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123 Days PF And I Think I know Why (Read 465918 times)
dereksgirl
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Re: 123 Days PF And I Think I know Why
Reply #125 - Mar 26th, 2011 at 12:11am
 
we get ours at Costco as Batch suggested. Good Brand name for a decent price. Not sure if there are any Costco's in your area though.
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Re: 123 Days PF And I Think I know Why
Reply #126 - Mar 26th, 2011 at 1:59pm
 
Oxyrunner, Julie,

More success stories...  We're starting to get the statistically significant numbers needed to grab attention among the leaders in the field of neurology specializing in CH... 

This is good!  In the mean time, we still have a few who are not experiencing the same favorable results from this regimen as others so I don't want to be too exuberant.  That said, it does appear we're on to a very healthy and inexpensive alternative when it comes to CH preventatives.

I'm still running the numbers and so far it looks like this regimen is well ahead of verapamil in effectiveness at better than 70% effective.  The Cluster Headache survey that 1134 of us took in 2008 indicates 371 CH'ers out of the 725 (49.7%) who took verapamil, rated it effective.

Brew,

I'm half Scott/Scotch and a member of the Over the Hill Gang on a mostly fixed income so I look for good deals.  I figure my daily cost of the combined regimen of Omega 3 Fish Oil, vitamin D3, and calcium citrate+ shown below at 16 cents. 

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I buy these items at Costco.  Sam's Club has some of these vitamins and minerals under Member's Mark label.  You can buy the Kirkland brand over the Internet from Amazon or go to Puritan's Pride web site. They carry the same items.

Costco has the best deal on the 5,000 IU vitamin D3 softgels
$6.99 after $2 OFF Trunature® Vitamin D3 5000 IU Extra-strength 500 Softgels  < 3 cents/day 20 cents/week

Sam's Club:
Member's Mark® Vitamin D-3 5000 IU - 400 softgels  $10.68  < 6 cents/day, <38 cents/week

Puritan's Pride SUNVITE™ MAXIMUM STRENGTH VITAMIN D (D-3) 5000 IU
500 softgels for $14 <6 cents/day,  <40 cents/week

Hope this helps.

Take care,

V/R, Batch

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« Last Edit: Mar 30th, 2011 at 11:56am by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #127 - Mar 26th, 2011 at 3:09pm
 
That helps quite a bit, Pete. I've been paying too much for D3.
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Re: 123 Days PF And I Think I know Why
Reply #128 - Mar 26th, 2011 at 4:14pm
 
Hi

If you don't take vitamin-d softgel's, it's very important that you take the D together with your meal, because vitamin-D is a fat-soluble vitamin.

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Re: 123 Days PF And I Think I know Why
Reply #129 - Mar 28th, 2011 at 5:32pm
 
Why is that? To keep from upset stomache? or to absorb  them better? Sorry for not understanding what you mean. I usually have to be careful what I take, as I am very stomache sensitive...I have had no problem taking the supps, although I did notice I had a problem on St. Patricks Day with the corned beef. I really belive nitrates are very bad during the cluster cycle, and afte reading about ph on batch's posts, I have been trying to eat all alot more alkaline forming foods. (which are better for me anyways)
  Batch, I really hope we are finding an answer...although I don't think the medical field will be to anxious to do a trial... doesn't make the pharmaceutical companies tons of money like verapamil and prednisone.
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« Last Edit: Mar 28th, 2011 at 5:42pm by julieknfla »  
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Re: 123 Days PF And I Think I know Why
Reply #130 - Mar 28th, 2011 at 6:29pm
 
Hi Julie

Yes, the vitamin-D needs fat to get absorbed.
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Re: 123 Days PF And I Think I know Why
Reply #131 - Mar 28th, 2011 at 11:08pm
 
For some time now I have been trying to get a better balance of my pH but to no avail so a little looking around brought me to the food list below.
Breakfast this morning was fresh broccoli & a banana, saliva & urine pH before breakfast was 5.5 "acidic" one hour later pH for both was 6.4 "just below neutral".
I am going to continue with the Magnesium/Calcium/D3 as I have had such good luck with it over the last three years but will concentrate my food intake on the foods that leave an alkaline residual, I'll update how i am going .

A list of Alkaline foods can be found here or just google Alkaline foods.

Cheers
Barry

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Re: 123 Days PF And I Think I know Why
Reply #132 - Mar 29th, 2011 at 7:37am
 
I've been taking the D3, Fish Oil, and Ca/Mg?Zn tabs, but...while I'm sticking with the first two, I think I react badly to the Mg. This is the second time in a couple of years I've tried Mg and both times, I think it induced a more intense CH cycle and experience. No problems with D3 and Fish Oil, and they may actually be helping although I'm still getting a daily hit. I know that's not so bad (boy do I know) but I want to see how I do when I drop the Mg. If I find anything significant I'll post here. Prayers for us all! Blessings. lance
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Re: 123 Days PF And I Think I know Why
Reply #133 - Mar 31st, 2011 at 9:42pm
 
Batch,
Thanks for your original post and research into this possible treatment for the beast. I don't post here much but I recently started another cycle and I'm always looking for something new to try. I hate medications and refuse to take them, even if that means suffering the pain of the CH (which I do about 99% of the time). I normally get hit once in the morning and once in mid-late afternoon. I'm going to head to the nearest pharmacy tomorrow and pick up the items for this cocktail and see what it does for me. I'll post my findings in a week or so once the mixture has time to run its course.
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Re: 123 Days PF And I Think I know Why
Reply #134 - Apr 3rd, 2011 at 12:58pm
 
Pete!

Isn't it time you give Peter (Sandor) and Arne (May) a call.....

Michael

And.....  back to my obscurity.... and flying sailplans...
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Re: 123 Days PF And I Think I know Why
Reply #135 - Apr 3rd, 2011 at 6:36pm
 
Michael,

It's getting close...  A few more success stories and I'll send the letter with the latest stat's to Doctors May, Sandor, and Rozen.

Hugs to Marta, JJ and Ben.

Take care my friend, and keep soaring those big Swiss mountain waves and thermals...

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #136 - Apr 3rd, 2011 at 6:43pm
 
ClosetCHer,

Thanks for the kind words.  I share your dislike for the invasive CH meds.  As long as I've had oxygen at high enough flow rates to make for rapid aborts, I've always preferred instead to give my body what it needs to get well instead of what I wanted to prevent the pain.

Good luck with this regimen...

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #137 - Apr 5th, 2011 at 10:48am
 
I'm on board too.

Just started yesterday with Vitamin D3, Omega 3 and Calcium Citrate (plus magnesium, zinc, B6 and vitamin D). All this in addition to my Flinstone multi vitamin.  Smiley

Silly question, is the vitamin D that's in multi-vitamins the same thing as vitamin D3? In other words, can the vitamin D in the multi-vitamin be counted towards the 10,000 IUs of D3?
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Re: 123 Days PF And I Think I know Why
Reply #138 - Apr 5th, 2011 at 11:25pm
 
Batch/All,
Figured I'd give an update now that I've been trying the D3/Fish Oil regime since last Friday morning.

My cycle prior to starting this had been going for about a month and a half and had just started to ramp up. I was getting about around 2-3 attacks a day, fortunately only 1 was going above a KIP 5. I don't take any other type of medication, I don't have 02 right now (working on welding supply route), and I don't see a neurologist. My cycles occur in no regular pattern, last anywhere from 4-8 months, at one time I was chronic for 2 years, and have remission periods of 1 month to 1 1/2 years (the 1 1/2 years only happened once but I wish it would happen every time!)

I started on Friday by taking 10,000 IU of D3 (5 x 2,000) and 3,600 Omega 3 Fish Oil (3 x 1,200) and did that through Sunday. On Monday morning I increased the D3 to 12,000 IU.

On Friday and Saturday I had my regular 3 hits with one each day turning into a full CH (KIP level 7-8, 30 minutes long each). The other hits were mainly shadows with pain at a KIP 1-3 (very manageable). For Sunday, Monday, and today I've generally been pain free with some major shadowing. By major shadowing I mean almost all day, ranging from just a slight annoyance to the brink of transitioning into a CH. I've never experienced shadowing like this nor the feeling associated with it. The feeling is pressure/light pain on the left side of my head, right on my temple. About 5 times each day (Sun, Mon, Today) the shadowing seems to head towards a CH, sometimes increasing in pain for only a minute or so and sometimes dragging on for 30 minutes, making me wonder if it will become a headache or not. Only once, Today, did the peaking turn into a CH. The bout today lasted 30 minutes and I would describe it as a combined shadow/CH, about a KIP 6. That's the only way I can describe it because I hadn't experienced one like that before.

Since I've never experienced shadows like this nor have I been able to have 3 days PF during my cycle (minus the weird shadow/CH today), I'm assuming this is a result of the D3/Fish Oil regiment. I'll be honest and say that the constant shadowing is annoying, especially with the peaking that makes me wonder if it will turn to a CH or not. But on the other hand, I'd rather have that than 3 CHs that can possibly reach a KIP 10 (more near the end of my cycle). I'm wondering if I should increase my D3 to 15,000 IU, decrease D3, try to mix in the calcium citrate, or something else to tweak my results. Maybe too much D3 is causing the heavy shadowing or maybe I need more to eliminate the shadowing and accompanying peaks all together.

Batch/anyone have thoughts on this? I love feedback.
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Re: 123 Days PF And I Think I know Why
Reply #139 - Apr 6th, 2011 at 3:48am
 
Hey Primetime,

Welcome to the group...  We look fwd to a followup post on your results with this regimen... 

The answer to your question is Yes, your multivitamins likely contain vitamin D3, but the amount is so low I wouldn't worry about counting it... 

For example, two of the Kirkland brand calcium citrate tablets contain 800I.U. vitamin D3 and I still take the 10,000I.U. dose of vitamin D3 softgels. A few hundred I.U. over the 10,000I.U./day of vitamin D3 won't hurt and that's still be far below the mega-dose prescribed by some physicians. 

ClosetCHer,

I don't have an answer for the increase in shadowing you're experiencing, but it does appear to fit the pattern of a reduction in the frequency and severity of CH while on this regimen... 

As far as I'm concerned, a shadow is still a headache and I shot my shadows with oxygen therapy at flow rates that support hyperventilation.  It worked... 

Regarding increasing the dose of vitamin D3, I know a few folks including my daughter who were prescribed as much as 50,000I.U. vitamin D3 twice a week PLUS 5,000I.U. a day for unrelated conditions. 

Being fat soluble with a half-live of 27 days, the metabolite of vitamin D3 stays in our systems for a good while so I'm not concerned if I miss a daily dose.

Again, in keeping with the standard disclaimer, I'm not a doctor and the material covered in this post is for information purposes only.  Please see your PCP or neurologist to discuss vitamin D3 dosing over that listed on the label. 

Just be prepared for push-back as not all physicians are up on the latest dosing recommendations for vitamin D3 deficiencies.  They may think 2000I.U. vitamin D3/day is a "High" dose.

See Reply #73 dated Mar 9th on page 3 of this thread for a download copy of the pdf article by Dr Peter J Lewis, titled: "Vitamin D deficiency: more on diagnosis and management."  You may need to have a copy of this article handy if your physician gives you one of those YGBSM looks.

Please keep us posted...

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #140 - Apr 6th, 2011 at 8:10am
 
Hey, Batch, do you have enough data yet to determine D3 dose ranges? I know 10k is the start. I'm up to 12k. You mentioned your daughter at 50k. Do you think there might be an effective range between the two? I'm going to up again today another 2k putting me at 14k/day. Still doing the fish oil as well. God bless! lance
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Re: 123 Days PF And I Think I know Why
Reply #141 - Apr 6th, 2011 at 10:36am
 
Batch,
Thanks for the help and the article. I'll keep my dosage of D3 between 10,000 and 15,000 IU for the next couple of weeks and note any positive or negative side effects. Like I said I'm working on the O2 situation which I hope to have resolved by the beginning of May. The problem with O2 is that I travel for work (2-3 weeks a month) and obviously can't take an 02 tank with me when the travel requires flying. I'll keep monitoring my cycle, reaction to the regime, and update the thread with my status.
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Re: 123 Days PF And I Think I know Why
Reply #142 - Apr 6th, 2011 at 11:09am
 
Thanks Batch....

I grabbed the wrong bottle of the shelf, my Vitamin D caps are only 1000 IUs, so I guess I'll have to pop a bunch of those. LOL

I remembered the specific supplements but not the amounts, so for the first couple of days I haven't been up to the therapeutic levels yet.

I'll adjust my amounts today and follow up over the weekend.
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Re: 123 Days PF And I Think I know Why
Reply #143 - Apr 6th, 2011 at 4:01pm
 
Batch, 

Please include my husband's experience as well... I posted this on the other site on 03/24:

D3 UPDATE!
After posting my last post, THAT night hubby had a mild headache but was able to sleep through it!  Yesterday some shadowing and "strange feelings/pains" BUT NO HEADACHE!!!  Two nights in a row with no Imitrex!  First "headache free day" he has had since January! Don't know what to think!      His cycle last time lasted 2 months... We are getting down to the line with ~ 3 months this time so not sure if coming off cycle now.  But this is what he is taking.

6,000 mg of fish oil - already been taking for triglycerides
15,000 IU of D3 - for a week now
300 mg of verapamil twice a day
300 mg of lithium twice a day

*** Past 3 /4 days he has tried taking between 5-10 IU of D3 during the day and then the rest at night.

He takes the fish oil, D3 and 2nd verap/lithium at dinner.

I know we aren't out of the woods yet but something is happening!  Just thought I would drop a quick update!


4/6 --  He stopped the Lithium a week ago.  As of today he has not had a headache!  Still has the shadows and mild pains but nothing full fledged!   Cheesy
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« Last Edit: Apr 6th, 2011 at 4:02pm by Nants »  
 
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Re: 123 Days PF And I Think I know Why
Reply #144 - Apr 6th, 2011 at 7:04pm
 
Lance, ClosetCHer,

From the studies and articles I've read and data collected so far it appears the maintenance dosage for vitamin D3 is between 2,000I.U. and 5,000I.U.   I tend to agree with Dr Peter Lewis, MD from down under that 5,000I.U. of vitamin D3 is a good maintenance dose and that 10,000I.U. is a reasonable therapeutic dose with no reports of toxicity as long as there is sufficient calcium supplements taken at the same time.

From the data collected from CH'ers who are using this regimen, it appears that most of them are responding to the 10,000I.U. dose of vitamin D3 with measurable relief by 16 to 24 hours and significant relief by 40 to 48 hours with the most significant area of relief reported being a PF night's sleep.

Increasing the vitamin D3 dose above 10,000I.U. to improve the CH response has us in uncharted waters at this point.  There's just not enough data to support higher dosing rates one way or the other to improve the CH response. 

Granted there are physicians prescribing vitamin D3 as high as two doses of 50,000I.U. a week without any adverse reactions for other conditions.  However, this is usually done under controlled conditions with blood tests for the vitamin D3 metabolite, 25(OH)D3 and calcium to make sure the calcium supplements are sufficient to maintain proper levels.

If you think the full regimen of Omega 3 Fish Oil, vitamin D3, and the calcium citrate tablets with vitamin D, magnesium, and zinc is helping your CH and you want to increase the vitamin D3 dosage to improve the response, the best course of action would be to see your physician and ask for the 25(OH)D3 blood test.  The Vitamin D Council recommends that optimal health is supported by blood levels of 50-80 ng/mL (125-200nmol/L) as identified in a 25(OH)D3 vitamin D blood test.   Get this test along with a regular blood electrolyte test to make sure your calcium level is ok then repeat these tests after a month of higher vitamin D3 dosing.

If your initial vitamin D3 blood test for 25(OH)D3 shows you in the normal range of 50-80 ng/mL (125-200nmol/L), increasing the vitamin D3 dosage may not be necessary as your problem may be a low systemic pH.  In that case I would add another calcium citrate tablet to the basic regimen and start drinking homemade lemonade a couple times a day.  I've found that Baja Bob's sugar free Margarita mix works effectively as it has additional citric acid.

Hope this helps.

Take care,

V/R, Batch

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Re: 123 Days PF And I Think I know Why
Reply #145 - Apr 7th, 2011 at 1:39am
 
Hey Nants,

Thanks for the update with more positive results...  It's all adding up! 

Make sure your husband takes a couple of the calcium citrate tablets formulated with vitamin D3, magnesium and zinc along with the 10,000I.U. vitamin D3 softgels. 

This is important not only as a part of the regimen for CH, but also because the body processes calcium more rapidly with vitamin D3 so you need to supplement with calcium to prevent hypocalcaemia and to keep the blood electrolytes in balance.   I take mine with a glass of orange juice.

The Vitamin D Council reports that doses of 5,000 IU per day from all sources (sun, diet and supplements) are safe for most healthy people and that there are no reports of toxicity up to 10,000 IU per day. But the Council also warns that without calcium and magnesium in sufficient quantities, vitamin D supplementation will withdraw calcium from the bone...

Take care,

V/R, Batch
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« Last Edit: Apr 7th, 2011 at 2:22am by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #146 - Apr 7th, 2011 at 6:47am
 
Hi Batch

I don't take calcium supplement, because vitamin-D increases the calcium uptake from the food. Vitamin-D don't  withdraw calcium from the bone but adds calcium. Vitamin-D have some co-factors needed to work proberly, it's:
Magnesium, Vitamin-K2, Zink and Boron.

Regards
Niels
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Re: 123 Days PF And I Think I know Why
Reply #147 - Apr 7th, 2011 at 11:53am
 
A quick update....

I've been in a cycle since late summer, by far my longest and worst ever. I started on the regimen on Monday but I was a little bit low on the Vitamin D and Omega 3 for the first 2 days, I bumped up the amounts yesterday.

I've been woken up out of sound sleep with a cluster for the last 10 days at exactly 6:34 am.....EXCEPT FOR TODAY!!!

I hope this is a sign of things to come, I actually slept from 2am-7:30am for the 1st time in the last 6 months or so.

Now that I'm up to the correct levels, I'm hoping to see more results but I'll take the baby step.
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Re: 123 Days PF And I Think I know Why
Reply #148 - Apr 7th, 2011 at 3:37pm
 
Hey Primetime,

Thanks for the update...  I hope the pattern improves now that you're up to therapeutic dosing levels of vitamin D3

Niels, you're quite correct, vitamin D3 increases calcium absorption in the gut and serum so will help add calcium to bone matter.  I also agree the vitamin D3 co-factors are important as well and that's why I take the calcium citrate formulated with vitamin D3, magnesium and zinc...  That's why NIH recommends taking calcium supplements with vitamin D3 to improve bone mass and prevent osteoporosis. 

The Institute of Medicine also lists the Dietary Reference Intakes for Calcium and Vitamin D3 at 1000mg./day for men and 1200mg./day for women (1300mg./day if lactating) while taking 4000I.U./day vitamin D3.

The problem pointed out by the Vitamin D3 Council occurs with the higher therapeutic doses of vitamin D3 and minimal intake of calcium from all sources.  They agree vitamin D3 increases calcium absorption in the gut and that this leads to higher serum levels of calcium for bone development, but they also opine that in the absence of the needed calcium intake from food and supplements the opposite can occur.

If you read through the studies on vitamin D3 from deficiencies to mega-dose regiments ≥100,000I.U./week, there appears to be a pattern that too much or too little vitamin D3 can lead to osteoporosis.

As an example, one such study done in Australia where women ≥ 70 years of age were given a single dose of 500,000I.U. during the Fall through Winter time and a control group of women in the same age group were given a placebo.

The women taking the mega-dose of vitamin D3 suffered 31% more falls and 26% more bone fractures than women in the control group taking the placebo.  While one might be tempted to assume from these results too much vitamin D3 leads to osteoporosis, there may be other explanations for the increase in bone fractures...

While vitamin D3 dosing at this level has little to do with how we're trying to reduce the frequency and severity of our CH with the present regimen, the results of this study beg more questions than answers to the question is a lot more vitamin D3 better...  For example, the increase in falls could be due to vitamin D3 (cholecalciferol) intoxication.  The increase in falls could also be due to an increase in physical activity made possible by the vitamin D3 or a combination of both.  In short, this study leaves me with more questions than answers...

In closing there are two things to take away from this discussion as I see it, (1) we all need at least 1000mg. to 1200mg. of calcium from all sources a day.  (2) We also need to be critical when looking at the results and conclusions of clinical studies as it is easy to find similar studies arriving at different and sometimes opposing conclusions...

Take care,

V/R, Batch
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« Last Edit: Apr 7th, 2011 at 10:21pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #149 - Apr 8th, 2011 at 10:30am
 
Starting day 5 and things are looking up.

I actually got 7 hours of consecutive sleep last night and zero...that's right ZERO hits in the last 24 hours.

Batch...you're pretty much hero right now!!!  Grin
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