Medication side effects for TNB

[jazzer1]

I am a sax, flute, clarinet player with Trigeminal Neuralgia. Very annoing to have daily pain when practicing my proffesion. Have been taking Carbamezapine and lately Gabapentine, which both cause Erectile Disfunction.  Have read that Oxcarbazepine does not have this side effect.  Have not convinced my neurologist to let me switch meds.  What success have people had using Oxcarbazepine for TN, and does it also cause ED?  I don't want to use either carbamezapine or gabapentine if possible.

[jazzer1]

Thanks for all the info.

My neurologist agreed to recommend Trileptal, but says I am being unrealistic to think I can get off Gabapentin in addition to Tegretol, as I am still experiencing pain using both, and higher doses really affect me in various ways.  Since I am a Vet and going through the Veterans Administration, he said that the Trileptol needs to be approved by the pharmacy.  If it is not approved, I won't be able to get it.  

I am also seeing the Neurosurgery Department in Ann Arbor, MI every few months.  At some point Micro Vascular Surgery may be considered, but there are potential side effects that would not be acceptable to a wind musician, so for now, not an option.

If anyone knows of musicians - Brass or Woodwind Players specifially with TN, I would like to get in contact with them.

[nancy99n]

Trileptal is a newer drug than Tegretol (carbamazapine) and is supposed to have less side effects than Tegretol.

You do have to have blood tests every three months because it can affect the sodium levels in your blood, which could lead to kidney problems.

I went through 6 doctors before I found a Facial Pain Specialist at a large teaching hospital that actually helped me.  It was my Internist who prescribed the Gabapentin (but didn't realize we had to increase the dosage); my neurologist who took me off Gabapentin and prescribed Tegretol (but also didn't realize we had to increase the dosage).  Finally I found the Facial Pain Specialist who sees TN patients every day.  He took me off the Tegretol and put me on Trileptal.

You may want to find out how many Facial Pain patients your doctor sees.  Perhaps your neurologist is just not up-to-date on things.

[jazzer1]

Thanks for your info on how Trileptal works for Tregeminal Neuralgia.  

I would be interested to see how it works with other people as well, in place of Carbamazapine and Gabapentin so I have some ammunition when I see my neurologist.  I don't think Gabapentin is doing much if anything for me, I am currently taking 2700 mg per day in addition to Carbamazapine.  A couple days ago I increased my Carbamazapine as I was getting tired of waiting for Gabapentin to have a noticable effect on the pain.  My neurologist is hesitant to prescribe Tileptal (Oxcarbazapine).

[nancy99n]

Being female -- I can't answer your question about ED.  I do know that I tried gabapentin -- didn't work, Tegretol (Carbamezepine) didn't work.  But Trileptal worked well.  It DID cause nausea and drowsiness.  The pain doc said to take it a half-hour to an hour before eating and that resolve the nausea.  He also advised taking a No-Doz (equal to 1 cup of coffee) along with the daytime doses -- and that took care of most of the drowsiness.