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





Page Index Toggle Pages: 1
Send Topic Print
It's been a long time since I've been here (Read 2425 times)
dtruett
CH.com Junior
**
Offline


Maybe this is the last
one!


Posts: 76
San Diego, CA
Gender: male
It's been a long time since I've been here
Dec 2nd, 2017 at 1:59pm
 
I used to post here regularly years ago. I'm sure many of my old friends and not-such good friends, such as Jonny aren't here anymore.
I was lucky enough to have a 5, yes, 5 year remission. So, I just stayed away, thinking that hanging out here might be a jinx  Shocked of sorts. That remission ended, much to my deep disappointment. Then another year and a half cluster headaches-free. Now, I'm back in a cycle I can't seem to break out of. D3, oxygen, Verapamil, steroid taper. Nada, zip. Multiple hits a day.

Anyway, I'm not posting for sympathy. I just wanted to say "Hi" and see if any of my old friends are still around. Hanging in there by my fingernails.
Back to top
  
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: It's been a long time since I've been here
Reply #1 - Dec 2nd, 2017 at 3:30pm
 
Hi and welcome back, sorry that it was the result of the end of a long remission.

For D3, check that you're following the latest version for which you can find at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Batch has kept updating this as he has got feedback from people as to what works / doesn't and it might have the info you need.

With O2, have you got the non-rebreather mask and a high flow rate? Higher flow rates have made a difference for some. And do you hyperventilate when on it? That can boost effectiveness too.

Got sumatriptan (Imitrex) injections / nasal spray?

What dose of verapamil did you try? One of 360-480mg a day is effective for many, but some go to around 1000mg/day.

Tell us more and we might be able to make a difference.
Back to top
  
 
IP Logged
 
dtruett
CH.com Junior
**
Offline


Maybe this is the last
one!


Posts: 76
San Diego, CA
Gender: male
Re: It's been a long time since I've been here
Reply #2 - Dec 2nd, 2017 at 6:36pm
 
I'm up to date on D3, as Batch e-mailed me his newest protocol. Got the right mask, although I'm working off E tanks right now, so limited to 12-15 lpm. Still have to investigate welder's O2 with appropriate attachments. Not sure about hyperventilating: how and when. Sumitiriptan. Check. Currently on 280mg Verapamil. And, I have a GammaCore on order.

Thanks for checking with me, Mike. Much appreciated.
Back to top
  
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: It's been a long time since I've been here
Reply #3 - Dec 2nd, 2017 at 11:10pm
 
280mg of verapamil is fairly low, so lots of potential to go higher, but that also depends on your medical history, but worth asking your doctor about it.

Batch has posted instructions on using a plastic trash bag to make a huge reservoir, which can mean you can get higher than 12-15lpm. Plus, depending on the tank design, you may be able to get a regulator that goes higher.

For hyperventilating, read:
  • 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


Some people here have had success with the GammaCore device, hope it works for you.
Back to top
  
 
IP Logged
 
jon019
CH.com Alumnus
***
Offline


"Ya gotta believe!"


Posts: 1656
USA
Gender: male
Re: It's been a long time since I've been here
Reply #4 - Dec 2nd, 2017 at 11:13pm
 
YO "d"...we don't forget FAMILY...door's open...WIDE!....Merry Christmas to you and yours.....

Best

Jon
Back to top
  

The LARGE print giveth....and the small print taketh away.    Tom Waits
 
IP Logged
 
Callico
CH.com Hall of Famer
*****
Offline


Author of "Stranded at
Romson's Lodge


Posts: 4916
Aurora IL
Gender: male
Re: It's been a long time since I've been here
Reply #5 - Dec 4th, 2017 at 1:51pm
 
Welcome back. Wish you weren't here.

Jerry
Back to top
  

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
Jerry Callison  
IP Logged
 
dtruett
CH.com Junior
**
Offline


Maybe this is the last
one!


Posts: 76
San Diego, CA
Gender: male
Re: It's been a long time since I've been here
Reply #6 - Dec 4th, 2017 at 2:01pm
 
LOL! Me too!  Cry
Back to top
  
 
IP Logged
 
dtruett
CH.com Junior
**
Offline


Maybe this is the last
one!


Posts: 76
San Diego, CA
Gender: male
Re: It's been a long time since I've been here
Reply #7 - Dec 9th, 2017 at 2:57pm
 
I've been headache-free now for a little over a week. Don't know if it's the D3, the Verapamil, or, more likely, the Botox taking effect while I've been on a steroid taper (this has worked in the past).
Just grateful for a full night's sleep!
Back to top
  
 
IP Logged
 
Page Index Toggle Pages: 1
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!