 26 year old wife who is struggling with this beast now for the past three years. I am hoping she is still episodic but this bout has been horrible. She use to respond to Indomethacin but recently has not so here we are.

I have started her on the D3 regimen three days ago. 50,000 IU per day with the other vitamins listed on the link. She hasnít responded just yet. I have O2, sumatriptan injections, indomethacin, etc., but nothing works outside of injections on which we are about to run out. Our neuro suggested that we go on a high indomethacin dosage which consist of 75 mg 3xís per day. We started this two days ago. We have also had two nerve block injections and will go back for our third on Tuesday.

I wanted to reach out and see if anyone had any other recommendations for us? I have her 50 mg of Benadryl last night to try and make it through the night but itís been the worst night yet with 4 headaches. Please let me know your thoughts.

Thanks
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #811 - May 26th, 2019 at 10:37am
 
I also forgot to mention she is also taking 300 MG of topirmirate before bed. We also have the GammaCore which helps only sometimes. I want to make sure that some of these medications are not cancelling the effects of the D3 regimen. Itís also very hard to get her to eat a good meal as the sumatriptan injections upset her stomach. Iím hoping that the sumatriptans arenít giving her rebound headaches as well.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #812 - May 26th, 2019 at 8:03pm
 
Hi  Kevin...welcome...what is her diagnosis? Indo rarely works for CH and topiramate is a secondary line treatment with LOTS of potential significant side effects. OXYGEN is the primary abortive...any experience with proper flow, mask and technique?

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #813 - May 26th, 2019 at 11:10pm
 
Jon

Thank you for the response.  At first a couple years ago she was diagnosed with Hemicrania Continua as she responded well to Indo. Last year during this time she started a cluster cycle that was nothing like HC. Her neurologist diagnosed her with cluster but also kept her on indo. Hence why she is currently having her take a high dose of indo and tapering off to see if it breaks the cycle. Currently is has done nothing. This is why I resorted to the D3 regimen. She has only been on it for three days so Iím crossing my fingers that something happens. We have O2 but Iím worried itís not enough to last past this holiday as she is getting an average of 8 in 24 hours.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #814 - May 27th, 2019 at 7:17pm
 
Hey Kevin,

As your wife is having a high frequency of CH/day it's very likely she's experiencing a CGRP cascade.† Have her start a week to 10 day course of a first-generation anithistamine like Benadryl (Diphenhydramine HCL) at 25 mg every 4 hours during the day and at bedtime.† Make sure she doesn't drive as this much Diphenhydramine will make her drowsy.† Have her continue the vitamin D3 loading schedule at 50,000 IU/day, double the magnesium to 800 mg/day and bump the Omega-3 fish oil to 4000 mg/day while loading. Above all, make sure she's drinking at least 2.5 liters of water a day.† Soda and coffee don't count.

The rationale for the first-generation antihistamine is she is likely experiencing an allergic reaction to either airborne or food borne allergens.† These allergic reactions are frequently subclinical with no outward or obvious symptoms, but the allergic reaction is still there causing mast cells to degranulate (dump) histmine into surrounding tissues and bloodstream.

Histamine triggers neurons within the trigeminal ganglia to express calcitonin gene-related peptide (CGRP), the nasty neuropeptide responsible for the neurogenic inflamation and the terrible pain we know as CH.† It gets worse.† The CGRP in turn triggers mast cells to dump even more histamine.† This becomes a brutal, circular chemical chain reaction called a CGRP cascade characterized by a high frequency of CH >4/day and frequently up around 8 to 10/day-night. This CGRP cascade continues until one or more of the reactants are consumed at which point the chain reaction stops and so does the CH... for now...† Unfortunately, the body recharges mast cells and neurons with the nutrients to synthesize more histamine and CGRP.† This process takes roughly an hour.† After that, the CH beast is ready to jump ugly and frequently does.

The Diphenhydramine crosses the blood brain barrier (BBB) from the bloodstream into the brain where it enters neurons within the brain to block histamine H1 receptors at the genetic layer.† Blocking these histamine H1 receptors interrupts the circular chemical chain reaction, stops the CGRP cascade and this allows vitamin D3 to further down-regulate the expression of CGRP.

Food borne allergens are actually very common.† The best way to find out if this is the case is to start the Atkins-Ketogenic diet.† There are several recent studies that have found the Atkins-Ketogenic diet is an effective migraine and cluster headache preventative.

This diet is actually very easy.† Start it with a 24-hour fast drinking only water and taking the anti-inflammatory supplements.† When the fast is over, it's zero sugar† (no fruit juices), zero wheat products (Bread, pasta, cookies, crackers or pizza).† Avoid grain oils like Canola and Corn Oil.† Good oils/fats include organic butter, extra virgin olive oil, avocado oil and my favorite, extra virgin coconut oil.

Your wife can eat all the free range organic meats, poultry, eggs and cheese she wants.† A serving or two of wild caught fish a week is great.† She can even eat at Mickey D's if she orders her Big Mac with no bun or fries and drinks water (I do this when I need a Big Mac fix). She can eat all the organic Non GMO green and colored veggies she wants, but should avoid high starch veggies and fruits like potatoes and bananas.† Limit fruits during the first month to a handful a day of dark berries like blackberries, blueberries, raspberries and dark grapes.† Again make sure she's drinking at least 2.5 liters of water a day.

The following chart illustrates responses by day of CHers starting the anti-inflammatory regimen.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Other things to add if there's no response after a few days on the Benadryl include, 300 mg/day CoQ10, 1000 mg/day Turmeric (Curcumin).

Now is also a good time for your wife to see her PCP/GP for lab tests of her serum 25(OH)D, calcium and PTH.

Take care and please keep us posted.

V/R, Batch

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« Last Edit: May 28th, 2019 at 9:55am by Batch »  

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #815 - May 28th, 2019 at 4:02am
 
jon019 wrote on May 26th, 2019 at 8:03pm:
what is her diagnosis? Indo rarely works for CH and topiramate is a secondary line treatment with LOTS of potential significant side effects. OXYGEN is the primary abortive...


My first thoughts too. Indomethacin is often used as one of the diagnostic tools for HC (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register), not CH and it isn't one of the standard medications used for CH, so it is unusual for it to be used for CH.

It is also possible for people to have more than one headache type, with the most common combination being CH and migraine, but lots of other combinations are possible. This is one of the reasons why we always direct people to see a headache specialist.

Read up and ask all the questions you have - we are expert patients.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #816 - May 28th, 2019 at 3:03pm
 
Mike,

Great point.† Mixed headache pathologies have a higher incidence than available open source data would have you believe.† These mixed headache pathologies can also confuse diagnosis as well as treatments, particularly when patients present with both pathologies for the first time.

A CHer in Finland sent me the results of a survey of CHers there who also suffered from mixed headache pathologies.† 252 CHers took part in the FaceBook survey, 115 CHers (45.6%) reported they also suffered from Migraines. 13 CHers (5%) reported they've been diagnosed with two additional headache pathologies.  When you consider that half of Finland lies above the Arctic Circle where cutaneous vitamin D3 from sunlight is lowest of any nation, a higher incidence of mixed headache pathologies like this are not all that surprising.

As a side note, I've just started working with two CHers also diagnosed with migraine, one CHer also undergoing chemotherapy, and one migraineur with aura.† Although not a pathology, I'm also working with an episodic CHer who is 4 months pregnant.† All five have started the anti-inflammatory regimen.

Take care,

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #817 - May 29th, 2019 at 3:16am
 
Well I've been diagnosed with CH and migraine, which is why I always remember to mention it.

It took D3 to get my CH in check, but only when I really did keto properly did it get rid of the majority of my migraines too.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #818 - Jun 2nd, 2019 at 7:47pm
 
Hello again, so we have been on the D3 regimen for ten days now and so far so good. My wife is having severe anxiety and her body doesnít feel right. Is this a symptom of the large dose of Vitamins she is taking? How long do you have to take an excessive amount of D3 before you have to worry?
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #819 - Jun 3rd, 2019 at 3:51am
 
Kevin Omachel wrote on Jun 2nd, 2019 at 7:47pm:
My wife is having severe anxiety and her body doesnít feel right. Is this a symptom of the large dose of Vitamins she is taking? How long do you have to take an excessive amount of D3 before you have to worry?


I've not seen people posting about getting severe anxiety, etc. But if concerned, she should get her D3 and calcium levels checked.

There are people here who have been taking 10k or 15k IU per day for multiple years without issue, other than not seeing their CH cycles. But again, if concerned she should talk to her doctor (we're not medical doctors).
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #820 - Jun 3rd, 2019 at 10:16am
 
Kevin Omachel wrote on Jun 2nd, 2019 at 7:47pm:
Hello again, so we have been on the D3 regimen for ten days now and so far so good. My wife is having severe anxiety and her body doesnít feel right. Is this a symptom of the large dose of Vitamins she is taking? How long do you have to take an excessive amount of D3 before you have to worry?


Hi Kevin,
I think it's good you're concerned about possible side-effects or interactions the D3 regimen might pose. I highly doubt that this regimen is causing the issues. But based on your list of pharmaceuticals previously listed--topiramate, indo, sumatriptan and benedryl, your wife's body 'not feeling right' doesn't seem too far fetched. Topiramate is notorious for it's side-effects and interactions. It also is supposed to be tapered off as opposed to stopping cold turkey. So make sure to consult your doc about how to do this properly. You haven't mentioned if she is on any other prescriptions for any other conditions. If so, there could be possibilities for interactions. Case in point, I had a short, but severe episode of anxiety and dizziness from Eliquis and Xarelto taken for anti-coagulation. I was already on a fairly large dose of fish oil for the D3 regimen, and in my case, it is an effective blood-thinner on it's own. So if she is on other prescripts, this would be something to take a look at. Your doc or pharmacist can be very helpful about the interaction thing. Sorry she is dealing with all of this. Let us know how she fares.

Patti
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #821 - Jun 3rd, 2019 at 9:19pm
 
Good evening, I had another question about the D3 regimen. I put my wife on the 12 day loading dosage, after about 7 days on it she started having PF days, 4 to be exact. She was still having shadows over the weekend but nothing serious. This morning she woke up and had one that required oxygen and now she has had two more this evening that were the same. Is there anything I need to change for the regimen? I was only giving her 400 MG of the magnesium but I did increase that today to 800mg.

Is there something I need to change? Her neuro gave her prednisone today to try and break cycle as well as started her on Emgality.

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #822 - Jun 8th, 2019 at 6:35pm
 
Batch,

I wanted t let you know that I started your D3 regimen back in July 2016. It took about 4 weeks before anything happened and although I was discouraged, because some have reported relief much quicker, I stuck with it. I have not had a CH in nearly 3 years! In the decade prior to starting the regimen, I had never gone more than 15 moths without a cycle. I have had many shadows over the past 3 years but never had a CH materialize.

I have found that, for me anyway, it really does not matter the brand of vitamin that I use. So long as they are the 5,000 IU D3 and 500mg of Magnesium.

I just wanted to share on here, to everyone, and thank you. You have changed my life in a way that I can never repay.

Here's to many more years of relief! Thanks, buddy!
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #823 - Jun 10th, 2019 at 5:32pm
 
Kevin,

Sorry for the delay in responding.  I'm up in Pelican, AK
Salmon fishing and there's no phone or Internet in our house here, so I need to trek down to the local library to get WiFi. 

The extra magnesium should make the difference.  The  enzymatic processes that hydroxylate (metabolize) vitamin D3 to 25(OH)D3 and on to the genetically active metabolite 1,25(OH)2D3 that prevents our CH, consume magnesium rapidly.  This is particularly so during vitamin D3 loading and why I suggest doubling the magnesium dose.  I'm guessing your wife is CH pain free by now. If not, please let me know. There are other steps we can try.

Take care and please keep us posted,

V/R,

Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
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Control The Beast With
O2 & D3 You Must


Posts: 3551
Bremerton, WA
Gender: male
Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #824 - Jun 10th, 2019 at 5:45pm
 
Hey SECA,

Thanks for the feedback.  It's always great to hear another CHer has found this regimen effective in preventing CH.

Thanks again and take care,

V/R, Batch.

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
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