So I had a low sodium problem and I went off the Tegratol (Carbamazapine) and on to Pregabalin. I am at 200 mg, 100 twicw a day. The low sodium problem continued and I have been diagnosed with cancer. The Pregabalin seems to be helping more than the Tegratol but this week I have started having both TN1 and TN2 pains. Low level but multiple times a day. The wind and cold seem to be more of a problem than before.
I see my Neuro tomorrow so will see what she has to say. Anyone who has taken Pregabalin have any advice or suggestions they would be most welcome.
My daughter asked me the other day if I was afraid of having surgery re the cancer. I said no, but that I was more terrified of having TN attacks.
I do intend having a very serious discussion with the cancer team about the TN. They all seem to know what it is but I am sure they don't really get it. While I was meeting with them last week I was having some small attacks and I immediately got an inflamed shoulder and some migraine pains. One doc said it was not related to TN! So some serious discussion is in order! :)
Oh my heavens! I am so sorry to hear about all this. I took pregabalin (Lyrica) but couldn’t tolerate it. However, I can only tolerate one anti-seizure med. Many many people get fabulous results from
Lyrica. I will tell you, get armed with as much information as you can, because if the doctors don’t seem like they “get it” they probably don’t. I am convinced there is a page or two on TN in med school and that’s it. It’s so rare the docs don’t see many cases of it. Then as to how to present the info… Some doctors have egos the size of Montana, so when YOU are telling them something “they don’t know” ( and they know it), ohhh boy. It doesn’t go well. Others receive the info well. So be careful with your approach. You may need to drop of some info – and NOT Wikipedia, more like med school, NIH, or scholarly info - to the docs beforehand. I wish you well with your surgery. If you can battle TN, cancer will be stomped out in no time!!