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123 Days PF And I Think I know Why (Read 485660 times)
PlayDoh
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Re: 123 Days PF And I Think I know Why
Reply #475 - Dec 11th, 2011 at 4:30am
 
So..... I guess I need to go Vitamin shopping perhaps. Aparently I've only been taking like a tenth of the D3 I should.
Heres what I've taken for 4 days

Omega 3 fish oil   4000  EPA 1200  DHA 800
Vitamin D3          1,200 IU / 30 mcg
Calcium              1,200 mg
Magnesium         100 mg
Vitamin K           0
zinc                  15 mg
Boron                0

I only have Calcium Citrate with Vitamin D3 and my "one-a-day" as a source of D3. The Calcium's have 200 UI each of D3 and I've taken 4 a day. And the one-a-day has 400 UI / 10 mcg. 30 mcg total.

I just seen Batch's picture of his Vitamins and he has a 5000 IU D3 bottle.
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I wonder if its odd I've had success? I do have a healthy diet, not awesome I guess, but mostly good home-cookin.
Back to the Vitamin Isle      Huh
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Re: 123 Days PF And I Think I know Why
Reply #476 - Dec 11th, 2011 at 8:48am
 
I have been taking 10,000 iu vit d along with calcium/mag and fishoil. I was on verap of awhile and having contstant daily shadows. Something was telling me that the verapamil was doing more harm than good in reference to the constant shadows. I was talkin with my good friend batch and decided with my doc's approval to come off verap. Batch told me to up my d to 20,000 so i did. Guess what my constant shadows are MUCH better since. Coincidence? I dunno just yet but I believe it has an inpact for sure. I am also on 450mg lithium a day so I will keep u all posted!!
Anthony
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Re: 123 Days PF And I Think I know Why
Reply #477 - Dec 11th, 2011 at 3:23pm
 
The above...WOW...just WOW...that there is a plan to go to battle with...textbook detail...concise and profound. Pete knows and provides....daily. Boy howdy...GOOD stuff!

Would add only a couple of other thoughts. In my own experience with the "evil empire"....at least 6 health insurance providers...only one covered O2 without question. All the others.... it was a fight.

1) They are gonna be thinking "migraine"..no matter what you say or what the diagnosis is. You must dissuade them of this fantasy....repeatedly...showing diagnosis...and...

2) With a Doc that's got your back. Took 20 yrs for me to find such...I'm a lucky man, but also a persistant, determined...and sometimes pissed off patient. If you don't advocate for yourself...aint no-one else gonna. When I showed some later denials (O2 and Zomig) to my treating neuro...she got as pissed as me and wrote a scathing letter indicating what treatment was needed, medically appropriate, and if they wished to dispute her...bring it on...you will lose! Better than any med...that letter...find yourself a headache specialist...with a head and a heart..it aint easy...neither is ch. BTW...they didn't lose...didn't want to fight anymore...they gave up... only a couple of days later...I have the E-tanks to prove it.

3) If you work for a company that provides health insurance...then it is likely to have been purchased through a "broker". Despite what seems logical...hey, I'm a customer of your insurance co...it AINT true. They really don't care a damn about you. The BROKER is their customer. Took me a while to realize that...and then I used that to my advantage. The broker wants to please their customer...YOUR company....and therefore YOU.  I hammered that broker, with the help of my HR dept, through resistance that was puzzling. Took a while and some angst...but I got what I needed..for ch...and later another condition.

Best,

Jon

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oxyrunner
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Re: 123 Days PF And I Think I know Why
Reply #478 - Dec 12th, 2011 at 9:57am
 
Hi, I haven't posted on here for a long time, everything was going along quite nicely with Batch's regime. 11 months into cycle  Embarrassed (usually last 6 weeks) and always on the left side. This week the headache has shifted to the right side, the shadow, numb nose, the annoying occassional reminder behind my eye etc !! I have had more D3 bood tests and they have come back as 279 nmol/L. This is quite high I think and my Dr wants to see me to discus things. The only problem is - I am taking 14,000iu D3 daily split into 2 doses plus the omega oils, zinc magnesium and calcium and if I reduce it at all the CH rears its ugly head within 2 days  Angry . I'm concerned that I will have to stop taking the vitamins. I would not have been able to function at work this year without taking them as I was having 5 CH a day all lasting between 2 - 3 hours. Just wondered what the highest D3 results have been on here and whether anyone has stopped taking it?
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Re: 123 Days PF And I Think I know Why
Reply #479 - Dec 12th, 2011 at 10:52am
 
Hi oxyrunner

There is no reason to stop taking the vitamins, but you have to lower your vitamin-D3 intake to 5000 IU per day. It's enough to maintain a optimal vitamin-D level.  Wink

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Re: 123 Days PF And I Think I know Why
Reply #480 - Dec 12th, 2011 at 11:19am
 
Hi Oxyrunner
After 3 months on the regimen, 10.000 IU + sun, as this was summer months, my D3-level was 295.  I reduced daily intake to 7.500 (10- and 5.000 every other day).  1.5 months later my D3 level is a 271 nmol/L
I plan to keep using 7.500 and reduce to 5.000 when the summer arrives in 2012.
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Re: 123 Days PF And I Think I know Why
Reply #481 - Dec 12th, 2011 at 4:00pm
 
Update;

I have been on a number of different treatments all at once so I know that determining which is working is all but impossible. 

But here is where I am at. 

I started the 123 method along with a 120 mg pred taper, lithium 900 mg p/d, 10 mg Melatonin at night, and two occipital nerve blocks, the latest on the 8th. (I am not sure what the two chemicals he injected were but I know that they were not lidocain or botox)  However my head was very anestetically numb on the entire back/upper right side.   

The lithium levels were tested and found to be well below theraputic ranges however my Neuro explains that the lithium is more to keep me from going insane on the pred than as a CH prevent.  He is right, I handeled the pred with not so much as a crazy thought.  It actaully has not been a bad experience so far. 

I had a total stoppage of all head aches about 3 or 4 days into the treatments.

I am down to 30 mg Pred per day doing a doctor prescribed "self taper" today being the second day, and I  have added in the swiss cheese for vitamin K2.  I also upped the D3 frm 10000 IU per day to 15000 IU per day this morning.  As I live in Minnesota and we are not getting alot of sun these days. 

After going nearly 6 days without a HA, I was then hit Saturday morning with a very strange KIP 7-8 that didnt respond to the o2 and was equally as stubborn to the 2-3 mg Imitrex self inject.  Taking about 30 minutes to completely clear up.  I was then hit again today Monday with a KIP 5-8 that also took about 20 minutes for the 4mg auto inject to clear things up.  The times for the Trex are about 10 to 15 minutes longer than usual.

I again am following the 123 regimin to a T using all of the required minerals and vitamins. 

Clearly I am not out of cycle or the woods yet.  But still not getting hit as hard as I was prior to trying anything. 

Please respond if anyone has some input, comments, or advice.   

Thanks,

E

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Re: 123 Days PF And I Think I know Why
Reply #482 - Dec 12th, 2011 at 4:24pm
 
Hey Oxyrunner,

Good question...  If I were you...  I'd stay the course...  The risk:reward ratio is working in your favor if you have a better quality of life since starting this regimen...  And if the QoL isn't high enough...  you may need a higher dose of vitamin D3...

My wife takes 15,000 IU/day vitamin D3 and has done so for over a year.  She feels great, looks great and has more energy than I've seen in her in many years.  She's also kicked the heck out of 75 and turns 76 next week.  Her doctor told her to "keep doing whatever you're doing...  your labs look like their coming from a much younger woman."  That made my wife real happy...

When you see your doctor tell him you want to remain at the lowest dose of vitamin D3 that provides a therapeutic response to your CH (like mostly pain free) as long as your 25(OH)D level remains below the lower threshold for vitamin D3 intoxication at 500 nmol/L, (200 ng/mL).  If that dose is 14,000 IU/day...  Then that's the dose I'd take.

If your doctor is still having angst after hearing this...  Tell him you'll be happy to come in for another 25(OH)D lab in six months or if you appear to be having a reaction...

If you don't want to play Stump the Dummy with your doctor, go to the following link at the Vitamin D Council and get smart:

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I love their opening statement... and another further down the above page: "Can too much vitamin D be harmful? Yes, it certainly can - though anything can be toxic in excess, even water. As one of the safest substances known to man, vitamin D toxicity is very rare. In fact, people are at far greater risk of vitamin D deficiency than they are of vitamin D toxicity."

"Toxic doses

What exactly constitutes a toxic dose of vitamin D has yet to be determined, though it is possible this amount may vary with the individual.

Published cases of toxicity, for which serum levels and dose are known, all involve intake of ≥ 40000 IU (1000 mcg) per day.   Two different cases involved intake of over 2,000,000 IU per day - both men survived."

The whole issue over how much vitamin D3 to take and how high we should let our 25(OH)D go has unfortunately fallen into the hands of four big government, nanny-state bureaucrats on the Food and Nutrition Board at the Institute of Medicine and not in the hands of the thousands of physicians who treat patients with vitamin D3 deficiency on a daily basis over several years...

If you want to put this in perspective...  and there are several sides to this perspective depending on who/what you are...  i.e. CH'er, Big Government Bureaucrat, Physician, or Big Pharma...  let's take the use of verapamil as a CH preventative...

Until a couple years ago, neurologists just kept prescribing verapamil in higher doses... until we said "Ah", "Ugh" or fell on the floor clutching our chest...

Then in 2007, Goadsby et al. published a study on CH'ers taking verapamil as a preventative that found the following:


Results: Of three hundred sixty-nine patients with cluster headache, 217 outpatients (175 men) received verapamil, starting at 240 mg daily and increasing by 80 mg every 2 weeks with a check electrocardiogram (EKG), until the CH was suppressed, side effects intervened, or to a maximum daily dose of 960 mg. One patient had 1,200 mg/day. Eighty-nine patients (41%) had no EKGs. One hundred eight had EKGs in the hospital notes, and a further 20 had EKGs done elsewhere. Twenty-one of 108 patients (19%) had arrhythmias. Thirteen (12%) had first-degree heart block (PR > 0.2 s), at 240 to 960 mg/day, with one requiring a permanent pacemaker. Four patients had junctional rhythm, and one had second-degree heart block. Four patients had right bundle branch block. There was bradycardia (HR < 60 bpm) in 39 patients (36%), but verapamil was stopped in only 4 patients. In eight patients the PR interval was lengthened, but not to >0.2 s. The incidence of arrhythmias on verapamil in this patient group is 19%, and bradycardia 36%. Conclusion: We therefore strongly recommend EKG monitoring in all patients with cluster headache on verapamil, to observe for the potential development of atrioventricular block and symptomatic bradycardia.


Now...  How many of us received a prescription for verapamil prior to 2007 and were told to have an EKG to establish a baseline and to have a second EKG after reaching a therapeutic dose?   

My guess is the answer was zero... unless your cardiologist was treating your CH...

Let's try another analogy...  Which is bigger... a bread box or a house?

A house of course...  All Y'all got that right.

Now... which of the following two things we can take to prevent our CH has a bigger risk of death, Vitamin D3 or Verapamil?

If you said verapamil...  Good on you...  Now for the bonus question...

How much bigger?

You'll see what I mean if you take a look at the following link that provides statistics on adverse reactions and side effects attributed to verapamil as reported to the FDA.

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The links relating to death and verapamil are sobering:

Index of reports > Cases resulting in death (133)
         Completed Suicide (104),  Cardiac Arrest (12),  Drug Toxicity (10),  Poisoning (10),  Cardio-Respiratory Arrest (6),  Intentional Drug Misuse (5),  Poisoning Deliberate (5),  Medication Error (5),  Respiratory Arrest (5),  Intentional Overdose (4)

Kind of blows your mind a bit... doesn't it?  Now I'm not a doctor and you'll notice I didn't say "Don't take verapamil..."  It's a valuable medication when prescribed properly.  But when you compare the risk:reward ratios between verapamil and vitamin D3...  there's two reasonable options but really one good option...

Soooo...  in my book...  It all comes down to quality of life and the risk of keeping it high or at least acceptable so we can function like normal folks do...  If the risk is low in maintaining this level of QoL when preventing your CH...  it's a no brainer...  You decide then talk with your doctor...

Take care,

V/R, Batch
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« Last Edit: Dec 12th, 2011 at 6:34pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #483 - Dec 13th, 2011 at 9:46pm
 
Yikes. I now better understand why my Dr and Cardiologist fanatically said NO WAY to verapamil. I have a stubborn case of recurrent SVT, (Super ventricular tachycardia), which means Atria tachycardia (upper heart) and its the 'nuisance' form. Ventricular tachycardia is the one that kills. bradycardia is very scary (too slow HR), I've been boarder-line once, during surgery. Not a good feeling, even while sedated.

Great info, and its amazing EKG's are not done for 100% of patients. It takes 10 seconds, and a sheet of paper. I could give myself one if you left me alone with the machine for 10 mins. Its harder to hook-up a printer then an EKG. lol

Just on the basis of risk, vs cost of doing an EKG.
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Re: 123 Days PF And I Think I know Why
Reply #484 - Dec 15th, 2011 at 3:54am
 
Thanks for the info Batch - I love you your updates, the're like a mini encyplopedia.  Wink
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Re: 123 Days PF And I Think I know Why
Reply #485 - Dec 15th, 2011 at 1:10pm
 
oxyrunner wrote on Dec 15th, 2011 at 3:54am:
Thanks for the info Batch - I love you your updates, the're like a mini encyplopedia.  Wink


lol. Great analogy. I agree.
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Re: 123 Days PF And I Think I know Why
Reply #486 - Dec 15th, 2011 at 5:08pm
 
oxyrunner wrote on Dec 15th, 2011 at 3:54am:
Thanks for the info Batch - I love you your updates, the're like a mini encyplopedia.  Wink



I always warn people...Batch's posts are long, technical, wordy....read them anyways, they're worth it! Grin

Joe
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Re: 123 Days PF And I Think I know Why
Reply #487 - Dec 16th, 2011 at 1:48pm
 
Survey completed.

My experience is...3 months at Vitamin D 15,000 IU daily = no improvement.

increased Vitamin D to 25,000 IU for past 2 weeks = no improvement.

going to quit regimen as it is ineffective for me. Undecided
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Re: 123 Days PF And I Think I know Why
Reply #488 - Dec 16th, 2011 at 3:15pm
 
LasVegas
None of my business I suppose, but did you try the whole regime or just D3?
I ask because I'm not sure what ingredient is doing me more good then the other, since I was only taking 1200 IU of D3 with
Calcium Citrate w/D3 (1200 mg Calcium, 5 mcg of D3)
Omega 3 (2000 mg derived from 4000 mg of fish oil) 1200 EPA + 800 mg DHA, but I cut back one pill (1/4 total amount)
Multivitamin with extra Selenium (Men's One-a-day)
Ingredients
Vitamins:
    Vitamin A (as acetate).........4000 IU
    Beta-Carotene .....................1000 IU
    Thiamine ).............................2.25 mg
    Riboflavin .............................2.55 mg
    Vitamin B6 .................................3 mg
    Vitamin B12..............................9 mcg
    Vitamin C..................................90 mg
     Vitamin D.................................400 IU
    Vitamin E.....................................45 IU
    Folate........................................0.4 mg
    Niacinamide.............................20 mg
    Panthothenic Acid...................10 mg
    Minerals:
    Chlorine.....................................34 mg
    Chromium............................150 mcg
    Copper........................................2 mg
    Iodine.....................................0.15 mg
    Magnesium............................100 mg
    Manganese.............................3.5 mg
    Molybdenum...........................42 mcg
    Potassium...........................37.5 mcg
    Selenium.............................87.5 mcg
    Zinc.......................................15 mg

I got immediate CH relief and I was in the middle of a bad bout. I had taken psilocybin since it busted my clusters the past 2 times, yet the last time it made my CH's much worse. Perhaps the combo of psilocybin and the Vitamin regime helped me, yet I feel the regime deserves all the credit.

I'm not suggesting what I take(n) would be any better then what you've tried, yet from your Dopamine post I'd suggest trying more Magnesium, perhaps.

I know I'm going to look in to whether I can/could/should increase the amount of Magnesium.
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Re: 123 Days PF And I Think I know Why
Reply #489 - Dec 16th, 2011 at 3:39pm
 
D3 without magnesium may prove not to have the desired effect.  Magnesium is the singlemost important D3 co-factor. Unless your food is very rich on magnesium, do not skip it in this regimen. And if you do, make sure you say it out load. No point blaming the gaz for not working on your car if you're out of oil.
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Re: 123 Days PF And I Think I know Why
Reply #490 - Dec 16th, 2011 at 4:27pm
 
PlayDoh,
Yes, i've done the entire regimen and have had numerous phone conversations as well as in-person discussions with Batch.  I've done everything correctly, yet no relief. 

This regimen has provided excellent results for many, however is not 100% effective for everybody; just like Verapamil/o2/etc is not 100% effective for everybody.
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Re: 123 Days PF And I Think I know Why
Reply #491 - Dec 17th, 2011 at 10:05am
 
Sucks vegas, but yeah, the nature of the beast. We still haven't found that magic 100% silver bullet. Cry

Joe
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Re: 123 Days PF And I Think I know Why
Reply #492 - Dec 17th, 2011 at 10:16am
 
Guiseppi wrote on Dec 17th, 2011 at 10:05am:
Sucks vegas, but yeah, the nature of the beast. We still haven't found that magic 100% silver bullet. Cry

Joe


and we probably never will Joe because there is a lack of awareness, $, neurological education and research/development
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Re: 123 Days PF And I Think I know Why
Reply #493 - Dec 17th, 2011 at 2:33pm
 
LasVegas wrote on Dec 16th, 2011 at 4:27pm:
PlayDoh,
Yes, i've done the entire regimen and have had numerous phone conversations as well as in-person discussions with Batch.  I've done everything correctly, yet no relief. 

This regimen has provided excellent results for many, however is not 100% effective for everybody; just like Verapamil/o2/etc is not 100% effective for everybody.


Damn, I'm truly sorry to hear that. I think that's one of the most puzzling aspects of CH, is the disparity in treatments efficacy.

I wonder how it ranks among ailments in that aspect?

Kudos for giving it a try and helping out with feedback.
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Re: 123 Days PF And I Think I know Why
Reply #494 - Dec 20th, 2011 at 6:19am
 
Batch,  first off, thanks for your info on this.  I'm starting a cycle now and would like to try this along with my rc seeds that I use regularly as maintenance.  The seeds seem to help with the cycles as they have been easier to manage the past couple of years.  My question and maybe somebody already asked, but what about plain vitamin D or is D and D3 the same?  I'm a dummy when it comes to vitamins.  I already take 2000 mg fish oil/day and 2400mg of red yeast rice/day to manage my cholesterol along with with jogging a couple times of the week.  I wonder if my change of lifestyle has helped my CH.  My remission has been 1.5 years compared to the usual 6 months.  I do want to try this immediately because my goal like every bodies is to control this beast as fast as possible w/o using pharma drugs.  Thank God for my O2.  It never lets me down.
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Re: 123 Days PF And I Think I know Why
Reply #495 - Dec 20th, 2011 at 7:26am
 
Batch wrote on Dec 10th, 2011 at 12:54pm:
.

For example, the 500 mg. calcium in this regimen is essential as vitamin D3 pulls calcium from the gut and puts it into solution in the blood.  If you supplement with vitamin D3 and the total intake of calcium from all sources is not sufficient, the vitamin D3 will start leeching calcium from the bones...  Hmmm...  that's not good...



I am not a doctor but engaged in a conversation with my father in law who was almost admitted to the hospital for too much calcium.  He is being treated for a slow growing cancer of some sort that he has had for more than ten years. 

I found this information at the following link:
Vitamin D promotes calcium absorption in the gut and maintains adequate serum calcium and phosphate concentrations to enable normal mineralization of bone and to prevent hypocalcemic tetany. It is also needed for bone growth and bone remodeling by osteoblasts and osteoclasts [1,2]. Without sufficient vitamin D, bones can become thin, brittle, or misshapen. Vitamin D sufficiency prevents rickets in children and osteomalacia in adults [1]. Together with calcium, vitamin D also helps protect older adults from osteoporosis.

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The two pieces of information appear to contradict each other. 

Batch could you help clear this up as I am sure you have seen this before?

Thanks

7 Days PF

Eric
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Re: 123 Days PF And I Think I know Why
Reply #496 - Dec 20th, 2011 at 8:14am
 
Hi Eric,
I've mentioned it several times, that most people get enough calcium in their diet. We have discussed the issue at VitaminDcouncil a couple of years back, and the conclusion was that most people taking vitamin-D, DON'T need extra calcium.
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Re: 123 Days PF And I Think I know Why
Reply #497 - Dec 20th, 2011 at 4:54pm
 
Most folks who eat a healthy, well-balanced diet get sufficient calcium.  However as we get older, we need additional calcium to help prevent osteoporosis.  Most calcium supplements also contain 600 to 800 I.U. vitamin D3 to help push the calcium supplements into the blood stream.

The Food and Nutrition Board at the Institute of Medicine set the Dietary Reference Intakes (DRIs) for vitamin D3 and calcium in 2010.  Understand that the four members of the FNB who set these DRIs are recognized experts in nutrition and biochemistry.  Three of them come from tenured professorial positions academia and one from big government (FDA and NIH-DHHS).  In short, they're not medical doctors nor do they test and treat patients for vitamin D3 deficiencies on a routine basis...  but they want to control what you take when it comes to USP vitamins and minerals.

You'll find the DRIs for calcium and vitamin D3 at the following link:

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It's interesting to note that the DRIs call for ~ 1000 mg/day calcium and a staggering 600 IU/day vitamin D3.  Moreover these experts also decided that the safe tolerable upper limit (UL) daily intake for these two supplements are 2000 mg/day calcium and 4,000 IU/day vitamin D3.

You're probably wondering why the political circumlocution and why doesn't he answer the question...

Here it is...  The experts in vitamin D3 therapy talk about a 95% dose...  In other words, in order to ensure that adequate calcium levels are met for 95% of the population and the average requirement for calcium is 800 mg/day, then we need a total of 1000 mg/day calcium from all sources, i.e. dairy products and supplements to ensure 95% of the population has enough calcium. 

However, when you consider that 10,000 IU/day vitamin D3 will drive more calcium from the gut into solution than normal, you're faced with two choices and their consequences... 

Take more calcium... when it may not be needed...  or take too little calcium and run the risk of vitamin D3 leaching calcium from bones when too little calcium is available in the gut...

The anti-inflammatory regimen calls for 500 mg/day of calcium citrate...  Sounds reasonable to me...  you decide.

Take care,

V/R, Batch
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« Last Edit: Dec 20th, 2011 at 7:10pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #498 - Dec 21st, 2011 at 7:06am
 
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Take more calcium... when it may not be needed...  or take too little calcium and run the risk of vitamin D3 leaching calcium from bones when too little calcium is available in the gut...


If your not getting enough calcium from your diet, it's very important to get a calcium supplement. But with 10.000 IU of vitamin-D3 and a normal diet most people get all the calcium needed, and nothing are lost from the bones but calcium are added. Most people don't get enough magnesium, so the 500 mg extra calcium you recommend will offset most of the extra magnesium supplement, and the cal/mag imbalance is still present. So the extra calcium makes no sense.
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« Last Edit: Dec 21st, 2011 at 7:44am by nhs »  
 
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Re: 123 Days PF And I Think I know Why
Reply #499 - Dec 21st, 2011 at 9:12am
 
nhs wrote on Dec 21st, 2011 at 7:06am:
Most people don't get enough magnesium, so the 500 mg extra calcium you recommend will offset most of the extra magnesium supplement, and the cal/mag imbalance is still present. So the extra calcium makes no sense.


Hi nhs.  I know D3 will heighten the uptake of Ca. But what is the role of Mg here?  Why imbalance, and what is the effect?

Thanks!
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