Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Pages: 1 ... 47 48 49 50 51 ... 107
Send Topic Print
123 Days PF And I Think I know Why (Read 447417 times)
slacker032
CH.com Old Timer
****
Offline




Posts: 325
Los Angeles, CA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1200 - Jan 24th, 2013 at 4:32pm
 
Thanks Batch.  Should I take the Centrum Silver and Magnesium 400 mg at the same time with a glass of lemonade 30 minutes before dinner or do I take it all at the same time with the D3 and Fish Oil?  Also, in the PM you said I should up my Zinc to 25 mg.  Does that include the 15 mg of Zinc in the Centrum Silver or should I take 25 mg of Zinc on top of that?
Back to top
« Last Edit: Jan 24th, 2013 at 4:39pm by slacker032 »  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3706
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1201 - Jan 24th, 2013 at 5:32pm
 
Hey Slacker,

I take all the supplements at one time usually with the biggest meal of the day.  I do this for a couple reasons.  The first is vitamin D3 absorption increases with meals containing higher levels of fat.

The second reason is simple... it's easier for me to take this regimen all at once... I've tried breaking it up, but that resulted in missed doses when I got busy and forgot to take the rest of the daily dose.

Regarding zinc intake... The Recommended Dietary Allowance (RDA) for adults is a zinc intake of 12 mg/day and the Tolerable Upper Intake Level (UL) for adults is 40 mg/day of zinc.

12 mg/day zinc will prevent a zinc insufficiency...  Keeping the intake at or below 40 mg/day will prevent other problems.

Accordingly, I try to make sure my total supplemental zinc intake is no more than 25 mg/day...

When I eat oysters, I cut the zinc for a day or two...  6 medium sized oysters contain over 76 mg of zinc.

Hope this helps.

Take care and please keep us posted.

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
slacker032
CH.com Old Timer
****
Offline




Posts: 325
Los Angeles, CA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1202 - Jan 24th, 2013 at 6:07pm
 
Gotcha.  One last question that I forgot to ask.  Is it ok for me to still take the baking soda tonic 4 times a day?  Before I started taking them, I was having trouble aborting my attacks with O2 and my cycle was at peak intensity.
Back to top
« Last Edit: Jan 24th, 2013 at 6:15pm by slacker032 »  
 
IP Logged
 
slacker032
CH.com Old Timer
****
Offline




Posts: 325
Los Angeles, CA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1203 - Jan 24th, 2013 at 7:25pm
 
I just went to the store to buy the Centrum Silver and Zinc supplement.  For some reason, they only had Zinc in 15 or 50 mg.  I got the 15 mg so with the other 15 mg of Zinc in Centrum Silver, I'll be taking 30 mg of Zinc per day.  That's under the 40 mg threshold that you mentioned so I'm guessing it should be ok.
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3706
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1204 - Jan 24th, 2013 at 9:12pm
 
Slacker,

Thanks for the update.  I think you'll find the vitamin A in Centrum Silver will make a welcome difference in your cluster headache symptoms...

The baking soda tonic serves two purposes...  If it works to help lessen cluster headache symptoms, it's a simple indication you've likely got a low arterial/systemic pH.

The other purpose is to provide a temporary relief from the more painful aspects of our disorder.

In either case, finding a longer more sustainable solution to a low pH condition would be wise.  A simple change in diet like switching to the GOMBS or an alkalizing diet will be a better and longer lasting solution.  There are several web sites on both diets.

Regarding zinc...  Once you reach the RDA, a little more goes a long way.  30 mg/day is likely fine...  Splitting the 15 mg zinc tablet with a pill cutter or taking one 15 mg zinc tablet every other day on top of the zinc contained in a Centrum Silver tablet may be a more conservative approach.

Take care and please keep us posted

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
slacker032
CH.com Old Timer
****
Offline




Posts: 325
Los Angeles, CA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1205 - Jan 25th, 2013 at 12:02am
 
Batch,

Got it.  I'll stick with the baking soda tonic for at least a few more days but I'll look into modifying my overall diet.  Thanks again.
Back to top
« Last Edit: Jan 25th, 2013 at 12:02am by slacker032 »  
 
IP Logged
 
his wife
CH.com Old Timer
****
Offline


The sweetest sound is
my children's laughter


Posts: 271
Re: 123 Days PF And I Think I know Why
Reply #1206 - Jan 25th, 2013 at 2:28pm
 
Hey Gang!   I haven’t been on the boards for quite a while (life you know), but had to post amazing results that my hubby has experienced over the past year.  To give some history, my husband has suffered from CH for over 21 years.  His cycles would start like clockwork late spring early summer and end most generally by October every year for 21 years.  There were 2 years where his cycle started in January.   He was on a regime of high dose Prednisone (hit it high, taper down…get knocked on your butt and start all over again), Verapamil (tapering up to 480 mg day), with melatonin for sleep and hitting the Imitrex and O2 (set at 15) hard every day.   He tried various suggestions here (energy drinks, high flow O2…etc), with little relief.   The Prednisone was SO hard on his body and he still suffers from of the long-term effects of long-term, high dosage use.   This went on for years and he was able to make it through each cycle year after year.  It was awful, as you all know, to watch him suffer with this relentless condition, day after day.   Well last year he started in cycle again in January.  We went to old “go to” regime…but something had to change.    We couldn’t get into his specialist for 3 months.

After reading Batch’s theory, I got in contact with him.   The results were amazing.   We started his regime in March initially 10,000 IU D3, Calcium Citrate 1,000 mg, fish oil 2,400 mg with a multi-vitamin containing zinc and magnesium, and he stayed on his Verapamil.   Mind you my hubby was getting hit HARD several times a day, sleep was non-existent, he lived for his O2 and burned through his stockpile of Imitrex.  Within WEEKS of starting this regime, he was improving.   Soon he wasn’t needing the Imitrex, and just using O2.  Shortly after that he didn’t need the O2.   By the time we went to see the Dr. he was painfree.   The Dr. ran a number of tests (EKG for heart, blood work to check D levels).   The Dr. was concerned with the level of D3 he was taking and suggested we reduce it.   He had never heard of this (and he is one of the best headache docs, practicing at a prestigious hospital).

So here we are nearly one year later and hubby is still pain free, didn’t go into cycle last summer, and feels great.  He is on a maintenance regime of Calcium Citrate w/ D3 (630 mg calcium, 500 IU D3),  5,000 IU D3 (total D3 = 5,500), 2,400 mg fish oil, and 240 mg Verapamil (I asked doc if ok to continue Verap year round for maintenance/prevention and he gave ok).    He hasn’t had so much as a shadow.

So Batch….you’re my hero!   Thank you for your guidance and support.  You have truly changed our lives since almost half of each year was not truly living for us.   I waited to post to make sure this was the real deal for us.  I’m posting today to thank you from the bottom of my heart and give others hope.    A number of years ago, my beautiful, strong hubby was suicidal, he suffered more than a human being should be allowed to suffer (and know thousands of others continue to).   But there is hope…don’t give up the fight…try this.  I pray you get the results we did.   Love ya Batch!  (Sorry this is so long!) 
Back to top
« Last Edit: Jan 25th, 2013 at 10:38pm by his wife »  
 
IP Logged
 
djphrenzy
CH.com Junior
**
Offline


I Love CH.com!


Posts: 93
Re: 123 Days PF And I Think I know Why
Reply #1207 - Jan 25th, 2013 at 2:42pm
 
Awesome.   Cheesy
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3706
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1208 - Jan 25th, 2013 at 5:02pm
 
His Wife/Pickles...

Thanks for the wonderful update and the very kind words...  However, as I recall, you were the prime mover who took the bull by the horns and started your husband on this regimen...  You were also responsible for getting your husband started on high flow oxygen therapy...

Without supporters like you who look at our problem objectively, then take effective and sustained action... too many of us CH'ers would be down and out...   Good on you.

As a side note, I find it fascinating that neurologists and headache specialists experienced in treating patients with cluster headache are quick to say they know nothing about treating this disorder with vitamin D3 therapy... yet they swoon and go into fibrillation at the doses we take and tell us to cut back...

As you can see in the chart below, a maintenance dose of 5500 IU/day vitamin D3 can work... but it doesn't leave much wiggle room in the average 25(OH)D response:

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

A 10,000 IU/day vitamin D3 maintenance dose provides a better safety reserve margin of 25(OH)D...  not to mention better protection against colds and flu.

The bottom line... It's the 25(OH)D serum concentration that counts...  not the vitamin D3 dose.  A target 25(OH)D serum concentration of 85 ng/mL is safe and effective.  Just get tested and take whatever dose of vitamin D3 that results in a stable 25(OH)D serum concentration of 85 ng/mL.

My wife runs on vitamin D3 like it's jet fuel...  She burns 15,000 IU/day and loves it.  She's got more energy than I've seen in many years.

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

If she didn't slow down occasionally...  I'd never catch her...  She also kicked the heck out of 75 a month a go...  Go figure...

Take care and thanks again for the wonderful post.

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
Sixpack
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 10
Honey Brook, PA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1209 - Jan 25th, 2013 at 9:16pm
 
Not that I don't like you folks, but I thought all of this business was over with.  Smiley  Well, I was wrong and I am back again. All kinds of stuff has happened since I was last hear. Moved to the Dallas area and back in school using my GI Bill benefits, which leaves me with limited care from the VA. They don't carry my injections, so they gave me the sumatriptan pills that we all know don't work. They also got me the prednisone taper and verapamil. I'm working on getting the O2 going again, as it worked during my last cycle. Additionally, I am giving this regimen a go. So, I just wanted to drop a line in here and let folks know that I am on day 4 of taking these vitamins and I'm encouraged by looking through other folks' successes. I will most assuredly let everyone know how it goes. Thanks for the good work, Batch. Also, thanks to the rest of you for sharing your experience with this treatment. PF wishes to you all!
Back to top
  
 
IP Logged
 
enli
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 8
Re: 123 Days PF And I Think I know Why
Reply #1210 - Jan 26th, 2013 at 7:03am
 
enli wrote on Jan 19th, 2013 at 9:24am:
64 male, 22yr CH fighter, 15yrs w/6 different neurologist, name it I have tried it (except this regime and ClusterBuster regime).
Episodic for 15yrs (CH Oct-Apr, PF other months), then chronic for 3yrs, finally got neuro to let me try lithium and was pain free for almost two years.  Now "They're back!!!" and yes they started in Oct 2012

Current meds:  Lithium 300mg twice/day, Verapamil 240mg twice/day

"Normal" day:  Light ghost comes and goes most of the day, if I try to nap usually will wake after an hour with K3-4 ache (O2 for 10min will abort), to sleep I go--1 to 2 hrs later will wake with ache and can be K2 to K7, if low just O2 and back to sleep if high will take half Relpax then O2.  Once or twice a month have K20!! (ha-ha) and keep trex shots available for these special occasions.  4 hours after shot will take whole Relpax, CH will rebound from trex without Relpax.

Company closed last April (after 12 years with them), lost job and insurance, had stockpiled Relpax and Imitrex, other meds and O2 cost about $200/month.  Money is an issue and results sound promising for this regime.

Found this thread last night and am own my way to Walmart for D&OIL, will keep posting as to results.  Assuming this starts to work, should I taper off the Lithium and Verapamil at same time or Lithium first and then Verapamil?

Always ask the prettiest girls to dance, all they can say is 'No!"

Back to top
  
 
IP Logged
 
enli
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 8
Re: 123 Days PF And I Think I know Why
Reply #1211 - Jan 26th, 2013 at 7:52am
 
Oops! I think I just posted my original message by mistake.  Sorry about that!!

Week One:
Ghost headaches have just about disappeared.  Took first dose last Saturday and did not have CH (K3) until Wed afternoon during nap time. Ha! Thursday night K3 and K5 (O2 & half Relpax) and Friday (K6) while watching TV in bed (O2 & half Relpax).

Other observations:
If dose taken AFTER meal, burp fish oil for hours.  If taken BEFORE meal this is not a problem.  Energy level a bit higher, but am only sleeping 4 to 6 hours a night, (6 to 8 hours is my norm).  Could this be a side effect from regimen???

Wow factor way up for 4 days, diminished some what for last 3 days, but 4 CH's compared to 12 CH's a week is vast improvement in my book.  Will continue current dosage for 3 more weeks and post results

Am confused as to how to post updates that will stay with original post? Is this done automatically or do I need to post these in a special way?

Tomato seeds need to be started soon for next spring!
Back to top
  
 
IP Logged
 
Guiseppi
CH.com Moderator
CH.com Alumnus
*****
Offline


San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1212 - Jan 26th, 2013 at 9:17am
 
I have the same "burp up fish oil" and even mild nausea if I take this on an empty stomach. Taken with dinner, my biggest meal of the day, seems to eliminate all that unpleasant stuff.

If you open this thread, and then click reply, it will automatically post as the next item in this thread.

Joe
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
IP Logged
 
djphrenzy
CH.com Junior
**
Offline


I Love CH.com!


Posts: 93
Re: 123 Days PF And I Think I know Why
Reply #1213 - Jan 26th, 2013 at 11:18am
 
This brand that I found doesn't result in Fish Burps.  haha

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
Back to top
  
 
IP Logged
 
Radar63
CH.com Junior
**
Offline


I Love CH.com!


Posts: 42
UK
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1214 - Jan 27th, 2013 at 8:50am
 
Hi guys

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register have omega3 oil that never burps and never leaves an after taste.  The 1000mg capsules are great! They might be a little more expensive than some from Walmart, but they are really great quality.

Cheers

Ian
Back to top
  
 
IP Logged
 
9thNerve
CH.com Junior
**
Offline


I Love CH.com!


Posts: 33
Re: 123 Days PF And I Think I know Why
Reply #1215 - Jan 28th, 2013 at 8:18pm
 
What is the average time people have noticed it takes for this regimen to take effect? 8 days into it and still having regular clusters Lips Sealed
(I began doing the alka seltzer yesterday. My D3 level after 2 days initial was 64.8. Had 2nd loading dose of D3 last eve)
THanks everyone for all the support!
Back to top
  
 
IP Logged
 
9thNerve
CH.com Junior
**
Offline


I Love CH.com!


Posts: 33
Re: 123 Days PF And I Think I know Why
Reply #1216 - Jan 28th, 2013 at 8:20pm
 
FISH OIL that tastes great! BARLEENS Lemon Zest or Mango Peach liquid. Delicious to add in a smoothy , also. COSTCO carries the Lemon Zest in a 65 serving bottle for about 21.00 Grin
Back to top
  
 
IP Logged
 
Brew
CH.com Sponsor
CH.com Alumnus
***
Offline




Posts: 14163
Re: 123 Days PF And I Think I know Why
Reply #1217 - Jan 28th, 2013 at 9:28pm
 
9thNerve wrote on Jan 28th, 2013 at 8:18pm:
What is the average time people have noticed it takes for this regimen to take effect? 8 days into it and still having regular clusters Lips Sealed
(I began doing the alka seltzer yesterday. My D3 level after 2 days initial was 64.8. Had 2nd loading dose of D3 last eve)
THanks everyone for all the support!

64.8 what? What's the unit of measure? If it's nmol/L, you're not even close to the therapeutic range yet. If it's ng/mL, you're just starting to break into the therapeutic range.

It took me 2 months to get there. Most of that time I was taking 20,000 iu/day with a 50,000 iu loading dose once per week.

WAY too soon to give up on it.
Back to top
  

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
IP Logged
 
9thNerve
CH.com Junior
**
Offline


I Love CH.com!


Posts: 33
Re: 123 Days PF And I Think I know Why
Reply #1218 - Jan 28th, 2013 at 9:40pm
 
64.8ng   
I upped the daily dose to 20,000iu with the 50,000iu loading. I had actually been on vit D 10,000iu daily for many months so thats why I upped to 20,000iu to get in to the 80-100ng range.
Oh, I hope this works...
Day 21 with  continuous headaches and now I am afraid to use anymore abortive IMITREX for fear of rebound HA.
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3706
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1219 - Jan 29th, 2013 at 10:58am
 
In case there were any doubts about the other benefits of taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3...  Moreover, why taking it with the largest and highest fat content meal of the day is important...

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

Take care,

V/R, Batch
Back to top
« Last Edit: Jan 29th, 2013 at 11:44am 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
pete_batcheller  
IP Logged
 
9thNerve
CH.com Junior
**
Offline


I Love CH.com!


Posts: 33
Re: 123 Days PF And I Think I know Why
Reply #1220 - Jan 29th, 2013 at 12:48pm
 
What about re-bound from the meds? What do you all notice? How much is too much rescue med?
Back to top
  
 
IP Logged
 
oxyrunner
CH.com Junior
**
Offline


In the middle of difficulty
lies opportunity


Posts: 41
Kent UK
Gender: female
Re: 123 Days PF And I Think I know Why
Reply #1221 - Jan 29th, 2013 at 4:59pm
 
Hi guys,
just signing in with a brief update, after 4 weeks on 20,0000 iu of D3 and no good results I upped it to 30,000 and 4 days later - NO CH  Cheesy so I then reduced it back to 20,000 and within 2 days the beast bounced back.
I am back on 30,000 now and PF, seeing a different dr on friday hopefully to book blood test. Will put test results up ASAP.
x x
Back to top
  
 
IP Logged
 
9thNerve
CH.com Junior
**
Offline


I Love CH.com!


Posts: 33
Re: 123 Days PF And I Think I know Why
Reply #1222 - Jan 29th, 2013 at 9:31pm
 
How often were /are your cycles of good days/bad?
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3706
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1223 - Jan 29th, 2013 at 10:19pm
 
Oxyrunner,

Thanks for the very interesting update.  I've seen this phenomenon reported before.

I can't prove it just yet, but it appears there are two factors involved... You'll need to see your PCP or neurologist to get lab tests for 25(OH)D, total calcium and PTH to have a better idea what's happening.

The first factor is your capacity to metabolize vitamin D3 into 25(OH)D then on to 1,25(OH)2D3, (calcitriol) the active hormonal form of vitamin D3, may be a little low...

In other words, you may not building 25(OH)D reserves fast enough to prevent your cluster headaches or the next phase of metabolism to calcitriol is low for some other reason.

The second factor is you may be consuming calcitriol a lot faster than normal... This can be due to a number of other factors including a subclinical (undetected) viral infection or some kind of allergic reaction. 

Either condition will consume calcitriol, which has a half life of 4 to 6 hours, to the point your 25(OH)D reserves are being consumed faster than normal so the 25(OH)D serum concentration drops... 

Again, a set of lab tests can help confirm this one way or the other.

The good news is the intake of 30,000 IU/day vitamin D3 or a "brut force" dosing schedule is working.

A couple things you can try is take the vitamin D3, Omega 3 fish oil and cofactors with the largest meal of the day or the meal containing the most fat.  Vitamin D3 is lipophilic (loves fat), so doing this will improve vitamin D3 absorption.

The second thing to try is to stop taking the calcium for a few weeks, up the magnesium daily intake to 400 mg/day, zinc to 25 mg/day and vitamin A to 3000 IU/day.

I take Centrum Silver to get the basic dose of the vitamin D3 cofactors including vitamin A then add a 400 mg softgel of magnesium and a 10 mg tablet of zinc.

The only word of caution is watch the magnesium...  400 mg/day should be fine... More than that can be problematic... You'll know when you take too much magnesium... you'll get loose as a goose.

Take care and please keep us posted.

V/R, Batch
Back to top
  

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
pete_batcheller  
IP Logged
 
Judge_Smails
CH.com Junior
**
Offline




Posts: 74
|maplewood|USA|New_Jersey
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1224 - Jan 30th, 2013 at 4:02pm
 
Just got my first 25(OH)D results back - 149ng/mL

I was expecting a cycle to start around May of 2012, so in April I started on the regiment and my cycle never came.  I started taking 10K IU D3, 1200mg flaxseed oil (vegetarian alternative to fish oil), 500mg Magnesium, 500mg MSM/Glucosamine, plus a B compound vitamin.  Since then I experience some occasional shadows which I knocked out with energy drinks.  I did take 24K IU D3 once a week when the shadows started.  I haven't had any shadows in the past 2 months and have eliminated the once a week loading of D3.  Considering that my ng/mL level is good, I may drop down to 8K IU daily.

So far so good!

Thanks Batch!
Back to top
  
 
IP Logged
 
Pages: 1 ... 47 48 49 50 51 ... 107
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!