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123 Days PF And I Think I know Why (Read 444675 times)
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Re: 123 Days PF And I Think I know Why
Reply #1400 - May 12th, 2013 at 3:27pm
 
Gonna try this. Already take fish oil, upped my D3, taking Costco mature vitamin and Os Cal. What else? Should I take a big dose of D3 to start? They sell 10,000 ones. Sorry new to all this. Meds have cut O2 breakthru ones to k6. Topamax and Verapamil. I week 3 of first major cycle.

My major discovery is most people think a major headache is a hangover. They have no idea. Including employers. Embarrassed
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Re: 123 Days PF And I Think I know Why
Reply #1401 - May 12th, 2013 at 5:31pm
 
Read the following thread. It will tell you everything you need to know:

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Re: 123 Days PF And I Think I know Why
Reply #1402 - May 13th, 2013 at 4:10am
 
Re: Magnesium tolerability.

Hi to all,

Batch, you may want to run your eye over this and see what you reckon in relation to appropriate Magnesium absorption. Your opinion and expertise, as always, is invaluable.

I am on the regimen, my chronic CH is still there, as I find out from withdrawing and re-introducing the regimen in order to establish efficacy. It is working well for me so far.

I have had reports of poor Magnesium tolerability from quite a few regimen users on the Aussie CH site. I myself am struggling with finding the right magnesium supplement. Mag Citrate seemed to cause too many Gastrointestinal issues, despite the high bioavailability, it increased gastrointestinal motility and reduced GI transit time to the point where (I think) other regimen co-factors were passing through the system, before they could be absorbed.

Also causing excessive reflux, which required that I resume a proton-pump inhibitor (Nexium) which, again, appears to block nutrient uptake. When I took Mag citrate, I had reflux real bad, went for the Nexium and within 36 hours, BANG, CH again. Drop the Nexium and the Mag Citrate and add a D3 loading dose, and we're away again, CH free. Smiley

So, I am left with the Mag Oxides in small amounts found in Centrum, total 100mg per day, which is a small amount of a Mag with low bioavailability. I'm still looking for a good, tolerable source of Magnesium in my regimen for CH. A work in progress...

One Aussie CH site user suggested Magnesium Orotate, which I have not been able to find much research on.

An aside here, with relevance...
Another friend of mine has Cervicogenic Headache.
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His condition involves strong unilateral face pain behind the eye, into the jaw and temporal areas. The onset is quick, but the duration much longer - days and/or weeks, very different from CH, with severity much less than CH, but quite disabling for him nonetheless. His condition involves degeneration of cervical neck structures (as revealed in scans), resulting in some disc bulging and pressure on C1-2-3 nerves, which are connected to the Trigeminocervical nucleus.

About Cervicogenic Headache:
"The condition’s pathophysiology and source of pain have been debated, but the pain is likely referred from one or more muscular, neurogenic, osseous, articular, or vascular structures in the neck. The trigeminocervical nucleus is a region of the upper cervical spinal cord where sensory nerve fibers in the descending tract of the trigeminal nerve (trigeminal nucleus caudalis) are believed to interact with sensory fibers from the upper cervical roots. This functional convergence of upper cervical and trigeminal sensory pathways allows the bidirectional referral of painful sensations between the neck and trigeminal sensory receptive fields of the face and head."

This type of headache is generally responsive to anti-inflammatory treatments, Indocid, Ibuprofen, Diclofenac etc. Trouble is, the poor bugger has a very rare GI condition called Achalasia (Very complicated condition of the Esophagus) His GI system does not tolerate run-of the-mill anti-inflammatory approaches, whatsoever.
Like CH, these headaches of neck origin do not respond well to opiates, or most other treatments. The Achalasia excludes him from most otherwise effective NSAIDs/medications, for various GI reasons.

We needed to find him a means of anti-inflammatory relief after all others had shown positive responses, but failed the GI tolerability test for him in his very specific condition.

Noting the anti-inflammatory response he had seen from medication in his headaches but not tolerated for GI reasons, I suggested he try to customise a regimen adaption for his specific needs. We came up with a regimen adaption for him, but did not need to aim as high with D3 dosing (The guy is 6"3 and 55kg, thin as a rake due to the Achalasia condition and we're not dealing with CH here):

He takes daily:
4000IU D3
Fortified high Calcium milk supplement
6 X 1500mg Fishoil
2 X Centrum Multivitamin (Vit A, K etc)

After 6 months of this, due to the health benefits of this regimen alone (No colds, subsequent loss of appetite, weight loss and hospitalization), he is now 65kg and looking healthy for the first time in 15 years. That's a 10kg increase, that has not occurred in the last 15 years.
Both GPs and my mate have put this down to the only introduced variables - this regimen. The 25(OH)D tests are low for CH (160nmol/l), but appropriate for his weight and condition.
(Thanks again Batch, your ideas have saved a life here, though not CH related)

We were experimenting, introducing co-factors one at a time and got to Magnesium Citrate. He reported almost complete headache relief once introducing Magnesium Citrate, but it was again, intolerable due to GI issues, especially in Achalasia. With no room for reduced GI transit times and potential weight loss, the Mag Citrate had to be quickly abandoned. Most other types of oral Magnesium were even more poorly tolerated in his condition.

We felt we had really cracked it with the Magnesium, with no head pain whatsoever, but the lack of Mag tolerability just got the better of him. So with a heavy heart and a bloody sore head, my friend near gave up and went down the Oxycontin route, which I helped steer him well away from.

I investigated other means of getting Magnesium into the body, other than the GI route. Mineral absorption across the skin is generally poor, but I remember the old Epsom salt baths, otherwise known as Magnesium Sulfate.

We ordered up a 25kg bag of bath grade Magnesium Sulfate.
After a couple of weeks using around 180gms, in a 60L bath at 50 degrees Celsius, he reported his headaches had backed off significantly, now gone.

I used this study as a starting point, noting that Magnesium levels found in the serum and urine had increased significantly after Magnesium Sulfate baths.

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I know in my friend's case, this is not CH we are treating, but if the studies are correct, maybe this is a way for CHers to get the Magnesium they need, if lack of GI tolerability has otherwise ruled out it's use?

Just an idea...

Cheers, Ben.
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Re: 123 Days PF And I Think I know Why
Reply #1403 - May 13th, 2013 at 7:08am
 
It seems like an uncomfortable idea, but a suppository might help with absorption and avoid the GI effects.  Based on a google search, it looks like there aren't too many options.  Thoughts?
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Re: 123 Days PF And I Think I know Why
Reply #1404 - May 13th, 2013 at 8:06am
 
Regarding magnesium...it took me a couple of tries to find a form which did not cause GI upset.  I finally had to settle on a more expensive product, but it has been working very well for me so far.  It is a 100% chelated magnesium--chelated with the amino acids glycine and lysine. Because of this patented bonding to an amino acid, it can be taken with or without food. Although, I usually take it with food.  My  240 count bottle costs between $15-$18 depending on the company from which I order.  I have been taking three 200 mg tabs/day, which is keeping me pain-free.  When I'm fully past my usual CH episode season in a few weeks, I hope to cut back to two tabs/day and see if that would be adequate. The side benefits of good magnesium absorption for me has also been a noticeable reduction in nerve pain from some other conditions I deal with. 
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Re: 123 Days PF And I Think I know Why
Reply #1405 - May 13th, 2013 at 3:41pm
 
Birdman, Hoss, All,

Sorry for the delay in responding, but I wanted to review the latest thinking on muscle cramps and magnesium supplements...

Over the last two years, it's become apparent there are a few rules of thumb we need to keep in mind when taking the anti-inflammatory regimen. 

1.  The first and most important rule of thumb is simple...  See your PCP or neurologist for the lab test for 25(OH)D and discuss this regimen.

2.  If you experience an abnormal symptom after starting this regimen like cramps, nausea, diarrhea, an allergic reaction for more than a day...  stop taking the entire regimen for a day or two to see if the symptom clears...  If it doesn't...  see your PCP or neurologist.

If the abnormal symptom clears, use the process of elimination to determine which of the supplements is responsible for the abnormal symptom: Restart the regimen with vitamin D3 then add the Omega 3 fish oil and each of the remaining cofactors a day or two at a time. 

3.  10,000 IU/day vitamin D3 is the maximum sustained safe maintenance dose for most of us, but what is even more important is the 25(OH)D serum concentration.  The average 25(OH)D response to a 10,000 IU/day dose of vitamin D3 is 85 ng/mL ± 10%

The raw empirical data collected from CH'ers who have experienced a therapeutic cluster headache response resulting in a significant reduction or pain free state occurred in what I called the "Green Zone" range of 60 to 110 ng/mL reported lab results.  However, as the normal reference range for 25(OH)D is 30 to 100 ng/mL, there's no sense in giving your PCP or neuro angst by pushing your 25(OH)D above 100 ng/mL unless the two of you are in agreement on the vitamin D3 dose and target 25(OH)D serum concentration...

It's important to test your 25(OH)D levels every one to two months until the serum concentration reaches a stable equilibrium after around 5 months of continuous vitamin D3 dosing. Get tested every month if taking vitamin D3 at doses greater than 10,000 IU/day.

Regarding a 25(OH)D serum concentration of 115 ng/mL.  If that's the 25(OH)D serum concentration that keeps you pain free... no problem.   Given what we've learned over the last two years, a 25(OH)D serum concentration this high indicates a vitamin D3 dose of 15,000 to 20,000 IU/day.  200 ng/mL is the low end of the 25(OH)D serum concentration associated with vitamin D3 intoxication... as indicated by a higher than normal total calcium serum concentration.

The online survey of anti-inflammatory regimen users indicated that among the 81% who experienced a favorable response and then had the 25(OH)D lab test, the average 25(OH)D serum concentration was 81.4
ng/mL, (203.5 nmol/L).

4. Tuning the Anti-Inflammatory Regimen Cofactors:  With the exception of vitamin D3, the rest of the supplements and suggested doses are at or below the listed Recommended Dietary Allowances (RDA).

It's important to understand that the RDA equals the amount of any particular vitamin/nutrient/mineral obtained from dietary sources plus any supplement you take. 

For example, I'm a cheese head so my dietary intake of calcium is likely higher than most so I take only one of the calcium citrate tablets (250 mg calcium) if I'm eating a lot of cheese.   

The same goes for zinc.  11 mg/day is the RDA and too much zinc can send the body's electrolyte balance into a tail-spin...  I love oysters on the half shell...  A half dozen of these succulent morsels and you've got a weeks worth or more of zinc.

Now to the topic of leg cramps and muscle cramps in general when taking the anti-inflammatory regimen...

In most cases, exercise-associated muscle cramps (EAMC) are due to any one, or a combination of, poor hydration, insufficient sodium, magnesium, or an imbalance in electrolytes during and following hard workouts.

The quickest way to check for low sodium and potassium is to drink an 8 oz bottle of G-series Gatorade Thirst Quencher or Low-Cal...  both contain 110 mg sodium and 30 mg potassium. 

If the leg or hand cramps clear up... you were likely low on sodium and/or potassium.

If you're taking 400 mg/day magnesium and still getting leg cramps, check to make sure it's not magnesium oxide...  You could be taking that much magnesium oxide and still not getting enough magnesium into serum solution due to poor bioavailability.

The suggested forms of magnesium include magnesium citrate (mild laxative effect), magnesium malate, magnesium glycinate and magnesium orotate.

Magnesium oxide has a bioavailability of only 4% where the magnesium citrate and magnesium malate have a bioavailability of 90%. 

Magnesium orotate is pricey... The best bang for the buck I could find was 25 cents/day, (200 500 mg tablets for $50.08) comes from Advanced Research at the following link:

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I've updated the main post on the anti-inflammatory regimen with the following:

Magnesium    - 400 mg/day (magnesium citrate, magnesium glycinate,                            magnesium malate or magnesium orotate)

Hope this helps.

Take care,

V/R, Batch
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« Last Edit: May 14th, 2013 at 4:36pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #1406 - May 13th, 2013 at 5:09pm
 
I wanted to share my experience. First let me say I am by no means saying this treatment doesn't work great for some. My experience has been fairly disappointing.

First off - I could not get my Neuro to get the lab test - as it was his recommendation to not take D3. He quite frankly dismissed it as unrelated and wasn't willing to go down that road. I live in a fairly small town - he is the only Neuro here.

So I tried it anyway.

Beginning: My headaches were hitting once a day at about 3am. I began regimen on 4/22.

While taking - My headaches began increasing to 3-4 times an evening. Work was severely impacted. Doctor finally got me on O2 and got a script for Imitrex Injections (yay!)

Increased dosage - I increased my D3 to 25,000 for 3 days. I noticed on these days I jumped up to 5 headaches each day.

Terminated regimen - The first night I stopped taking them, I only had 2 CH's that night. One the next day, so 3 but not the 5.

After regimen - Within 2 days of no longer taking I now am back to just the one in the middle of the night, and sometimes not even that.

Now I realize I am likely getting near the end of my bout. It is also certainly possible that getting to the end of my bout and stopping taking them just happened to coinicide and that is the reason for the relief. However - it certainly did not seem to be helping and in fact seemed to be making them worse. I can definitely say I had way more Kip9-10's during these last several weeks until I stopped than I have ever had in my life.

I hope others have success, but I personally will not do this again.
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Re: 123 Days PF And I Think I know Why
Reply #1407 - May 13th, 2013 at 7:17pm
 
Quote:
I hope others have success, but I personally will not do this again.

Have it your way. It took me 2+ months to get my serum level into the therapeutic sweet spot. I took 20,000 iu per day for the first two weeks with a loading dose of 50,000 once a week. And my headache activity got worse before it got better.

Quote:
I could not get my Neuro to get the lab test - as it was his recommendation to not take D3. He quite frankly dismissed it as unrelated and wasn't willing to go down that road.

Your doctor is an idiot. And you should fire him.
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Re: 123 Days PF And I Think I know Why
Reply #1408 - May 13th, 2013 at 7:40pm
 
Hey Jason,

Sorry to hear youre not having much luck. I was in the same boat as you 5 days ago, feeling like the regimen was actually doing more harm than good.

Dont know if you read my recent post or not but I had been on the regimen for over a month but still getting hit hard and thinking of giving it up. Batch replied to my post with several suggestions.

1. check mag. supplement- should be mag. citrate
2. add vit. A and K2
3. elevate your ph by taking baking soda or alka seltzer      
    in 4oz of water.

I did these things and almost immediately things started getting better!!! ( elevating my ph was the key)
In the 5 days prior to making these adjustments I had 17 ha's.
In 5 days since i have had 6! And nothing above a kip-6, all aborted with energy drinks and/or an ice pack.

My neuro did the same thing on the 25(oh)d test. You could pay for the test yourself or get with a PCP. But the 2 labs I called said they only gave results to Dr.'s. Batch gave the link to ZRT labs.

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To me this is much less painless than having to deal with the almighty Dr., tell them what you want to do, explain why, pay your co-pay twice. They send the results to you.
I've sent back my test and curious about the results, but I'm feeling better thats all that matters.

Hope this helps Jason, Hang in there, make adjustments as necessary.

And many thanks to Batch!!!!
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Re: 123 Days PF And I Think I know Why
Reply #1409 - May 13th, 2013 at 8:37pm
 
Batch wrote on May 13th, 2013 at 3:41pm:

Vitacost magnesium orotate (magnesium bounded to orotic acid) is a good magnesium supplement and at 3.2 cents/day for 400 mg magnesium, it's great buy.

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Not trying to step on any toes here, but the Vitacost product linked here (@3.2 cents/day) is not magnesium orotate, but magnesium oxide.  Be sure to read the ingredients before ordering.

~Regards,
pattik
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Re: 123 Days PF And I Think I know Why
Reply #1410 - May 13th, 2013 at 8:44pm
 
Hey Jason,

Thanks for the update...  I'm sorry the anti-inflammatory regimen hasn't been effective in preventing your cluster headaches. 

It's also unfortunate your neurologist refused to order you a lab test for 25(OH)D. At least he agreed to write you an Rx for oxygen therapy.   

The 25(OH)D lab test would have provided valuable information.  Do you have a PCP that you see?  If so, most PCPs are more than willing to write you an Rx for this lab test so your medical insurance will cover the expense.

If that's too difficult, you can order a home blood spot kit for 25(OH)D from ZRT labs for $65 and there's no requirement for an Rx.  You can reach them on line at the following links.  The first link explains the process along with a "How to" video and the second is used to order the test kit:

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Your posts indicate you've been taking vitamin D3 for approximately three weeks.  Based on other CH'er responses and results from the online survey, this may not be enough time to build your 25(OH)D to a therapeutic level high enough to prevent your CH.

The only way to know for sure is to get the 25(OH)D lab test.

The increase in the frequency or your cluster headaches after starting vitamin D3 is puzzling.  What brand of vitamin D3 were you taking and did you take all the other vitamin D3 cofactors including magnesium citrate, zinc, boron and vitamin A (retinol). 

Without these cofactors your body may not be able to metabolize sufficient 25(OH)D into 1,25(OH)2D3, the active metabolite we think is responsible for the cluster headache preventative effect.

Supplemental calcium and the Omega 3 Fish Oil are also important parts of the anti-inflammatory regimen.

Please understand, my questions are not intended to make sure you gave this regimen a fair chance...  We've ample information on it's efficacy, so what I'm trying to do now is find out why this regimen hasn't worked to prevent your cluster headaches...  and point you in a direction to find relief from them without resorting to some very invasive prescription medications.

We've had several CH'ers who took every supplement in this regimen at the suggested doses for over two months without a favorable response.  Many of them also had their 25(OH)D concentrations tested and reported results as high as 115 ng/mL without any preventative effect.

What we found with many of these CH'ers is they also suffered from a comorbid condition that interfered with vitamin D3 metabolism.

We've also recently discovered some brands of vitamin D3 don't work for some reason.  We're not sure why just yet, but two CH'ers who had been pain free taking one brand of vitamin D3 for several months, experience a relapse with a return of their CH 8 to 9 days after switching to another brand of vitamin D3.

What I've learned over the last two and a half years working with CH'ers taking this regimen is there is usually a reason why this regimen doesn't work...

Take care and thanks again for the update.  Please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1411 - May 14th, 2013 at 4:33pm
 
Hey Pattik,

You're correct... the link was for magnesium oxied...  and you're not stepping on any toes... I clearly grabbed the wrong link.  Good catch.  Thank you.

The Vitacost magnesium orotate at the following link is 29 cents/day for 400 mg.

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A slightly better bang for the buck at 25 cents/day (200 500 mg tablets for $50.08) comes from Advanced Research at the following link:

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It's still pricey...  I should have know 3 cents a day was too low when all the other magnesium ototate brands I looked at were 25 to 30 cents/day.

I'm not all that sure about the cost benefit ratio of magnesium orotate when you can get 180 1000mg tablets of magnesium malate for $11.46 or 3.2 cents/day if you use a pill cutter and split the tablets in half or take one every other day for a 360 day supply.

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I think you're also spot on about chelated magnesium supplements...

That said, a check of clicaltrials.gov revealed only a handful chelated magnesium out of 490 studies involving oral dosing with magnesium, 77 studies on magnesium in the last 12 months.  Nearly all involved the use of magnesium sulphate... (Epsom salt), a few with magnesium citrate...

There was one study done on magnesium orotate: Magnesium orotate - 400 mg tds (three times a day) along with CoQ10 100 mg tds,Lipoic acid - 100 mg tds Omega-3 fatty acids - 300 mg (in 1 g fish oils) tds and Selenium - 200 µg as metabolic therapy following heart surgery.

For reference, there were 107 studies done on vitamin D3 in the same time frame.

There's plenty of good reading on magnesium at the National Institutes of Health's, Office of Dietary Supplements at the following link:

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Thanks again for catching my mistaken link.

V/R, Batch
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« Last Edit: May 14th, 2013 at 5:19pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #1412 - May 14th, 2013 at 5:26pm
 
since we're on the subject thought i'd add my recent purchase from the Vitamin Shoppe.

Magnesium Citrate 300 quantity 200mg each
$17.99 bottle. 
Equals 6 cents per 200mg aka 12 cents per 400mg.

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Re: 123 Days PF And I Think I know Why
Reply #1413 - May 17th, 2013 at 12:57am
 
Hi all,

I got my results from Zrt labs labs on the vit. d test I took on May 10th. It was 54 ng/ml.

This is after 1 month of the regimen, taking 15,000 daily plus 50,000 iu.'s once per week of D3. My d3 level prior to starting the regimen most have been extremely low to say the least.

Batch,

As I stated in a post a few days ago, I started noticing results rather quickly after following your advice on increasing my ph with baking soda or alka seltzer . I have had 8 ha.'s in the week since, compared to 23 the week before. The intensity is way down also, nothing above a kip 6, all aborted with an energy drink or two. Even had 2 pf days, before tonight's little baby k5 wakeup. Killed that sucker with a Monster.

You had estimated my d3 level to be at 80-90 ng/ml and had me drop back to 10,000 iu.'s. Should I stick with that you think?

Thanks a million!!!! life's getting better
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Re: 123 Days PF And I Think I know Why
Reply #1414 - May 17th, 2013 at 2:30pm
 
Hey Erk,

Thanks for the update with your 25(OH)D lab results...  Given you're still experiencing CH symptoms (attacks) and your 25(OH)D is still not in the green zone (60 to 100 ng/mL), I would continue with the more aggressive vitamin D3 dosing schedule and test again after a month.

Take care and please keep us posted

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1415 - May 17th, 2013 at 9:06pm
 
Just a quick update. After testing 59, I doubled the D3 to 30k IU for a few days and the headaches have now totally stopped. I've tapered from the Topamax and am drug-free starting yesterday. I'm almost ready for a glass of wine but will give it some more time before I go for it (still scared).  But for now, very happy that the O2 can start to gather dust. Very appreciative of all the advice here!
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Re: 123 Days PF And I Think I know Why
Reply #1416 - May 17th, 2013 at 9:25pm
 
That's good SouthernCluster! Drugfree also, no imitrex for a week. But still not ready for a "Beer Test"!
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Re: 123 Days PF And I Think I know Why
Reply #1417 - May 18th, 2013 at 11:12am
 
So encouraged and happy to be reading this thread and the success stories. So I really hate being a "downer", but like JasonD, I too have had a strange, unfavorable first attempt at this regimen.

Been episodic for 26 years. Just started another cycle 3 weeks ago after my longest remission ever by far (2.5 years). Most cycles have lasted between 12-16 weeks. There is always something different each cycle but usually after I settle in I'm good for 3,sometimes 4 hits a day. 1 or 2 in evening and 2 after going to bed, which is where I was at before starting this. Have used O2 as only treatment for 6-7 years. Tried a couple of other things (the usual suspects) with Nero during one very unusual year long cycle with no real success.

Anyway, started the D3 regimen (10,000 IU D3, 3000mg Fish Oil, 500mg Calcium Citrate, 400 Magnesioum, Multivitamin) on 5/11. After 3rd day I had no CH in the evening, 2 much lessor hits after bed that were knocked out within about 1/4 the time/O2 than usual. I was STOKED!! Next night none in evening but pretty much the normal to slightly worse 2 after bed. Next night 2 in evening and 3 after bed. All worse than normal. Being the chicken I am, stopped regimen following day but that night had 2 evening, 4 after bed. Last 2 days I've had 4 during day/evening and 4 after bed. All way up there (K 8-9) for 45-60 min even with full O2 therapy that seemed less effective than usual. Never had it this bad. (Can't imagine how those of you with this and worse for so long can do it. You are far stronger and braver than I)

With that said, I really can't imagine that taking what I took for such a short period could cause that much of an adverse reaction.However, if it's capable of stopping Chronic CH in it's tracks in the same amount of time, like it sounds it may have for at least a few, then I guess it is quite capable of a major/rapid effect. But the exact opposite?? Really? Not willing to go there just yet. One thing different for me this cycle is that it definitely took longer to reach normal level. It took about 2 weeks to slowly ramp up, whereas it usually takes about 3 days to go from first hit to normal level. So, it's possible I have still been "ramping" to above normal levels (and being punished for my 2.5 yr remission) and pretty much headed here regardless. I tend to think that's most likely the case but it's still a very unsettling coincidence to go from normal cycle to worst ever in the exact time frame as starting this regimen. But then again, the one night of it being "better" may mean that this works and I need to keep going for it. But one night is not near enough to know....

So, really torn between giving this (no D3) a few more days to see where it goes OR running out and buying a different brand of D3 and hitting it hard and fast - at least the loading of 50,000IU to start and sticking with it no matter what, and also trying the adjustments erk posted about. Going to try to get the 25(OH)D lab test next week regardless and to talk to PCP about other options just in case. From past experience it takes 3-4 weeks to see my or any Neuro ("if it's an emergency, hang up and dial 911" LOL!) so that's out for a while.

I'll post an update or two for what it's worth. Even if this ends up not working for me, it's more than likely a failure on my part to do the right things, make adjustments and really stick with it even if it seems to be getting worse at first. I need to work on that.

Finally, I have never been so excited than to see this thread where something like this (non-prescription, readily available, next to no side effects) has been able to help so many with CH. I pray that it continues to do so and my highest praise and respect to you Batch for bringing this together and working so hard to help so many. I wish you all continued success.
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Re: 123 Days PF And I Think I know Why
Reply #1418 - May 18th, 2013 at 9:09pm
 
Hey JH,

Thanks for the headzup you've started the anti-inflammatory regimen...  Hang in there and don't get discouraged because you haven't had a lasting pain free response or a significant reduction in the frequency, severity and duration of your cluster headaches up to now.

Building 25(OH)D reserves is a lot like a checking account.  You may be making daily deposits (taking 10,000 IU/day vitamin D3 or more)... However, your body can easily be writing checks on the 25(OH)D reserves (consuming the 25(OH)D) as fast as you're making deposits.

Not all CH'ers enjoy a significant response in the first 5 days after starting this regimen...  Some can take up to a month and a few have taken up to two months to experience a lasting response.

Knowing your 25(OH)D serum concentration at the starting point is key to avoiding a lot of angst...  (Will this regimen really work for me or do I need to try something else?). 

Accordingly, try to get the 25(OH)D lab test as soon as possible and when the results come back...  You'll have a much better idea where you stand.

Several CH'ers have safely bumped their daily vitamin D3 dose to 15,000 or 20,000 IU/day and added a 50,000 IU loading dose once a week on top of the daily dose.  An aggressive vitamin D3 dosing schedule like this builds 25(OH)D reserves to a therapeutic level a lot faster.

Finally, you can't really say this regimen isn't effective for you until you've built your 25(OH)D reserves up to an average serum concentration of 85 ng/mL.  That requires a 25(OH)D lab test after 30 days on this regimen and possibly another 25(OH)D lab test 30 days after that.

Even if you get to that serum concentration without a favorable response to this regimen, there are still things to do/try like tuning the vitamin D3 cofactors and changing your diet... 

If that doesn't work you may need to see your PCP or an endocrinologist to start checking for a comorbid condition that may be interfering with the metabolism of 25(OH)D to 1,25(OH)2D3, (calcitriol), the active hormonal metabolite of vitamin D3 we think is responsible for the preventative effect.

Erk and SouthernCluster...  Good on you two...  Looks like you're getting a good handle on the beast with vitamin D3...  Give it another week then don't be afraid to do a wine or beer test...  Just make it a small test and be sure to have your oxygen system charged and ready...

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1419 - May 19th, 2013 at 11:21am
 
Hi Batch,

Thanks for the response and encouragement. Please know that I by no means am trying to imply that it doesn't work for me. I sure it's obvious that I have yet to even come close to giving it the time and effort it deserves. I guess I was (still am a little) just frustrated that it seemed like I was one of the lucky ones that this worked for right off the bat only to have that door slammed in my face pretty darn quick. But that is quite often the nature of the beast isn't it?

I definitely plan on giving this a full chance starting again today and I look forward to taking the survey soon. Thank you again for all your time and effort on this.
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Re: 123 Days PF And I Think I know Why
Reply #1420 - May 20th, 2013 at 7:51am
 
Re: Changing D3 brands.

I read a recent JAMA study that found differences between the declared on label measurement (IU) that showed D3 content variability as much as 9% to 140%, not only from brand to brand, but from capsules made by the same manufacturer in the same bottle.

There is a link here: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

The study is here (if this image works...)


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

(Apologies if I get this image link wrong, I have woeful internet connection and cannot reload the page, sorry)

Maybe there's an efficacy issue right there...

Re: Regimen seemingly making CH initially worse before it gets better.

During the first 2 months of taking the regimen, I experienced 4-5 attacks per day. Severity was up, but I could not attribute this to anything outside of my ordinary Chronic CH. I suspected that with initially very low (19nmol/l) 25(OH)D levels, that I was cashing cheques faster than I could bank D3 supplements... Some 50,000IU loading doses, 5000IU X 3 per day (every 8 hrs) and all the cofactors meant the regimen eventually kicked in. With co-factors as a catalyst, it seemingly unlocked the potential of stored D3 and it is working well.

However, during the course of experiencing the 70 odd drugs I have trialed in CH, I did notice one thing and I'm not sure I can properly articulate this here. I will give it a try...

Any drug that actually relieved my CH, seemed to have a possibility of making it worse, either on the downward side of the half-life, or as it tapered off at end of trial or in wash-outs.

Prednisolone is an example of a steroidal anti-inflammatory that commonly does this. Many people will note the "falling off a cliff" end to their Pred taper. When the Pred dose drops, just before the pituitary gland can kick back in and naturally produce it's daily 7.5mg of Cortisol, CH definitely gets worse in the absence of a suitable preventive drug.
Hence, why Cortisone is a transitional therapy.

This "hand-over" point, or "gap" between cessation of taking steroidal anti-inflammatory Cortisone (and it's cascade effect) and the body's natural Cortisol production has always increased severity in my CH until it could stabilise. Some of my worst ever attacks, (11s) were in the 2-3 days after a Pred taper "flicked the switch" before my body could produce it's own supply.

Aside from immune system consumers and comorbid conditions, could it be that D3 initially has it's own "inter-dose withdrawal"? it's effects are initially dosage time dependent? a half-life issue? a sterol withdrawal effect? or some other as yet unknown effect where as it "wears off" in between initial doses it may actually bring about increased severity or frequency? or even CH rebound?

Many, many drug therapies have done this to me.
It was important with those drugs too, to persist until within desirable and measurable biomarker windows/specifications, before abandoning attempts to establish efficacy in CH.

I know these are complex scientific questions that we are not likely to be able to answer and I defer to Batch's statistical evidence here, but cashing cheques, I really do know what you mean Batch...

Sticking it out with the regimen (with abortives at hand) and getting pathology tests may well be the key, I think.

Just a thought...

Following Batch's advice was the best thing I did, my thoughts aside...

Cheers, Ben.
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« Last Edit: May 20th, 2013 at 8:16am by N/A »  
 
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Re: 123 Days PF And I Think I know Why
Reply #1421 - May 20th, 2013 at 9:59am
 
I find it frustrating not knowing the true potency of the vitamins considering FDA does not regulate.   

Unless one gets repeat tested, it's all speculation how good it truly is.  With that stated, I prefer to pay a bit extra for reputable name brands that have been around for 20+ years.   

-Gregg in Las Vegas
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Re: 123 Days PF And I Think I know Why
Reply #1422 - Jun 10th, 2013 at 2:06pm
 
I get a lot of questions about medications that interfere with the anti-inflammatory regimen of vitamins and minerals....  The following link answers many of these questions and more...

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

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1423 - Jun 12th, 2013 at 10:08pm
 
Batch and All,

Thanks for all the information and education.  Although I am still struggling with CH episodes (up to 4-5 a day now) I am encouraged by the D3 regiment information.  This is much like trouble shooting any problem - it takes experimentation and patience.  I have faith that this will help me, I just have to find my sweet spot.  Still waiting on my initial lab results, hopefully in the next week or so.  Week two of regiment going as planned - though I may have bought the wrong magnesium - looking online now to get the correct stuff.   Thanks again for all the hard work and dedication.  This is a lot of work to put together and a lot of time answering very difficult questions.  Thank you for all you do.
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« Last Edit: Jun 12th, 2013 at 10:08pm by TeeJ2379 »  

Pain is a wonderful teacher and motivator...
 
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Re: 123 Days PF And I Think I know Why
Reply #1424 - Jun 15th, 2013 at 7:02am
 
Started the D3 regimen 3 weeks ago, at the tail end of my spring episode which means getting 3 hits a day, even with Topamax.  I am now almost off the Topamax and have been hit-free for a full week.  I started at a level of 39 (blood work taken before beginning) so I have been taking 50mg D3 once a week, 20mg the rest of the week for the past 3 weeks.  I plan on tapering down to 20mg once a week and 15mg in a week and then down to 10mg.  I am taking the rest of the regimen as recommended as well.  I have had a couple of twinges that did not even need O2!  To me, this has been a major improvement and I plan on sticking with this.  Yes, I will get tested again soon.  This is way better than taking medications with their side effects, for me, especially since I was still getting hits and then using my aborts!  Thank you for this regimen!!!!
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