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123 Days PF And I Think I know Why (Read 443714 times)
Mike NZ
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Re: 123 Days PF And I Think I know Why
Reply #1825 - May 5th, 2014 at 8:59pm
 
Thank you Batch, that is simply a wonderful update to read. Whilst there are lots of people here who have been experiencing life without the pain of CH we all know there are lots of people around the world, both patients and doctors, who do not yet know of the amazing changes vitamin D3 can make. But with steps like this, they get the chance to live life free from CH pain.

Looking forward to seeing more research papers published from multiple neurologists so this really takes the CH treatment world by storm.

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Marc Everette
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Re: 123 Days PF And I Think I know Why
Reply #1826 - May 5th, 2014 at 11:52pm
 
Hello all,
I was diagnosed with CH 6 years ago. I was diagnosed with Sleep Apnea late 2012 and started using a CPAP machine. No headaches in 2013 so I thought the sleep apnea was causing the CHs. My headaches returned last week and I’m back to looking for other options. My wife did tell me recently that I’ve started to snore while I have the CPAP mask on so I guess I can’t totally rule it out. Either way I’m going to give the D3 regimen a try. I have an appointment with my neurologist tomorrow and I’m going to mention it to him to see what he thinks. Just curious to hear what his thoughts are as I’m going to move forward with the D3 regimen regardless.

I must say I’m a little nervous about the 50000 IU loading dose. I may try 20000 IUs in the morning and 10000 at night for the first 5 days. I’ll be sure to report back with the results.

Batch thanks for all the hard work you’ve put into this. You are already a hero in my book.

Marc
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blacklab
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Re: 123 Days PF And I Think I know Why
Reply #1827 - May 6th, 2014 at 3:05am
 
marc, welcome,  please view the video posted on here by batch by dr gominak who has linked sleep disorders with vit d3 deficiency, she used to prescribe the cpap, she has been using the vit d3 regime for 6 years with huge success and reports of patience throwing there cpap away.
thanks mike and joe, that's fantastic news.
im sticking at it,  shadows are a whole lot better than what I was getting before, in fact life changing !
just need that magic balance of something to eliminate the shadows.    im playing with the other vitamin levels while my vit d level sits constantly around 200nmol.
cheers
colin
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sue_g
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Re: 123 Days PF And I Think I know Why
Reply #1828 - May 6th, 2014 at 5:07am
 
Ditto Joe!
Thank you Pete for your endless support for all of us  Smiley Smiley

Guiseppi wrote on May 5th, 2014 at 8:33pm:
Batch...there's a sh%$ load of people pain free because of your tireless efforts at figuring out what made this silly sounding "anti inflammatory" regimen work. I'm just hitting 4 years using your "silly assed" idea of Vitamin D-3 stopping CH.  Smiley Smiley Smiley

Seriously sir, it's one thing to find something that makes you pain free and then getting on with life. You've chosen to spend thousands of hours of your own time, trying to get this out to the rest of the world. For that I salute you sir, you're a fine man, it's a pleasure to know you and call you my friend.  Smiley

Joe

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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1829 - May 6th, 2014 at 3:29pm
 
Hey Marc,

Welcome aboard CH.com... I wouldn't worry too much about taking the 50,000 IU vitamin D3 loading dose once a week for two weeks on top of a daily intake of 20,000 IU vitamin D3.  The 4-week vitamin D3 loading schedule adds up to a total of 600,000 IU of vitamin D3, or a little over an average of 21,000 IU/day.

The attached study reports the results of a single oral dose of 600,000 IU of vitamin D3 with no adverse effects...  I've two other studies where 500,000 IU vitamin D3 was given in a single oral dose...  Again... no problems.

Take care and please keep us posted on your progress with the anti-inflammatory regimen.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1830 - May 6th, 2014 at 3:38pm
 
Thanks Batch.  The hardest part of getting my husband to try this again is that he HATES to take pills of any kind for a long period of time.  I try to explain to him the difference between prescription drugs and supplements, but it doesn't seem to change his perception of pills in general.  We will be attending the convention in Nashville and I am hopeful that when we finally meet people who have shared our horrible experiences with the beast and their success with the Vit D regimen, it will be a turning point for the better.  I am looking forward to speaking with supporters who can relate to me and also speak to people who have felt mine and my husband's pain, as it has been extremely painful for me to watch and feel helpless.
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Mike NZ
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Re: 123 Days PF And I Think I know Why
Reply #1831 - May 6th, 2014 at 9:55pm
 
ihatech wrote on May 6th, 2014 at 3:38pm:
The hardest part of getting my husband to try this again is that he HATES to take pills of any kind for a long period of time. 


I'm not sure that anyone likes to have to take pills of any kind for long periods of time. But if in doing so I remain CH pain free then I know that I'll be happy to keep taking the pills as the issues around that in no way compare to active CH.
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blacklab
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Re: 123 Days PF And I Think I know Why
Reply #1832 - May 7th, 2014 at 6:22am
 
wow,  convention in Nashville !!!!
  sure would have been great to have something like that down under,   I certainly wouldn't miss it.

and ditto, as mentioned about batches unselfish work he does that benefits so, so many people.

colin
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1833 - May 7th, 2014 at 1:23pm
 
Ihatech,

You can always pick up a bottle of Bio-Tech 50,000 IU vitamin D3 gel caps and stick one in your husband's mush or on a chicken fried steak under the gravy once a week...   Roll Eyes

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1834 - May 7th, 2014 at 1:26pm
 
Hi Batch:

I forgot to mention that my husband is chronic since 2010.  Does the Vit D3 regimen work equally well for both chronic and episodic or does there seem to be a difference in response time, etc.?

Thanks again.
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Re: 123 Days PF And I Think I know Why
Reply #1835 - May 7th, 2014 at 3:24pm
 
Batch,
    Do you really have CH ? How many other ailments do you have that you treat with the D3 ? Did you build that website yourself about all of the illnesses and diseases that D3 can treat ? And lastly, do you give seminars to doctors and neurologists about D3 for CH and for other diseases ??
    Just curious. Please fill us all in on what stake you have in the D3 business please.

    Thanks

    I4B
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1836 - May 8th, 2014 at 2:58am
 
I4B,

Nearly 20 years with CH and chronic since 2004...  Other than that, all I fight is old age... and vitamin D3 does a wonderful job at slowing that down...  I feel better now pushing 70 than I ever did at 50...  Go figure...

Presenting a poster with results from the survey of CH'ers taking the anti-inflammatory regimen to neurologists at the AAN annual meeting in Philadelphia is as close as I'm going to get to a seminar...  and I don't recall seeing any member of the vitamin industry there offering to pick up the tab for all my expenses...

The VitaminDWiki site is run by my dear friend Henry Lahore...  He lives 30 minutes North of us in Chimacum, WA.  Henry is all things vitamin D3 with a bunch of web crawlers sucking up anything and everything from the Internet as it applies to vitamin D3 7 X 24 X 365...

Take care,

V/R, Batch
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« Last Edit: May 8th, 2014 at 11:25am by 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
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sue_g
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Re: 123 Days PF And I Think I know Why
Reply #1837 - May 8th, 2014 at 6:58am
 
Good Day everyone and Batch Smiley
Following Batches regimen, I'm continuing to be CH free (tx Batch), since Sept 2013.
March 18/14 - 25(OH)D3 test result:   73.6ng/ml
I'll re-test in June.

For approximately a month now, I'm wondering if anyone else has experienced heartburn... Its not anything like our CH pain, just annoying.  Any suggestions?
Thanks in advance Smiley
Sue
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1838 - May 8th, 2014 at 12:28pm
 
Hey Sue,

Thanks for the update.  I can only recall one or two other CH'ers commenting on heartburn after starting this regimen...

Taking all the supplements with food, preferably with the largest meal of the day usually prevents most GI problems...

Eating the evening meal a little earlier and staying up for at least two hours after eating is generally the best way to prevent heartburn.

Hope this helps.

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 #1839 - May 8th, 2014 at 9:48pm
 
Forgot to say: Thank you for serving Batch Smiley

And no disrespect intended on previous post.

I4B
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Re: 123 Days PF And I Think I know Why
Reply #1840 - May 10th, 2014 at 10:15am
 
Hi Pete,
You already know my thoughts of gratefulness that I share with you every time we meet.  The Philly trip post/photo was very impressive to read.  Congratulations!   Wink

Gregg in Las Vegas
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Re: 123 Days PF And I Think I know Why
Reply #1841 - May 12th, 2014 at 1:53pm
 
Hey Batch, well done on presenting the survey results at that meeting.
It's great to put a face on the name too, you look like a fun guy. I've no plans on visiting the U.S, but if I do i'll make sure to meet with you. In the meantime, if you ever intend to visit Ireland, you'll be welcome with open arms.
All the best and thank you again for all the help, I am 3 months into my second year PF thanks to your regimen, apart for a little when the pollen appears.
Smiley
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Re: 123 Days PF And I Think I know Why
Reply #1842 - May 12th, 2014 at 2:39pm
 
Hi Batch:
Thanks for your time and advice!  I am seeking another (more open-minded) Neuro for my husband (in Houston, Texas) and due to the enormity of this thread, cannot seem to find the graphs/reports,etc. that would be good to show our new neuro regarding the D3 regimen.  Do you (or anyone else) have any suggestions on what else to look for in a cluster H/A neuro?  I am going to ask questions regarding their treatments prior to making an appointment.  The neuro we have now is well known (Dr. Ninan Matthew), but when I inquire about alternative treatments and ask questions, he just gets frustrated and is very hard to converse with. 

Thanks for your help.  And thanks to all who have responded to my posts.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1843 - May 12th, 2014 at 3:07pm
 
Ihatech,

If you're looking for a neurologist willing to use alternative/naturopathic methods of controlling cluster headache, give Dr. Stasha Gominak, MD a call...  Her practice is in Tyler, TX roughly a 3 hour drive North of you...  Her website link follows:

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She's been treating patients with sleep, chronic pain and headache disorders for over six years with a vitamin D3 regimen very similar to the anti-inflammatory regimen many of us take to prevent CH...

I've been sharing the results from the online survey of CH'ers taking the anti-inflammatory regimen and she's been very supportive.

She may know of a fellow neurologist in the Houston area who thinks along the same lines as she does.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1844 - May 13th, 2014 at 1:18pm
 
Hi Batch,
I'm looking for a bit of advice.
My episodes have become every other year. When they do arrive they are different. The big hits are worse but the build up is less intense and it keeps feeling like it is going away.
Currently I rarely get a day time hit but when I do it absolutely shoots me to bits. I have had Ch all my life but some of these hits are way and above the worst I have known.
At night I am up every 45 minutes for 30 minutes of O2.
I went on to the D3 regimen about 5 days ago and it hasn't altered anything much except the last two hours of the night I don't need O2. Needless to say, I'm tired and can't think straight.

My regimen is 18,000 iu by mouth spray, 1200 mg of Calcium Citrate, some Magnesium, zinc and Copper (all combined in the Calcium tablet) I take 3 or 4000 mg of Omega 3, 6 and 9 but this is not fish oil, it is flax seed oil (which I am told is better). (I am a vegetarian)
The regimen doesn't seem to be working and I am on the balance of using prednisolone and verapamil (I need 800 and above for it to work usually). A couple of years ago I got a pulmonary embolism at the beginning of my CH episode. The PE came from nowhere and if it wasn't for my GP (Dr) realising what it was, I wouldn't be writing this. So you see, I worry about all these meds I have taken over the years and I have to admit in some of the darkest times I took way too much sumatriptan.
I was so hoping the D3 would work.
Is there anything else I can do or change to try and get it to work for me?
Thanks,

Ellick.
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maz
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Re: 123 Days PF And I Think I know Why
Reply #1845 - May 13th, 2014 at 4:24pm
 
I'm sure Batch will come along and explain everything for you. You could always send him a PM. In the mean time, you can take much higher doses of D3. Many people take 20,000 a day with an extra loading dose of 50,000 once a week. It has to build up to a certain level in your system to be effective and that can take a few weeks for some. It's important to get your blood tests done though.

Please contact Batch with your specific  symptoms/meds. He'll work it out for you.
Maz.
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Re: 123 Days PF And I Think I know Why
Reply #1846 - May 14th, 2014 at 12:35pm
 
Thank you Maz,

What kind of blood test am I asking for?

Ellick.
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maz
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Re: 123 Days PF And I Think I know Why
Reply #1847 - May 14th, 2014 at 3:37pm
 
Hi Ellick
It's called, 25(OH)D.  I'd like to bet that your doc will tell you your results are normal, but you will in fact be MILES below the required level to be pain free.. Vitamin D can be toxic if you take too much, but honestly, you need to be just below toxicity level, and you can take it by the truck load before you get there.

I took 20,000 a day for the first few weeks, then I dropped to a maintenance dose of 10,000. If people around me have colds or flu , or if I am ill in any other way I shoot the dose up again for a few weeks, as infections will cause your immune system to gobble up all the D3 and the clusters will sneak through. In truth I am not completely pain free, but the attacks are much less often and very much less intense. When they come, I take 50,000 for a few days, then 20,000, then I go back to 10,000 when the episodes die down. All that and I'm nowhere near toxicity. But the blood tests are important because you need to keep a check on your calcium levels too when taking D3.

You've posted here on the  "medications, treatments and remedies" board on a thread started by Batch called "123 days pain free". It's a very long read, but worth the effort. Some where, if you flick through quickly you will find a chart showing the levels of 25(OH)D. It's pink and green so quite easy to spot.

Again I urge you to send a PM to Batch and ask for his help.  He's a really great guy and has helped so many of us, he deserves a knighthood. He knows all the science stuff that I don't understand, and will work it out specifically for you. He's every ones hero.

Vitamin D3 is good for you even without the CH, because it boosts your immune system. I've been on it for 11 months now. During the winter everyone around me (and I do mean everyone) had coughs, colds, chest infections, flu, you name it. But not me. Grin
Maz.
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« Last Edit: May 14th, 2014 at 3:39pm by maz »  
 
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1848 - May 14th, 2014 at 7:20pm
 
Hey Ellick,

You should have my email by now...

Please let me know if you have any further questions.

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 #1849 - May 15th, 2014 at 1:55am
 
If you are having trouble with the D3 working there is a thread here that Batch has been posting in called 'latest D3 news' you should read through. There appears to be some strong evidence for incorporating b12 or b50 into the regimen. Ive been without any attacks for sveral months with D3  but I had one attack sneak in on me a couple of weeks ago with several brutal shadows.  went straight to wal-mart and started adding the B12,havent had nearly as much going on upstairs lately. Also I may have missed it but I dont see Mg in your regimen,the lastest D3 regimen that Ive seen has nearly equal proportions of Mg and Ca,correct me if Im wrong?
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