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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> 0 Days PF and I'm sure I don't know why http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1340408281 Message started by AppleNutClusters on Jun 22nd, 2012 at 7:38pm |
Title: 0 Days PF and I'm sure I don't know why Post by AppleNutClusters on Jun 22nd, 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... :-[ Just got my 25 OHD results back - 135. Isn't this high enough to see results?? |
Title: Re: 0 Days PF and I'm sure I don't know why Post by Katherinecm on Jun 22nd, 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. |
Title: Re: 0 Days PF and I'm sure I don't know why Post by AppleNutClusters on Jun 23rd, 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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Title: Re: 0 Days PF and I'm sure I don't know why Post by wimsey1 on Jun 23rd, 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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Title: Re: 0 Days PF and I'm sure I don't know why Post by Brew on Jun 23rd, 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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Title: Re: 0 Days PF and I'm sure I don't know why Post by Racer1_NC on Jun 23rd, 2012 at 12:52pm Brew wrote on Jun 23rd, 2012 at 10:43am:
It also tossed me into the absolute worst high cycle I've ever had last summer.......damn that stuff.... |
Title: Re: 0 Days PF and I'm sure I don't know why Post by japanzaman on Jun 24th, 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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Title: Re: 0 Days PF and I'm sure I don't know why Post by JandSmomma on Jun 24th, 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 |
Title: Re: 0 Days PF and I'm sure I don't know why Post by AppleNutClusters on Jun 26th, 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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Title: Re: 0 Days PF and I'm sure I don't know why Post by AppleNutClusters on Jun 26th, 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. :D
Endocrinologist is next on my list... just gotta space those specialists out a bit because the copays add up fast. |
Title: Re: 0 Days PF and I'm sure I don't know why Post by japanzaman on Jun 27th, 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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Title: Re: 0 Days PF and I'm sure I don't know why Post by JandSmomma on Jun 28th, 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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