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123 Days PF And I Think I know Why (Read 534306 times)

slacker032

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Re: 123 Days PF And I Think I know Why
Reply #1625 - Jan 13^th, 2014 at 2:44pm

Hey Batch,

So I recently started a cycle towards the end of December after being pain-free since June. I had been taking a maintenance dose of:

10,000 IU Vitamin D3 (Nature's Bounty)
2000 mg Omega-3 fish oil (Kirkland)
400 mg Magnesium Citrate (Vitamin Shoppe)
500 mg Calcium Citrate (Vitamin Shoppe)
15 mg Zinc Oxide (Nature Made)
1 tablet Centrum Silver for Men

My clusters started ramping up a few days ago (especially the night-time hits) so I bumped up my D3 intake to 15000 IU/per day starting on 1/9 and I'm also taking 15 mg of Melatonin (Natrol) before I go to bed.

Just got my 25(OH)D results back for a test I took on 1/10 and it was 93.9 ng/mL.

Any suggestions?

« Last Edit: Jan 13^th, 2014 at 2:56pm by slacker032 »

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1626 - Jan 13^th, 2014 at 5:44pm

Hey Slacker,

I've gone over your past posts on this regimen... You're taking the right supplements at the proper doses and it appears you've good control over your 25(OH)D serum concentration.

Skip the calcium for a 3 to 4 days up to a week and keep all the other supplements the same. We've had a handful of CH'ers, both episodic and chronic with 25(OH)D serum concentrations in the high end of the green zone who were still getting hit... Dropping the calcium for a few days to a week helped most of them achieve a favorable response.

Two CH'ers with 25(OH)D serum concentrations comfortably in the green zone 60 to 110 ng/mL, responded in less than 24 hours after cutting their calcium intake.

We continue to learn more about the anti-inflammatory regimen thanks to posts from CH'ers like you. That said, its' not clear why some CH'ers continue to get hit with excellent 25(OH)D serum concentrations.

My guess at this point, and it's just that, a guess... is there are a couple possibilities in play and one or both may be keeping you from a favorable response to this regimen...

The first is a low systemic pH (too much acid) which can play heck with just about every conventional CH medication including oxygen therapy making them less effective.

The second possibility involves the second phase of vitamin D3 metabolism where 25(OH)D is metabolized into 1,25(OH)2D3, the active hormonal metabolite we think is responsible for triggering the genetic expression that down-regulates/suppresses the production of CGRP that is present during cluster headache attacks.

Drinking a baking soda tonic four times a day, an hour after each meal and right before bed should help elevate a low systemic pH... You make this tonic with a half teaspoon of Arm & Hammer baking soda in 4 ounces of water... The directions are on the back of the box.

If you detect any improvement after starting the baking soda tonic... then a change in diet may help. A GOMBS diet is one of the best ways to help alkalize the system.

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Improving vitamin D3 metabolism to 1,25(OH)2D3 by cutting calcium for a few days to a week is still a shot in the dark... The relationship between calcium and magnesium is a yin yang thing... They work well together if the mix/ratio is in balance.

As magnesium plays an essential role in nearly every enzymatic reaction in the body, upping its ratio with calcium for a few days may be all that's needed to improve vitamin D3 metabolism to 1,25(OH)2D3.

Hope this helps.

Take care 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

pete_batcheller

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slacker032 CH.com Old Timer Offline Posts: 325 Los Angeles, CA Gender:	Re: 123 Days PF And I Think I know Why Reply #1627 - Jan 13^th, 2014 at 5:50pm Thanks Batch. So just to clarify, after 3 to 7 days of no calcium, should I definitely start taking the same amount of Calcium Citrate again (500 mg) no matter what the frequency and severity of my clusters are? Also, should I keep taking the 15,000 IU D3 or should I drop back down to 10,000 IU.
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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3708 Bremerton, WA Gender:	Re: 123 Days PF And I Think I know Why Reply #1628 - Jan 13^th, 2014 at 6:44pm Slacker, Good question. Add half the calcium back after a week, or the regular dose every other day. What may be happening is your dietary calcium intake is high enough to cause an imbalance with magnesium when supplementing with both. Take care and please keep us posted. V/R, Batch
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slacker032 CH.com Old Timer Offline Posts: 325 Los Angeles, CA Gender:	Re: 123 Days PF And I Think I know Why Reply #1629 - Jan 13^th, 2014 at 6:45pm Gotcha. Thank you sir and will do.
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1630 - Jan 13^th, 2014 at 6:51pm

Hey Dan,

Great news... Confusing end of cycle with a favorable response to this regimen is common... We tried to clarify this a bit by asking CH'ers, where during your normal cycle period did the response occur?

If the favorable response occurred within the first half to two thirds of the normal cycle period, the odds are the response was not due to end of cycle.

Hope this helps.

Take care, keep it up, and please keep us posted. It appears you're on the mend.

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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Dave_73

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Re: 123 Days PF And I Think I know Why
Reply #1631 - Jan 14^th, 2014 at 5:28am

Hi all
I've not posted in many months but been watching in the background for support... I have a question to try and find comparators. I was first hit in May 13 and went through the period of multiple attacks, pain and the why me questions... After a mix of meds I have settled on Verapamil, O2 and sumatriptan injections.... The Verapamil I have to say reduced my attacks and pain to a manageable level... However I have never really shaken the constant pain albeit at a low level, the pain will increase when an attack presents itself but essentially it never goes. My condition presents itself like a stroke and I have facial paralysis on my left side and down my left arm giving me an almost lazy limb.. My left eye is watery and closed at its peak and at its lowest level I just have the tingling pain and numbness. I went to see my neuro who was concerned about the presence of the stroke like conditions and sent me for an urgent MRI.. All clear leaving me on the right meds but that's it... I'm using the vitamins and this has helped reduce my pain but not PF.
How long would an episodic bout last for.. I'm on month 8 and no let up Sad

Sad

... Can I still fall into remission?
Friday I took another day off work as I felt really tender in my head and just as expected I was hit when least expected it.. 0-10 in seconds and the wife on hand to grab the injection... It wiped me out ...(you know the routine) but needless to say it's not leaving me alone and my concern is am I chronic..
Any advise appreciated
Dave UK

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: 123 Days PF And I Think I know Why Reply #1632 - Jan 14^th, 2014 at 6:00am Hi Dave, Your classified as chronic if you go into your 12th month without a break. Hoppy.
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Mike NZ

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Re: 123 Days PF And I Think I know Why
Reply #1633 - Jan 14^th, 2014 at 3:05pm

Dave_73 wrote on Jan 14^th, 2014 at 5:28am:

How long would an episodic bout last for.. I'm on month 8 and no let up Sad

Sad

... Can I still fall into remission?

The definition of chronic (Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Quote:

Cluster headache attacks occurring in periods lasting 7 days to 1 year separated by pain-free periods lasting 1 month or longer.

So if you've gone 11 months and a day then you are technically chronic. But this is very much just a label, nothing changes other than the episodic label being replaced by a chronic label.

As to it being possible to fall into remission just before the chronic label comes in then my first cycle was an example of this with the CHs finally stopping about a week before the 11 month. This coincided with me starting on the vitamin D3, so it is quite possible that that made me go pain free, stopping me from going chronic.

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slacker032 CH.com Old Timer Offline Posts: 325 Los Angeles, CA Gender:	Re: 123 Days PF And I Think I know Why Reply #1634 - Jan 14^th, 2014 at 5:55pm Batch, Forgot to ask. Do you think I should drop back down to 10,000 IU D3 per day or stick with 15,000 IU for now?
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1635 - Jan 14^th, 2014 at 6:04pm

Slacker,

Sorry... I should have addressed that question the first time around... With your 25(OH)D at 93 ng/mL, you can drop back to a vitamin D3 maintenance dose of 10,000 IU/day.

That said, don't be hesitant to increase the vitamin D3 intake to 15,000 IU/day if you experience a sustained increase in the frequency and severity of your CH.

Hopefully, cutting back on the calcium for a week will get the calcium:magnesium ratio back in balance and this will help you to respond to the vitamin D3 with a significant reduction in CH.

Take care and please keep us posted.

V/R, Batch

« Last Edit: Jan 14^th, 2014 at 6:05pm 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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slacker032 CH.com Old Timer Offline Posts: 325 Los Angeles, CA Gender:	Re: 123 Days PF And I Think I know Why Reply #1636 - Jan 14^th, 2014 at 6:10pm Hey Batch, Just replied to your PM but I'll reply here as well. Since my hits have been pretty severe the past few days, staying at 15,000 IU shouldn't be a problem right?
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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3708 Bremerton, WA Gender:	Re: 123 Days PF And I Think I know Why Reply #1637 - Jan 14^th, 2014 at 7:12pm Hey Slacker, Agree... Nothing wrong staying at 15,000 IU/day... My wife has been on that dose for over 3 years... Loves it! I hope something works for you and soon... Take care, V/R, Batch
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slacker032 CH.com Old Timer Offline Posts: 325 Los Angeles, CA Gender:	Re: 123 Days PF And I Think I know Why Reply #1638 - Jan 14^th, 2014 at 7:29pm Got it. Thanks Batch and good talking to you on Skype. Go Seahawks!
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TheAndyT

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New here. Excited about finding this new haven. D3
Reply #1639 - Jan 21^st, 2014 at 7:11am

Hello everybody. I'm new here and I must say that it is good to know that I am not alone in this struggle. These CH attacks have taken a huge toll on me with work as well as the relationships with loved ones. I have started a new cycle about 1 month ago after 3 1/2 years of being pain free but this is the first time I have really looked everywhere for help because this cycle is very much worse than my other ones. I suffer from attacks daily at KIP level 9 to 10 with numerous stops to the ER and hoping not to wake up ever again. I am still in the process of finding the right medications that work for me as the one's tried have had no effect on me (Imitrex pills and numerous pain killers). I am really excited to read about this D3 system and I am going out to the store later today and buying the supplements to get started on it right away. I must send out much praise to Batch for helping so many people on here and for giving them hope in a hopeless situation like you have for me as well. This brings a bit of light back to me and I hope to feel improvements like other people have reported.

Life's roughest storms prove the strength of our anchors

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TheAndyT CH.com Junior Offline Love is our resistance... Posts: 65 North Hollywood, California Gender:	Re: 123 Days PF And I Think I know Why Reply #1640 - Jan 21^st, 2014 at 7:12am Oh, and BTW. Nice to see a fellow valley dweller in Slacker. I see you are in Sherman Oaks, I am in Valley Village
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thierry

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Re: 123 Days PF And I Think I know Why
Reply #1641 - Jan 21^st, 2014 at 10:22am

Hi, TheAndyT
Firstly a big welcome to the forum. You have arrived home

Indeed Batch's help is precious and highly respected by many here.
I started on the D3 regimen last march and have been almost Pain free since, my attacks are now reduced to a few days long and had only a 9/10 once.
Stick with the regimen (all of its components at the stated doses) and see your life improve greatly. It can take a few weeks to kick in but please don't loose faith as the regimen is effective for 80% of us.
Batch is an invaluable source of knowledge and help and you can look forward to his reply to your post.
Wishing you all the best and success.
Take care
Thierry

« Last Edit: Jan 21^st, 2014 at 10:22am by thierry »

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TheAndyT

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Re: 123 Days PF And I Think I know Why
Reply #1642 - Jan 21^st, 2014 at 11:36pm

Thierry, thank you so much for the wonderful, warm welcome to the forum! I feel lucky to have found such a place. I am very happy to read about your personal success with the D3 regimen and I hope you continue with plenty more successes. I am happy to report that I have just begun with my own D3 regimen today and am looking forward to seeing how it turns out for me. Also I wanted to add that for the first time today I was able to abort out of a KIP/9 today after 15 mins with a cup of strong coffee and an ice pack. I don't know how healthy that is but I also bought myself some Red Bulls and will try those next on my next attack for abortive measures. Any tips or personal experiences on that would be greatly appreciated. As for now I keep my fingers crossed

-Andy

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slacker032

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Re: 123 Days PF And I Think I know Why
Reply #1643 - Jan 21^st, 2014 at 11:41pm

TheAndyT wrote on Jan 21^st, 2014 at 7:12am:

Oh, and BTW. Nice to see a fellow valley dweller in Slacker. I see you are in Sherman Oaks, I am in Valley Village

Hey, that's really close! Sorry to hear about your current cycle. I'm in the midst of one myself but I've been slowly getting it under control with the help of Batch and a few others on this board. Definitely give it a try and stick with it for awhile.

Also, have you considered trying oxygen to abort? It's more effective than Imitrex and way cheaper.

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slacker032

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Re: 123 Days PF And I Think I know Why
Reply #1644 - Jan 21^st, 2014 at 11:45pm

Just to give an update:

I stopped taking Calcium Citrate on 1/13 and added 500 mg of curcumin to my regimen on 1/17. I also started drinking a baking soda tonic 4 times a day on 1/13. Still getting a night time hit or two plus shadows throughout the day but they're not as severe and much easier to abort with oxygen.

Batch,

Do you think I should add 250 mg of Calcium Citrate back into my regimen or should I still lay off it for a bit. I think it's been 8 days since I've taken any.

« Last Edit: Jan 21^st, 2014 at 11:46pm by slacker032 »

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TheAndyT

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Re: 123 Days PF And I Think I know Why
Reply #1645 - Jan 22^nd, 2014 at 1:37am

Slacker....yes very close indeed. As to your question of the oxygen...I have not yet tried it as I do not know where or how to come by it or how the components actually work. I only have state Medi-Cal for coverage but it actually covered a 9-pill supply of 50mg Imitrex worth $450. They are gone now because it was really the only thing I had to reach for but they didn't take effect on me. Do you know of any doctors in the area that have worked for you personally?

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #1646 - Jan 22^nd, 2014 at 2:02am

Slacker,

Thanks for the update. No sense courting trouble, so I'd stay off the calcium until you've got the beast completely under control then add it back slowly.

Most of us get plenty of calcium from our dietary intake so the 500 mg/day calcium part of this regimen is more of an insurance against loss of bone mineral density while taking vitamin D3 at higher does.

Adding GOMBS to your diet can also help if the baking soda tonic appears to be working. A handful a day of Greens, Onions, Mushrooms, Beans - Berries and Seeds - Nuts can help alkalize your system by elevating your pH higher.

I eat fresh berries with breakfast, more fruits with lunch and salads with lots of greens, onions, mushrooms and sunflower seeds with the evening meal. I also keep a big jar of mixed nuts next to the laptop for snacks.

If you're still taking 15,000 IU/day vitamin D3, be sure to see your PCP for a lab test of your 25(OH)D after 30 days.

How about the Seahawks... Seattle is still having seismic tremors...

Take care and please keep us posted.

Take care

« Last Edit: Jan 22^nd, 2014 at 2:07am 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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slacker032

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Re: 123 Days PF And I Think I know Why
Reply #1647 - Jan 22^nd, 2014 at 2:26am

TheAndyT wrote on Jan 22^nd, 2014 at 1:37am:

Slacker....yes very close indeed. As to your question of the oxygen...I have not yet tried it as I do not know where or how to come by it or how the components actually work. I only have state Medi-Cal for coverage but it actually covered a 9-pill supply of 50mg Imitrex worth $450. They are gone now because it was really the only thing I had to reach for but they didn't take effect on me. Do you know of any doctors in the area that have worked for you personally?

I do not have a neuro in the area. My original neuro was in Louisiana and he's the one who gave me a prescription for oxygen. I get my M-tanks delivered by Apria for $25 a pop since I don't have insurance and use this welding regulator with this mask.

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There's a Harbor Freight on Lankershim in North Hollywood. Some people use welding tanks which are a cheaper option than medical oxygen tanks and you wouldn't need a prescription but I wouldn't know where to look locally for that.

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slacker032

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Re: 123 Days PF And I Think I know Why
Reply #1648 - Jan 22^nd, 2014 at 2:29am

Batch,

Yea, I actually have a smoothie for breakfast which includes a handful of greens and berries so I think I should be good in that department. I also snack on some lightly roasted/salted mixed nuts along with some trail mix throughout the day.

And go Seahawks! As a Raider fan, I'm fully rooting for you guys to beat the Broncos.

« Last Edit: Jan 22^nd, 2014 at 2:31am by slacker032 »

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maz

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Re: 123 Days PF And I Think I know Why
Reply #1649 - Jan 22^nd, 2014 at 7:03am

Hi TheAndyT
I know you guys over the pond have issues with what your insurance will cover, but if you can afford them imitrex auto injections will work in a few minutes. The pills are not often recommended by us as they take too long to get into your system but the injections are a life saver.

I believe most of you can only get 2 a month which is rediculous, but if you continue to collect them when you are out of cycle you can stock pile a few and be ready for when the devil comes calling.
Maz.

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