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John B

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Phoenix, AZ USA
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Neurostimulation Therapy for Chronic CH
Oct 6^th, 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 Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Does anyone have any experience with this treatment? Any thoughts?
John B

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Neurostimulation Therapy for Chronic CH Reply #1 - Oct 6^th, 2009 at 1:12pm Address Not Found Firefox can't find the server at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or . .
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Neurostimulation Therapy for Chronic CH Reply #2 - Oct 6^th, 2009 at 1:35pm Remove everything after the .com (the dot, the space, and the forward slash)
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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: Neurostimulation Therapy for Chronic CH Reply #3 - Oct 6^th, 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
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Marc Ex Member Gender:	Re: Neurostimulation Therapy for Chronic CH Reply #4 - Oct 6^th, 2009 at 6:44pm Medtronics is a well known company in the high tech pacemaker business.
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John B

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Posts: 13
Phoenix, AZ USA
Gender: male

Re: Neurostimulation Therapy for Chronic CH
Reply #5 - Oct 6^th, 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.

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Marc

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Re: Neurostimulation Therapy for Chronic CH
Reply #6 - Oct 6^th, 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

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« Last Edit: Oct 6^th, 2009 at 7:44pm by Marc »

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John B

CH.com Alumnus

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Posts: 13
Phoenix, AZ USA
Gender: male

Re: Neurostimulation Therapy for Chronic CH
Reply #7 - Oct 7^th, 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

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Marc

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Re: Neurostimulation Therapy for Chronic CH
Reply #8 - Oct 7^th, 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

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« Last Edit: Oct 7^th, 2009 at 4:59pm by Marc »

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John B CH.com Alumnus Offline Posts: 13 Phoenix, AZ USA Gender:	Re: Neurostimulation Therapy for Chronic CH Reply #9 - Oct 8^th, 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 . . .
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Marc Ex Member Gender:	Re: Neurostimulation Therapy for Chronic CH Reply #10 - Oct 8^th, 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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