Well, since I’ve begun this god-forsaken journey, taking these extreme medications, I’ve begun to lose my mind. I’m depressed, feel disconnected and foggy. I can’t think straight, my memory suffers and overall I find myself more non-functioning each day. I don’t understand how so many of you have managed for literally years dealing with the pain and medication side effects. I’m stopping my trileptal with hopes of getting my mind back to normal. I’m taking my chances with the pain. I have lidocaine oral and topical. Wish me luck.
Kim, I can so relate to what you are saying, after a 4 year non-stop bout (18 months of if rolled up in a ball in bed); I am so happy for the last 8 weeks. I have been using the phrase "I am happy to have my mind back". After trying 14 different medications (and numerous treatments including a nerve stimulator implant; nerve blocks; countless consultations - which included travel), my Pain Management doctor finally found the combination of nortriptyline aka Pamelor and a long lasting synthetic opiod. I am having good relief from these three medications which are much less mind numbing. Then in addition, I had botox injected in my upper back and lower skull and got amazing pain relief. Bear in mind that I have occipital neuralgia and geniculate neuralgia in addition to TN. And I did have SEVERE neck weakness from the botox for 5 weeks. But it has been a great relief to have my BRAIN back... I don't know how long it will last, as we all know things change in a heartbeat, I am taking each day as a blessing and grateful for the break from being unable to form a sentence and do anything but lay in bed doped up. I hope you find that combination that gives you the balance between pain relief and mental function!
Gail,
I was so happy when reading your post. It gave me hope! We’re going to seek out a pain management doctor to find out what my options are. Also, I fired my neuro. She told me basically - yes, you have TN and will for the rest of your life and trileptal was really the best med she could recommend. I have a consult with a new neuro on Monday
Kim, I'm glad... I hope you find some relief soon and just as important maintain your brain function at least at a do-able level. Just as an FYI I was told that it was better to seek a Pain Management Specialist (Mine is an Anesthesiologist who specializes in pain) who is associated with a hospital or large clinic. There are some that have set up one-off type offices who are pill pushers and are just in to it to be able to charge you for an office visit every month when you come to pick up your 30 day supply.
My Medical Team consists of
Internal Medicine doctor - for everyday troubles
Neurologists
Neurosurgeon (if needed)
Pain Management Specialist
Psychiatrist - or Psychologists: you need someone to talk to about what this does to you mentally and for me depression plays a big role with the constant pain.
Keep in touch and let me know how things are going for you.