Hello Everyone

I am new to NeuroTalk. I have had occipital neuralgia for 4 years.
I have just been put on Neurontin. I took it several years ago but was unable to take more than 300mg per day due to side effects. Has anyone here who has occipital neuralgia been helped with Neurontin (gaba-pentin)? Also, does anyone know if 300mg per day would still be effective for nerve pain if I cannot get to the 900mg per day as the docs have suggested?

Does anyone here have any tips for medications or help with occipital neuralgia? I am on a LONG wait list for radiographic neurectomy of C2-C3. The two diagnostic anaesthetic injections I had at C2-C3 completely alleviated my pain 100% for a few hours so I am hopeful that the burning of the nerve will be effective. I am on a long wait list for that procedure and my pain has become intolerable over the last few weeks. If anyone has tried anything that is helpful for this condition please let me know. I would appreciate any input. I take Oxy long acting 10mg 2-3 times/day, but it is not that helpful when the pain gets this severe.
Thank you and nice to meet you all.
Julie

I get my nerves burned in my L3-L5 area. They do help for up to 6 months at a time. I am not sure how they do in the cervical area.
I would talk to your doc about that.

Hi thanks for your reply
I am on a long wait list to have my nerve burned in C2-C3. They create three lesions at C2-C3 and burn the junction of the occipital nerve.
What percentage did the burning alleviate your pain?
Too bad it only lasted 6 months for you--I was told it can last up to 3 years but I kind of doubted if it would last that long.
I am taking Neurontin now while I wait for the procedure.
Thanks
Julie

I know nothing about occipital neuralgia, can you explain the extent of the pain and where the pain is realized. Is there a known cause?

My C2-C3 is compressed and it has pinched off the greater occipital nerve that junctions at C2-C3. The occipital nerve runs from the base of the skull to the top of the head and terminates at the top of the head--right side.
The pain is localised to about a twoonie size area (for me anyway) in that area and feels like a screwdriver is stuck in the top of the head. Imagine pulling your hair as tight as you can that's sort of what it feels like. It can wrap around under the right eye (they call that a ram's horn). The pain can be aggravated by brushing your hair, wind, etc. The surface of the scalp is super sensitive. They use nerve medications, nerve blocks and burning of the nerve to treat the condition.
It's the worst pain I have ever had, that's for sure!...
hope that gives you some info..
What condition do you have, may I ask?
Julie

Julie,

I suffered from what the docs originally diagnosed as occipital neuralgia and then shortly thereafter was diagnosed with cervicogenic headaches (coming from the neck) AND Variant Migraines. To make a long story short (this stuff went on every day for 3 years), a fusion of the C3/C4 took care of that since that level was the pain generator. I did, however, recently have facet injections at the C2/C3 in November. They are still working.

I am familiar with RF's though; had one done in my lumbar and it DID give me a year's worth of relief. I think I am heading for another one and I wouldn't hesitate one bit! However, I am unsure about the cervical spine and/or the higher levels. I do know of some people that had great relief...I just haven't had it done in the cervical spine.

One thing about all of it though...you are right. It is the worst pain I have ever had in my life! I try to tell people it was a 10 but they find that hard to believe. It seems no one can believe that the pain could be that bad. But trust me, it was! I asked my spinal PM once at what pain level are his patients when they come in with this problem. He told me that by the time they reach him for treatment, they are at a 9+! So, I wasn't too far off!

I hope the Neurontin helps and you can hang in there before you have the procedure. Good luck to you and I wish you well. This is very hard to deal with...I know.

Ummm I would have to say it at first it alleviated the pain at about 80%. Enough for me to function and sleep without thinking about the pain.
Unfortunately I think it is failing. I have had it done 3 times now and this last time isn't lasting as long as the other 2 had. I don't know what exactly was different, but the sciatica is back a little. I think I need another MRI to see what is going on there.