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New here, Off Topmax and on D3 Reg. (Read 9726 times)

vidjoe CH.com Newbie Offline I Love CH.com! Posts: 6	New here, Off Topmax and on D3 Reg. Jul 29^th, 2013 at 6:54am I was taking Topamax and turned into loooone , bad stuff. Took weeks to come off it. Now on the D3 reg for a week and only 2 CH's last couple of days, down from 5 or more a day. Thanks for all the info on this site. By the way the D3 reg. has helped my Fibromyalgia pain also.
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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: New here, Off Topmax and on D3 Reg. Reply #1 - Jul 29^th, 2013 at 8:29am That's great! We love to hear success stories. Let us know your progress, or if you slip back into cycle, what you're doing to adjust. God bless. lance
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: New here, Off Topmax and on D3 Reg. Reply #2 - Jul 29^th, 2013 at 9:00am That's great news. 3 years pain free on d3 for me. Hope it works as well for you. Joe
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Vinnie

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Re: New here, Off Topmax and on D3 Reg.
Reply #3 - Jul 29^th, 2013 at 11:00am

Guiseppe,

I've been meaning to ask you and the others - can you give me which variation of the 'recipe' you are using and exactly the brand names? I have read several times that people for whom the D3 regimen worked had to at some point switch brands and the regimen lost efficacy. So I think controlling for brand is very important.

Thanks.

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vidjoe

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Re: New here, Off Topmax and on D3 Reg.
Reply #4 - Jul 29^th, 2013 at 2:40pm

I got them all on ebay, Kirkland Calcium citrate (it has the Zinc and Boron in it), Kirkland Fish oil, Natures Bounty D3, Natures Made Magnesium, Botanic Choice Vit. K.
I used this as my starting point on another post.

Omega 3 Fish Oil - 2000 to 2400 mg/day
Vitamin D3 *    - 10,000 IU/day
Calcium **       - 500 mg/day (calcium citrate preferred)
Magnesium       - 500 mg/day (magnesium citrate or magnesium gluconate)
Vitamin K ***    - 100 mcg/day
zinc                   - 10 mg/day
Boron                -    1 mg/day

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maz

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Re: New here, Off Topmax and on D3 Reg.
Reply #5 - Jul 31^st, 2013 at 5:38pm

Hi all, I'm so pleased so many of you are having success with the D3 reg.

I've been having shadows for a couple of weeks now - kip 3 and the last 2 nights running I have had a hit of kip 6. Just one each night.

I wanted to try the D3 reg but didn't know when. Should I wait till I'm in remission, or when I'm having a full blown episode, or should I just start now. Any way I decided to get on with it and try to prevent the bad attacks. Started 2 days ago. Still having the K3's and waiting to see if I get a K6 again tonight. If this reg works for me how long will it be before I notice an improvement?

Wishing you all continued success.
Maz

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Re: New here, Off Topmax and on D3 Reg.
Reply #6 - Jul 31^st, 2013 at 5:50pm

From Batch's link:

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

Get on it NOW......stay on it for life.

Joe

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: New here, Off Topmax and on D3 Reg. Reply #7 - Jul 31^st, 2013 at 5:50pm Vinnie, sorry I missed your question, I use the Kirkland brands from Costco. Joe
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vidjoe CH.com Newbie Offline I Love CH.com! Posts: 6	Re: New here, Off Topmax and on D3 Reg. Reply #8 - Aug 1^st, 2013 at 7:34am Haven't had any ch's in 5 days. Weeeeeeeeee!!! Seems to be working for me, (fingers crossed)
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: New here, Off Topmax and on D3 Reg. Reply #9 - Aug 1^st, 2013 at 9:09am That's awesome news to start the day with! Joe
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FrankF CH.com Alumnus Offline Posts: 397 Simi Valley, CA, USA Gender:	Re: New here, Off Topmax and on D3 Reg. Reply #10 - Aug 2^nd, 2013 at 6:02pm I started the D3 treatment today, hope it works for me as well. Also got prescriptions for O2, verapamil and Imitrex injections. I agree about the Topamax (dopeymax). I would go to work while I was on it and couldn't remember how to do my job.
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Batch

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Re: New here, Off Topmax and on D3 Reg.
Reply #11 - Aug 3^rd, 2013 at 2:56am

Hey Vidjoe,

That's awesome news! Thanks for the wonderful updates...

Frank, I used to live 24 minutes South of you and to the right in Camarillo while I was flying out of VX-4 at NAS Point Mugu in the early 70s.

The odds are clearly in your favor that the anti-inflammatory regimen will work for you like it has for many others.

Try to get the lab test for 25(OH)D. It will help even though you've already started taking vitamin D3. The main reason to have the results of this lab test at this point is to select the optimum vitamin D3 dosing schedule. If you're 25(OH)D serum concentration is still less than 30 to 40 ng/mL, you can use a more aggressive vitamin D3 dosing schedule like 20,000 IU/day vitamin D3 with a once a week loading dose of 100,000 IU on top of the daily dose.

This will get you into the green zone (60 to 110 ng/mL) tout suite and likely with a favorable response... like pain free...

This vitamin D3 dosing schedule works out to a little over 34,200 IU/day so you can stay on it up to a month if necessary before dropping back to a maintenance dose of 10,000 IU/day. In any event, you'll need another lab test at the one month mark after starting this regimen. Talk to your PCP or neurologist about this...

If either gets hissy or the willies... show them the following link for a study where 48 vitamin D3 deficient youths, (25(OH)D <20 ng/mL) were given a single oral dose of 600,000 IU vitamin D3...

That single dose of vitamin D3 elevated their 25(OH)D by an average of 60 ng/mL in three (3) days.... with no evidence of vitamin D3 intoxication as indicated by total calcium serum concentration above the normal reference range...

Actual Results: The 25(OH)D level was
15.8 +/- 6.5 ng/ml at baseline and became
77.2 +/- 30.5 ng/ml at 3 d (P < 0.001) and
62.4 +/- 26.1 ng/ml at 30 d (P < 0.001).

PTH levels concomitantly decreased from 53.0 +/- 20.1 to 38.6 +/- 17.2 pg/ml at 3 d and to 43.4 +/- 14.0 pg/ml at 30 d (P < 0.001 for both). The trends were maintained in a subgroup followed up to 90 d (P < 0.001).

Mean serum Ca and P significantly increased compared to baseline, whereas serum Mg decreased at 3 d.

1,25-Dihydroxyvitamin D significantly increased from 46.8 +/- 18.9 to 97.8 +/- 38.3 pg/ml at 3 d (P < 0.001) and to 59.5 +/- 27.3 pg/ml at 60 d (P < 0.05).

Conclusions: A single oral dose of 600,000 IU of cholecalciferol rapidly enhances 25(OH)D and reduces PTH in young people with vitamin D deficiency.
PMID: 20660032

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Take care and please keep us posted.

V/R, Batch

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maz

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Re: New here, Off Topmax and on D3 Reg.
Reply #12 - Aug 4^th, 2013 at 5:32pm

Hi all,
Just to update. I am now on day 5 of the D3 reg. I've had no more real hits, though I am still having regular shadows of K1 or K2, but nothing worse than that. I feel really hopeful.
Thanks so much everyone for this advice. It makes me feel a whole lot better just knowing that I'm doing something positive.

Smiley

Hugs to all.

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tammy.vespo

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Re: New here, Off Topmax and on D3 Reg.
Reply #13 - Aug 4^th, 2013 at 9:54pm

Hi, I've been a sufferer since 1992, and by complete luck, I found what I think is a cure for my clusters. My mum had given me some natural vitamins for my carpal tunnel. My dad suggested for me to try them for my clusters. I figured I had nothing to lose so I tried them. Keep in mind that I had used the following in the past: Oxycontin, Dilaudid, percacet, blood thinners, propropanol, Imitrex injections, oxygen, etc. I take these vitamins daily (3 pills at night) and haven't had a cluster since. They truly work: Infla-Heal Plus from New roots herbal. I have no affiliation with the company whatsoever; my mum suggested them for my carpal tunnel..imagine that! It's a true miracle and I must share...

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Guiseppi

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Re: New here, Off Topmax and on D3 Reg.
Reply #14 - Aug 4^th, 2013 at 11:55pm

Great to hear you're pain free Tammy, I hope you're keeping track of cycles, when they stopped and started, and how this compares to what happened when you started this regimen. Coincidence can sometimes be confused with causation, the beasts ability to morph makes it even tougher sometimes to establish the cause and effect cycle. My fingers are crossed that your pain free time continues, it's what we all hope for.

Did a search of this product, this is what it contains:

Serratiopeptidase 17.500 AU
Pancreatin concentrate (4 x 240 mg) 960 mg
Bromelain (2400 GDU)
125 mg
Papain 970.000 PU
Trypsin (1:150) 18,000 USP 120 mg
Providing: Chymotrypsin 480 USP 20 mg
Rutin 85 mg
L-Cysteine 10 mg
Zinc (Gluconate) 2.6 mg

Would be curious to hear from some of the more "chemist educated/research oriented" people about how this compares to our anti-inflammatory regimen.

Joe

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maz

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Re: New here, Off Topmax and on D3 Reg.
Reply #15 - Aug 5^th, 2013 at 8:07pm

Day 6 of the D3 reg, and I'm a little disappointed today. I've had lots of K2 and K3 shadows and one K6 around lunchtime, although I know it could have been much worse. That said, I have a tummy bug and been throwing up all day, so todays dose will have been lost. I feel a little better now so will carry on with the reg tomorrow. I'm still hopeful as I have definitely noticed a difference since starting.

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maz

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Re: New here, Off Topmax and on D3 Reg.
Reply #16 - Aug 10^th, 2013 at 5:21pm

To update again, I am now on day 11 of the D3 regime. Had a bit of a relapse around day 6 but was not well so that may have contributed in some way as the D3 reg would not have been absorbed properly. Since day 8 I have had nothing more than K1 and K2, so I'm really pleased. I can live with that. If only this was as bad as it gets............ Smiley

Thanks Batch for your messages and encouragement, and all of you for your support and friendship.

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: New here, Off Topmax and on D3 Reg. Reply #17 - Aug 10^th, 2013 at 7:24pm Great news Maz, hoping it lasts you a lifetime. Joe
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vidjoe CH.com Newbie Offline I Love CH.com! Posts: 6	Re: New here, Off Topmax and on D3 Reg. Reply #18 - Aug 16^th, 2013 at 5:58am 22 days with no pain this is to good to be true. Doc says I need a blood test for the D3 range next month. I told him i'm not going to stop taking this no matter what.
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waymoz

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Re: New here, Off Topmax and on D3 Reg.
Reply #19 - Aug 17^th, 2013 at 5:04am

So much good news with the Vit D3 regime. A pat on the back to the people who have found relief and to the ones still suffering, I hope you guys find something that helps you manage ASAP.

I'm very happy with the regime so far, it's saved me from the beast. Although still early days in the cycle but very optimistic!

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Batch

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Re: New here, Off Topmax and on D3 Reg.
Reply #20 - Aug 17^th, 2013 at 4:12pm

Hey Vidjoe,

When you see your doc for the 25(OH)D lab test, be sure to have him test your total serum calcium and PTH (parathyroid hormone).

A high 25(OH)D serum concentration > 100 ng/mL should not be a cause for concern as long as your total serum concentration of calcium is within the normal reference range.

My wife takes 15,000 IU/day vitamin D3 and her 25(OH)D hangs consistently around 105 to 110 ng/mL and her total calcium stays within the normal reference rang with no problems noted...

The rational for the calcium test is simple... The 25(OH)D lab test by itself is not an accurate indication of vitamin D3 intoxication... The resulting total calcium serum concentration is...

If your total calcium is over the normal reference range, it's time to cut your vitamin D3 intake for a week or two then restart at 5,000 IU/day and test everything again in a month. Both your 25(OH)D and total calcium will drop fairly rapidly.

As a side note, there are no reported deaths from vitamin D3 intoxication in the FDA reporting system. Unfortunately, verapamil and some of the anti-psychotics used to treat cluster headaches have resulted in several deaths...

Compare and contrast the following two links. The first is for vitamin D3 and the second for verapamil:

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Your PTH should also be at the lower end of its normal reference range.

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

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Re: New here, Off Topmax and on D3 Reg.
Reply #21 - Aug 18^th, 2013 at 3:12am

When you see your doc for the 25(OH)D lab test, be sure to have him test your total serum calcium and PTH (parathyroid hormone).

A high 25(OH)D serum concentration > 100 ng/mL should not be a cause for concern as long as your total serum concentration of calcium is within the normal reference range.

When you see your doc for the 25(OH)D lab test, be sure to have him test your total serum calcium and PTH (parathyroid hormone).

A high 25(OH)D serum concentration > 100 ng/mL should not be a cause for concern as long as your total serum concentration of calcium is within the normal reference range.

When you see your doc for the 25(OH)D lab test, be sure to have him test your total serum calcium and PTH (parathyroid hormone).

A high 25(OH)D serum concentration > 100 ng/mL should not be a cause for concern as long as your total serum concentration of calcium is within the normal reference range.

When you see your doc for the 25(OH)D lab test, be sure to
Batch wrote,

have him test your total serum calcium and PTH (parathyroid hormone).

A high 25(OH)D serum concentration > 100 ng/mL should not be a cause for concern as long as your total serum concentration of calcium is within the normal reference range.

Hi Batch,
I was'nt aware of this.

Hoppy.

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metrolamar

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Re: New here, Off Topmax and on D3 Reg.
Reply #22 - Aug 31^st, 2013 at 9:34am

I am coming off Topamax now and starting the d3 reg. My appetite is very low right now and I am having some withdrawls. But I agree Topamax is some nasty stuff.

Glad to hear the D3 reg is working. I have high hopes for it as well....today will be my third day taking the vitamins. This web-site has really given me a lot hope for the future.

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mackenzie10 CH.com Newbie Offline I Love CH.com! Posts: 1	Re: New here, Off Topmax and on D3 Reg. Reply #23 - Aug 31^st, 2013 at 2:02pm What exactly is the D3 regimen? I'm new here and just reading through all these posts, feeling a bit overwhelmed. Just realizing my migraines are actually CH, and trying to get a handle on what I can do to help myself. Thanks so much.
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maz

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Re: New here, Off Topmax and on D3 Reg.
Reply #24 - Aug 31^st, 2013 at 5:12pm

Hi Mackenzie10 and welcome to clusterville. Smiley

Go to the "medications, treatments and therapies" board, and read the thread "123 days pain free ....and I think I know why". That will tell you all you need to know about the vitamin D3 regime. It has swept the boards and been successful for over 80% of those who have tried it.

Then, read everything else. You will find many useful tips and suggestions. Have you tried oxygen, imitrex, and high energy drinks. You will find all the info here if you search around and always someone ready to listen and offer advice. We all go through the same as you and are all ready to help a fellow sufferer, even if it's only by listening. We are a whole new family......The clusterheads.

Do try the D3. and good luck with it. Stick around and let us know how you get along.

Maz.

« Last Edit: Aug 31^st, 2013 at 5:15pm by maz »

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