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Bejeeber

Dramatic vit D3 megadose success stories at ch.com

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Alleyoop. Sorry to hear that your back in high cycle but very glad to know you got relief from your recent bust. Does this prove, once again, that we cannot rely on prescribed meds to do the trick? Seems it was "working" for you for some time but, as with most, it became ineffective.

On the vitamin regimen, I had started the D3, Fish Oil, Magnesium/Calcium a couple of weeks ago. I don't know if many one else has had this side effect but my tongue and throat became kind of raw so I stopped the whole regimen and it cleared up. I wonder which of these supplements caused that or was it the combo of them all? I may just re-start with the D3 and see what happens. Then begging to incorporate the others, any thoughts on this?

Thanks

Scott

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Alleyoop. Sorry to hear that your back in high cycle but very glad to know you got relief from your recent bust. Does this prove, once again, that we cannot rely on prescribed meds to do the trick? Seems it was "working" for you for some time but, as with most, it became ineffective.

I'm not going to chalk clomiphene up as not working yet.  It has given me my life back!  I feel the larger question is why did I go into such a high cycle?  If it is because the clomiphene quit working, then it won't take long to know it, since I am and always have been chronic.

On the vitamin regimen, I had started the D3, Fish Oil, Magnesium/Calcium a couple of weeks ago. I don't know if many one else has had this side effect but my tongue and throat became kind of raw so I stopped the whole regimen and it cleared up. I wonder which of these supplements caused that or was it the combo of them all? I may just re-start with the D3 and see what happens. Then begging to incorporate the others, any thoughts on this?

Sorry Scott, but I haven't got a clue.  Maybe someone else can help.

bobb

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I don't know if many one else has had this side effect but my tongue and throat became kind of raw so I stopped the whole regimen and it cleared up. I wonder which of these supplements caused that or was it the combo of them all? I may just re-start with the D3 and see what happens. Then begging to incorporate the others, any thoughts on this?

Soctt, I'd suggest that you consider posting this question over at ch.com, where there are quite a few more people to notice it and where Batch often has something useful to say about observations regarding the treatment.  The thread's at http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/50

I'd like to also suggest that bobb post his experience there, because one thing I know Batch and others are looking for is what combinations/interactions seem to limit D3's effectiveness.   

Jerry

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bobb I hear you, I don't know why either but this cycle is the worst I have ever had in the 17 years that I have had CH.  I know without question changes in humidity (and of course roller coaster changes in barometric pressures certainly make my cycle worse and this year here in Alabama we have had both and I am guessing you experienced the same in GA.  Nothing scientific about what I am saying just my on observation of affects on my.  While I thought this cycle was over I have begun to have shadows again over the past couple of days which again corresponds to the weird weather we are having.

I hope you and everyone else has PF days ahead.

Wishbone

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this cycle is the worst I have ever had in the 17 years that I have had CH.I know without question changes in humidity (and of course roller coaster changes in barometric pressures certainly make my cycle worse and this year here in Alabama we have had both and I am guessing you experienced the same in GA. 

A few years back, I actually went to the trouble of recording barometric pressure and whether it was rising or falling every time I got hit.  I couldn't glean anything conclusive out of it though. :-/

I didn't realize you lived in God's country Wishbone!  (I was born in Tuscaloosa) :)

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I'd like to also suggest that bobb post his experience there, because one thing I know Batch and others are looking for is what combinations/interactions seem to limit D3's effectiveness.

Done.

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bobb I have never recorded my hits in correlation with the barometric change so I could be totally wrong (I usually am just ask my wife, lol) but it just seems when we get funky weather I get more hits, but it could be my imagination.

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Wishbone, I feel as you do that barometric pressure does seem to have an effect on CH, even if my little experiment didn't bear that out.

I kept a very detailed diary for a number of years, and tried to include any variables I could think of.  A little over three years ago, I was doing so good that I quit keeping the diary and really haven't felt the need for it until recently.  If things don't settle down soon, I will consider recording everything again.

BTW, I think your wife and mine must have attended the same school! ;D

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Sorry things have been so rough for you, Bob B.  I was really hoping the D3 would help you out. 

My CHs went a little crazy, so I upped my D3 from 10,000mg to 15,000 a couple weeks ago.  Last Monday and Tuesday, I was pretty sick - nauseous, weak, constant "regular" headache, overall felt weird (no comments, please  ;D).

I think I may have overdone things - too much D3 as I had also spent the previous Sat + Sun outside all day in the sun.

Monday I dropped the D3 back to 10,000 - I've been feeling fine since Thurs..  Maybe it was the D3, or maybe I just had a virus or something.  ?

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This is somewhat off topic, but It is a big thing these days to prescribe mega dose prescription vit. D2. I did that per Dr.'s orders. I got really sick and had to have blood work to check for toxicity.

Meanwhile I take some vit. D3 and omega3 OTC. But not mega dose.

I'm just saying maybe blood should be checked on occasion if you are doing mega doses of any vit.     Leslie

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Is anyone still using this method? I stopped taking the vitamins when my cycle ended, and just started a new cycle 2 days ago. So, I have started taking it again, too little too late, I'm afraid.

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D3: My last lab in August of 2010 showed D, 25-hydroxy at 31.1. That was after working in multiple gardens since May.

HDL at 67 and LDL at 132. Hemoglobin A1c at 6.1

So, I started the D3 in November I think. Perhaps the first of December.

New tests: D 25-hydroxy at 101, HDL at 74 and LDL at 113. Hemoglobin at 5.7.

So cholesterol down, good cholesterol up, D 25-hydroxy up and Hemoglobin down.

However, my tongue has been raw for months now. Makes food choices limited and most taste awful! I stopped the D on March 20th. Three days later, the rawness was gone and has only reappeared in minor form once.

While this could be a good approach, it did not help my head at all. I gave it a several month test. Someone posted elsewhere that the D3 made them nauseated and their tongue was sore. Warnings do not list the tongue thing as a bad side affect, like being nauseated. But, I decided to quit to see the results.

I have been basically PF since I STOPPED! Go figure. At least the cholesterol is better and the diabetes thing of Hemoglobin is down too. Perhaps starvation is a good thing? >:(

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I have been basically PF since I STOPPED! Go figure.

Well first order o' bizness, let's party DOWN, celebrating the awesome PF!!  [smiley=2vrolijk_08.gif] [smiley=vrolijk_26.gif] [smiley=thumbup.gif] :)

2nd order - hmmmm WTF's goin' on? Rather cuckoo and unexpected ain't it? Curious as to whether your D3 trial included all the other mineral and oil stuff that's considered part of the *D3 regimen*, or were you only gobbling the actual D3 vitamin component?

Also may I enquire as to which brand of D3 pills you were gulpin'? I think I may wanna avoid that brand! (currently I'm taking the same Costco brand that Batch uses).

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Sundown: Omega-3 1200mg & B Super Maxi 1000% of B's and 100% Folic Acid

Nature Made: 550mg Potassium Gluconate

Spring Valley: D-3 1000IU

Citracal: Calcium, magnesium + D 1200mg (this one does not have the zinc and whatever the other mineral was in it)

Glass of OJ.

I plan to start back on everything but the D3 next week. The Spring Valley was a different brand from what I started with on D-3, just what was available. I tried going down to 5000/day, but it didn't help. So, I just quit at that point.

I don't understand it either Jeebs. But, desperate times and all that. ::)

Currently having lunch with a second BEER! [smiley=2vrolijk_08.gif] That means I am now into my second 6 pack since Sept 2011!!! Gonna gain a pound. :D

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Very interesting thread...here's a thread where med students are discussing hpyocalcemic tetany & it's meaning. 

http://www.prep4usmle.com/forum/thread/13791/

I removed calcium from my daily intake of supplements.  It seemed to heighten my 'activity' but maybe reintroducing along with my d3 would be beneficial???

I've never liked the "too little can result in the same effects as too much" situations!!! 

If your doctor gets pissed off at your insisting on oxygen, you probably have the wrong doctor.And you shouldn't have to "fashion a mask."It should be part of what's provided to you with the prescription. Or you can buy one.

Totally agree w/ CHfather

I hope your doc is informed met la  :) & writes you the 02 script posthaste!

1961mom  :)

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Untimely Post Error!

Geez...I've done this many times (laugh with me here) where I respond to something written on page 1 of the thread w/o looking to see there's been about a zillion posts since then!

SORRY

Can I get a "oops, there it is?"!!!!!

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I have been on the D3 regimen for a week now. I started as soon as I started the cycle. I haven't had many hits, but like I said I just started cycle. I just wanted to mention, I do landscaping, so I am out in the sun a lot. I wear 15 SPF on my face and neck and sometimes on my arms, so I would think my vitamin D would be higher than most. I hope this works. I hate taking all those damn preventatives when O2 doesn't work in the middle of my cycle.

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when O2 doesn't work in the middle of my cycle

g'gal, have you tried higher-flow oxygen with the mask specially designed for CH?  Those things can make a big difference.  See the CB Oxygen Page under the black and white MENU tab for more information and other suggestions.

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I don't want to stir the pot at all, but I felt the need to chime in on this because I feel there are some glaring omissions in the D3 regimen information. Since it has taken on a life of its own, the other board/original post is probably not the place to mention this, but I will do it here:

First, let me say that I have personally corresponded with Pete, the originator of this treatment option. He is a brilliant guy, and is the most generous person I've ever seen with his time and knowledge. He has done more independent research than anybody I know.

That being said, I feel the success rate as reported by the survey is extremely skewed. I don't think it takes into account the duration of relief, only a snapshot of short-term relief. People begin the regimen, there is a high degree of success (over 80%), and they complete the survey. However, I have seen firsthand that every single chronic CHer I know, and there are many, will stop responding to this regimen eventually, even with adjustments to dosage, addition/subtraction of co-factors, etc. While the overall success rate for episodics may indeed be very high, I think the success rate for chronics is actually much lower than reported. Only going by what I see and experience here.

Now, I also feel a critical step is being left out of this research: the WHY. If we could learn exactly why this D3 regimen seems to help, we could learn why it doesn't seem to help chronics for long periods, and that knowledge could help us better understand where CH comes from. My own theory is that the higher levels of calcidiol act as a buffer to the immune system, a bit of a "shock absorber" to the immune response that causes the pain of CH. For chronics, the CH mechanism eventually finds a way around this temporary buffer.

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Well, since we're talkin' science now. . .assuming we could establish some links there (I'm a little skeptical about trying to link tryptamines and oxygen, among others, to increased growth hormone), by that logic, we should be able to treat CH with injections of easily-available HGH, plus we would all have muscled beach bodies too! Sounds like a win-win!

But alas, HGH and hormone enhancement/replacement therapy with testosterone have been tried. Results were minimal, at best.

As for "where CH comes from", I do indeed have my own theories about that, and I am 99% sure that it ain't where we've been looking.   :)

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