Two Year Anniversary - Neurostimulator Implant for Headaches

[staypoz]

Next week marks the two year anniversary of having a neurostimulator implanted to help with my post-surgery headaches.  I began to have debilitating headaches a couple of weeks following my surgery and after several years of trying all kinds of treatments, finally had a stimulator implanted.     As I have posted before, it has changed my life.  As the headaches continue to diminish in intensity and frequency, I find that I am able to keep my stimulator on at a fairly low level.  I increase the stimulation as needed. 

I share this to encourage anyone suffering from post-treatment headaches to continue searching for the "something" that will help you with your head pain.  For me, it was this little implant.  For others, it might be something else. 

staypoz

[Donna1317]

Wow! Did you have translab surgery? I had it one month ago today and was wondering when I could expect headaches to stop? I have been plagued with migraines for 35 years, so I'm no stranger to headaches! Thanks for any feedback.

[staypoz]

Hi, Donna1317.  I'm sorry you are having head pain.  I had retrosigmoid, or sub-occipital.  Everyone's experience is different, so it's hard to know who is going to get the headaches, when they are going to get them,  and when they are going to go away.   From what I've observed from my own experience and the experience of others, is that they seem to resolve suddenly or gradually diminish over time. 

staypoz

[Janet]

Hi Staypoz,

It is nice to hear from you and wonderful to hear that your neurostimulator has help you so much.  A round of applause to those who have dedicated time to finding relief for those suffering from pain.

Your Seattle Friend,
Janet

[Peggy Sue]

Staypoz ~

Wow, you've given me hope!

I'm sooo sick of people calling what's going on with me 'headaches' and I hate the fact that now the doc I'm seeing is sure its migraines. Ugh. I have two separate and distinct types of pain - intra-cranial pressure pain and occipital nerve pain. I just went through a DHE drug protocol (torturous) but it has helped the pressure pain a lot. Too bad its only temporary then I'll have to go through it again.    This week is my 1st post DHE appointment and I'm going to make him address the occipital nerve pain.

Right now I'm going to try and research 'neurostimulator' so I can go to the appointment with some knowledge and maybe an alternative to the DHE and maybe help with the occipital...

Peggy Sue

[staypoz]

Peggy Sue, I'm glad you at least found some temporary relief.  Keep searching for the treatment that will work for you. 

If you go to my pain doctor's website, (http://dcpaindoc.com/) you can see an interview he did with me and also learn more about neurostimulators.  Medtronic and St. Jude are two of the big manufacturers of the devices. If you google them, you'll find a lot of info about the devices.  A Dr. Peter J. Goadsby at UCSF has published some articles on use of neurostimulators for head pain.  You can google him to read some of his findings.   

Good luck!
Staypoz

[Peggy Sue]

Staypoz ~

Funny you should mention Dr. Goadsby @ UCSF - he's my doc (the one who wants to treat me as though the pain is migraine), the one who did the DHE protocol and who I have a follow-up with tomorrow. I have neurostimulators on my list of things to talk to him about. I didn't know he'd written papers on them so I'll definitely check them out so I can go in as educated as possible.

After reading your post the other day I've done tons of research on the neurostimulators but will check out the link you provided for sure.

Thank you again for the info. I appreciate it more than you know!!!
Peggy Sue

[staypoz]

Peggy Sue, good luck with your appointment.  How interesting that Dr. Goadsby is your doctor!

Staypoz