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
Verapamil, Topiramate, Lithium, Oxygen ... (Read 2781 times)
GeekMarine72
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 1
Verapamil, Topiramate, Lithium, Oxygen ...
Feb 1st, 2018 at 2:29pm
 
Hello! 

New to forums.  I wanted to post my experience as I just need to get this out of my head. 

Started suffering cluster headaches in November of 2015. Diagnosed as CH in April 2016.  Pattern is to have brief pain free periods with accelerating occurrences stating with one a month ramping to 2-3 a per day. Cyclical duration is about 3 months.  Pain free period often 10 to 14 days.  Headaches tend to take two forms ... 60 to 90 minute CHs with 9-10 scale "spikes" with a 1 second period between and 5 to 7 hour CHs with 6-7 "spikes" on a 1 minute period.

I've tried diet modification, high volume 02 with little success. 

Verapamil

Nearly immediately effective at reducing frequency.  First two weeks include significant reduction in intellectual capacity. Restriction of heart rate peak to 110 bpm results in loss of energy and ability to exercise effectively.  Some ED effects mostly tied to hear rate limitations.  Heart rate impact remains during usage. 6 weeks of usage of 240MG/day eventually proves ineffective with a return of headaches Scaling up to 340MG/day reintroduces mental impact, but again eliminates CHs.  Significant weight gain during period (calcium channel blockers reduce ability to convert fat to energy, compounded by lack of exercise efficacy).  3-4 weeks after increase in dosage, CHs return.

Topiramate

Added to 340mg of Verapamil after CHs return.  Topiramate caused significant impairment (loss of ~80% or more of mental clarity).  Load of topirimate and verapamil effectively for only 2-3 weeks before CHs return.

Lithium

Refusing to suffer the side effects of the verapamil and topirimate load, switched to 75mg lithium carbonate daily.  This resulted in a positive response for mental clarity, reduction in ED impact, and return of heart rate increases for exercise.  Resulted in a loss of appetite and overall motivation / passion.  Marginally effective in CH reduction mostly in the form of a reduction in pain for CHs to pain spikes in the 4-5 range.  That said, duration of CHs averages 6 to 7 hours with latent pain in the 2-3 range and spikes in the 5-6 ranges.  Periodic late night CHs have shifted to being shorter in duration (2-3 minute periods of 7-8 pain spikes on a 2-3 per second rate). 

Doctor wants to increase Lithium Dosage from 75 to 150 mg per day.  I am favoring shifting to D3 + Omega 3.

During severe periods, imitrex oral and imitrex injectable are used with about 80% effectiveness. 

I measure pain free in hours any more.  I've reached the point where I feel the urge to slam the side of my head into a brick wall until I loose consciousness. 

Am frustrated, tied, and feel no hope in the rest of my life being anything other than this.

Am planning to stop the lithium, add the D3 and Omega 3 recommended elsewhere, and possibly acquire spores for cultivation if I can't get into one of possible programs.

Am in Portland, Oregon.  Former USMC, father, computer geek, and CH sufferer
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: Verapamil, Topiramate, Lithium, Oxygen ...
Reply #1 - Feb 1st, 2018 at 5:00pm
 
Welcome to ClusterVille, a place we CH'ers can comfortably visit 24/7 for education, to rant, seek advice, etc.

Without a doubt, this fabulous website is the undisputed champ of the world when it comes to anything and everything Cluster Headaches.

Look forward to reading about your progress, etc. And thank you for your service to our great country.

-Gregg
Back to top
  

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
IP Logged
 
Peter510
CH.com Alumnus
***
Offline


Don't give out... But
don't give in.


Posts: 966
Wexford. Ireland
Gender: male
Re: Verapamil, Topiramate, Lithium, Oxygen ...
Reply #2 - Feb 1st, 2018 at 5:37pm
 
Hi there,

An excellent post.

The full D3 information is in the link below,

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


On the top left of this page you will see a list of tabs. Open the Oxygen info tab and have a read. It is unusual for a CH sufferer not to respond to O2 as an abortive. This might give you some tips.

Come back with questions and updates. Things will improve.

Peter.
Back to top
  

You don't stop laughing because you grow old....You grow old because you stop laughing.
 
IP Logged
 
Graemel
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 105
Taupo NZ
Gender: male
Re: Verapamil, Topiramate, Lithium, Oxygen ...
Reply #3 - Feb 5th, 2018 at 6:49am
 
I hear you loud and clear. Have you tried steroids? I am currently on a course with so far limited success.
Thanks for such an informative post.
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: Verapamil, Topiramate, Lithium, Oxygen ...
Reply #4 - Feb 5th, 2018 at 3:01pm
 
Graemel wrote on Feb 5th, 2018 at 6:49am:
Have you tried steroids? I am currently on a course with so far limited success.


What steroid did you try and what was the dose schedule? What was "limited succcess"?
Back to top
  
 
IP Logged
 
Graemel
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 105
Taupo NZ
Gender: male
Re: Verapamil, Topiramate, Lithium, Oxygen ...
Reply #5 - Feb 6th, 2018 at 7:12am
 
I am on 60mg prednisone for 14 days and then to reduce over the next 2 weeks and review with doc. Currently steroid is blunting CH to a degree but not stopping them but I feel confident enough to try the steroid for a while longer.
Back to top
  
 
IP Logged
 
Graemel
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 105
Taupo NZ
Gender: male
Re: Verapamil, Topiramate, Lithium, Oxygen ...
Reply #6 - Feb 21st, 2018 at 7:08am
 
Ch still bad. I went to quack today and am going back on the verapamil. I now have Imrex and cafergot to abort actual CH. Verapamil hopefully a preventative as before. If this does not work the next step will be to see a specialist.
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: Verapamil, Topiramate, Lithium, Oxygen ...
Reply #7 - Feb 22nd, 2018 at 12:25am
 
Given that you don't generally get to see a specialist overnight, I'd kick off getting an appointment organised in case things don't improve. You can always cancel it if it no longer needed, but at least you'll be seeing one sooner than if you wait.
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!