Occipital Nerve Stimulation - Implant?

JanetChristine

Regular Member

Joined : May 2006

Posts : 26

Posted 5/22/2006 8:40 PM (GMT -7)

Hey everyone.... I am wondering if anyone has information or has participated in the clinical trials for the occipital nerve stimulator. It's a neurostimulator that delivers electrical impulses through lead wires implanted under the skin near the occipital nerves at the base of the head. According to the website the trials are only available in Arizona, California, Colorado, Michigan, Oklahoma, Pennsylvania and the United Kingdom at this time. I am in Minnesota so I was just interested if any of you all out there have any info on this. I am kind of at a dead end with my migraines... Been through virtually all the meds I can take, home remedies, you name it I've tried it! I have a neuro appt this Wednesday to "brainstorm" -- probably end up with the Fentanyl suckers, Ambien, and Phenergan. I have been getting the Fentanyl and Phenergan IV but I have tiny veins to start with and now there are just none of them left!!! Any suggestions would be greatly appreciated!!!! Thanks for your time! Janet

mrs mac

Regular Member

Joined : Nov 2005

Posts : 163

Posted 5/23/2006 3:03 PM (GMT -7)

hi janet

over in the uk i know a couple of people who have had this done for cluster Headaches!!

one got pretty good results, the other unfortunately didn't!!

i also know of one more person who is waiting to hear if she will get funding to have it done

i think that if you are one of the lucky ones it works for, it can maker a huge difference to your pain levels with your headaches!!

i will try and find some information for you and post it as soon as i get it

tc
sandra xxx

mrs mac

Regular Member

Joined : Nov 2005

Posts : 163

Posted 5/23/2006 3:13 PM (GMT -7)

hi janet have a look at this i know it says it's for clusters, but will help migraines too

http://www.ouch-us.org/chgeneral/surgery/surgery2.htm
http://www.thedailyheadache.com/nerve_stimulation/index.html

hope these help

sandra xxx

JanetChristine

Regular Member

Joined : May 2006

Posts : 26

Posted 5/23/2006 4:28 PM (GMT -7)

Thank you so much I am going to look at it now! My neuro appt that was supposed to be tomorrow now isn't until June 5th AND they switched docs on me too! AHHHHH!!! But that's what happens at Mayo! So many docs they just don't seem to care which one they send you to as long as it says NEURO!!! I am going to try to get back with the original doc since he was the one I was specifically reffered to and he is the chairperson of the department of neurology so I would much rather see the head honcho that has been published numerous times rather than someone who may not know what to do..... Oh well....... Enough venting for tonight!!! Thanks again for the info!!! Have a great night! --janet

mrs mac

Regular Member

Joined : Nov 2005

Posts : 163

Posted 5/24/2006 2:27 PM (GMT -7)

hope you found it of use janet

tc
sandra xxx

JanetChristine

Regular Member

Joined : May 2006

Posts : 26

Posted 5/27/2006 7:22 PM (GMT -7)

Thank you so much for the websites....I found them very helpful and insightful. I am going to the neurologist on June 5th. The neuro I have been seeing is meeting with the new one to discuss my case and let him know all the stuff I have tried and where we are at right now. Luckily she wrote orders for 2 "infusions" between now and then so I won't -- hopefully -- have to go back to the ER again. I had to use one last night for a migraine and boy does my wrist hurt today!!!! That's where they got the IV in -- pretty much one of the last "good" veins I have got! So hopefully the new doc will write for the fentanyl suckers so I don't have to get the IVs anymore. The only other option that I have been given is to put in a permanent line for the IV fentanyl - phenergan cocktail they give me now. Anyway I hope you all are doing well out there and thanks again mrs mac for the info!

--janet

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