Occipital Neuralgia---sorry, not sure where to post questions re; this condition
 

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.

nerve burning
 

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:)

occipital neuralgia
 

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! :eek:

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. :(

I was diagnosed with Occipital Neuralgia in '06, but in the Neuro's reports over the last year, he said both Occipital Neuralgia and Cervicogenic headaches at different times, and when I questioned him about the different names, he said they are more or less the same thing! No wonder I'm confused! lol Are they the same thing, or completely different?

~Jaime~

I am not sure that you guys have a solid diagnosis
 

which must make you feel a little bit nervous about your treatment...I think the goal (took me 15 years of being treated like an attention seeker which was rougher than it sounds) is to have a neurologist tell you what originally caused what disorder and you know they are right when they sucessfully predict what treatment(s) will alleviate it.

I am surprised someone would be on a long wait list for something that is causing pain bad enough to injure you - are you in the U.S.? What side effects are you getting from the gaba pentin? I was semi-conscious when they got me high enough (1000 milligrams and I met a nurse who was working on almost 3 times as much when I could not even stand up) to prevent my pain from inflaming the meninges around my brain - heck of a headache - and causing venous occlusions. Since my bad nerves that were sending out bad messages were in my neck, I was able to get some relief by treating the spasms they caused with baclofen, although I am waiting for my referral to a specialist who can tell me if rf 'resection' would help.

Luckily I have had very little constant allodynia, so I don't know enough to help you as you deserve. But others here do, so try to keep this post going until someone more knowledgeable happens along and reads it. Also, you could try posting on an old bulletin board that this one replaced (but then someone revived the original a year or two later, so there's actually 2 different boards that overlap on some of the nerve-induced problems covered) it's ...brain.hastypasty.net/forums (where you would need to preface this string with http to use it as a site address to go to). You'd have to give yourself a screen name there, too.

I think that there was a good post, with links to go and read, under a thread titled Chronic Pain Syndrome very recently, so read some past posts here, too.

Also, make sure you search on any strings you can think of in both bulletin boards, because you are NOT alone, and might find some recent posters that you could try sending private mail to if their prior post makes them sound like they could help you articulate your questions better.
Good luck,
Jane

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.