Hi!

I was diagnosed with CH in the ER 2 weeks ago, then saw my PCP 6 days ago and was set up with O2, prescribed 180 mg verapamil to start and a 15 day prednisone tape starting at 50 mg. The next day I started researching cluster headaches, found this forum. I found this thread very interesting and took lots of notes and started the anti-inflammatory regimen to the best of my ability about 5 days ago. I have supplements from various previous experiments to feel better, so they're not exactly has been suggested but I am okay with using them for now to save money.

Okay, long intro done, now to my question. Am I doing this right? I am taking:

Barleans Fish Oil Omega-3 1000 mg each; 2-3 a day with meals

Kirkland Vitamin D3 2000 IU; 2 with 2 meals a day, 1 at bedtime = 10,000 IU

Womens One a Day multivitamin which has:
1000 IU vitamin D3
25 mcg vitamin K
50 mg magnesium
15 mg zinc
500 mg calcium (elemental)
So that brings my D3 total up to 11,000 IU a day

I have a calcium-magnesium supplement but it's calcium carbonate with magnesium oxide, so absorption seems to be an issue. Plus with the verapamil its driving me crazy to figure out the best time to take it. Instead right now I am skipping it (the cal/mag supplement, not the verapamil) and using a magnesium supplement to see if I can approximate a 2:1  cal/mag ratio with the calcium in the multivitamin. Magnesium citrate 200 mg once a day, which is 500 mg calcium to 250 mg magnesium. I don't know if that is enough?

I also take a b complex vitamin for general health and energy, and have started taking 6 mg melatonin at night.

Thanks.

FYI to the newbies on this regimen...Calcium citrate alone on an empty stomach has been known to cause nausea.  Take the vitamins with food!

-Gregg in Las Vegas

JackBurton wrote on Jan 15^th, 2012 at 3:56pm:

It doesn't seem like nausea is that prevalent, yet perhaps most people take the regime with food, which should help with stomach upset / nausea.

Do you take your with food? If not, try that.

I'm still not 100% clear on everything, yet perhaps your 'fish oil' isn't ideal. Does it give you a DHA and EPA count? Its kinda like vitamin D, which from what I've learned is the same as D3. unless I'm mistaken. Yet when you look at the vitamin shelf there are Vitamin D bottles beside D3 bottles.

Also there's half a dozen different Omega 3 / fish oil bottles that probably all have the same thing inside them.

I would suspect the Fish oil would be the cause of Nausea, so try to take those with food, and I don't think you need 4 pills worth. I'd try switching brands and get a Omega 3 'select' so you don't need as much 'oil' to get the desired ingredients (DHA and EPA).

My 3 pills of Omega 3 'select' provide 900 mg EPA (300 each) and 600 mg of DHA (200 each), with 1500 mg Omega 3 fatty acids (500 each) (derived from 1000 mg of pure molecularly distilled sardine and anchovy oil). Their "Jamison" brand.

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I'm only to page 6 on this thread but I just had to post because I'm so excited! I went out just now and got all the supplies. I also got some redbull for hubby to drink before o2 (we are new to o2 and I aborts but does not "stick." they come back). I am currently drinkIng one of the redbull myself because I've Been unable to sleep since his remission ended and life is kind of a drag for both of us right now...

So he had his first HA in 3.5 years on Saturday. Before remission he had them from age 6 till age 28. Always episodic and following the same 1 mo on/ 3 mo off schedule. No hit Sunday night. Then got hit Monday night @ a 7+. Tuesday he tried to nap on a break at 9 am and 30 min later got an attack. So I ran out and spent $330 rigging up some welders o2 for him. Another hit started Tuesday afternoon, stopped by the o2.

Last night he had to attempt aborting with o2 THREE times before it went away. And then twice again today. The beast doesn't like to be pushed back, he just throws a temper tantrum later

As soon as he gets back from his testosterone shot I will give him all these supps!

I'm really hoping for a quick reaction time. He has been working his ASS off preparing for a CrossFit competition this weekend that he could place well in. The HA could ruin all his hard work

I'll chime in tomorrow!

RDT, that's low. I think its 23.2 ng/ml. Ideally you want 90 ng/ml, if I'm not mistaken, so I'd say your very low.

CC_stole_my_Harte, I would tell him to avoid 'naps' they always bring on a CH for me and many others. I know we all need sleep, but if possible try to avoid it.

PlayDoh wrote on Jan 18^th, 2012 at 5:48pm:




Yep no naps!!! And that sucks because I love naps

RTD wrote on Jan 18^th, 2012 at 5:59pm:

My pcp had wanted me to take 1000 iu of vit d to get my level up to 80 nmol/L.  She considered that good.  Still well below what people are finding is necessary.  According to Batch's chart it will take approximately 40 days, at 10000 iu vit d/day, to reach the 150 nmol/L. 
I'm curious why your doc had given the 25(oh)D level in nmol/L.  I see that you're in America where typically the vit d level is expressed in ng/ml.  The rest of the world typically uses nmol/L.

Gregg,

1:09 am? Dam you stay up late. Yeah its my bad on the nmol/L   ng/mL Thing. My doc called me with the results so I'm sure it was ng/mL. It was his office girl who initially called and just said my levels were fine. I had to ask her for the number, so I'm sure it was the ng/mL range.... Didn't get the mask yet, hopefully today.

Friday sounds good, I just have to be more careful of what I eat. I should have known better. Besides I finally got the building permit for that job so I will be out of town a lot over the next month so I'd like to get together before this weekend. It does my brain good to talk to someone who knows what we deal with. 

I'll call you later this morning
RTD

This regimen is more than vitamin D. I don't know what my levels were back in late June when I begun following the regime, having to eat 18 pills á 400 I.U (max allowed in Norway).  But I know where I came from, May and June being particularly evil, and the last 12 months my first encounter with the chronic version of CH.

However - my point is: The effect of the regimen was instant and I was PF the third night.  One may wonder why, because building up the optimal levels of Vit D serum takes time. That's why I sometimes get the feeling that  Ca and Mg don't get the credit the probably deserve, especially Mg.  I actually broke out of a vicious cycle and a cycle of cycles (chronic CH) in a matter of days. That's close to busting if you ask me.

Another important point:  Split Mg in one morning and one evening dose, and always eat Vit D with food, preferably with fat.

Hulk,

Adjusted the clock. probably going to try the verap soon although I may have to run off to Cali as my mom is not doing very well. Having some tests done on her liver right now and may be admitted later today. I'll know more later


RTD

There was too much good info in this thread to follow each post. BUT...

I started taking D3, Omega 3 Fish oil, and melatonin ( at night). Seems to have helped.

( could also be verapamil taking effect)

Thanks for all the info.