on

[eddiesmom]

I have had ON for about 10 yr, just woke up with pain one day and has never gone away.  I finally saw a neuralogist after about 6 mnths and he diagnosed me in about 10 minutes and was confirmed through the nerve blocks later that day.  I have had multiple rounds of shots, radiofrequency, all kinds of pills & a spinal stimulator implanted (later removed after infection developed when a wire worked its way back through my neck).  I am a single mother and will take any advise for pain control.  Now I take a daily low dose of vicodin (same dose for about 8 years) & lots of ibuprofen.  I have tried many medications over the years and have not had any real success (including very high doses of neurontin), anything new?  Any combinations found to be helpful?  The stimulator helped a great deal but after the infection my pain specialist gave up on me. I would greatly appreciate any suggestions.  Also how do you find a dr. that knows the condition?  So many respond with 'oh, you have headaches'.. I know right away they don't know, because anyone with knowledge knows it is SO much more than 'just a headache'. I greatly appreciate your time and thoughts.. all I want is to be a good mom and this makes it a real challenge at times.  Thank you.

[Tuckamore]

Hello Eddiesmom,

Welcome to our pain management community at MedHelp. I am sorry you have had to suffer with 10 years of pain. Many of us can relate.

I must admit that I do not possess personal knowledge of pain and treatment of occipital neuralgia. If I understand it correctly it can be a vicious cycle of pain and spasms that originate in the sub-occipital area of the skull.

I agree with Jeric's suggestion regarding a implantation of the stimulator. If your current physician/neuro is not willing to do so or at the very least he offers no alternatives it is time to look elsewhere. I cannot find any current research on ON but that does not mean than there has not been advancement in treatments of nerve pain. Lyrica is being used for some patients with nerve pain with much success.

In my opinion some times we get too comfortable with our long term medical care providers, which is wonderful to have a great relationship but some times we miss the opinions that other practitioners that may be able to offer us. A new set of eyes often can provide new sets of options. It is certainly worth a try. I think the only way you can locate a provider with experience with this condition is to do your research. Calling clinic's to ask what they specialize in can be helpful. There are "find a physician" sites under many specialties or condition/disease processes through goggle. It is common practice that one physician within a speciality clinic will refer you to another colleague with more experience in your specific condition.  I encourage you to begin your search for another opinion.

Please let us know how you are doing. I will look forward to your updates. We are here to support you in any way we can. Take Care, Tuck

[jeric]

Also another side thought... have you ever tried Carbamazepine (Tegratol)? Thats the only med I know of for Occipital Neuraglia because I was for awhile misdiagnosed with it and they tried to treat it with the Carbamazepine... and then my neuro tried to treat it with Lamictal... but of course neither worked for me because I don't have Occipital Neuralgia.

[jeric]

By ON do you mean Occipital Nerualgia? If so are you sure it was a spinal stimulator or was it an Occipital Nerve Stimulator?

Either way the stimulator helped you. I know someone who had a ONS and it worked great (though it was for Migranes) anyways she got an infection and had it removed, treated the infection and then had it put in again... because it worked.

I would ask your doctor why you can't have the stimulator put back in.... infection is a setback not a reason to eliminate that treatment possibility. A nurse told me one day that everytime the skin is broken there is a 1 in 1,000 chance of an infection. You were just that unlucky 1.

Advocate for yourself because only you know what your feeling and the stimulator helped. Ask and find out exactly why they won't put it back in.

Good luck!