Hi everyone. I've been on forum for a while but have not posted recently. I was originally diagnosed in Sept 2012 with TN1 and have had a few remissions, but a few weeks ago the nurse practitioner in my neurologist's office confirmed what I suspected - that I also had TN2. I live in the Boston area, and my neurologist (who I have only seen once) is at Mass General Hospital.
I am in process of adding Trileptal (300mg/day) to the Gabapentin that I'm already on (1200mg/day). I also take 40mg of Nortriptyline per day. Although I'm increasing meds, in the last few weeks I have experienced a steady increase of pain, rather than the opposite which I had hoped for.
Yesterday and today, the pain has gotten so severe that I cannot even lick my lips. Trying to eat, or drink from a cup or with a straw or spoon is almost impossible without crazy pain. Has anyone experienced this? I am worried without the proper nutrition I will become dehydrated. I'm 5/7" and normally about 128 pounds, and now I'm down to 118 pounds - a loss of almost 10 pounds in just over a month.
I am willing to try the Trileptal but wondering what dose I will need to achieve before finding some relief. In the interim, I'm pursuing help from a Chiropractor. Am due to get X-rays - his initial exam suggested that I have some areas of my spine at the top misaligned.
Help if you've been on Trileptal..
Help if you can suggest anything I can do to help me eat!
I’m so sorry you are in so much pain right now. Yes, I have had attacks like that. I have not gotten in more than 800 calories a day for over a week now. Yogurt. Vanilla protein shakes. Scrambled eggs. Oatmeal. I lay with my face on the heating pad to numb it up a bit first than i eat very carefully and very slowly, small bites. Staying hydrated is hard for me.
I just had my consult for MVD surgery today. Waiting on the office to call me back with the earliest availabel date.
Please make sure your doctor is aware of your weight loss. You can’t really afford to loose any! I’ve got 10-15 to spare LOL
Hi, sorry you have this severe pain while eating and drinking. Unfortunately for me I am a “stress eater” so despite the excruciating pain I have managed to gain about 45 lb in 3 years. When TN at its worst I found the temperature had to be perfect, very warm but not hot, mushy. I would get a decent mouthful with a fork (couldn’t use a spoon as it always hit the trigger point on my lip) and hold the food in my mouth. Eventually the pain would pass and I could swallow. A meal would take forever. Or hold my tongue hard on the other trigger point and try to swallow. It gets to be quite an art, and different things work for different people. But do try to get fluids, my TN is worse when dehydrated.
I am so sorry for you pain. I was in bed everyday last week because of the excruciating pain. My pain is on my right side. I put icy hot. The heat feels good. I also put Vaseline with a Q-tip on my lips until I can lick my lips again. I drink out of a water or should I say I let a little bit of water slide down if I can. Protein drinks are the best and for me just relaxing and not moving, talking, or anything until it passes. I also can eat very small bites of scrambled eggs when I'm able to. But in the mean time put on a good movie and pray and wait it out if you can.
Thanks everyone for suggestions. I actually got a prescription for liquid lidocaine (2%) and after I swish it around my mouth (which itself is painful, and gross-tasting) but I was able to eat! Two meals in fact! I was thrilled that this could provide some temporary relief. I've read that this is called "magic mouthwash" and it sort of was! The label says not to eat or drink for an hour after taking it (for fear you could bit tongue or choke), but I ate right just a few minutes after applying, and I'm glad I did because the effect went away within 15 minutes. But what a temporary relief!
Hey, thats a big improvement! liquid lidocaine, i might ask my doc for a script. My MVD is july 1 but that seems like a long time away and if the mouthwash at least provides a few hours relief-might also let me take fewer vicodin as I hate the way they make me feel. Thanks for sharing and happy you found some relief!
Ellen I am on Oxacarbazepimine.
300 mg. I had the same pain when talking and drinking, not when eating. It lasted for several weeks. I had to drink from a straw and it was still painful. Then it disappeared and has not returned. Now I have the same type of pain on the left side of the face only when I shave.
I went to Tufts in Boston and had good results with gamma knife. I know I aim not out of the woods yet. I know the beast will return at some point.
Good luck!
Sergio
LOL