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





Pages: 1 ... 58 59 60 61 62 ... 107
Send Topic Print
123 Days PF And I Think I know Why (Read 443827 times)
TeeJ2379
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 140
Central PA, USA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1475 - Aug 27th, 2013 at 2:24am
 
Still going OK - If I could get some good sleep I think I would feel better - fortunately its not CH keeping me up , but a 4 month old baby girl at home Smiley  A much better reason to lose sleep Smiley  No CH still, and only some minor cheek and jaw pain during the day , but I feel like that is due to my lack of sleep.  I've tapered back down to 10k D3 as we discussed and no adverse affects.  GP was actually on vacation so he was not able to schedule my D3 test - hoping to hear back on Thursday when hes back in the office.
Back to top
  

Pain is a wonderful teacher and motivator...
 
IP Logged
 
kimji523
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
Re: 123 Days PF And I Think I know Why
Reply #1476 - Aug 27th, 2013 at 5:41pm
 
Hi all,

I just discovered the site and and it's very comforting to know that so many people are sharing so others can find relief.

Batch, I wanted to ask about your regimen because my CHs only come at certain times of the year.  I have breaks of about 4 to 8 months of being pain free and then they'll come for about 3-4 weeks; then another 4-8 months nothing.

I never change anything routine in my life, whether it's food, alcohol, sleep, etc, and whether or not I'm in my CH cycle or not.  So, in your opinion, do you think it may still be something to do with D3?  I'm just thinking of the pain free periods (i'm in a CH cycle now, but before this was Dec of '12) and thinking why my D3 levels would fluctuate cyclically, if that's the case.

I haven't gotten bloodwork done yet; just wanted an opinion first.  I'm just on generic sumatriptan and it seems to work most of the time if i get it early.

Thanks for any input,

TK
Back to top
  
 
IP Logged
 
TeeJ2379
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 140
Central PA, USA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1477 - Aug 27th, 2013 at 5:52pm
 
I don't want to jump on Batch's response, but as I understand it, your description of your CH's are pretty common.  Most folks have periods of PF months or weeks, followed by weeks or months of painful episodes.

Also as you read through his regiment found here:

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

you will see that he recommends that people stay on the regiment for several months, and if it works to stay on it for life as it has other benefits and is generally healthy for most people. 

In your case depending how low your Vit D3 level is it may take several months to get it up to the right level, in which case your current cycle maybe over - so most likely you would want to stay on it until your next cycle is suppose to start to see if its working.   

This regiment is not a cure for CH, but a remedy that keeps CH at bay instead of pharmaceuticals, which have bad side affects and are expensive..This regiment is in expensive and so far has no side affects and lots of positive effects for most people.

kimji523 wrote on Aug 27th, 2013 at 5:41pm:
Hi all,

I just discovered the site and and it's very comforting to know that so many people are sharing so others can find relief.

Batch, I wanted to ask about your regimen because my CHs only come at certain times of the year.  I have breaks of about 4 to 8 months of being pain free and then they'll come for about 3-4 weeks; then another 4-8 months nothing.

I never change anything routine in my life, whether it's food, alcohol, sleep, etc, and whether or not I'm in my CH cycle or not.  So, in your opinion, do you think it may still be something to do with D3?  I'm just thinking of the pain free periods (i'm in a CH cycle now, but before this was Dec of '12) and thinking why my D3 levels would fluctuate cyclically, if that's the case.

I haven't gotten bloodwork done yet; just wanted an opinion first.  I'm just on generic sumatriptan and it seems to work most of the time if i get it early.

Thanks for any input,

TK

Back to top
  

Pain is a wonderful teacher and motivator...
 
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 #1478 - Aug 27th, 2013 at 9:02pm
 
Question about the daily Magnesium intake.  I could only find Magnesium Citrate in 250mg doses.  So with two of those doses per day, would 500mg of Magnesium Citrate be too much?  That would be on top of 80mg of Magnesium Oxide in my Calcium Citrate supplement and another 50mg of Magnesium Oxide in my multi-vitamin.

After adding all that up, is it too much?
Back to top
« Last Edit: Aug 27th, 2013 at 9:06pm by slacker032 »  
 
IP Logged
 
LasVegas
CH.com Sponsor
***
Offline


Episodic CH since 11 yrs
old, now 50.


Posts: 2020
north of the 60th parallel
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1479 - Aug 27th, 2013 at 10:15pm
 
slacker032 wrote on Aug 27th, 2013 at 9:02pm:
Question about the daily Magnesium intake.  I could only find Magnesium Citrate in 250mg doses.  So with two of those doses per day, would 500mg of Magnesium Citrate be too much?  That would be on top of 80mg of Magnesium Oxide in my Calcium Citrate supplement and another 50mg of Magnesium Oxide in my multi-vitamin.

After adding all that up, is it too much?



My guess is that is too much as the recommended dosage for Magnesium, preferably Citrate form, is 400mg/daily. 

A few weeks ago, I was questioned if I spend a good deal of my day on the toilet because of 400mg/daily, so can only imagine what 630mg would do to one's digestive system. Shocked

Can the 250mg be cut in half or thirds? 

-Gregg in Las Vegas
Back to top
  

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1480 - Aug 27th, 2013 at 11:09pm
 
Slacker,

I'm with Gregg... 400 mg/day is more than sufficient unless your mega dosing on vitamin D3 over 20,000 IU/day.  In that case, 500 to 600 mg/day should be sufficient.

You'll know when you get too much magnesium... you'll get lose 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
 
slacker032
CH.com Old Timer
****
Offline




Posts: 325
Los Angeles, CA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1481 - Aug 27th, 2013 at 11:25pm
 
Actually, looks like each softgel is 125mg so if I take 3 gels, that would be 375.
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1482 - Aug 27th, 2013 at 11:25pm
 
Hey TK,

Welcome to CH.com.  TeeJ is spot on with every thing he said...

Do try to get the 25(OH)D lab test and be sure to discuss this regimen with your neurologist or PCP.  Just be aware there are no other studies on the use of vitamin D3 as a cluster headache preventative other than what you'll find at this site.

Accordingly, most physicians will toss the BS flag when you ask for the lab test for 25(OH)D.  If they do, wager a Coke & candy bar if your 25(OH)D serum concentration comes back anywhere greater than 30 ng/mL

If it comes back < 30 ng/mL, it's ethical that he treats the vitamin D3 deficiency...  In that case, roll out the info on the anti-inflammatory regimen...  and make another wager... 

If your cluster headaches dissipate when your 25(OH)D goes over 60 ng/mL... there's no charge for the office call...

Guts ball...  Go for it!   The odds are in your favor and most physicians are clueless when it comes to cluster headaches or vitamin D3 therapy...  It's like taking candy from a baby...

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 #1483 - Aug 27th, 2013 at 11:28pm
 
And if I add the 50 and 80mg of Magnesium Oxide from my multi and calcium citrate, that would be a total for 505mg of Magnesium.  That should be ok right, especially considering the low bioavalability of Magnesium oxide.
Back to top
  
 
IP Logged
 
LasVegas
CH.com Sponsor
***
Offline


Episodic CH since 11 yrs
old, now 50.


Posts: 2020
north of the 60th parallel
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1484 - Aug 27th, 2013 at 11:36pm
 
slacker032 wrote on Aug 27th, 2013 at 11:28pm:
And if I add the 50 and 80mg of Magnesium Oxide from my multi and calcium citrate, that would be a total for 505mg of Magnesium.  That should be ok right, especially considering the low bioavalability of Magnesium oxide.


Your toilet will answer your question. Grin  Might consider switching name brands when you're able to ensure proper dosages. 

Good luck!

-Gregg in Las Vegas
Back to top
« Last Edit: Aug 27th, 2013 at 11:37pm by LasVegas »  

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
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 #1485 - Aug 27th, 2013 at 11:45pm
 
LasVegas wrote on Aug 27th, 2013 at 11:36pm:
slacker032 wrote on Aug 27th, 2013 at 11:28pm:
And if I add the 50 and 80mg of Magnesium Oxide from my multi and calcium citrate, that would be a total for 505mg of Magnesium.  That should be ok right, especially considering the low bioavalability of Magnesium oxide.


Your toilet will answer your question. Grin  Might consider switching name brands when you're able to ensure proper dosages. 

Good luck!

-Gregg in Las Vegas


Don't really have much of a choice since it's the only one available at the store. I'll probably shop online for a more uniform dosage but this is what's available to me at the moment.
Back to top
  
 
IP Logged
 
LasVegas
CH.com Sponsor
***
Offline


Episodic CH since 11 yrs
old, now 50.


Posts: 2020
north of the 60th parallel
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1486 - Aug 27th, 2013 at 11:53pm
 
Try Vitamin Shoppe for Magnesium Citrate.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Bottle cost $18 bucks and has 300 tablets AKA 150 days worth of 200 mg tablets. 
Take 2 per day = 400mg/day dosage.


-Gregg in Las Vegas
Back to top
  

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
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 #1487 - Aug 28th, 2013 at 12:05am
 
LasVegas wrote on Aug 27th, 2013 at 11:53pm:
Try Vitamin Shoppe for Magnesium Citrate.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Bottle cost $18 bucks and has 300 tablets AKA 150 days worth of 200 mg tablets. 
Take 2 per day = 400mg/day dosage.


-Gregg in Las Vegas


But don't I still have to factor in the Magnesium Oxide I get from the Calcium Citrate and multi-vitamin.  With Vitamin Shoppe dosage, it would come out to 530mg total.
Back to top
  
 
IP Logged
 
LasVegas
CH.com Sponsor
***
Offline


Episodic CH since 11 yrs
old, now 50.


Posts: 2020
north of the 60th parallel
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1488 - Aug 28th, 2013 at 12:13am
 
slacker032 wrote on Aug 28th, 2013 at 12:05am:
LasVegas wrote on Aug 27th, 2013 at 11:53pm:
Try Vitamin Shoppe for Magnesium Citrate.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Bottle cost $18 bucks and has 300 tablets AKA 150 days worth of 200 mg tablets. 
Take 2 per day = 400mg/day dosage.


-Gregg in Las Vegas


But don't I still have to factor in the Magnesium Oxide I get from the Calcium Citrate and multi-vitamin.  With Vitamin Shoppe dosage, it would come out to 530mg total.



And to avoid additional mineral dosages from other supplements, get this Calcium Citrate bottle of 300 tablets AKA 150 days worth, total $20 bucks.

Each tablet is 250mg with no other ingredient. 
Take 2 per day = 500mg/day as recommended.

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

Your Multi-vitamin of additional mineral is minimal and should be of no concern.  From what I understand, your multi should include Vitamin A, K and Zinc.

-Gregg in Las Vegas


Back to top
  

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1489 - Aug 28th, 2013 at 12:14am
 
Magnesium oxide has a bioavialability of less than 5%...  Accordingly, your present intake of magnesium is likely adequate to less than adequate... 

If you switch to 400 mg/day magnesium malate, magnesium glycinate or magnesium citrate, in that order, you'll have a much higher mangesium bioavailability... 

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 #1490 - Aug 28th, 2013 at 12:17am
 
Thanks guys.
Back to top
  
 
IP Logged
 
TeeJ2379
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 140
Central PA, USA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1491 - Sep 2nd, 2013 at 12:23am
 
LasVegas wrote on Aug 27th, 2013 at 11:53pm:
Try Vitamin Shoppe for Magnesium Citrate.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Bottle cost $18 bucks and has 300 tablets AKA 150 days worth of 200 mg tablets. 
Take 2 per day = 400mg/day dosage.


-Gregg in Las Vegas


Yup that's the stuff I take for MG - Sam's Club / Cosco have good prices on most of the other stuff too..If not Vitamin Shoppe seems to have the stuff too.  I really like that site and there is a actual location near my house...
Back to top
  

Pain is a wonderful teacher and motivator...
 
IP Logged
 
CH Brain
Ex Member



Re: 123 Days PF And I Think I know Why
Reply #1492 - Sep 6th, 2013 at 3:41am
 
Hey Batch,

A certain Cluster Headache specialist & Professor of Pharmacology owes me about a slab of coke and half a truckload of chocolate bars then Angry...
I'm off to collect. Tongue

Cheers, Ben.
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3704
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1493 - Sep 7th, 2013 at 12:50pm
 
Hey Ben,

Thanks for the update...  Howz the good professor doing?

Take care,

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
 
Rumeke
CH.com Veteran
***
Offline




Posts: 173
Westfield, NC
Gender: female
Re: 123 Days PF And I Think I know Why
Reply #1494 - Sep 11th, 2013 at 10:41am
 
I 65 and was diagnosed in 2005 by my ENT (go figure). My cycles have been every 2 years in the early spring and last about 6 weeks. My peak involves Kip 7-9 every 1-2 hrs only at night with the good possibility of one if I sleep over 45 minutes in a nap. My family Dr started me on Verapamil 240mg ER  twice a day since I had high BP, hoping he could kill 2 birds etc. My cycle stopped in a week.

In my Mar 2012 cycle I started the D3 regimen with his blessing, taking 10,000 D3 and  400mg Ultra Mag.. I was already on 2,000 fish oil. In about 2 weeks my hits were fewer and the Kips dropped to 4-6 each night, in another week, they stopped. I dropped my D3 to 5,000 but continued everything else. Dr tested my D25 levels in May and they were 43.5 ng/ml. He retested in May of this year...42.5 ng/ml.

Fast forward to a month ago when a cycle surfaced that involved only daytime hits with PF days here and there. I added 5,000 D3 when they began and saw a little improvement. They have now switched to nighttime hits only at Kip 8-9 but only 1-2 a night so I am trying not to complain! I added another D3 last night bringing my total to 15,000.

I currently take the D3 in the am, the mag and fish oil are taken am and pm, split up.  My calcium levels have always been high and I am on verapamil so I do not take the Cal citrate.  Should I be taking them all together or does it matter? When should I have my D25 retested since I have gone from 5,000 D3 to 15,000 daily?

All in all when I think of how horrid my cycles have been in the past most nights getting hit every 1-2 hrs at Kip 7-9...the D3 regimen has definitely made a difference!
Back to top
  
 
IP Logged
 
Rumeke
CH.com Veteran
***
Offline




Posts: 173
Westfield, NC
Gender: female
Re: 123 Days PF And I Think I know Why
Reply #1495 - Sep 11th, 2013 at 11:36am
 
Thanks for the response Pattik! I think I did read something about taking the D3 with the biggest meal and that's probably because it has the highest fat content (at least in my house that's dinner). Here's hoping those shadows fade away to PF days!
Back to top
  
 
IP Logged
 
metrolamar
CH.com Junior
**
Offline


This will get better


Posts: 47
Georgia
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1496 - Sep 11th, 2013 at 1:08pm
 
Hello All...
I have been taking the D3 reg for the past two weeks and Batch has been in touch with me helping (Thanks Batch!!!).  I took the D3 test after a week of loading up on the D3 and my level was 39.9,  A long way off from the 85+ that it needs to be. Therefore we know it takes time to build up to level needed to be pain free.
Yesterday was eight solid weeks of misery for me,  no sleep at all hardly due to hits every hour.  Try to work everyday,  taking Zomig (my stock is running low after eight weeks).  Life just sux during these cycles,  today I feel like I have a bowl of rice krispys in my ears...lots of crackling and popping.  My left eye is swollen quite a bit today (had never really noticed the swelling of the eye before).  Hoping for pain free time soon for me and everybody!!!!
Back to top
« Last Edit: Sep 11th, 2013 at 1:09pm by metrolamar »  
 
IP Logged
 
Rumeke
CH.com Veteran
***
Offline




Posts: 173
Westfield, NC
Gender: female
Re: 123 Days PF And I Think I know Why
Reply #1497 - Sep 11th, 2013 at 2:33pm
 
Sorry to hear about your hits. I too went through the high kip every hour for weeks on end. There is just nothing left the next day...I don't know how you work! It got so after number 3 or 4 I would just stay up. Not worth risking another hit.

Praying the D3 kicks in soon and you get some relief!
Back to top
  
 
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 #1498 - Sep 14th, 2013 at 7:19pm
 
metrolamar wrote on Sep 11th, 2013 at 1:08pm:
Hello All...
I have been taking the D3 reg for the past two weeks and Batch has been in touch with me helping (Thanks Batch!!!).  I took the D3 test after a week of loading up on the D3 and my level was 39.9,  A long way off from the 85+ that it needs to be. Therefore we know it takes time to build up to level needed to be pain free.
Yesterday was eight solid weeks of misery for me,  no sleep at all hardly due to hits every hour.  Try to work everyday,  taking Zomig (my stock is running low after eight weeks).  Life just sux during these cycles,  today I feel like I have a bowl of rice krispys in my ears...lots of crackling and popping.  My left eye is swollen quite a bit today (had never really noticed the swelling of the eye before).  Hoping for pain free time soon for me and everybody!!!!


Stick with it!  This regimen plus the Cluster Buster method has been a godsend.
Back to top
  
 
IP Logged
 
metrolamar
CH.com Junior
**
Offline


This will get better


Posts: 47
Georgia
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #1499 - Sep 14th, 2013 at 8:00pm
 
Thanks for the kind words guys...
This cycle seems endless but I have been down this road enough times that I know it will stop one of these days or weeks. Normally Saturday and Sunday are days that I suffer through without any meds (just O2).  But today I had to go into Atlanta for continuing education for work.  Zomig nasal spray for breakfast and then eight hours of class.  I really did not want to go class today but I survived and made it back home.  Just really tired after barely sleeping due to 6 hits through the night.  These headaches will not let me sleep.
Again thanks to all and Pain free wishes for all my Cluster Family.
Back to top
  
 
IP Logged
 
Pages: 1 ... 58 59 60 61 62 ... 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!