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nhs CH.com Junior Offline I Love CH.com! Posts: 63	Re: 123 Days PF And I Think I know Why Reply #1150 - Jan 9^th, 2013 at 6:38pm Hi Started the vitamin d and magnesium february 2009, and have been pain free ever since. Almost 4 years
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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 #1151 - Jan 9^th, 2013 at 6:48pm nhs wrote on Jan 9^th, 2013 at 6:38pm: Hi Started the vitamin d and magnesium february 2009, and have been pain free ever since. Almost 4 years How long before you saw significant improvement? And how much do you take? Did you have load up big on the front end?
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nhs

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Re: 123 Days PF And I Think I know Why
Reply #1152 - Jan 9^th, 2013 at 7:31pm

Brew wrote on Jan 9^th, 2013 at 6:48pm:

nhs wrote on Jan 9^th, 2013 at 6:38pm:

Hi

Started the vitamin d and magnesium february 2009, and have been pain free ever since. Almost 4 years Cheesy

How long before you saw significant improvement? And how much do you take? Did you have load up big on the front end?

I started with 100 µg and 200 mg magnesium after a CH period feb 09. I normal get CH 3-4 periods per year and was surprised that my normally period in May didn't showed up, and it have never returned.

Today I take 5000 IU Vitamin D3, 600 mg Magnesium, 50 mg Zinc, Vitamin-K2 and Boron.

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« Last Edit: Jan 9^th, 2013 at 7:32pm by nhs »

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Brew

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Re: 123 Days PF And I Think I know Why
Reply #1153 - Jan 9^th, 2013 at 7:46pm

nhs wrote on Jan 9^th, 2013 at 7:31pm:

I started with 100 µg and 200 mg magnesium after a CH period feb 09. I normal get CH 3-4 periods per year and was surprised that my normally period in May didn't showed up, and it have never returned.

Today I take 5000 IU Vitamin D3, 600 mg Magnesium, 50 mg Zinc, Vitamin-K2 and Boron.

Thank you.

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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Bay Area85678 CH.com Newbie Offline I Love CH.com! Posts: 17 Bay Area Gender:	Re: 123 Days PF And I Think I know Why Reply #1154 - Jan 10^th, 2013 at 7:49pm I know vitamin D increases oxygen levels in the blood. Is this how its supposed to work on CH? the same way inhaling pure oxygen works?
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1155 - Jan 10^th, 2013 at 10:08pm

Bay Area...

The mechanism of action provided by vitamin D3 in preventing cluster headache... more accurately, its hormonal metabolite 1,25(OH)2D3 (calcitriol), remains essentially unknown and unproven at this point.

We do know that vitamin D3 and Omega 3 fish oil both have anti-inflammatory properties... and this may play a role in suppressing the neurogenic inflammation associated with the cluster headache syndrome.

More specifically, vitamin D3 has been identified as having the capacity to suppress or down regulate (inhibit) the calcitonin gene-related peptide (CGRP) and vasoactive intestinal polypeptide (VIP), both of which are elevated during a cluster headache... and migraine headaches as well.

Hyperoxia (more oxygen in the blood than normal) plays a key role in aborting cluster headaches... as does the hypocapnea (lower than normal blood CO2 concentrations) associated with hyperventilation and respiratory alkalosis...

I'm not sure of any causal relationship between vitamin D3 and increased blood oxygen content...

Take care,

V/R, Batch

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Bay Area85678 CH.com Newbie Offline I Love CH.com! Posts: 17 Bay Area Gender:	Re: 123 Days PF And I Think I know Why Reply #1156 - Jan 10^th, 2013 at 10:32pm I don't know why I thought it affected the oxygen levels in the blood. Interesting though how it reduces the inflammation . I've been taking 4000 iu a day the past couple weeks but I think i need to up the dose and add the Fish oil and Magnesium.
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1157 - Jan 10^th, 2013 at 10:47pm

Bay Area...

The mechanism of action provided by vitamin D3 in preventing cluster headache... more accurately, its hormonal metabolite 1,25(OH)2D3 (calcitriol), remains essentially unknown and unproven at this point.

We do know that vitamin D3 and Omega 3 fish oil both have anti-inflammatory properties... and this may play a role in suppressing the neurogenic inflammation associated with the cluster headache syndrome.

More specifically, vitamin D3 has been identified as having the capacity to suppress or down regulate (inhibit) the calcitonin gene-related peptide (CGRP) and vasoactive intestinal polypeptide (VIP), both of which are elevated during a cluster headache... and migraine headaches as well.

Hyperoxia (more oxygen in the blood than normal) plays a key role in aborting cluster headaches... as does the hypocapnea (lower than normal blood CO2 concentrations) associated with hyperventilation and respiratory alkalosis...

I'm not sure of any causal relationship between vitamin D3 and increased blood oxygen content...

Take care,

V/R, Batch

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birdman

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Re: 123 Days PF And I Think I know Why
Reply #1158 - Jan 11^th, 2013 at 9:29am

Still plugging away pain free. Took the survey as it has been a little over a month. So excited to have additional means of fighting this horrible condition. And it took work and research from folks here..not in some lab full of doctors and scientists, to possibly come up with a plan that helps around 75% of sufferers. Am I the only one amazed by that???

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sleepytimetea

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Re: 123 Days PF And I Think I know Why
Reply #1159 - Jan 11^th, 2013 at 10:58am

I have been taking 10,000iu Vitamin D3, 2000mg Fish Oil, 500mg/250mg Cal-Mag Citrate and a daily vitamin since Jan. 3rd, I believe and you can add me to the pain free ranks. Unbelievable the difference simple OTC stuff makes. I have imitrex nasal spray and injections on stand by, but as of now, no need. Thank you so much, Batch. If I were Catholic I would nominate you for Sainthood. I still get shadows at the times of day my CH would strike, usually around 6pm and/or 11pm, but they have no pain. Heart rate goes up, I get a bit twitchy in the left eye and can feel the tingles, but it's like it can't get any type of foothold to really set in. I am with everyone else when using words like "cure"... but in my 17 years of dealing with these things, this is by far and way the best (and easiest) treatment I've found. Thanks again!

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« Last Edit: Jan 11^th, 2013 at 11:01am by sleepytimetea »

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believer88

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Re: 123 Days PF And I Think I know Why
Reply #1160 - Jan 12^th, 2013 at 8:22am

Been a while since I've been on guys...I'm back.

My Ch'er (my fiancé) is starting into his period this past week...last night I forced the D3 regimen down his throat and I'm making him take it every day (he is very bad at remembering pills...you would think the pain would keep him from forgetting). We are being very positive, and I am also getting him to find an oxygen tank since I already bought him the optimask. I will keep posting weekly in here at least. I love reading the feedback on this thread!

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athome CH.com Junior Offline Posts: 37 Miami, FL Gender:	Re: 123 Days PF And I Think I know Why Reply #1161 - Jan 12^th, 2013 at 1:17pm Beyond excited to have found this post.... Have been on Viatmin D and Fish Oil for a week - working up to the dose others have mentioned. It definitely has had a positive effect on the beast. Not as strong and less frequent. Thank you for helping us!
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1961mom

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Re: 123 Days PF And I Think I know Why
Reply #1162 - Jan 13^th, 2013 at 3:22pm

That CGRP stuff is so interesting.....Here's a good, geeky read. I've copied and pasted the beginning of the CH related paragraph below......what's also interesting is in another study I read we (primary headache patients) are known to have as high as 35% elevation of this substance in our central nervous system as compared to non patients. Shocked

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A. CGRP and Cerebral Conditions

The most compelling evidence of a role for CGRP in a pain syndrome comes from sufferers of migraine and cluster headache. Studies have shown that CGRP levels are raised during the painful phases of both conditions (120, 122) and are restored to basal levels by successful migraine treatment with triptan 5-HT1 agonists, providing evidence that the trigeminal sensory nervous system is activated (260).

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Thanking the Airline Industry for my borrowed quote
"Put your Oxygen mask on first, then assist others"

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JoeS

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Re: 123 Days PF And I Think I know Why
Reply #1163 - Jan 14^th, 2013 at 11:03am

I don't want to jinx myself, but after 10 days of this regimen, I see the light at the end of the tunnel. This past Fri + Sat were just terrible, but yesterday I only had a low-level shadow all day and it never progressed beyond that level, even at night. Today is similar so far, but the shadows are even more subtle. This is pretty characteristic of the end of my cycles, and if that is the case it will be (by far) the shortest cycle that I can remember. Hoping to report confirmation in a few more days.

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1164 - Jan 15^th, 2013 at 12:42am

Hey Joe,

Thanks for the post with your response to the anti-inflammatory regimen...

Off hand, I would say you're having a favorable response to vitamin D3... The best advise at this point is keep taking this regimen and don't worry about looking back... efficacy or end of cycle are both very acceptable outcomes...

There's really only one way to determine if the cessation/reduction in the frequency, severity and duration of your CH is due to this regimen or end of cycle... and that's to stop taking it...

I realize this might sound a bit extreme... like shooting yourself in the foot... or head... but that said, if this regimen is really working to prevent your CH... all you need to do is jump back on it as soon as the CH symptoms take a turn for the worse... At least that way you'll know for sure if it's really working to prevent your CH.

As a chronic CH'er, I was just as confused as you are at this point when the frequency of my CH dropped from 4 to 5 hits a night to none after two days on this regimen... so a week later I stopped taking it... The CH came back in less than 24 hours...

I got back on this regimen and stayed pain free fore another 13 months when I did another burn down test of my 25(OH)D reserves... It took 8 days to deplete my 25(OH)D reserves to the tipping point where I got hit with a classic Kip-6... Getting back on the regimen had me again pain free in less than 12 hours. That was over two years ago... I'm still pain free... but I also know I still have this disorder...

Take care and please keep us posted.

V/R, Batch

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Leo VF

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Re: 123 Days PF And I Think I know Why
Reply #1165 - Jan 15^th, 2013 at 7:27pm

Guys, where do I start?

My name is Leo, I am 30, and I live in São Paulo, Brazil.

It was the beginning of last December, I got hit for the first time in my life. Unfortunately it coincided with a lunch/meeting with friends, and alcohol was involved. So I lost my virginity to a Kip 10, taken to the ER by my wife, telling her strangely in the mix of all that, how much I loved her, 'cause I really believed I was having a stroke or something else that could end that conversation very abruptly. It was the beginning of a long December.

You know how the tail goes from there: PCPs, I.V morphine, neurologists, imaging, and... Nothing. Blank faces. Two weeks visiting different hospitals and 3 neurologists later, I finally cracked. I started searching my symptoms and quickly found you guys. By the time I had finished reading the introduction page, I was self diagnosed.

It took me 3 weeks to find out what I was going through, thanks to you and this website. Yesterday I went back to my last neurologist and discussed with her the diagnosis. She looked to me a little bit like this Shocked

after what I said, and had to agree it was just not a migraine. I then looked like this Angry

.

Long story short, I already had an O2 tank by my bed when she recommended it. I also started last week on Batch's D3 anti-inflamatory regimen.

I am glad (and with eyes full of tears) to say I am PAIN FREE for five days now. I hope you guys can understand the difference you can make in peoples lives and don't ever take this for granted. I'd just like to say, on behalf of me and my family, thank you for giving me my life back.

I believe everything happens for a reason. And it sure made me look with different eyes to every morning I now wake up pain free and full of energy.

Hope to make good friends here, and believe me, I fell like I know you guys already.

Not ready for the beer test just yet... Grin

Thanks once again.

Leo

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« Last Edit: Jan 15^th, 2013 at 7:31pm by Leo VF »

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oxyrunner

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Re: 123 Days PF And I Think I know Why
Reply #1166 - Jan 16^th, 2013 at 10:06am

I must be doing something wrong, missing something, not sure what because the CH keep coming back Angry

I will have a couple of pain free days and then back they come for about a week and then disappear again for a couple of nights again. I am now taking 10,000 iu D3, 1000mg omega oil, 500mg calcium, 133mg magnesium and 15mg zinc morning and evening with a meal and with lemonade. I have low ph levels every morning and manage to get them to a healthy level by the evening. I have tried the alka seltzer at night but it doesn't seem to have had any effect.
I have checked the doseage against what I took last time and they are all the same except the D3 which I have upper by 5000iu a day. Any advice on what I have missed would be much appreciated.

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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 #1167 - Jan 16^th, 2013 at 10:24am Have you had your serum 25(OH)D level checked recently? If it's in the preventive range, you may want to consult with an endocrinologist as you may have other comorbid factors going on.
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oxyrunner CH.com Junior Offline In the middle of difficulty lies opportunity Posts: 41 Kent UK Gender:	Re: 123 Days PF And I Think I know Why Reply #1168 - Jan 16^th, 2013 at 10:42am Hi Brew, Cant get to see my Dr for 5 weeks!!! unbelievable for the UK and even then I will have to almost beg for the blood test!! I could start taking a mulit-vitamin in case anything else is low?
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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 #1169 - Jan 16^th, 2013 at 12:57pm I take a multi-vitamin to get the trace substances that are recommended (vitamin K, boron).
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oxyrunner CH.com Junior Offline In the middle of difficulty lies opportunity Posts: 41 Kent UK Gender:	Re: 123 Days PF And I Think I know Why Reply #1170 - Jan 16^th, 2013 at 5:31pm Right, gonna get some multi vitamins tomorrow and add then to the cocktail
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Leo VF CH.com Newbie Offline I Love CH.com! Posts: 5	Re: 123 Days PF And I Think I know Why Reply #1171 - Jan 16^th, 2013 at 5:51pm Today I woke up with a shadow that is still around. I was 5 days PF... Strange, I thought it was gone. 9 days on the regimen. Will not stop it. I will try and get a blood work done by next week.
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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 #1172 - Jan 16^th, 2013 at 6:12pm Leo - It took me 2 months on the regimen (and that was a "souped up" version) before I became pain free. At first I was taking 20,000 iu of vitamin D3 with a loading dose of 50,000 iu once per week. Let not your heart be troubled. Stay the course.
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Leo VF

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Re: 123 Days PF And I Think I know Why
Reply #1173 - Jan 16^th, 2013 at 6:30pm

My regimen (I am taking it after dinner) because I usually don't eat breakfast and having all this on an empty stomach is no good. Should I force myself to eat in the morning and move the regimen?

Here it is:

A to Z multi-vitamin
vitamin D3 Oil - 10 Drops (each drop is 1000 u.i)
Fish Oil 3000mg
Calcium Citrate 500mg +Magnesium 80mg +Zinc 10mg

Does this sound right?

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1174 - Jan 16^th, 2013 at 6:33pm

Oxy,

There are a number of medical diagnostic labs located across the UK like the following links below...

Most do not require a physician's written prescription... As I recall, the cost of this lab test is less there in the UK than it is here in the US at $65 USD.

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You can also order the 25-Hydroxyvitamin D [25(OH)D] blood spot home test kit at the link below for £25:

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

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