Click this link to read a post I like on the clusterheadaches.com message board...

May 10^th, 2025 at 3:54pm

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!

New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › More attacks after starting the Vit D3 regimen

(Moderators: Mrs Deej, DJ)

‹ Previous Topic | Next Topic ›

Pages: 1

More attacks after starting the Vit D3 regimen (Read 2852 times)

Cypressnyc

CH.com Newbie

Offline

I Love CH.com!

Posts: 4

More attacks after starting the Vit D3 regimen
Jan 24^th, 2015 at 10:20am

I recently came across the Vit D3 regimen and just started it two days ago. Just a little background - i used to get the attack every other June and by December I will be out of the cycle. but this past year I had it in June and December. My doctor suspect ithe has to do with my traveling to New Zealand (Southern Hemisphere) in Dec as it could have reset my body clock.

So I'm put on high dosage of verapamil, epilim by my doctor and I read in some articles that the magnesium/calcium nitrate in the Vit D3 regimen could interfere with the verapamil..If I have a choice I rather be off the verapamil totally but unfortunately two days after starting on this regimen not only did the attacks not go away Im getting more attacks than before..in fact, at one point I had more than 3 sumatriptan injections within 18 hours and it got me all worried..

I am wondering if this is normal for someone starting on this regimen and also if I should totally lay off verapamil/epilim in order for this regimen to work.. Thanks!!

IP Logged

Mike NZ

CH.com Hall of Famer

Offline

Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: More attacks after starting the Vit D3 regimen
Reply #1 - Jan 24^th, 2015 at 1:05pm

Hi and welcome. Sorry to hear that your trip to New Zealand seems to have helped kick off a new cycle although otherwise I hope you really enjoyed your trip here. It is also possible that your CH just changed on you by itself which is all too common.

What is your verapamil dose? Typically people with CH tend to need about 360-480mg a day although some go as high as 1000mg.

I've seen quite a few people post about an initial increase in the number of CHs they get when they start on the D3, so this isn't unusual. But the benefits can be amazing with quite a few people, including myself, CH pain free now for multiple years.

For the verapamil / magnesium/calcium nitrate they can be taken but do space out when you take each.

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: More attacks after starting the Vit D3 regimen
Reply #2 - Jan 24^th, 2015 at 4:17pm

Hey Cypressnyc,

Did you start the accelerated vitamin D3 loading schedule?

Roughly 5% of CH'ers starting the anti-inflammatory regimen experience an increase in the frequency of their CH. Fortunately, this increase in frequency usually goes away after 5 to 10 days.

As long as you're taking verapamil, you can skip the calcium but not the magnesium. Magnesium is the most important vitamin D3 cofactor and is consumed rapidly at the vitamin D3 doses we take to prevent CH.

Magnesium chloride, magnesium citrate, magnesium malate and magnesium glycinate are the suggested salts of magnesium to take in this regimen. I would avoid any nitrates... Nitrates could be part of your problem...

You'll need up to 750 mg/day magnesium during the vitamin D3 loading schedule and at least 500 mg/day for maintenance.

You can find the latest photo of the supplements I take to prevent my CH. There's also a table illustrating the required supplements and doses at the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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

IP Logged

Hoppy

CH.com Alumnus

Offline

LAUGHTER IS THE BEST MEDICINE

Posts: 1890
Perth WA
Gender: male

Re: More attacks after starting the Vit D3 regimen
Reply #3 - Jan 24^th, 2015 at 4:20pm

Hi and welcome,
You no longer need to take the calcium citrate, "not nitrate"
that's for making concrete Smiley

in the regime
as you get your calcium intake from the Kirkland mature
multi vitamins, and yes its known to send the Smiley

ballistic in some folk when first starting
on this regiment, myself included.

Cheers, Hoppy.

IP Logged

Cypressnyc CH.com Newbie Offline I Love CH.com! Posts: 4	Re: More attacks after starting the Vit D3 regimen Reply #4 - Jan 24^th, 2015 at 6:10pm thanks everyone! Bad on my part - meant to say citrate but typed nitrate instead... I bought tablets that contain both calcium and magnesium citrate. Will try one that is magnesium standalone since that's what recommended. Thanks once again !!
Back to top	IP Logged

littlee

CH.com Junior

Offline

I Love CH.com!

Posts: 28

Re: More attacks after starting the Vit D3 regimen
Reply #5 - Jan 25^th, 2015 at 4:07am

Hi Hoppy,

I also had worries/issues at first with my verapamil. I started the regimen with D3 only and had a couple PFDAN's (day 5&6) then a couple really bad days back to back.

I spoke to Batch at that time (some others as well), fortified my courage and plugged on.

I suggest you keep trying the D3 regimen with accelerated dosing like Batch suggested. For me, my second Super dose (50K) was when I noticed the benefits kick in, which also happened to be the same time I got most the cofactors going as well. I'm on pace to reach 600K D3 in 3 weeks. I take 600mg magnesium, 3K omega 3, normal B and K FWIW. After a week of steady improvement I started adding even 100mg calcium (within the half dose of Mega Mens 50+) while continuing my verapamil (this gets my Vitamin A, Zinc, Boron,etc.).

KNOCK ON MAJOR WOOD....I'm 6 PFDAN'S in a row and shadows only. I hope that's not the kiss of death.

As of now, I'm back in ....'when can I get the hell off this Verap' mode. I actually stepped it down about 1/6th the last two days. I'll probably keep this dosage up for a few more days till after I drop the D3 regimen to maintenance dose level (10K per day) which happens in 3 days. I'll check my blood this week as well and see where (D, Calcium, Magnesium, PTH?) everything stands.

In the future, trying the D3 regimen without any Verapamil would be the plan. Let's see what happens.

Good luck and keep trying!

Mark

IP Logged

Cypressnyc

CH.com Newbie

Offline

I Love CH.com!

Posts: 4

Re: More attacks after starting the Vit D3 regimen
Reply #6 - Jan 25^th, 2015 at 10:11am

Thanks Mark! It is rather comforting to know someone who is going through this at the same time (of course I rather we both not have to experience this at all !).

I just bought magnesium (500mg) and B-50. Will shoot for the 50,000iu D3 tomorrow and hopefully drop the yucky verapamil dosage soon. That stuff is mean!

Hang in there! Will check in with you guys on and off..

IP Logged

Cypressnyc

CH.com Newbie

Offline

I Love CH.com!

Posts: 4

Re: More attacks after starting the Vit D3 regimen
Reply #7 - Jan 27^th, 2015 at 12:27am

Hi guys I'm back!

So I managed to purchase the D3 and the recommended cofactors and started on it two days ago. I was PF for two days. yesterday I popped 50,000iu D3 but had to inject at 10pm and later 4am..I wasn't prepared to wait out to see if those shadows are real...

What else I am on -

500mg Epilim x 3
40mg verapamil x 8
2.5mg naramig
Melatonin

My doctor upped the epilim because I refused to increase the verapamil.

I'm PF for now but the real test will be later tonight. Fingers crossed!

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: More attacks after starting the Vit D3 regimen
Reply #8 - Jan 27^th, 2015 at 5:31am

Cypressnyc,

Thanks for the update... Off hand, with two days PF, I'd say you're starting to respond to the anti-inflammatory regimen. I say that as none of the medications you're taking, although effective in some cases rarely have that dramatic effect.

Epilim (Sodium Valproate) is an anticonvulsant. It's use in treating CH is off label. Although accepted in some circles, epilim is not among the leading prophylactic treatments for CH and is listed as "possibly effective" in the EFNS Standards of Care recommended treatments for cluster headache and other trigemino-autonomic cephalgias. See the following link for details:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Naramig contains naratriptan hydrochloride and is usually prescribed for migraines in tablet form. However as a member of the triptans, it's technically a CH abortive. You indicated you "had to inject." What did you inject? If it was another triptan and you were taking naramig... you were overdosing.

Verapamil is the leading CH preventative, but even at 320 mg/day, I doubt it's responsible for the two day pain free period... I assume you've been taking it for a while... Has it ever resulted in a complete cessation of your CH?

Bottom line... stick with the vitamin D3 loading schedule with all the cofactors and keep your PCP and/or neurologist informed of what you're taking. Be sure to ask one of them for a lab test of your serum 25(OH)D in a month at the end of the loading schedule.

Take care and please keep us posted.

V/R, Batch

« Last Edit: Jan 27^th, 2015 at 5:34am by Batch »

IP Logged

Pages: 1

‹ Previous Topic | Next Topic ›

« Home

‹ Board

Top of this page

©1998-2013 Web Vision Enterprises LLC All rights reserved. All information on this site is protected by international
copyright laws. You may not re-distribute any information from this site without written permission from
Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.
You may view our privacy policy and financial disclosure statement here

DISCLAIMER: All information contained on this web site is for informational purposes only. It is in no way intended to be used as a replacement for professional medical treatment. clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site. All information taken from the internet should be discussed with a medical professional!