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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Neurostimulation Therapy for Chronic CH
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Message started by John B on Oct 6th, 2009 at 12:47pm

Title: Neurostimulation Therapy for Chronic CH
Post by John B on Oct 6th, 2009 at 12:47pm
My doc sent me to a pain management center (20 years chronic CH) where they recommended Medtronic neurostimulation therapy using implanted electrode and device to interfere with the pain signal.  The equipment manufacturer maintains a website at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE Does anyone have any experience with this treatment?  Any thoughts?
John B

Title: Re: Neurostimulation Therapy for Chronic CH
Post by vietvet2tours on Oct 6th, 2009 at 1:12pm
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Firefox can't find the server at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE. .

      

      
      
      

      
       
       

         


Title: Re: Neurostimulation Therapy for Chronic CH
Post by Brew on Oct 6th, 2009 at 1:35pm
Remove everything after the .com

(the dot, the space, and the forward slash)

Title: Re: Neurostimulation Therapy for Chronic CH
Post by Callico on Oct 6th, 2009 at 5:59pm
B4 going to that extreme have you tried high flow Oxygen? 

Not being critical, just don't know.  I don't know the company, but NOBODY cuts on me or puts things in me until there is no other option. 

Jerry

Title: Re: Neurostimulation Therapy for Chronic CH
Post by Marc on Oct 6th, 2009 at 6:44pm
Medtronics is a well known company in the high tech pacemaker business.

Title: Re: Neurostimulation Therapy for Chronic CH
Post by John B on Oct 6th, 2009 at 6:56pm
Yeah, I do use oxygen and it helps a lot most of the time.  With 20+ years of chronic ch, you can bet your butt that I've tried everything.  This is the first thing short of a rhizotomy that seems to have some potential to help.  I'm not keen to go under the knife either, but ch/depression is making my life more difficult. 

Title: Re: Neurostimulation Therapy for Chronic CH
Post by Marc on Oct 6th, 2009 at 7:43pm
John,

I understand your 20 year history, but I'd like to hear what meds, at what doses you've tried that didn't work. Very, very few docs know everything out there.

For instance, what kind of O2 mask and regulator flow rate do you use? High high were your Verapamil doses? Stuff like that has changed in the last few years.

The stimulator may be the best course of action, but I'm really curious about the other.

Marc

Title: Re: Neurostimulation Therapy for Chronic CH
Post by John B on Oct 7th, 2009 at 12:47pm
I use a pillow mask similar to the one sold by the CH.com store.  I get them from headachemasters.com (Denmark).  I use 15 L/M and that allows me to hyperventilate with 100% oxygen.  It works if I catch it in time, but sometimes the ones that wake me up at night are too far gone to catch with oxygen.  I've used so much ergot over the years that the doc's say I've exceeded my lifetime maximum.  I have a lot of blood in my urine, heart valve damage, etc.  I still use DHE-45 when necessary.

I'm not comfortable giving a complete history over the Internet, but I have used very, very high doses of everything listed on the meds pages here.  Currently taking 480 of verapamil (240mg bid).   Many things have helped, but lose effectiveness over time.  Some I simply could not tolerate and still function (stupi-max, for example; my name for Topamax, which causes severe short-term memory loss for me).  Thanks for your interest; I'm really looking for any feedback from someone who has used the procedure. 

John B

Title: Re: Neurostimulation Therapy for Chronic CH
Post by Marc on Oct 7th, 2009 at 4:38pm
Good info, John. Sounds like you have indeed tried the normal stuff, including a good mask!

Have you read up on the potential use of a botanical approach using RC seeds?  (Rivea Corymbosa aka. Ololiuqui)  You can find a lot of first hand experience on that subject right here.

Hopefully someone with direct experience with stimulator will chime in.

Marc

Title: Re: Neurostimulation Therapy for Chronic CH
Post by John B on Oct 8th, 2009 at 11:13am
Thank you, Marc.  I did run across the seeds, and will check them out on erowid and clusterheads, etc.  I've thought about flying to Amsterdam . . .

Title: Re: Neurostimulation Therapy for Chronic CH
Post by Marc on Oct 8th, 2009 at 11:28am
The beauty of RC seeds is the legality of buying them - they grow flowers too.

I've had variable success with them, but other chronics have reported very, very good results.

Marc

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