Update to my visit to the neurologist on Tuesday:
First of all, Sunday night was the worst night of my life. I had a stressful evening (in that I had an argument with my sister-in-law, which has never, in 25 years, happened before) and it really upset me. My husband and I tried to calm me down by watching the Oscars (but they are so boring to me that I couldn't get my mind off the problem). I'm very sensitive, so when things go wrong they can really bother me.
Well, I felt rather nervous about the situation, and just before bed by teeth began to hurt in a way that I can only compare to the first time I got TN (like an electric shock) and the BIGGEST surprise of all was that the opposite side, which has never been involved, hurt just as bad (it was the upper teeth on the left and the lower teeth on the right). The pain was intolerable. Next to labor, it was the worst pain I ever had. I didn't know how I was supposed to go to sleep with this! My husband told me to just try to lay there and see what happened, and eventually I drifted off to sleep, but kept waking up with this horrible pain. When I heard him get up at 6:00 a.m. he got me a double ice pack (ice has always helped in the past) and this soothed me and helped me fall asleep lightly until my alarm went off at 8:00 when I had to get up. I had taken my Tegretol at 6:00 though I normally take it at 10:00 a.m. and when I woke up the pain was gone.
I couldn't believe it went to the other side. I have read about bilateral TN, but it is so rare. Was my stress so great that it brought on bilateral TN??? I really couldn't wait until the next day to see my Neuro.
I told her what had happened and asked her if I now had Atypical TN. She said no, I definitely have type 1 TN, as I have many triggers that are part of TN. I just now have it on both sides. First thing she said is that I am now not a candidate for surgery (my heart dropped). She said there is nothing except opoids to give for a break through like this and I am allergic to all narcotics (they make me itch), but she said they really don't work too well anyway.
She said the KEY is to get all stress out of my life! She can see that I am a sensitive person, and this will only hurt me. I have to stay away from people who will start arguments with me, even if it is a family member. Stress is the worst offender in Trigeminal Neuralgia. I have to learn to let little things go. She suggested a therapist to teach me how to do this. I am willing to give this a try.
In the meantime, I can't eat. I can only eat soft food and there aren't many. I didn't realize how stressed I was before I saw her because when they weighed me I lost 6 pounds, and I can't really afford to do that.
So, about the zombie-like condition -- who cares anymore. With this kind of pain and having it on both sides, I'm certainly not going to change medicines. And she said that Trileptal causes the same sleepiness and is less effective. She could add Baclofen, but that would add more sleepiness. She could add Elavil, but that causes the same sleepiness and adds a lot of weight gain.
She told me that there are 3 different ways to take the Tegretol I am on and may help make the way it is affecting me change a little. 200/200/200/200. 200/200/400 400/400 I am sticking with the first way until the pain (which is back to my usual offending left side) is gone; then I will try 200 in the morning, 200 at 6 in the evening and 400 before bed and maybe I'll have the afternoon without too much drowsiness. I don't know how because she said it's already in the bloodstream so I don't see what difference it can make. But obviously it can or she wouldn't have suggested it.
So, that's my terrible story. Anyone have it on both sides? If so, how do you eat?
Barb
