We are patients living with Trigeminal Neuralgia, here for your support.

tegretol and vision

Hi! Question for those of you with more experience than me.
I'm on tegretol and went to get my drivers license renewed last week. I could not read the lines they asked me to (on 4 machines). I had lasik surgery 5 years ago and although I can get a touch up if I want to, I'd planned to do that in the future, not so soon.
The change is to my distance vision and I've had it since I was on the Lyrica, but it has gotten worse on the stronger doses of teg.
Anyone know if this is forever or just for now? I realize it is a side effect but wish I knew it what would happen before I go invest in glasses I might not need. I do have to do something, the headaches from eye strain are crazy...

Thanks,
Kristi

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Permalink Reply by Bonnie Gray on May 20, 2010 at 1:46pm

This may sound weird but since I have been on Tegretol, my vision has gotten better. I used to be -2.50 in my R eye and -1.50 in my L eye. Over the past 2 exams my vision has been getting better. My R eye is now -1.25 and my L eye is +.25. Most of the time, I go without any contacts and watch tv with nothing. When I go out, I only put the one -1.25 contact in my R eye and I see fine. My Optometrist never heard of that before.

So, my eyes are better but my weight gain has been horrible (40 lbs in 2 years). Looking forward to my MVD in 2 weeks.

Bonnie

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Permalink Reply by Bonnie Gray on May 20, 2010 at 1:50pm

Hi Cynthia,
It's interesting to hear that you had TN on both sides. I mainly have it on my L side and am having a MVD on June 1st (2 weeks). But the past few months, I have been getting shocks and pin needle feelings on my R side. My neurologist says that it will go away after the MVD. Now, I am wondering if he is wrong. How long have you had it on both sides?

Also, can I ask how long it took to recover from the MVD and how you felt. As you can guess, I am pretty nervous about the surgery but if it helps with the pain and gets me off the high doses of Tegretol (1,600 - 1,800 mg a day) and gives me my life back, it will be worth it. I look forward to hearing from you, or anyone else who can help me.

Cynthia Cross said:

Are you a candidate for surgery? Instead of taking lethal doses of nasty meds, surgery can eliminate the pain and the meds. I had MVD on the left side and had immediate relief. Now I have TN on the right side and I'm not even messing with meds and going right for another surgery.

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Permalink Reply by Rick Smith on May 20, 2010 at 5:43pm

I just started taking tegretol 200mg 3 times daily so this is very interesting.
My doctor told me there would be some side effects,told me I would feel as if I were drunk.
Never felt any side effects s0 Increased doasge as doctor recomended.
thinking my doctor needs to increase the dosage once again as the effects of the meds are minimal.
MRI does show blood vesel on right V3 branch.

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Permalink Reply by Liz K. on May 20, 2010 at 11:20pm

Rick,
I think a lot of the drugs can give you the drunk feeling. My neuro and surgeon are amazed at why I am not totally drunk. But I am starting to have some side effects. I stumble some. But memory and vision are the primary problems I am having now. Bonnie mentioned vision changes. My vision changes every time I see the doctor.
Liz

Rick Smith said:

I just started taking tegretol 200mg 3 times daily so this is very interesting.
My doctor told me there would be some side effects,told me I would feel as if I were drunk.
Never felt any side effects s0 Increased doasge as doctor recomended.
thinking my doctor needs to increase the dosage once again as the effects of the meds are minimal.
MRI does show blood vesel on right V3 branch.