Four years from MVD surgery and now complications

General General TN & GPN (Old Site)
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When i say Tegretol,i really mean Carbamazepine.It's all i ever took and exactly the same as far as i know,just generic.Sorry,it's just easier to spell..Haha!!It never truly worked on me,but just took the edge off.The time release seemed to do a bit better.At the end,i took such a high dose it had my blood numbers super whacky with low sodium and other stuff i had never had problems with before.I tried Lyrica and it made me feel crazy so i never really got a good test in with it.My GP was going to start me on Narco about the time of my GammaKnife.It started working and helped immediately so i never tried that.I know other pain meds did 0 good except to somewhat numb the pain.Im not even sure what Narco is.Thank God i am TN pain free now.I know it could come back at any time.I just try to enjoy what i have.I pray for all you guys in pain and hang out here to support as much as i can.I know exactly what it's like and it's horrible.

Linda Kindle said:

Oh, my, you have had to take a lot of Tegretol. My neurologist told me I could not go over 1200mg a day of tegretol even if it were the generic carbamazapene. I took the Tegretol CR and it gave me headaches so he told me to go back to carbamazapene. You know I am beginning to think like Don on here. I wonder if the tegretol is not what is causing the vertigo episodes. Even after my MVD I had finally weaned myself down to 100mg a day of the generic but that did mean I had been taking it for about 5 1/2 years, it still was in my system, it also makes me wonder if the ringing in the ears is not also a side affect of the medication.

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Jillian, there must be a connection between the vertigo and TN coming back. My vertigo started about a year ago. I have noticed my earing is not has good as it was following surgery, are that is what my family tells me.

I know what you mean Don about the spelling of that word, carbamazapene, I don't think I have ever gotten it right ,lol. Oh, well, it is what I take to. It is like taking candy, it does nothing for me. And Lyrica, now that was a trip to, my balance was horrible, I could not even stand up straight. I am going to the neurologist tomorrow , and hopefully she will give me something new to try, I am going to mention those medications to her. I am also thinking about Gamma Knife.

Linda

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I have had 3 different hearing tests over a period of 4 years and they all came back normal..I think what is happening is with the nerve dysfunction...my hearing gets distorted.. Especially when there is a lot of noise in the room ..it is dificult for me to hear someone talking....:( Just my take on things....