tegretol and vision

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Permalink Reply by Kristi Boyer on March 10, 2010 at 2:26pm

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?

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Permalink Reply by Kristi Boyer on March 10, 2010 at 2:53pm

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!

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Permalink Reply by Brian on March 10, 2010 at 3:12pm

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

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Permalink Reply by Kristi Boyer on March 10, 2010 at 3:17pm

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

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Permalink Reply by Michaela on March 10, 2010 at 4:11pm

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

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Permalink Reply by Enriqueta Trejo on March 10, 2010 at 10:02pm

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!

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Permalink Reply by Kristi Boyer on March 12, 2010 at 1:14pm

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.

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Permalink Reply by Kristi Boyer on March 15, 2010 at 9:41am

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!

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Permalink Reply by stacey nason on April 27, 2010 at 10:34pm

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

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Permalink Reply by Kristi Boyer on April 28, 2010 at 8:23am

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

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Permalink Reply by Cynthia Cross on April 29, 2010 at 3:44am

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 Kristi Boyer on April 29, 2010 at 8:27am

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.

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