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123 Days PF And I Think I know Why (Read 531726 times)

Batch

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Re: 123 Days PF And I Think I know Why
Reply #225 - May 16^th, 2011 at 11:21am

Hey Bird,

The body synthesizes its own vitamin D3 in the skin when exposed to the UV in direct sunlight and can make 10,000 I.U. in as little as 30 minutes if no sun block is used. Omega 3 fatty acids are present in highest concentrations in cold water fish like herring, sardines and salmon.

There shouldn't be any worry about toxicity dosing with 10,000 I.U. of vitamin D3, but it's a good idea to consult with your doctors given your history of compromised renal and hepatic functions before you start this regimen.

You should include the calcium citrate tablets formulated with magnesium and zinc. The extra calcium and magnesium is needed with higher doses of vitamin D3 in order to build and maintain bone mass. Zinc plays a role in several functions in the body including the immune system and it's also an essential element in carbonic anhydrase, an enzyme that helps transport carbon dioxide from the body to the lungs for release in exhaled breath.

Hope this helps.

Take care,

V/R, Batch

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #226 - May 16^th, 2011 at 12:25pm

Dewalt,

Are you also taking the calcium citrate formulated with additional vitamin D3, magnesium and zinc? It appears these mineral supplements are essential parts of this regimen.

If you are taking it, you might want to check through this thread for some posts I made on comorbidities. You can use the search box at the upper left part of this page to search for links discussing the comorbidities CH'ers are reporting who are not seeing the same results as others with this regimen.

Take care,

V/R, Batch

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Re: 123 Days PF And I Think I know Why
Reply #227 - May 16^th, 2011 at 5:06pm

I started taking the citracal with d3 magnesium and zinc saturday the ch's were a little less severe today aborted pretty quickly with oxygen can you explain more about the comorbidities it seems like cutting grass always triggers a headache even with a mask this cycle as been the worse i have ever had and the longest 4and half months usually 3 months nothing has seemed to work

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Re: 123 Days PF And I Think I know Why
Reply #228 - May 16^th, 2011 at 8:42pm

thank you for your reply batch. i just got done looking up everything i could about vitamin D production, most of it by looking up things on this page: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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it left me with far more questions than answeres, but it was a good start for my quest for knowledge. it also left me wishing i kept all those textbooks on biochemistry...(i was a wierd kid...)
-Bird

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #229 - May 17^th, 2011 at 12:25am

Dewalt,

A rough tally of folks who have not had a marked decrease in the frequency or severity of their CH after a few days on this regimen revealed a not too surprising finding... They all suffered from one or more of the same group of comorbid conditions/disorders that ranged from cardiac insufficiency with stents and pacemakers, diabetes, thyroid insufficiency, renal insufficiency, COPD, and some I suspect are having an allergic reaction to some form of allergen.

The interesting thing about these disorders is they either have the capacity to lower arterial pH which results in a general vasodilation, or they result in a general inflammation that likely spreads to the trigeminal ganglion area that also triggers vasodilation.

In either case the level of vasodilation and inflammation is such that this regimen is unable to overcome it. If you think about it, there are folks who do not get relief from taking prednisone... and that's a very powerful anti-inflammatory.

The first thing I'd suggest is to contact your PCP and get an annual physical with a good lab workup including a complete chem panel & CBC. Even if you're already taking 5,000 to 10,000 I.U. vitamin D3 a day, having your 25(OH)D serum levels checked to verify your level of of this vitamin D3 metabolite is a good idea and will help you calibrate the dosage.

The attached paper on vitamin D3 deficiency provides the suggested levels for the 25(OH)D test. Bird, you might find this paper interesting too.

Other than that, cutting out all forms of gluten, sugars (fresh fruits like oranges apples and bananas are OK), and peanuts for a start might help as these are common causes of allergic reactions.

A diet high in alkaline forming and anti-inflammatory foods might also help. A good listing of these food types can be found at the following links:

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Hope this helps.

Take care,

V/R, Batch

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Re: 123 Days PF And I Think I know Why
Reply #230 - May 17^th, 2011 at 2:01pm

Hey Scott,

Thanks for the post on the vitamin D3, Omega 3 Fish Oil and calcium supplements. Sorry to be so slow in responding.

STOP TAKING VITAMIN D3 !!! It appears from the symptoms you've listed, you are having an allergic reaction. If any of the symptoms persist see your doctor asap.

The incidence of reactions to vitamin D3 are relatively low but they do exist. Be sure to read page 2 and 3 of the following link for reactions and possible interactions with other medications or comorbid conditions:

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The reaction may be due to the vitamin D3 (cholecalciferol), but it could also be a reaction to one or more of the other ingredients of the vitamin D3 liquid softgels you're taking.

Depending on the mfgr... the other ingredients include but are not limited to: propylene glycol, soybean oil, gelatin, or vegetable glycerine.

What brand of vitamin D3 are you using and what are the other listed ingredients?

What brand of calcium citrate mineral supplements were you taking?

If you were using the Kirkland brand, two capsules contain 800 I.U. vitamin D3. If you had no reaction to this formulation, it could be one or more of the other ingredients in the vitamin D3 liquid softgels that's causing the allergic reaction. This brand of calcium citrate also contains propylene glycol so if there was no reaction, it may not be the propylene glycol that's causing problems.

Finally, did you have any problems taking the Omega 3 Fish Oil?

Thanks again, and please keep us posted.

V/R, Batch

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

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dewalt CH.com Newbie Offline I Love CH.com! Posts: 3 Gender:	Re: 123 Days PF And I Think I know Why Reply #231 - May 17^th, 2011 at 7:13pm Thanks Batch. I will call my pcp tomorrow and set up an appointment for a physical and will let you know how it comes out. I'm going to take this information with me and discuss it with him
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #232 - May 18^th, 2011 at 2:39am

Dewalt,

Good move!!! As I've said before and I'll say it again... I'm not a doctor.

I started this post to let fellow CH'ers know what was working for me. If my results made it sound good enough to try... I suggest a talk with your primary care physician or neurologist first...

Even over-the-counter vitamins, minerals and supplements can produce a reaction as we've already seen in some of the comments...

In the age of medical specialization, it's not inconceivable to see several specialist who don't have the big picture with respect to your overall health or have a complete tally on all the medications you're taking...

It's kind of like the three blind men coming up to an elephant... One blind man claimed the animal was docile and has very big ears... The second blind man claimed the animal has a marvelous prehensile nose that can suck peanuts right out of your hand... or pocket...

The third blind man wasn't having anything to do with the descriptions provided by the first two blind men... He thought this was a vile and disgusting animal... saying... "I pulled on its tail and got showered with very large and smelly Nairobi trail markers...

My analogy might not be spot on... but the point I'm trying to make should be very clear... We all need a physician who keeps tabs on all that ails us and all the medications we're taking... even OTC meds, vitamins, and minerals...

The Navy thought so much about this concept they came up with Flight Surgeons... Doctors who completed med school, internship, and then the Navy stuck them in the cockpit of an airplane and taught them how to fly so they could understand what we pilots were going through from a medical, physiological and psychological perspective...

I learned the basic rule a long time ago... There are no secrets between me and my Flight Surgeon...

It was not uncommon to take the Squadron Flight Surgeon up on a hop in one of our jets... If nothing else, it proved he... or she... was just as spellbound over the magic of flight as we were...

Make it a point to discuss your cluster headaches and any other medical condition you may have along with all the prescribed and OTC med's you're taking with your primary care physician (PCP). It just makes good sense...

Take care,

V/R, Batch

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

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Re: 123 Days PF And I Think I know Why
Reply #233 - May 23^rd, 2011 at 3:49pm

Hi Batch

Just checking in, still completely pain free, lots of days now. Pretty sure I am out of the episode, would ordinarily be due another batch in the next four weeks. Feeling great, less tired, skin is great, teeth feel wonderful, joints are free and smooth. Partner is just asking when it will stop me farting!
Seriously I have had complete relief since i started taking the regimen. Have spoken to a couple of friends one who has really acute migraines nad they are trying as well. Will get back to you with their results.
Wondering when I send my O2 back, think I will wait until I have missed for a long time.
Thank you again for sharing.
Ian Grin

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #234 - May 25^th, 2011 at 1:29pm

Hey Ian,

Thanks for the update. Wonderful feeling isn't it? My oxygen kit has been sitting in the corner under a dust cover since last October...

Feed partner the same regimen along with some oatmeal with extra oat bran and try for a duet.

I'm keenly interested in reports from migraneurs on this regimen. There's reason to suspect it will help them too.

Take care and thanks again for the update.

V/R, Batch

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

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Amanda07

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Re: 123 Days PF And I Think I know Why
Reply #235 - May 28^th, 2011 at 8:16pm

Hi guys! I have a question about the zinc and magnesium...is there a certain level we should be taking or aiming for? I'm currently taking just a zinc, B6 and magnesium tablet because my chemist had run out of the calcium/mag/zinc/vit d one and I'm wondering whether this is affecting the level of success...when searching for something to take until they get the others back in, I wasn't sure what levels of mag and zinc I should be looking for. Any thoughts?

I am doing better since I started the mag and zinc, but haven't returned to the blissful pain free days I original had - still getting annoying shadows...

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #236 - May 29^th, 2011 at 11:42pm

Hey Amanda,

Good question.

The ingredients for the anti-inflammatory regimen I started are shown below. I get them at Costco.

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The calcium citrate tablets (2 each) that I take daily contain 500 mg. calcium, 800 I.U. vitamin D3, 80 mg. magnesium, 10 mg. zinc and a trace of copper...

The Kirkland brand formulation with calcium citrate easier on the tummy than calcium carbonate, it satisfies the additional calcium required when dosing with vitamin D3 at or above 5,000 I.U. and the calcium citrate also acts as a buffer on the stomach's gastric juices when washed down with lemonade or limeade high in citric acid.

If you can't get the Kirkland brand of calcium citrate, Citracal Plus Bone Density Builder® is formulated with similar levels of each ingredient. If you can't get either brand, try to match the ratio of ingredients listed above.

Hope this helps.

Take care,

V/R, Batch

« Last Edit: May 29^th, 2011 at 11:47pm by Batch »

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

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Re: 123 Days PF And I Think I know Why
Reply #237 - May 30^th, 2011 at 8:23am

Thanks so much Batch! I'm in Australia so I find it difficult to match brands (without buying online) so I'll be able to search for something similar with those amounts.

The tablets I'm using at the moment while waiting on the restock of the citrate tablets contain Zinc sulfate monohydrate 15.6mg (equiv. to elemntal zinc 5.7mg), B6 25mg and Magnesium oxide - heavy 51.5mg (equiv. to elemental magnesium 30mg) and I take these three times a day. So while I'm taking more zinc then your tablets, the mag still seems a little low (going off the elemental numbers)

Hopefully they have the citrate back in when I go down tomorrow!!!

I will say that although I'm still getting shadows, I'm slowly tapering off my verapamil and nothing is getting worse which definitely means that the regime is doing something, not the verapamil. Hopefully when I get all the numbers right for a while, I'll go back to PF!

« Last Edit: May 30^th, 2011 at 8:24am by Amanda07 »

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Re: 123 Days PF And I Think I know Why
Reply #238 - May 30^th, 2011 at 7:41pm

Hi Amanda

Didn't realise you where from Oz.

I use the Natures own brand Magnesium/Calcium & separate Zinc from Woollies; cheaper than the Chemist or Health food shops.
I haven't been able to find a combo of the 3 Vits, one thing to remember is if you take Magnesium alone for any length of time you will need to supplement with Calcium as the Magnesium will block the natural intake of the Calcium & cause muscle & joint pain.

Cheers
Barry

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Re: 123 Days PF And I Think I know Why
Reply #239 - May 31^st, 2011 at 6:39am

Hey Barry! Thanks for that! And yep, Aussie through and through

Yes I was considering a mag/cal and a separate zinc...or a mag/zinc and separate cal. I did find one with the bunch today, but didn't purchase it just yet. I might write down the levels in it when I go past the chemist tomorrow and then run it by everyone before purchasing...I can't remember the numbers off the top of my head! It might work out better to have them separate.

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Re: 123 Days PF And I Think I know Why
Reply #240 - Jun 7^th, 2011 at 2:25pm

Batch,

This trial is now known here in Finland, too. I checked one Finnish ch site and there it was, one other clusterhead had added it there.

So I'm not the only Finn who knows about this and can check it out. I added omega3s into my daily vitamin regimen in early April and results are clear: it helps me, too.

Only the flu (which begun last week) brought ch back. Otherwise, I only got problems when I was visiting my aunt and was not able to take my vitamins on time.

PF days to all,
Sanna

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: 123 Days PF And I Think I know Why Reply #241 - Jun 7^th, 2011 at 2:32pm Quote: I only got problems when I was visiting my aunt and was not able to take my vitamins on time. I can only conclude that you should NOT visit your aunt anymore. She sounds like a tyrant.
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #242 - Jun 7^th, 2011 at 7:11pm

Sanna,

Thank you for the SITREP on the anti-inflammatory regimen from Finland and that it's working for you. Great News!

I hope to have an Internet survey site set up in the next few weeks to capture some data on this regimen from CH'ers who have given it a try... That way when I take the results to the leadership of the International Headache Society, we might just generate enough interest for a multi-site international study of this regimen...

Favorable results from a study of this regimen could result in its expanded use worldwide as a more effective, less expensive and healthy alternative to the more invasive medications prescribed for CH today.

Thanks again for the update and take care,

V/R, Batch

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Re: 123 Days PF And I Think I know Why
Reply #243 - Jun 23^rd, 2011 at 4:11am

Hi,
I just wnted to update you on my latest Dr visit. I have been on 14,000iu D3 for 4 months so they sent me for some blood tests. It turns out that my vitamin d levels are so low they are "through the floor" and "little old ladies that never get sunlight and are being tube fed have higher levels".
Calcium, magnesium etc were all within the normal range. So I have been prescribed 20,000iu daily with a view to further blood test in 3 months. Has anyone else had this blood test and if so what were the results?
Also, due to the wonderful Batch and his vitamin regime, my Dr has prescribed this to another CH and he is now also pain free Grin

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #244 - Jun 23^rd, 2011 at 2:18pm

Oxyrunner,

Outstanding feedback! Thank you! The blood test for 25(OH)D, the serum level metabolite of vitamin D3 is the only other way of knowing you're taking an effective therapeutic dose other than experiencing a marked reduction in the frequency and severity of your CH, or better yet, going into a pain free remission.

Having your doc up your vitamin D3 dose to 20,000 I.U. a day and prescribe this regimen for another CH'er who went pain free using it is a great endorsement.

A quote from the paper by Dr. Peter J. Lewis, MD on vitamin D3 deficiency is worth reading again...

He suggested that all patients should have their vitamin D levels routinely checked at least once or twice a year.

"As a practical guide to diagnosis and management, I would suggest the following (25OHD levels in nmol/L):

• <100 = Deficient
• 100-200 = Optimal
• 135-225 = Normal in sunny countries
• 500+ = Potentially toxic (this would require a sustained daily intake ≥ 40,000 IU)

[Note: To convert to nmol/L to ng/ml, divide by 2.5]

As far as treatment is concerned, a good rule of thumb (based on my personal experience of treating 100’s of vitamin D deficient patients) is that a dose of 1,000 IU of cholecalciferol (vitamin D3) will raise 25OHD
levels by approximately 10 nmol/L over 3 months.

Thus, an appropriate individualized dosage can be easily calculated. Therefore, for a patient with an initial blood level of 50 nmol/L, a daily dose of 10,000 IU/day would be required to raise their 25OHD level to about 150 nmol/L (i.e. the middle of the optimal range) over 3 months."

In another paper he indicated an even higher dose of vitamin D3 would raise the 25OHD level even faster...

Again, many thanks for the outstanding feedback. Take care,

V/R, Batch

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

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Re: 123 Days PF And I Think I know Why
Reply #245 - Jun 25^th, 2011 at 2:14am

Batch,

I suck at reading my email lately. somehow my blackberry has a permanent x for all internet functions so i'm not receiving my emails in a a timely manner. i did get your email just like 5 min ago. thanks for providing me with that info. i feel stupid that i read it after i made my dumb thread Undecided

Undecided

. i'm going to look into your detailed regimen and try to acquire all that is needed. hopefully this does work for me and thanks for paying attention to detail on what has worked for you.

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Re: 123 Days PF And I Think I know Why
Reply #246 - Jun 27^th, 2011 at 11:24pm

Well, the pred never worked for Gary, but I'm armed with the needed supplements, and I started Gary on D3 and Citrical Plus (with mag and zinc) today. The max Omega 3 I found was 300mg so didn't bother. Hopefully I'll be able to add it tomorrow.

I'm 99.9% sure he's got some kind of undiagnosed comorbid thing going on because of the insane fever episodes he still has.... but we'll give it a few months.

Heck - expect it'll make me feel better. Maybe I'll sleep through the night.

This is enough already

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: 123 Days PF And I Think I know Why Reply #247 - Jun 28^th, 2011 at 9:36am Gary's Girl you are an amazing supporter. Sending positive vibes your way that you guys can get a handle on this damned thing. Joe
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Re: 123 Days PF And I Think I know Why
Reply #248 - Jun 28^th, 2011 at 11:06am

Hi Batch, glad to hear you are still PF!!
I thought I'd share my non CH experience with VD3, its been making me wonder...

A couple months ago after recognizing my 4yr deficient, we started giving him the liquid form from costco. He loved it and and would drink as much as we would allow him, so he had some very high doses. Nothing. Then about 6 weeks ago I started to feel an extreme fatigue return that I had experienced after my last pregnancy. (15 months ago)I had had my blood checked and was VERY low on VD3, my level was 23. I would literally drop to the floor in tears, not sure I could even crawl to my bed or the couch. (1st time I had ever had that checked or thought about it-lucky for me I was seeing midwives instead of docts or I probably would have been told it was my iron levels Grin

Grin

) Anyways - so I knew the feeling and started taking the VD3 I had bought per Batches regimen for Derek (who has ECH). I also started to give it to my 4yr old, surprisingly he had no problem swallowing the pills and likes taking them (he is reading this right now and has reminded me that I don't have a 4yr old - he turned 5 this month Grin

Grin

Grin

Grin

)

What I expected was for our "tiredness" to go away (and Josiah's "hurting scalp" that I didn't know until reading one of Batches posts is a sign of VD3 deficiency).
What I didn't expect was for both of our sleeping patterns to be completely corrected. Josiah has ALWAYS had a hard time staying asleep. Since he was 2 and out of the crib he would get up and rock in his chair or go down and rock on the couch. (before then he would sit in his crib and bang his head. He broke 2 baby swings with his excessive banging. If we had him in the play pen he would bang so hard it would move across the room. He always had a knot on the back of his head. We have had him checked for autism-he really is perfectly normal besides this one weird trait) He always bangs his head back and forth when he is tired. He also would always be awake by 5am or sometimes earlier. Needless to say he was exhausted and jittery through out the day. Since being on VD3 he is sleeping in till about 7 am every morning - has not complained of his scalp hurting and we have not found him in his chair or on the couch...

It has had the opposite effect on me. I have ALWAYS had a very hard getting up in the mornings (we home school so can start our days later) It has always bothered me (and my hubby-I can be REALLY hard to wake up Undecided

Undecided

) but who can change when they wake up? Thought I was just a night owl. But since being on high doses (3-6000mg/day) My "clock" has reset all on its own. I have waken up at 5:30-6:00 every single day for the last 3 wks. I remember this happening 15 months ago when I doses on the VD3, but chocked it up to "more energy" as I had not found this sight and was not aware of the link it might have with the hypothalamus...but this time I wonder if the VD3 is doing more than just affecting the blood vessels, it seems to be having a direct affect on our internal clock...
PF wishes to all,
-DG

Words can not express the gratitude I have for all of you who have, in the midst of such great pain, reached out and helped so many...

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Re: 123 Days PF And I Think I know Why
Reply #249 - Jun 29^th, 2011 at 5:59am

Hey DG,

What a wonderful post. Thank you for taking the time to share it with us.

It's good to hear the anti-inflammatory regimen and vitamin D3 have other marvelous health benefits over and above preventing cluster headaches or reducing their frequency.

I hope your post will encourage more CH'ers to give this regimen a try.

Take care and thanks again for the wonderful post.

V/R, Batch

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

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