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





Pages: 1 2 3 4 
Send Topic Print
The CH cure? (Read 19843 times)
Potter
CH.com Alumnus
***
Offline


Team MOOSE DROOL Stinky
Stuff on a Hook Prostaff


Posts: 3600
Blgs.Mt.
Gender: male
Re: The CH cure?
Reply #75 - Nov 5th, 2009 at 7:00pm
 
Niels wrote on Nov 5th, 2009 at 6:48pm:
Quote:
You have already lost all credibility with your assertive, defensive comments in which you portray yourself as a doctor or pharmacist.  It could be confusing to some people as they may be unaware of your false statements.  I would have thought by now, you could recognize the negative feedback coming your way
Roll Eyes
  You simply can’t understand the subject in this thread.   Smiley


          I'm guessin we're plumb ignorant. 

             Potter
Back to top
  
 
IP Logged
 
thebbz
Ex Member



Re: The CH cure?
Reply #76 - Nov 5th, 2009 at 7:05pm
 
Smiley Smiley Smiley Smiley
Yep, D3, good for me. Got it.
the bb
Back to top
  
 
IP Logged
 
Joni
CH.com Old Timer
****
Offline


Knowledge is Power


Posts: 476
Gender: female
Re: The CH cure?
Reply #77 - Nov 5th, 2009 at 7:10pm
 
Potter wrote on Nov 5th, 2009 at 7:00pm:
Niels wrote on Nov 5th, 2009 at 6:48pm:
Quote:
You have already lost all credibility with your assertive, defensive comments in which you portray yourself as a doctor or pharmacist.  It could be confusing to some people as they may be unaware of your false statements.  I would have thought by now, you could recognize the negative feedback coming your way
Roll Eyes
  You simply can’t understand the subject in this thread.   Smiley


          I'm guessin we're plumb ignorant. 

             Potter



Haha!  Oh, Neils...consider for a moment with whom you may be communicating.  I understand more than you will ever know!  The above quote was for you, but my main intent was to warn others of your posts and that has been accomplished.  My work here is done.
Back to top
  

Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
IP Logged
 
Niels
Ex Member
*


I Love CH.com!


Re: The CH cure?
Reply #78 - Nov 5th, 2009 at 7:25pm
 
Quote:
Haha!  Oh, Neils...consider for a moment with whom you may be communicating.  I understand more than you will ever know!  The above quote was for you, but my main intent was to warn others of your posts and that has been accomplished.  My work here is done.


Are you trying to say that CH suffers shouldn't take Vitamin D3? Please tell me why.

Back to top
  
 
IP Logged
 
Skyhawk5
CH.com Alumnus
***
Offline


I love YaBB 1G - SP1!


Posts: 1320
Ypsilanti, Mi. USA
Gender: male
Re: The CH cure?
Reply #79 - Nov 5th, 2009 at 7:58pm
 
on: Jul 31st, 2009 at 5:42pm 
Started by Niels | Post by Niels       

Hi

I just want to share my experience after taking vitamin-D supplement for 5 months. I started with 35 ug (1400 IU) pr. day and increased the amount to 100 ug (4200 IU) 1 month ago. My chronic pain in my neck has gone, some eczema in my right ear has gone, my energy has increased and the most important is that I didn’t get the period of CH I normally have in April/May. 

Regards Niels 

We have people here that have had remissions lasting 3, 5, 10 and more years only to have CH return. 8 months in no way means you are cured.

Cycles change more often than you may think. So if you believe you have found a cure, you have some time to go to verify that. If what you say is true it will become a known practice here in due time.

Trying to shove something down our throats and talking down to us will not help your's or our cause.

Maybe you're cured maybe not, only time will answer that. A lot of time.

Good luck, Don
Back to top
  

Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
Skyhawk5655  
IP Logged
 
Skyhawk5
CH.com Alumnus
***
Offline


I love YaBB 1G - SP1!


Posts: 1320
Ypsilanti, Mi. USA
Gender: male
Re: The CH cure?
Reply #80 - Nov 5th, 2009 at 8:01pm
 
Guess I was too late, he went ex-member. Disagreement is no reason to quit is it?
Back to top
  

Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
Skyhawk5655  
IP Logged
 
-johnny-
CH.com Sponsor
***
Offline


theres no smoking on the
dock


Posts: 1642
fayette county ohio
Gender: male
Re: The CH cure?
Reply #81 - Nov 6th, 2009 at 1:07am
 
Skyhawk5 wrote on Nov 5th, 2009 at 8:01pm:
Guess I was too late, he went ex-member. Disagreement is no reason to quit is it?


no it isn't. all of us are different. gotta watch that "c" word
Back to top
  

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
 
IP Logged
 
Joni
CH.com Old Timer
****
Offline


Knowledge is Power


Posts: 476
Gender: female
Re: The CH cure?
Reply #82 - Nov 6th, 2009 at 10:31am
 
I could have been more diplomatic.  I also could have just quit reading his posts.
Back to top
  

Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
IP Logged
 
Skyhawk5
CH.com Alumnus
***
Offline


I love YaBB 1G - SP1!


Posts: 1320
Ypsilanti, Mi. USA
Gender: male
Re: The CH cure?
Reply #83 - Nov 6th, 2009 at 11:16pm
 
I just don't understand why he didn't just make his point and then join with the group to discuss before he took the D-vitamin.

When I read his 1st post I noticed a lack of describing his CH. That is what made me point out a few things.

And before I posted it he went ex. I got the impression he was selling something. Just me maybe.

Don
Back to top
  

Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
Skyhawk5655  
IP Logged
 
D3
Ex Member
*


I Love CH.com!


Re: The CH cure?
Reply #84 - Nov 10th, 2009 at 7:12pm
 
Quote:
I got the impression he was selling something


I have someof D3 vitamins for sale. Just mail me.  Cool
Back to top
  
 
IP Logged
 
Zeitgeist
CH.com Alumnus
***
Offline


Clustery szcmustery


Posts: 91
|Norway|
Gender: male
Re: The CH cure?
Reply #85 - Dec 21st, 2011 at 2:20pm
 
This thread was depressingly disturbing.
Back to top
  

-zg
 
IP Logged
 
nhs
CH.com Junior
**
Offline


I Love CH.com!


Posts: 63
Re: The CH cure?
Reply #86 - Dec 21st, 2011 at 3:27pm
 
Yes, glad that Batch took over the vitamin-D topic.  Smiley

And i learned not to use the cure word. Lips Sealed
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: The CH cure?
Reply #87 - Dec 22nd, 2011 at 5:37pm
 
Too bad Neils left the board, appeared to be incredibly intelligent and the Vitamin D pioneer.

On the bright side, Batch was a believer in Neils Vitamin D theory and has helped many with this treatment.

Congrats to both Niels and Batch for sticking with this theory that other members shunned. Smiley
Back to top
  

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


I Love CH.com!


Posts: 63
Re: The CH cure?
Reply #88 - Dec 22nd, 2011 at 6:08pm
 
Quote:
Too bad Neils left the board, appeared to be incredibly intelligent and the Vitamin D pioneer


Im still around.  Smiley
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: The CH cure?
Reply #89 - Dec 22nd, 2011 at 7:54pm
 
I'm glad. Wink

Joe
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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: The CH cure?
Reply #90 - Dec 22nd, 2011 at 10:28pm
 
nhs wrote on Dec 22nd, 2011 at 6:08pm:
Quote:
Too bad Neils left the board, appeared to be incredibly intelligent and the Vitamin D pioneer


Im still around.  Smiley


Merry Christmas Niels Wink
Back to top
  

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


I Love CH.com!


Posts: 63
Re: The CH cure?
Reply #91 - Dec 23rd, 2011 at 6:02am
 
Hi Joe and LasVegas,

Thanks, and Merry Christmas to you.  Smiley
Back to top
  
 
IP Logged
 
Chad
CH.com Hall of Famer
*****
Offline




Posts: 738
Emmaus, PA
Gender: male
Re: The CH cure?
Reply #92 - Dec 23rd, 2011 at 10:50am
 
Neils and Batch, thank you for your insight and research.  I'm on day 3 with this regimen along with a dose of rc seeds this past Monday.  I have about 3 shadows a day that is easily aborted with O2 within 5 minutes.  I even had a cocktail last to use as a beer test gauge, lol...and yes, I did get hit at 2 am (my fault), but nothing higher than a K2 which was easily aborted with O2.  I'm doing more seeds on Sat. which is the 5 day mark and the minimum suggested waiting time.  I truly believe all of these components are helping this cycle.  It's been the best yet (out of 18 years).  Thank all of you for
your help over the years.

Happy holidays to all!

Chad
Back to top
  

When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!
 
IP Logged
 
koctail
CH.com Junior
**
Offline


I Love CH.com!


Posts: 52
Re: The CH cure?
Reply #93 - Dec 29th, 2011 at 4:35pm
 
im still extremely skeptical on this D-3 regime. if it works for you (or you think it works) than that is great. i have tried every herb/vitamin combo in the past, feverfew, ginkgo biloba, b vitamins, magnesium, capsaicin, licorice root, melatonin, you name it i have tried it. u know what has worked for me? verapamill. ive tried rc seeds as well and just made things worse. so i stick with my verapamil. it works for me. its not ideal but it works.

i am episodic and in cycle now. i used to be spring/fall 2x year. i remember also having summer cycles during times when i would spend a lot of time in the sun running, swimming, and cycling. so this would make me question your theory as my d-3 levels should have been fine.

having said all that i have been on d-3 regime for 2 weeks, so far no results. i am not taking calcium due to interference with verapamil.

after reading this message board as of late i truly believe our condition is almost unique to each sufferer. what works for one person may not work for another. there are only 4 treatments that seem to be solid for most imo. 1. O2 (abortive) 2. Verapamil 3. Lithium 4. The Fungus.
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: The CH cure?
Reply #94 - Dec 29th, 2011 at 5:25pm
 
Many CH'ers have reported this works! 

It didn't work for me either, and I tried extreme dosages of D3 and followed Batch regimen perfectly. 

"To each his own."

Are you following the EXACT dosages of EACH vitamin recommended? 

Certainly can't hurt to keep at it, as it is a safe healthy and inexpensive treatment to at least give a fair trial.

It might be that your D levels are low and need to stay on the regimen long enough to properly titrate to therapeutic levels or maybe you are just like me and some others that this regimen unfortunately is non-responsive to ending a cycle. 

Have you got your D tested?
Back to top
  

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




Posts: 14163
Re: The CH cure?
Reply #95 - Dec 29th, 2011 at 5:29pm
 
Quote:
ive tried rc seeds as well and just made things worse.

From what I can gather, you've only tried them once.

Almost every person who has had success with a busting regimen will tell you that, like antibiotics, this condition needs to be hammered by busts at regular 5-7 day intervals, usually for a few months. Then the busting method takes hold and the time between busts gets stretched out - 2 weeks, 3 weeks, a month...pretty soon you're asking yourself whether or not you're going to need to maintenance dose three to six months from the last time you did because you've been pain free for so long, you almost don't want to mess with it.

Please don't discourage other newcomers by saying it made it worse when it seems you have not followed the methodology that others report works quite well.

For many of us who have had great success busting, things invariably got worse before they got better.
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
 
koctail
CH.com Junior
**
Offline


I Love CH.com!


Posts: 52
Re: The CH cure?
Reply #96 - Dec 29th, 2011 at 6:42pm
 
Brew wrote on Dec 29th, 2011 at 5:29pm:
Quote:
ive tried rc seeds as well and just made things worse.

From what I can gather, you've only tried them once.

Almost every person who has had success with a busting regimen will tell you that, like antibiotics, this condition needs to be hammered by busts at regular 5-7 day intervals, usually for a few months. Then the busting method takes hold and the time between busts gets stretched out - 2 weeks, 3 weeks, a month...pretty soon you're asking yourself whether or not you're going to need to maintenance dose three to six months from the last time you did because you've been pain free for so long, you almost don't want to mess with it.

Please don't discourage other newcomers by saying it made it worse when it seems you have not followed the methodology that others report works quite well.

For many of us who have had great success busting, things invariably got worse before they got better.


Brew...Im just imparting my experience. I did bust 3x with rc seeds, 30, 50, and 80 at last attempt. the day after i busted at 80 i had one of my worst ch days ever with 10 attacks. the first bust at 30 seeds i was still on 180mg of verapamil so had not fully detoxed. busts at 50 and 80 were totally detoxed for 7 days and i waited 5 days inbetween busts. im back on my verapamil and feeling better. i know many have had success with rc seeds and i would advise anyone to give it a try. if i had some relief from the seeds i would have stuck with it, but things were getting worse. i cant continue with 10 attacks per day for months hoping the seeds work. i have a job, kids and need to go on with my life. i am planning on trying the fungus in the future in hopes that will be better. i know some have not had success with rc seeds but have with fungus.
Back to top
  
 
IP Logged
 
Brew
CH.com Sponsor
CH.com Alumnus
***
Offline




Posts: 14163
Re: The CH cure?
Reply #97 - Dec 29th, 2011 at 7:17pm
 
Thank you for clarifying. I certainly don't want any new visitor to discount the notion because of one person's experience.

Best of luck to you in your future attempts.
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
 
PlayDoh
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 116
Re: The CH cure?
Reply #98 - Dec 30th, 2011 at 4:09am
 
Brew wrote on Dec 29th, 2011 at 7:17pm:
Thank you for clarifying. I certainly don't want any new visitor to discount the notion because of one person's experience.


I've seen this said more times then I can count. People trying to protect 'new visitors' from false information. I really don't see the merit in such arguments. No offense.

Whether your new to the board or not, I think it can be assumed that people can make their own decisions. I don't think any rational person would base their opinion solely on the expression of another persons opinion.

I've has success with Mushrooms, yet the last bust attempt back-fired and I got hammered with hits. That's just a fact, and I don't feel I should suppress or avoid sharing it, cause someone might base their decision on it entirely. Nor do I feel it necessary to fully disclaim any negative result or opinion.

I cant help but see the "dark-side" of this and all Forums for that matter, in this thread. People seem to have a need to argue with others who believe something they do not. They use arguments like "I don't want newbies to learn something wrong" as a guise to try and humiliate someone (Not referring to Brew here, truly).

I think its safe to say that there's more to Vitamin D and Batch's regime then coincidence. Its also safe to say its not a "Cure", yet there is credible efficacy in it as a treatment.

Since No one, not a high paid neurologist or a laymen, can tell you how, why or when it works, I don't see any point in arguing.

Debate is essential, but arguments are detrimental
.

Implying that someone has a secret dark motive, or has no credibility cause they defend their opinion is foolish IMO.

Thank you NHS for sharing your thoughts and opinions. Regardless if you've chosen the wrong "Title" or unfair wording, your point is valid, and I'm sorry you've been insulted for sharing it. Quite unfair.

I love the fact that non-medically educated people have helped each other to discover, and researched on their own, to find a very effective treatment. I think a lot of Dr's have been conditioned in a way that makes it hard for them to "think outside the box".

The three most effective and safe treatments I've tried for CH are Oxygen, Mushrooms and now Vitamins. My Dr gave me Imitrex which I'm sure isn't far from crack-cocaine as far as my 'body' was concerned, and suggested more similar nasty potentially harmful drugs.

All in good faith, and I'm grateful for the chance to have those options. Yet I don't think in a million years she would have thought of Vitamin D, although its not fair to compare that way. Her profession is treatment, not research.

Anyway, I'm rambling, but the point is we should all respect others opinions and ideas. Not only could they be very valuable and correct, regardless of what you believe, but because its only fair. People seem to think they don't have to be respectful of others on the internet all the time, all over the place, yet it doesn't make it any less wrong.

I think when you try to make someone else look foolish, all you accomplish is making yourself look so.

BTW, I just bought $100 worth of D3, in part cause it was 40% off, and cause I've seriously considered if I might have found a long term treatment (cure) for my CH.  Wink 
Back to top
  

As strong and tough as CH's are, I AM STRONGER!
 
IP Logged
 
Pages: 1 2 3 4 
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!