Thank you all for your comments, but is there someone on this forum with Type I TN (who sometimes have constant knife-like pain in all teeth on both sides at the same time - I know this is unusual, but I explained it in my comment above). I suppose you don't have to have the the pain at the same time. I'm looking for people who have difficulty chewing food because the pain can come on both sides. That, besides the pain, is my biggest fear - chewing food. For one week now I have been eating only soft food that I suck down and my doctor told me to drink Ensure Protein Shakes.
For the last 9 months when I only had it on one side, I only ate on the opposite side - now what? I'm going to get pretty sick of clear broth with noodles, mashed potatoes, oatmeal and yogurt - I don't like ice cream. Actually I already am sick of all of it. Mostly I don't feel like eating. My husband has to make me.
I can't brush my teeth at night because that is when I am in terrible pain, and that scares me because the last place I want to end up is at the dentist. A couple of times this week I couldn't even brush in the morning - luckily I wasn't going anywhere. But with this pain I can't go anywhere.
I just spoke with my neuro's secretary and my neuro is out of town. My neuro misunderstood me when I told her that I did NOT care if I became more of a zombie because the pain was so bad. She did not up my Tegretol. Is theresucha thing as a flare-up that lasts a short time and goes away, and the neuro does not up themedicine?Does anyone know anything about that? There are so many things I forget to ask when I am at a doctor's office that I hate myself afterward!!
I hope I get some answers. I really need help. Thank you all. You've been so kind. I also wish you luck with your problems - I care about all of you.
Min - Do your teeth hurt when the pain gets bad and you have to eat room temperature food? I don't really understand what your problem is. And when the pain gets bad, your doctor does not up the Trileptal? Is this considered a flarup? How long do these last for you? And yes, it is hard to open my mouth and I don't even want to eat when I have the pain on both sides. I just want to know how to eat so I don't bring the pain on.
Thanks, Min.
Min C said:
When I was on Tegretol it made me veryyyy sleepy,, I do not have that with Trileptal. I'm just sayin....I have bilateral Type II and when the pain gets bad I have to eat room temperature food first of all and I use oxycodone now. It used to be hydrocodone but that didn't work for the burning pain I was having around my mouth so my neuro switched to oxycodone. Jackie uses the chocolate on the tip of her tongue trick and lets its melt. She can tell you more about that. Type one is soo different you probably cannot even open your mouth from what I've read on here before.... :(
Barby, The most recent Breakthrough pain I guess is what I would call it came on.. Because I flossed my teeth. I used the vicadin and it helped but didn't completely eliminate the pain. So I had to avoid that area. But it is different for me because I do have Type II TN. I don't think I have ever actually had it yet to where I couldn't chew on both sides yet. But I do get ear and jaw pain on both side at the same time. I am sorry you are having such a crappy time right now... Hopefully this will not last. Maybe your neuro can give you something for the breakthrough pain you are having. :(
Barby, I should have told you also, that I have to eat room temperature food regardless. All the time pretty much.
If it's too cold it will bring on pain instantly on my teeth and then to my ear. If it's too hot it is possible it will cause a problem, but I don't want to risk it. Min