I was told I have TN by default of any other diagnosis because the symptoms were closest to it.
I have had what I consider success on Trileptal, in that I have tolerable pain and discomfort, but I can live a full life.
In the last year the symptoms have jumped to the other side of my face. I can be classified as atypical in that I have crushing pain, numbness, etc., in addition to the shocking pain.
Lately the symptoms now include TMJ- I think, where the pain is intense and my jaw clicks and it hurts to chew.
Anyone familiar with this?
I will see my neurologist in February. I feel that there is little to offer medically at this point, since I will not have surgery or radiation.
Oh, and as it gets cooler, my symptoms increase- entire face feeling pressure.
I have both on both sides. It took a while to get it under control with an MVD on the right. I take the highest dose of gabapentin and manage with other alternative methods. All with support from my neurologist I'm now living a relatively normal life. Still lots of pain but I can handle it better now.
painfrie- I have the same types of pain on both sides plus cluster headaches. Sometimes when I talk, the back of my jaw feels like a muscle cramp. I take lamictal, baclofen and elavil. It helps (especially the shocks), but I don't know how severe it would be without them.
Shocks-That is one of the first things to get my diagnosis. Aren't they strange? You are going about your business-or just reading- and zap- there is what feel like an electrical shock. Mine were in my temple. I am bilateral and occasionaly simultaneaus. Different pains at different times for different reasons. Keep your sense of humor- we never know what is coming next as this condition progresses. I have found Vimpat very helpful- also very costly. All the best to you all as we take this journey together.
Yes, let us keep a sense of humour. We scored a full pot! Now that’s something to brg about.
No, but seriously: This site has so many complaints I often feel worse after I log off. When you have a flare-up in all 6 branches, I wish we could sometimes talk about something else… At least we aren’t dying. It actually helps me to think of people in warzones, immoral as that may be (and some of those must statistically also have TN, now THEM I feel bad for…)
I agree with you. a breeze or a/c can be torture-I have a scarf with me at all times. Extra in the glove box of my car and my husbands-Don't leave home without it. I carry it where ever I go. In a restraurant I need it right away-no time to go to the car, as the pain starts immediatly. I do not care what people think and give no explanation. If it keeps the cold from hitting my face that is my business. I have had injections, ablations, MVD on left side and GN on right. The GN has helped some but all have been failuses. I have a wonderful DR who helps with meds. Over the last 15 years we have tried all the normal and some of the just a guess meds. Keep at it- I also take pain meds to keep it under control. Yes I have TMJ and it does hurt. I plan my meals so it is after the meds have had a chance to kick in. Isn't it wonderful to know you are not alone in this. There are so many of us on this site to help each other. Remember we are here for support-not medical advise. That is between you and your Dr. But you might find something new here to talk to the Doc about. If nobody else understand- We do and care about you and support you. Remember never say never. Gamma Knife is painless and has worked for so many of us. All the best to you as we travel this journey together.
