I am looking for information on Occipital Nerve Stimualtors. May be getting on soon.

Tammi,

I have no personal expereince with the Occipital Nerve Stimulator (ONSTIM), but will be learning more about it later this week at the American Headache Society conference. I'll be writing about it soon after I return, so you may want to keep an eye on my SharePosts.

Interestingly enough, I called the FDA and asked some questions about this treatment a couple of weeks ago. I don't know what you know, so for now, here's some information I got from the FDA...

ONSTIM is NOT approved by the FDA for the treatment of Migraine or headache. It is still in clinical trials that must be completed and evaluated before it can be approved.

Even though it's not FDA approved, your doctor can prescribe it for Migraine or headache, just as he or she can prescribe medications off-label.

Here's an important part. Very, very few insurance companies will pay for ONSTIM at this point because it's considered "experimental." Some doctors are getting insurance companies to pay for it by fudging the diagnosis and telling them it's for another condition. Most commonly, when the doctor fudges, he or she says the patient has occipital neuralgia. You should know that it is illegal to state an incorrect diagnosis to get insurance approval. That's insurance fraud.

I'm not saying your neurologist would do this, but I do want you to be aware that some doctors do. You can always ask your doctor for a copy of the information he submits to your insurance company.

If you decide not to do ONSTIM, don't lose hope. There are now so many medications in use for headache and Migraine treatment that it's literally impossible to have tried them all. If your neurologist isn't an actual Migraine and headache specialist, and you're not making progress, you might want to consider consulting a Migraine and headache specialist.

Good luck!
Teri

Hi Tammi.  My information is somewhat different from other posts.  I too have had a chronic daily headache - over 8 years now. I top have done EVERYTHING -- and I mean EVERYTHING! Trigger point injections didnt help me, as my pain is more coming from the sides and tomoral muscle group and has "tension" qualities that give me a major headache every day, it only caries in intenisty.  Tore my life apart and am still seeking relief. Anyhow, my research and experience in July of 2008 is that most insurance companies and even medicare pay 80% of permanent occipital nerve stimulators.  It did for my trial of one just 2 weeks ago! Maybe it is situation dependent or based on things you have or havent done leading up to this? I also know that they are finding that there is not necessarily a direct connection between relief from trigger point occipital injections and the perminant occipital stimulator, but if one works I would think the other would! I am having a 2nd trial (Medtronic MyStim) fone in 2 weeks, and they are placig the leads in the temporal muscle/nerve group and I have high hopes as, well, there isnt any other treatment let for me!  I can say that the 1st trial I did gave me incredible relief in the entire occcipital region, from the bottom of my head to the top as the nerves sort of spring up the whole back of the head.  If yours is located there I would say go for it -- but check insurance first.  They wont do it if they dont think your insurance will pay as it is EXPENSIVE!!! My trial alon was about $11K, and I've heard the permaanent one can be 6-figures ... but if it works, it is a SMALL price to pay for getting your LIFE BACK,right???

So I hope my information is helpful -- I'm not sure what has happened in the last few months since your original post.  I will post my result after my 2nd trial if you would like as well. But please let me know what your experience has been since then, and give me a little background on your headache specifics, and I am happy to give you my opinion as I consider myself an expert by this point -- as Im sure you are also!!!!

It is a really unfortunate situation we find ourselves ... to have our lives slowly stripped away from us due to no fault of our own ... and so isolating, so painful and life altering, SO debilitating.  But we cant give up ... though we might think about it often.

Be Blessed and feel better,

Todd