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123 Days PF And I Think I know Why (Read 444723 times)
MDR
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Re: 123 Days PF And I Think I know Why
Reply #1100 - Dec 13th, 2012 at 8:17pm  
I'm the same as birdman pf but think I'm still in cycle can't drink yet but that's fine with me.
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Re: 123 Days PF And I Think I know Why
Reply #1101 - Dec 14th, 2012 at 12:36pm  
My D3 level is at an 83 ng/ml and am now taking 15,000iu daily as a maintenance dose so we'll see what things look like in a month. This regimen has saved my life and i can't say enough about it but thank you Pete Batch for your tireless work and help to get me where i am today!! Best of luck to all and pf days and nights....Johnny Smiley
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Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
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Re: 123 Days PF And I Think I know Why
Reply #1102 - Dec 17th, 2012 at 2:58pm  
Batch,

I just wanted to lend some words of my girlfriend's experience with your regimen. She is a cluster headache sufferer(episodic) and has been for about 15 years or so.  She told me about these headaches and I'm not going to lie, it scared me a little.  But I immediately started researching it as she told me they would be due to hit in about 4 or 5 months(at the time we started dating) because they hit her about every 18 months.  Anyway, about a month ago she started getting shadows and I happened upon your regimen.  She started it and it has worked great.  She had a couple more shadows here and there but nothing major.

For the first 2.5 or 3 weeks she was taking 15,000 IU's of D3 and she is now just taking a total of 11,200 IU's.  She got the result of her blood work back and her 25(OH)D levels were at  71 ng/mL.

Also, she started out taking 3600mg of Omega 3 but cut down to 2400mg 2 days ago.

She also takes Coral Calcium that includes:
Vit C 15mg
Vit D3   1200iu (included in the above total)
Calcium  1100mg
Mag  168mg

and
Zinc   50mg

Oh, and 10mg of Melatonin a night!

Everything seems to be working great but if you have any suggestions...please let us know!!
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« Last Edit: Dec 17th, 2012 at 3:07pm by Break_the_Cycle »  
 
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1103 - Dec 17th, 2012 at 9:06pm  
Hey BTC,

Thanks for the info...  It sounds like your girlfriend is doing great!  A 25(OH)D serum concentration of 71 ng/mL is clearly in the "green zone" 60-110 ng/mL. 

It also appears she has the bases covered with all the primary supplements...

The only thing I see missing are vitamin A and vitamin K2...  I take a Centrum Silver multivitamin tablet to get these two cofactors...

Hope this helps.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1104 - Dec 17th, 2012 at 10:09pm  
Ouch1975 wrote on Dec 13th, 2012 at 12:20am:
Hi All, I'm kinda new here, posted a couple of times in 2007, I'm writing from Gold Coast, Australia. Lately I have been 'stalking' batch's & others posts in regards to the vitamin regimen.  I've had CH for roughly 13 years, I started a new cycle about 3 weeks ago, this one's a bit more full on than usual as I'm getting hit 3-4 times a day (no night ones - start early morning around 5:30/6am). In the past I've generally only had a big one in the morning, which may or may not linger (shadow) all day.

So, I've started taking the following per day:
Vitamin D3 - 10,000iu
Magnesium - 300mg
Calcium - 600mg
Fish Oil - 3,000mg
'Centrum Advance' Multivitamin
Large Glass of Home Made Lemon Drink with Honey

I have slowly progressed over the last 5 days to be taking it all, today is the only the 2nd day of the full regimen.

I got my blood test results back today and my Vitamin D level was normal at 105 nmol/L.  Actually everything was in the very good normal range except Iron, which was quite low, hopefully the multivitamin will help with that.

I haven't noticed a difference in my hits over the last few days, I take Imigran orally which works well for me.

The doc said today that he may start me on Verapamil.  I said I wanted to give the regimen 2-3 weeks to kick in. If it has not helped in that time, I will look at other options.

I'm excited about this regimen and so thankful to Batch for sharing and all the others who have shared their experiences too. Fingers crossed this works for me.

Will write an update when there's something to report.

Ange


Ange,
Check the units on your vit d test results.  With a value of 101 nmol/l it puts you right on the edge of the active headache area according to Batch's graph.  You'll want to get your vit d value around the 200 nmol/l to be solidly in the pf zone. 

regards,

me
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Re: 123 Days PF And I Think I know Why
Reply #1105 - Dec 20th, 2012 at 8:38am  
Unfortunately, I had to stop the regimen last night. It was working for a few days but then I started having some weird reactions to the Vitamin D and my hits actually started getting worse and coming at random times.

Although it did not end up working for me, it does bring me relief to know that other people have had success with this and are currently pain free. It gives me hope that I will find something soon that will bring me there as well.

Thank you Batch and everyone else for all of your tireless work when it comes to cluster headaches. This website has been my saving grace and I cannot thank all of you enough.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1106 - Dec 20th, 2012 at 2:07pm  
Frankie,

Sorry you're having such a rough time...  and had to stop this regimen...

The anti-inflammatory regimen is at best effective for 76% of the CH'ers who try it.

That said, reactions to vitamin D3 are rare as the body makes it for free if exposed to the UVB in direct sunlight...  There have been a handful of reports that there was an initial increase in the frequency of their CH during the first few weeks after starting this regimen...  Nearly all reported this condition lasted for a few days then the frequency dropped.

I've spent most of the last year trying to determine why the 24% of CH'ers who try this regimen fail to achieve a meaningful preventative effect.  Perhaps you can help if you feel up to it.

Have you seen your PCP or neurologist for a lab test of your 25(OH)D serum concentration?  I've checked your posts and didn't see any indication you've had this lab test recently. 

Seeing your PCP for this test is an important first step as you may have a comorbid condition that's affecting your capacity to metabolize vitamin D3.

The next steps involve isolating the supplements in this regimen to determine if one or more of them are responsible for the increase in frequency of your cluster headaches?

You've already taken the first step in this process of elimination by stopping the entire regimen. 

The half-life of these supplements including vitamin D3 is 24 hours... so wait a few days for everything to clear before starting the next steps: 

Take each of the supplements by itself for a couple days and note any change in your CH symptoms... Start with the vitamin D3 as you think it was responsible for the increase in the frequency of your CH. 

If you get an unfavorable reaction to the vitamin D3 you've solved the first problem...  Knowing why youis up to you and your PCP or an endocrinologist.

If there hasn't been a reaction, try the vitamin D3 and magnesium in combination for a few days. 10,000 IU/day vitamin D3 and 400 mg/day magnesium should be sufficient.

If there's no reaction, add 10mg/day zinc...  I think you've got my drift...

If all this is too much trouble and the beast is hammering away...  I understand...  The first order of business is stopping the CH pain...

On that note... I haven't seen anything in your posts about using oxygen therapy.  Even a flow rate of 15 liters/minute can make a big difference if started as soon as you feel a CH approaching...

Take care and thanks again for trying the anti-inflammatory regimen.

V/R, Batch
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« Last Edit: Dec 20th, 2012 at 2:10pm by Batch »  
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Re: 123 Days PF And I Think I know Why
Reply #1107 - Dec 24th, 2012 at 4:46pm  
Merry Christmas everyone!

Finally received the results from my Vit d 25 Hydroxy test and my value was 48.8 ng/ml. This is after a month of taking 50,000IU one time per week and 20,000IU all other days. Well I guess my question now is how much do I take to get to the prefered zone of 60 ng/ml? I have finially came out of my normal cycle and would like to avoid the next one.

This cycle was very strange after starting the D3. My clusters seemed to turn into migraines or very long low kip clusters.

Hope everyone has a PF Holiday!
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1108 - Dec 24th, 2012 at 9:08pm  
Hey Battig,

Thanks for the update and lab results...  Even though your 25(OH)D serum concentration is less than 60 ng/mL, it appears from the description of your CH symptoms, you're benefiting from the present vitamin D3 dosing schedule.

Are you taking all the cofactors?  If so, at what dose?  The big three are magnesium at 400 mg/day, zinc at 15 to 20 mg/day, (or eat a half dozen oysters on the half shell at a good Raw Bar for a week's supply of zinc) and vitamin A.  I take a Centrum Silver tablet a day to get my vitamin A (retinol) and vitamin K.

Regarding the vitamin D3 dose... the way I see it, you've got a couple options...  Don't change the present vitamin D3 schedule and your 25(OH)D should reach 80-90 ng/mL in another 3 to 4 weeks.

If you want to get up to a 25(OH)D serum concentration of 85 ng/mL faster, you can take 40,000 IU/day and skip the loading dose.  This should be quite safe. 

In either case, keep your doctor in the loop and have him schedule another lab test for 25(OH)D, calcium and PTH in another month.

Take care, Merry Christmas and Happy New Year.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1109 - Dec 26th, 2012 at 9:22am  
Hi Batch,

Thank you for your response and concern.

I had an appointment with my neurologist last Thursday and I wanted to hug him by the end of it. He started with a low dose of Verapamil, which my body is already starting to respond to and gave me a prescription for Sumavel Needless shots. Those have been absolutely amazing for stopping the pain, although I've been saving those for emergencies because of the rebound headache I get 12 hours after taking the shot.

Although I did want to try to stick with the D3 regimen and isolate the individual components, I just could not take the pain any longer and had to go on something prescribed.

I do not use oxygen for aborting my headaches. Right now, since they are not following any logical timeline, I am almost never home when I get hit so trying to keep an oxygen tank nearby would be almost impossible for me.

Hopefully, the Verapamil will continue to help and if not, I will call my doctor to try to increase the dose after 2 weeks.

I hope you had a great holiday and I wish you a very Happy and Healthy New Year!

-Frankie
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Re: 123 Days PF And I Think I know Why
Reply #1110 - Dec 26th, 2012 at 2:32pm  
Batch,

   Thanks for the info. I think I will try to continue with the 50,000/20,000 IU until my next doctors appointment to get another D3 count.
As far as co-factors I am taking all except the magnesium which I ran out of but I will get more.
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Re: 123 Days PF And I Think I know Why
Reply #1111 - Dec 27th, 2012 at 11:39am  
Battig wrote on Dec 24th, 2012 at 4:46pm:
This cycle was very strange after starting the D3. My clusters seemed to turn into migraines or very long low kip clusters.


I had a very similar experience to yours while trying the D3 regimen. If my results are similar next time, I may try experimenting with using Imitrex tablets for the first time...who knows.
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Re: 123 Days PF And I Think I know Why
Reply #1112 - Dec 27th, 2012 at 2:09pm  
Pattik,

My D3 count was still low at 48.8ng after taking the large amounts of D3 plus co-factors so I believe that if I can get it up to the prefered zone above 60ng that should help me eliminate them.

I did take zomig almost every day during this strange cycle and I have to say that the zomig worked much better eliminating the headaches then before I was taking the D3. Prior to the D3 the zomig was hit or miss sometimes having No effect on the headaches at all.

Good luck and I hope the Imitrex works better for you. Smiley
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Re: 123 Days PF And I Think I know Why
Reply #1113 - Dec 27th, 2012 at 8:26pm  
Well what a bummer, the beast is back  Angry . I thought that I had been clever this year and have been using a sunbed for the last few weeks plus the omega, calcium etc etc to thwart the blighter but he rudely woke me this morning !!  Nasty little sh*# wont get me down though.
Wow batch, this has become a full blown novel since i was last here, I had better get reading  x x
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Re: 123 Days PF And I Think I know Why
Reply #1114 - Dec 28th, 2012 at 2:09pm  
Hey Oxy...

There's no problem taking supplemental vitami D3 while generating cutaneous vitamin D3 from direct sunlight or tanning bed...  The body has built-in protection mechanisms to limit cutaneous vitamin D3 production if 25(OH)D levels start to get high.

Frankie, 

Thanks for the update.  It's good to hear you've got your CH under control.

Battig,

That your 25(OH)D is building slowly is possibly a sign that it's being metabolized to the active hormonal metabolite, calcitriol and being consumed as fast as it's generated.

There are several studies now showing serum 25(OH)D levels can drop as much as 30% when the body suffers an injury, an allergic reaction, viral/bacterial infection or any inflammatory disorder.

Take care and have a Happy New Year!

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1115 - Dec 28th, 2012 at 2:16pm  
An interesting related article:

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Re: 123 Days PF And I Think I know Why
Reply #1116 - Dec 29th, 2012 at 8:22am  
After a terrible god awful night on thurs in which I been on verapamil and took 2 imitrex nasal to NO help.  I joined the site and got some great advice from Brew.  Anyhow yesterday I took 10,800 vita D3 the cal, mag, zinc, and a few omega 3 pills with my usual 10 mg melatonin.  I had an amazing day and sleep.  I am speechless.  If this works.......
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Re: 123 Days PF And I Think I know Why
Reply #1117 - Dec 29th, 2012 at 10:30am  
If that's the case, wow. For some - like me - it took almost 2 months before I saw any significant improvement. Others, well, you might be one of the others. We can hope. Do keep us posted.
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Re: 123 Days PF And I Think I know Why
Reply #1118 - Dec 29th, 2012 at 12:09pm  
Yeah!!
It only took me 3 days and have been pain free for 70 days now but that's wonderful!! Everyone's different and just have to be a bit patient with this regimen if it doesn't work immediately. Unfortunately it doesn't work for everyone either but with 75% effectiveness you chances are good.
Love to hear the great results!! Best of luck to all that try this....Johnny Wink
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Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
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Re: 123 Days PF And I Think I know Why
Reply #1119 - Dec 29th, 2012 at 2:21pm  
I have sat here this morning and read this whole forum.  The man in my life has been having these since Sept, 2001 after a horrific car accident.  I haven't told him about this yet.  We are heading out to go get these supplements and I will instruct him on taking them, as I have read here.  I am not going to tell him what I have read and will see if and when he notices a difference.  I am not sure of all the lingo here.  He has done better this year, he always has the "shadow".  October thru March is when he really cycles,  last year he was in a "pain treatment center" from tuesday before Thanksgiving to the beginning of March with 4mg Dilaudid IV push every three hours. (he would be out for a few days at a time, but end up right backin) There was no "detox" before they sent him home, the next three weeks were hell because he decided to discontinue everything he was taking, all at one time.  He has been using Fentenyl patches, amytriptoline at night and xanax or valium to try to keep from getting hit hard but nothing is keeping them away.  He also takes Verapamil, I do not know the dosage.  We are heading to Walmart to get supplements TODAY!!  Will check back in, in a few days. 

Laura
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Re: 123 Days PF And I Think I know Why
Reply #1120 - Dec 29th, 2012 at 3:13pm  
On and off all those narcs, it's not surprising it seems like nothing's working. Some or most of what he's experiencing is likely "rebound" attacks. As almost everyone here has found, narcotics do virtually nothing for CH sufferers long-term.
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Re: 123 Days PF And I Think I know Why
Reply #1121 - Dec 29th, 2012 at 5:03pm  
Hi Laura and welcome

Pain treatment centres tend to just focus on treating the pain of a CH without working to prevent / abort the CHs. Even the strongest narcotics hardly touch the pain of a CH and have all the side effects of dependency (lots of people here have experienced this).

The only standard CH medication that he has is verapamil. Typically this needs to be around 360-480mg a day to be effective for CH however for some people they need up to 1000mg (a LOT higher than people who use it for blood pressure control).

Has he got any means to abort a CH? Something like imitrex injections or oxygen (high flow rate & non-rebreather mask)? Using oxygen I kill my CHs in about 5 minutes with no side effects.
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Re: 123 Days PF And I Think I know Why
Reply #1122 - Dec 30th, 2012 at 4:14am  
Back on the D3 regime and after only 2 days I slept through - well I say slept through but i must have woken 4 times waiting for beasty boy to kick in. fingers crossed for tonight  x
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Re: 123 Days PF And I Think I know Why
Reply #1123 - Dec 30th, 2012 at 5:58am  
Another amazing pain free day.  Hard to tell if my cycle is just over as its been 4 wks my avg or this regiment has done it.  Either way I am continuing it, can't risk them returning
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Re: 123 Days PF And I Think I know Why
Reply #1124 - Dec 30th, 2012 at 9:00am  
My last cycle was almost 3 years ago. I have remained on Batch's regimen, updating it each time he has tweaked it. I have no intention of going off of it, ever!

Joe
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