wow, this was extremely enlightening. I got my O.N. from a root canal. It was an emergency one that was unexpected that lasted 3.5 hours and then root was left in it. They gave me no pain medication what so ever because they kept telling me that I had no root left. The new TMJ specialist said that I probably contorted my neck in pain in such a way that I've messed up my muscles. The neurologist agrees and says that my muscles are pressing on the nerve. This makes my nerves hurt and then my muscles react to that. So basically an endless cycle. My problem is that it feels like someone just cut off the back of my scalp. Also my neck gets super stiff and my right eye is always in pain inside of my head.
I had my first steriod shots yesterday and now my top of my head hurts and the injection sites hurt. As well, my facial skin feels like it is on fire. Bad reaction I suppose.

Hello, im a newbee here but not with t.n. And m.s.. I was wondering if you felt alot of pressure behind your eye along with the pain? I never had eye pain before now it's been constant for the past 5 month, i do have severe dry eyes; although here recently it's eased up somewhat. Is this relate d to the m.s. Or the t.n.?
And are there any eye drops for this kind of pain?
Thanks,
litlefawn3

Hi, Jamie.
 

I too have ON. Mine came with a whiplash injury and cervical fusion of 3 levels. After the fusion, my ON headaches have been constant on my left side of my neck....relentless....never ceasing. Currently, I numb my pain mostly with morphine. I will be trying a Occipital nerve block in 2 weeks. Have you had any procedures? I have had epidurals, trigger pt. facet joint inj. to no avail....I only numb my pain...and thank God the drugs still work. I would love to chat someday....
God bless you. I am 54. How old are you? I have had Headaches since my daughter was born,...18 yrs. but severe for 7 yrs.

Beth

Hi Beth,
My ON pain is on the left side also. I have been getting the Occipital Nerve blocks for the last 18 months, and they work well for me. I haven't had any other procedures done yet, just the nerve blocks and a few different meds. I am 43, and have had ON pain come and go over the 12 years since I had neurosurgery to remove a cyst from my brain.
~Jaime~

I have trigeminal neuralgia and my husband has glossopharyngeal neuralgia. What are the odds - lol.

I always tell people it's that darn transformer box in our backyard causing the neurological problems, haha. I don't believe any one culprit brought this on, nor do I believe any series of events. Neither one of us has had any car accidents or anything traumatic etc. Both of our cases were clearly spontaneous. However, in my research of our small neighborhood I have found 6 other trigeminal (that I know personally) within a 5 mile radius?????? Coincidence??

My husband was much worse off than me. I say "was" because he had microvascular decompression surgery in 2006. Dr. Jho in Pittsburgh is a miracle worker!!! My husband has his life back!!!! Since his surgery he hasn't taken one tegretol and hasn't had one attack, not one!! My husband would be on the floor in pain sometimes 20-30 times a day. Our children finally know their father.

My trigeminal isn't quite as severe. I have been diagnosed with migraine headaches, cluster headaches, and every kind of headache known to man. It took the endodontist to finally figure out that it was trigeminal. Neurontin works well for me, for now. If this does progress past the drugs I will definitely contact Dr. Jho!!

That is a bit interesting to me, as it appears that my ON is caused by tightness in that muscle that runs down the neck and into the shoulder.
Always the left side. I call it the 'beartrap' as it bites and won't let go.
My new pain dr has referred me to a clinical physio who is now working out for me a long term home exercise/stretching regimen, which should result in getting some muscle tone back and breaking that cycle. He looks at the psychological, physical and pain as all being linked.
Some deep tissue massage also.
it should then help my mental state as I'm on the edge of depression from it all.
I actually do feel better just from having discussed it yesterday, and being given a plan to get me out of the pain cycle.
This is the first time that anyone has bothered to look deeper into my chronic pain and look for the cause, rather than just treat it.

Saw my GP today and he said that they don't know the cause of ON, or how to treat it. I asked about nerve ablation and he said it's OK if they can find the nerve, but they tend to do a wider area so you have a numb patch.
He said regular pain meds don't work-as I've found out.
He said that epliepsy meds are good but he can't prescribe them under the health rebate scheme.
He gace me a strip of Gabapentin (Neurontin) to try. Just take as needed.
Had the ON all day and night yesterday, still there today but easing. Feel wornout and irritable.
One good thing-you don't think about getting depressed as you can't even finish a thought before it fizzles out.
Too sore to think!

Peter, welcome although I'm sorry you're here. You would probably do well to see a neurologist or a pain management doctor. I'm treating with a pain management doctor, but I've not had an ablation done to the ON, only direct blocks and they were heaven while they lasted. This condition $@&*s. When its real bad, I don't get a break at all from the pain. I'm trying to avoid anticonvulsants, but I'm not sure I'll be able to indefinately. Hang in there!

HiEEO3. Thanks.
I am with a new pain doc, who examined my neck and found a lot of very tight and sore muscles, so he sent me to a clinical physiologist.
Saw him and was quite impressed by his interpretation of the effects chronic pain have on the body and the mind. He is writing up an exercise/ stretching routine that I will learn and do at home. These may help with the pain-I do get a lot of tense muscle pain, and my muscles are wasting away from not doing anything, so I am sure that it will be of lasting benefit.
Not sure if it will help with the ON, as muscle relaxants didn't make any difference this time.
I think now that most of my neck pain is in fact ON, and that the shoulder muscle pain is related, a side effect.
It's funny how you just can't put 2 and 2 together and get 4 when you aren't able to think properly.
Also, this new pain dr is the first one to actually examine me. The others just asked me to describe my pain, and then started to prescribe treatment.
If I can't wait 3-4 weeks to get into the exercise thing, I may have to get a nerve block or ablation.
Can anyone give me some advice on which to suggest to the DR?

Dignostic blocks are usually done before ablation is. It confirms that the pain is actually coming from where they think it is. If they use steroids, they can calm the inflamation some. After I had my second direct block to the occipital nerve, I did get some extended relief from the ON. I've been told that pulsed frequency is the way to go with ablation, but insurance in the States is an issue. Ask your doctor about it in your country and given your health care is national, I think. I was told the muscles are the issue with mine, but I've had RFA to the upper cervicals and it still hasn't alleviated the ON. I'm sure it is adding to it, but they don't like to do RFA to C2 and the base of the skull. I guess its too easy to get unwanted results that high up. So, thats all I know so far, which really isn't much. Good luck with your treatment and post how it all goes.