Another Update

I'm still here and so is the TN. What isn't here is the TN medications.

My TN seems to have morphed since my initial diagnosis. I have less spasms now, seemingly replaced by a continuous burning sensation in my cheek, an earache, and the usual eye pain. I still do my best to ignore it, although some days it takes it toll. I worry that one day I will find it difficult to wear glasses on my face.

The phone seems to be a new trigger. I try to use speaker phone when I can, but this is not always possible for work.

I have resumed exercise again at the pace of 30 minutes a day, five days a week. I also stretch a little everyday -- I suspect my TN is also due to degenerative changes in my cervical spine.

I'm almost finished weaning off pain medication for Fibromyalgia. One or two more cuts and I will be finished.

I hope to feel better by Spring. Maybe a little sun on my face will help.

Blessings,

MMM

I hope you do feel better soon. I’m sorry your pain is now continuous. It amazes me how TN pain can change in intensity, type of sensations felt and location. I have also been concerned about being able to wear glasses. I wear contacts but I can’t wear them all day. My doctor said that my medicine also helps my fibromyalgia.

Liz

Hi,

A comment on the glasses bit. I have worn some sort of corrective lenses since I was six years old and I'm now 54. In 2007, I had a "stroke like event" that paralyzed the left side of my face, including my eye. I couldn't blink, couldn't close my eye, couldn't shield my eye from the elements and was told I could never wear my contacts again. YIKES! Most of my friends had never seen me in glasses because I hate them. The last time I wore them they were compared to coke bottle bottoms they are so thick.

So, I had to get new glasses because my old ones were so outdated. The new lenses are much thinner and much lighter, but they are still pretty thick.

My neurosurgeon put a piece of tubing on my left temple (my TN side) similar to what they use on elderly people to prevent chafing from the oxygen hose. It works! It keeps the pressure off that TN pressure point so I can wear my glasses on a daily basis.

Over time, my eye has regained it's ability to close almost all the way, it blinks spontaneously and it's not completely paralyzed. No one knows why. The rest of my face is still paralyzed. I have adapted well, but still have to use "no more tears" shampoo and I can't wear mascara in case some falls in my eye. I can't blink anything out of it.

In February, I see the cornea specialist again, but so far, so good. No pernament damage yet. I have adapted to glasses full time, but I'm always amazed that little piece of tubing does such a good job of keeping the pressure off my TN pressure point.

So, don't worry, there's always something to help us. It might not be high tech, but it works!

Jackie