So my mom's neurologist decided to decrease the Tegretol dose because the side effects were intolerable (to say the least)
We are now 100 mg less. She was on 110 mg Tegretol + 200 mg Phenytoin Sodium
Today was day 1 after decreasing the dose. My mother is finally able to stand on her feet! My joy could not be described. We had a conversation and we even laughed. It was a beautiful day but then the pain striked again. It was quite mild but I worry..I worry alot.
Should we up the dose tomorrow? Is it normal for pain to recur one day after decreasing the Tegretol dose? Does this mean she'll have more attacks now? Does it mean her attacks are going to get worse? Our next appointment is in 2 weeks. I'm worried out of my mind!!!!
I have been in a somewhat similar boat as your mother. I take Tegretol XR (extended release). I have been at 400 mg. for a while now and am currently increasing my dose to 600 mg. I, too, suffer from sleepiness, memory-loss and general fogginess. However, I have noticed a benefit in the higher dose. Although, I have not decreased my dose and experienced what your mother is going through I have decided to tough out the side effects for at least 6 weeks before I try something different. Tegretol is the most commonly prescribed anti-seizure med for TN and is often more successful in managing pain than other medications. Does your mother take immediate release Tegretol or Tegretol XR? The neurologist that I see prescribed me Tegretol XR as it is supposed to have less side effects than the immediate release.
Unfortunately, many people experience similar side effects when taking other anti-seizure medications; gabapentin, trileptal, topamax to name a few. I have taken the former two and it took a while to get used to side effects. A suggestion... The only anti-seizure med that I have taken that I experienced NO side effects on was Lamictal. Lamictal is not commonly prescribed for TN but it worked for me for a while.
On a positive note, there are many medications available to those of us with TN. There are also surgical options. A medication that affects one person may not affect another. If your mom does have to continue with Tegretol in order to manage her pain the side effects will hopefully subside after sometime (generally 2-6 weeks).
Perhaps, posting a discussion to get others experiences on all medications and the side effects they've experienced might be helpful for you & your mom.
I wish you and your mom the best! I certainly hope that her pain stays in check until her next appointment! Take care. johanna
Yes, it is normal to feel it even if you were just hours late on a dose. What is your doctor putting her on instead? While I was switching medications, I was decreasing the Tegretol, and starting gabapentin.... for about a week during this, I had tremendous pain. But the pain started to decreased tremendously as the other medication started to build up and become effective.