Mine started out of nowhere a week after vacationing in kauaii 2 years ago at age 27. I'm pretty certain it was probably viral because I had nerve pain in my side, up to my armpit, and down the back of my arm to my pinky and ring finger, which go through phases of numbness or gets hypersensitive, like a burning stabbing tickle. Then the face pain started when it went completely numb like novocain, while I was sitting at the computer. Then after a couple weeks there were burning tingles which turned to constant stabbing, ripping, burning, boring pain.
Before I got on the right meds I couldn't move my eye without the worst ice pick stabbing pain from inside the eye to the tonsil, which is still always there but much milder.
I thought a tooth was growing up poking on the back of my sinus so went to doctor, then dentist, then orthodontist who referred to neurology. MRI showed a white jelly bean on the trigeminal nerve behind the eye which was "granulomous inflammation". Spinal tap and bloodwork were all normal so they diagnosed "Tolosa-hunt syndrome".
I went to a new place for a second opinion who gave me nortriptyline and oxcarbazapine which helped a lot for a while.
Then I maxed nortriptyline so added cymbalta, then had an MVD, relief lasted 8 weeks so now I've maxed cymbalta too so they added oxycontin and percocet and referred to pain specialist. But I didn't make an appointment because I want a referral to a place that does a PNS (peripheral nerve stimulator), and they keep referring me to their pain specialist which doesn't do them. I gave them the number to the one I want but I've heard nothing. I also put lidocaine up my nose which helps. I have a lot of pain behind the left nostril wall, behind the eye, across the cheek, and back to the jaw and inside to the tonsil.
In may I was hit by an extremely loud noise that came from a TV as a friend was connecting a laptop to a television. A few days later I woke up in the middle of the night as my ears felt like someone poured acid down my ear canals. I woke up with sound sensitivity and Hyperacusis.
Basically, I have an intense myoclonus in my middle ear. The muscle that is out of control is innervated by the Trigeminal Nerve. This has caused the Trigeminal Nerve to go haywire.
I can totally relate to what earlier poster, Hope, wrote. I had an onlay fall off, I had no pain, but asked for it to be fixed. The dentist messed up. I started to have pain. One thing led to another, more and more work was done on the tooth. The pain worsened and became extreme. The tooth was pulled. My neuro thinks the TN was caused by dental work. I take a lot of medication and my life has never been the same. I’m angry.
That was quite tragic.I've never heard of it before.Hopefully you can get successful treatment or at least control the pain.Best to you.Don
Michaelg said:
Don-
In may I was hit by an extremely loud noise that came from a TV as a friend was connecting a laptop to a television. A few days later I woke up in the middle of the night as my ears felt like someone poured acid down my ear canals. I woke up with sound sensitivity and Hyperacusis.
Basically, I have an intense myoclonus in my middle ear. The muscle that is out of control is innervated by the Trigeminal Nerve. This has caused the Trigeminal Nerve to go haywire.
The shocks to my right gums and forehead started all of a sudden in June of this year. Pretty mild shocks. My doctor had me get an MRI, but no abnormalities were detected. I couldn't get an MRI where dye is injected because of my advanced age (75). Something to do with kidneys. I am now on 600 mg of Tegretol daily. I believe this is causing me to lose my memory. This morning, getting ready for church, I couldn't remember how to tie my tie. The Tegretol is moderating my shocks, but they were quite mild before I started on this medication. I am wondering if I should get off it, but I will wait until I see a neurologist later this month. This drug does make me tired.
Perfectly normal for tegretol.It's a horrible medicine ,but it's the best thing i found for the pain.It made me sleep well is about the only good thing about it.There are other anti seizure meds that may work for you.I had a gamma knife stereotactic procedure that has worked for me for now.No meds and no pain thank god.Welcome to the forum!Don
Perfectly normal for tegretol.It's a horrible medicine ,but it's the best thing i found for the pain.It made me sleep well is about the only good thing about it.There are other anti seizure meds that may work for you.I had a gamma knife stereotactic procedure that has worked for me for now.No meds and no pain thank god.Welcome to the forum!Don
I honestly don't know. Mine started so gradually I can't really pin point the cause. My started with a little tingling between my nose and lip. It didn't happen all the time so I just thought "hmmm, that's weird". It was like for probably a year before it became more often and noticeable to me.
I should have mentioned that I went through a remission for a while. I was able to go through my pregnancy with my youngest one without any medicine. After the pregnancy I went to the dentist who recommended removing an old filling and replacing with a new one. I thought to myself I shouldn't let him do it but ended up letting him because i hadn't have the pain in so long. Within a few days my TN was back and back worse than I ever experienced before.
I'm not 100% sure as to the cause of my TN, but my gut feeling is that it was related to my Vitamin B-12 deficiency. After I was diagnosed with it and started supplementing with Methyl B-12 (2 tabs of 1000 mcg each am), my TN went into remission for years. Recently I ran out of my regular B-12 and it came back, but it has now settled down again.
There is also a possibility that it was triggered by a head-on collision between us and some guy who came into our lane after he tried to stop suddenly on a rain-slicked road. It was years ago, but my seat belt did not hold and my head hit the dashboard. (I didn't even know that it hit until a few days later when a large bruise developed across my forehead.) It is quite possible that with such a violent hit that it could have caused things to shift, but there is no way to be 100% sure.
I am sure sorry to hear about your situation and hope that you are able to find relief soon. Must have been kind of scary going through the surgery and I hope that each day gets better and better for you.