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AppleNutClusters

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Richmond, Virgina, USA
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0 Days PF and I'm sure I don't know why
Jun 22^nd, 2012 at 7:38pm

Not to be a wiseacre here... but... I'm starting to feel alone as a non-responder to the Batch vitamins after over two months at very high levels (10,000 IU, up to 50,000 IU in the last three weeks). So I went back and carefully loaded up on the cofactors too, even the ones that make me puke. It's been a week since the additional cofactors. No response.

Again, I'm feeling like a loser here with so many others responding so well. If you're also a non-responder, please reply. Maybe we can figure out together what we're missing as the 30% who don't get relief from this... Embarrassed

Just got my 25 OHD results back - 135. Isn't this high enough to see results??

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Katherinecm

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Des Moines, IA, USA
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Re: 0 Days PF and I'm sure I don't know why
Reply #1 - Jun 22^nd, 2012 at 9:21pm

The D has helped me, but almost everything else hasn't, not for very long anyway (even O2 does nothing, and imitrex causes rebounds), so you have my sympathy. Honestly sometimes I suspect that when episodics find preventatives that "work," most of the time they don't do anything, they just try it at the time that their cycle would have been getting better anyway.

My dad was never diagnosed, but I'm certain he had CH too. He never took D, but he did spend a lot of time outdoors in Florida, so I'm sure his D levels were normal-high, but he had them anyway. My guess, from twin studies, is that it's purely genetic. When I first went chronic I tried this "antinflammatory diet" that involved cutting out most carbs and eating salmon several times a day. It had pretty high vitamin D, but it did nothing. No idea why it seems to work now.

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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin

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Batch

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Control The Beast With
O2 & D3 You Must

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Bremerton, WA
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Re: 0 Days PF and I'm sure I don't know why
Reply #2 - Jun 23^rd, 2012 at 3:26am

ANC,

I'm sorry the anti-inflammatory regimen isn't working for you... The question now is why?

It's entirely possible that even though your 25(OH)D is more than high enough, the next phase of vitamin D3 metabolism from 25(OH)D3 to 1,25(OH)2D3, (calcitriol), the active metabolite, may not be happening for some reason.

I'm not a doctor and based on comments from CH'ers here at CH.com, vitamin D3 therapy appears to be outside the mainstream thinking among neurologists... Accordingly, a trip to an endocrinologist would appear to be in order...

There are a number of comorbid conditions that can interfere with vitamin D3 metabolism from 25(OH)D to 1,25(OH)2D3... thyroid, parathyroid and renal insufficiencies for starters...

Seeing an endocrinologist for a complete workup may help shed some light on all this...

There is another possibility... You may need some vitamin A (retinol). Vitamin A enables another mode of metabolizing 25(OH)D into 1,25(OH)2D3. This takes place in all the body's cells, brain and nerve cells included, but it requires vitamin A. Dr. Heaney refers to this as the autocrine mode of vitamin D3 metabolism...

He explains this mode of vitamin D3 metabolism in a presentation at the following link:

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

or

I take a Centrum Silver tablet to make sure I get the RDA for vitamin A and no more as too much vitamin A can cause real problems... One of these tablets contains 3500 IU vitamin A.

You can also eat a serving of carrots, a spinach salad, or have a serving of squash to get your vitamin A RDA in the form of beta carotene. A serving of chicken or beef liver a week will also meet your vitamin A needs.

Please keep us posted on how you intend to proceed.

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, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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AppleNutClusters

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2012, Year of the Honey
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Richmond, Virgina, USA
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Re: 0 Days PF and I'm sure I don't know why
Reply #3 - Jun 23^rd, 2012 at 7:04am

I'm holding at 10,000 IU + cofactors, and I do normally eat a lot of fresh spinach. I've been on super-high levels of vitamin A before (thank you, Accutane--ugh), and I'm currently racking my brain to remember if I was in a cycle back then or not. I kept no records of my CH when I was younger. I'll think on it.

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wimsey1

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Re: 0 Days PF and I'm sure I don't know why
Reply #4 - Jun 23^rd, 2012 at 8:08am

The regimen has not prevented me from having daily/nightly attacks. I take it, along with the recommended supplements, and I have none of the comorbidities mentioned. I suspect, although I don't know, that chronics are much harder than episodics. That might be why we are chronic to begin with: nothing really works to prevent the attacks. Is it possible episodics are episodic because a routine therapy actually interrupts the process whereby a CH is experienced? And chronics do not? oh well...blessings. lance

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Bob Johnson

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Kennett Square, PA (USA)
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Re: 0 Days PF and I'm sure I don't know why
Reply #5 - Jun 23^rd, 2012 at 10:10am

If any single treatment worked 100% of the time for 100% of all CH folks then we would all be using it (and not filling up these pages with seeking/trying/reporting).

Even the best abortive we have is about 90% effective. All the rest less so. Ditto for preventives.

After a couple of years here you'll see the same refrain:
try; success; change of success to relapse; start over again on a new search for relief. It has nothing to do with you being a "loser" but it's the nature of the beast.

No one pays attention to this, but give it look:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

It's a strong tool to help you keep on track.

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Bob Johnson

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: 0 Days PF and I'm sure I don't know why Reply #6 - Jun 23^rd, 2012 at 10:43am Accutane can f*ck up your thyroid big time. I think Batch may be onto something with his suggestion to visit an endocrinologist.
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Racer1_NC CH.com Moderator CH.com Alumnus Offline "Well, let's go see." Posts: 4417 Lewisville, NC Gender:	Re: 0 Days PF and I'm sure I don't know why Reply #7 - Jun 23^rd, 2012 at 12:52pm Brew wrote on Jun 23^rd, 2012 at 10:43am: Accutane can f*ck up your thyroid big time. I think Batch may be onto something with his suggestion to visit an endocrinologist. It also tossed me into the absolute worst high cycle I've ever had last summer.......damn that stuff....
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japanzaman

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Fukuoka, JAPAN
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Re: 0 Days PF and I'm sure I don't know why
Reply #8 - Jun 24^th, 2012 at 10:32am

I took accutane and actually didn't have a cycle while I was on it. I think that while there is the possibility that your D3 is still somehow not being processed correctly, the more likely reason has to do with the fact that the D3 deficiency isn't the direct cause of cluster- it's just another factor in what is probably an extremely complex puzzle of factors. For some, fixing that area might be what it takes to stem the tide and shut the cluster mechanism off. For others, it appears to not be enough.

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JandSmomma

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Cypress, CA
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Re: 0 Days PF and I'm sure I don't know why
Reply #9 - Jun 24^th, 2012 at 2:53pm

Just thought I'd chime in... I began taking the D3 suppliment cocktail suggested on the other thread. Within a couple of days I was relatively PF, just some shadows here and there. When my supply of D3 got low I went back to the store and picked up another bottle, except I bought a different brand. Within a week of taking the new D3 the CH's were back. I upped my intake thinking maybe my body was becoming immune or something. As the bottom of the new bottle came into sight is when I started thinking it was the brand. I started back on the original brand I purchased the first time yesterday, and so far today I've only had a shadow and not a full CH, which I should have had by now. I'll keep you posted on how it goes.

Anyway, long story just to ask... have you tried a different brand of D3? I'm sorry you (or any of us) are going through this. Wish there was a one way fixes all for us!
Take care and here's hoping for PFD&N soon!
Amy

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AppleNutClusters CH.com Old Timer Offline 2012, Year of the Honey Badger Posts: 261 Richmond, Virgina, USA Gender:	Re: 0 Days PF and I'm sure I don't know why Reply #10 - Jun 26^th, 2012 at 6:48am Amy, I have only used Nature Made D3 (5000 IU)... I could try another brand. Anyone else used this one?
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AppleNutClusters

CH.com Old Timer

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2012, Year of the Honey
Badger

Posts: 261
Richmond, Virgina, USA
Gender: male

Re: 0 Days PF and I'm sure I don't know why
Reply #11 - Jun 26^th, 2012 at 7:01am

Oh and Bob, I've read the pain v. suffering a couple of times since you've posted it. I don't agree with everything RBT proposes, but it was helpful. I hope you're not picturing me sitting at home crying into my non-rebreather. I'm not suffering, just venting. Cheesy

Endocrinologist is next on my list... just gotta space those specialists out a bit because the copays add up fast.

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japanzaman CH.com Veteran Offline I Love CH.com! Posts: 210 Fukuoka, JAPAN Gender:	Re: 0 Days PF and I'm sure I don't know why Reply #12 - Jun 27^th, 2012 at 10:54am For what it's worth I use the Nutrigold brand D3. Got it off Amazon really cheap, and it seems to have helped.
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JandSmomma CH.com Newbie Offline Posts: 14 Cypress, CA Gender:	Re: 0 Days PF and I'm sure I don't know why Reply #13 - Jun 28^th, 2012 at 5:25pm Nature Made is what I thought wasn't working. I've been taking my original (Target brand) for a few days now and I'm getting KIP 7 & 8's . So maybe it wasn't the brand that was the problem. Oh well... just another thing to try.
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