Accepting TN
 

Hi,
I just joined this forum today.
I have been sufferring from TN like pain for several years.
I had an acoustic neuroma (Benign tumor on the hearing nerve) surgically removed 5 years ago. Prior to the diagnosis, I had pain sporatically on my teeth and jaw. When I went to the dentist, I was told that I needed a root canal. This pain usually occurred around my period or ovulation. It did not look like classic TN so I dismissed it, especially after my AN diagnosis and surgery. With the removal of the AN which was 4cm, my facial nerve was stretched leaving me with weakness on one side of my face. I figured that that may have caused the pain.

Anyway, flash forward. I've been a part of this AN support group and many of us suffer from TN like pain. Mine occurs on both my left and right side of the face. (not at the same time) This week, I was at the dentist with my mouth opened for an hour having a cavity filled.. That night, pain on that side. It lasted 2 days and then I had a brief break for a day and then WHAM, it hit the other side.

I take imitrex which as of late does not help very much. I've been on Neurontin and topomax as well with very little relief. On average these aches appear 1 -2 times per month depending. I have 2 small sons so they really make it difficult to care for expecially since my almost 4 year old has autism.
I feel fortunate that I don't have the "electric" shocks that others report but I tell you what, I can't function when I have one of these episodes.

I want to learn to manage this illness. My neurosurgeon suggested I get an MRI to view the nerve. I've read from others that this TN does not necessarily show up on the scan. I've been to the Diamond Headache clinic in Chicago and they diagnosed me with Atypical migraine. That is where I was put on Topomax.

I recently got an NT1 device from my dentist to help with grinding and clenching. It seemed to help prior to my last episode. It fits over my top 2 teeth and prevents me from clenching.

Thank you for listening.
MaryLynn

Marylynn :hug: sorry you've been feeling such pain. It's truly horrendous.

It was actually a dental specialist who diagnosed my Trigeminal Neuralgia, but didn't specify if it was type 1 or 2 (2 being atypical). I've experienced both types to varying degrees.

I've tried many drugs.. Amitriptyline and another anti depressant (can't recall the name right now) did nothing. Anti convulsants: Carbamazepine, Neurontin, Topiramate, all failed (side effects and little to no benefits from these).

The only drug that has worked, and which I continue to take, is Clonazepam. 1mg a day currently. At some times, I can take as little as .5 mg and have relief.

My pain experience has been more on the side of burning searing pain that's continuous from about 30 minutes after waking, rather than the stabbing shock like pains (however, I have had these as well).

I hope you find your best option for pain relief. It's a lot of playing guinea pig on the part of the patient, unfortunately :(.

Hi MaryLynn.

Nice to meet you, however not under the greatest of circumstances, of course.

Oh WOW you and I have lived parallel lives. My AN was removed 15 years ago. It was on the right hand side. The TN is on the left. I've had almost 4 years of dental surgical "interventions" until someone finally figured out the problem. Supposedly a severe case of atypical TN

We've managed to rule out a recurrence of the AN, and are now looking at some sort of vascular compression. My MRI has been sent to Radiology for further investigation, and I see the neurosurgeon again on the 14th of January.

They first tried Carbamazepine (Tegratol) but I had difficulty with the side effects. So now I'm on Lyrica. Not great as far as managing the pain goes.

More than anything I want this damn thing FIXED. It seemed so simple with the AN: just cut it out and let me get back to work. I lost my hearing and balance nerves on the RH side but other than that, everything went great.

I'm on my way to bed so will keep this short, but just wanted to give a fellow AN survivor a special hug :hug: and welcome you here. I'm new too.

Cat

:hug: Marylynn I sent you reply in your message box.
Sending low pain and many warm days of peacefull happiness to all my family here new bes and lurking ones alike.
Peace :grouphug:
bmw