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

Ro,
Have an appt with an eye doctor but also called Neuro. Might need to change meds as my doc’s PA said it’s not normal for it to last this long. I really hate to have to wear glasses again but if I have to I will. Seems like they might put me back on gabapentin…hope the pain stays away like it is on tegretol.

Can’t get into eye doctor until the 23rd. plenty of time to figure this out huh. never knew eye drs were so hard to get into.

hope you are feeling well…been thinking of you.

Ro ~ said:

I had a bad reaction to teg but i did have vision changes. maybe if you go to the eye doctor, they can take a look. you may need glasses or change of glasses. k?

ya, my eyes have always been fairly sensitive but stable since i had lasik surgery. been a blessing to not wear glasses this long. my eyes were so bad. my glasses made my eyes tired! the PA seems to think it might be my teg so will wait till she asks the doctor tomorrow…teg didn’t help my brothers seizures either. he took like three doses before he had to go off of it.
we’ll see…

have a good night. almost time to get out of this office!

Hi Kristi
When i was on my high dose of Teg (2000mg a day) it really only affected my vision on those days it hit me hard.Meaning the days that were worse the Teg really messed me up very dizzy.Those days i spent mainly in bed.

Brian

Brian, mine is functional, just a gradual worsening. We have some huge tv and all of a sudden I can’t read small print on it. I don’t need to be in bed, but there are days it seems ok to sleep a lot!

hope you are well!

Kristi

Brian said:

Hi Kristi
When i was on my high dose of Teg (2000mg a day) it really only affected my vision on those days it hit me hard.Meaning the days that were worse the Teg really messed me up very dizzy.Those days i spent mainly in bed.



Brian

I’ve been on tegretol for probably 3 years now and it really helps me with the amount of pain I have and everything but I am so used to it now who knows if any of my meds do much? I take 1200 mg a day in pill form and have tried to increase that amount several times because of it’s positive effects however I have also had major problems with it’s side effects. When I tried to increase I was shaking, my hands and legs and so forth, when I would pass a piece of paper to someone it would look like I was trying to fan them! I was having major vision problems also. I got my blood work done including a tegretol measure and I was well into the critical numbers of the amount of tegretol in my system, they basically told me I was overdosing on it! So I had to drop the amount I was taking significantly which was unfortunate because it was helping my pain so much. But once I was back on a dosage my body could handle I could see fine, it’s just a difficult med to get used to. Also it is important to know, and many pharmacies don’t tell you, that if you eat or drink anything with grapefruit or it’s juice or anything the amount of tegretol in your body will increase as a result so be sure you avoid grapefruit products ok?
I hope your body gets used to the tegretol because it is such a helpful med for TN! Good luck!
Michaela

Hi Kristi,

I am new to TN, was just diagnosed recently. I only took Tegretol for a few weeks, but developed an allergic reaction and discontinued it. I wear glasses/contact lenses. I didn’t really notice anything with vision. I did get a lot of headaches, though.
I do hope things are better for you soon!

Thank you all for your comments. I finally talked to my neuro yesterday. He says it can easily be my teg causing the blurred vision. However, after finally feeling GOOD for the last few weeks, which I am forever grateful for, he says I need to start tapering off my meds to see if my vision is restored. I have decided I would rather have blurry vision that TN pain. I am so confused why he would tell me to go off of it when it’s making me feel so much better. That pain is the worst ever. He said all of the meds have that as a potential side effect so he’s not sure what he can replace it with! Um, no meds isn’t an option at all! He says some people just have episodes of pain and it MIGHT not be bad. I am way too chicken to find out!!! Getting glasses tomorrow.

well, the newest addition to this was during my eye exam on saturday. the doctor was shocked that the only change was in my right eye (side of my tn too) and that my left eye had slight change but only from strain of compensating for right eye. ugh…not sure what else this nerve is going to do to me…my hearing is too loud on that side, my eye is losing vision, my parotid gland is gone, all my teeth hurt (now top and bottom, which is new) …what else is in your face??? lol…i’m doing ok. just seem to be fighting this tn monster!

i got blurred and double vision from tegretol had eye doc and nuro doc arguing it was the others fault lol after 500 tests i gave up on them but i noticed the vision trouble lessened when dosage was less wich gave it away that it was the tegretol i am on 1800 mg a day again and can no longer drive due to vision and mental capacity and as far as i can tell it is defenitly related to tegritol …hope this helps

Yes, Stacy, sounds about right. Neuro wants me to go off my teg and I am like NOOOOO WAY! needed glasses. I can live with that for now. EXCEPT that now the pain is increasing so had to add another 200 mg daytime dose. That brings me to a low 600 mg compared to yours. I go see neuro next week and want to try to add in neurotin and see how that goes. maybe the combo will be better???
thanks!

stacey nason said:

i got blurred and double vision from tegretol had eye doc and nuro doc arguing it was the others fault lol after 500 tests i gave up on them but i noticed the vision trouble lessened when dosage was less wich gave it away that it was the tegretol i am on 1800 mg a day again and can no longer drive due to vision and mental capacity and as far as i can tell it is defenitly related to tegritol …hope this helps

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.

I don’t know yet, but I am seeing my neuro on Monday. We’ll see. I agree, if surgery is an option it seems better than all this horrible medication.

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.

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

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.

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.

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.