Dilantin Question-Vision
- Thread starter KAM
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I more than likely have to come off it for a while. I've taken it for about five years now and was usually at 18-20. It seems through chemo & radiation over the last year I can't keep a level for anything much less see the same way for any extended period of time. I guess it's back to the neuro. Thanks.
Jake
Stalwart
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I know what you mean about your vision changing. One day my vision is blurry, the next it's ok???? I have been on Dilantin for 40 years and my level use to stay around 12-14. In recent years it jumps all over the place regardless of how many I take. My dosage is being changed almost monthly. I have blood tests monthly but lately I've been getting them every 2 weeks. I hope my level (and yours) stabilizes soon. Last year I had to buy new glasses twice and now I can't read a number a phone book. I refuse to buy glasses every three months. I'll just keep the magnifying glass near.
I have balance problems too Birdbomb. Friday I fell and had to have some staples in my head.
I have balance problems too Birdbomb. Friday I fell and had to have some staples in my head.
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Dang, Jake!
Did you get your arm healed up yet or are you still in a cast? When I broke my arm in Nov 02, my cast didn't come off until the end of Jan 03. Blah!
My vision did the same as you described Jake. But now the prednisone has given me cateracts add halos to that.
Dilantin affects the brain stem and does some evil things that are not reversable. But it kept those TC out of my life! I'd take it again in a heartbeat if my seizures started up again.
Did you get your arm healed up yet or are you still in a cast? When I broke my arm in Nov 02, my cast didn't come off until the end of Jan 03. Blah!
My vision did the same as you described Jake. But now the prednisone has given me cateracts add halos to that.
Dilantin affects the brain stem and does some evil things that are not reversable. But it kept those TC out of my life! I'd take it again in a heartbeat if my seizures started up again.
I feel better, I'm on my third pair of glasses and they spend a majojority of the time on the top of my head. All I want to do is see normal! I'm so sorry you had the head injury. Are you OK? I can only attest to being on Dilantin for ten years at a time becaue it has been "my drug."
My issue is seeing normal to total blurry, I'll let you know what I come up with.
One question for Birdbomb, I have a brand new bike and I can't ride it, I feel like the the bike is standing sideways, is that normal?
My issue is seeing normal to total blurry, I'll let you know what I come up with.
One question for Birdbomb, I have a brand new bike and I can't ride it, I feel like the the bike is standing sideways, is that normal?
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You know Kam, I don't know if that's an effect from the Dilantin, but Ranman had some excellent information, You might want to send him a PM
http://www.coping-with-epilepsy.com/forums/f22/long-term-effects-dilantin-532/
http://www.coping-with-epilepsy.com/forums/f22/long-term-effects-dilantin-532/
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Jake
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Yep, I'm out of the cast and in my second month of Physical Therapy. I go for a bone scan next week. The doc said my wrist will never be the same and he doesn't expect the pain to be much better. He started me on Celebrex to go with the Duragesic and vicodin and whatever else I can find to take.
Dilantin is a WICKED drug, but it does work for me. I've been on it for 40 years.
Dilantin is a WICKED drug, but it does work for me. I've been on it for 40 years.
Stacy
Your Hostess
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I take Dilantin too... and hate it. it's tearing up my teeth. i used to wear glasses, but got the PRK surgery. It's the one where they actually cut your prescription onto the lense of your eye insead of cutting a flap with a laser and then fixing under the eye. I see much better. I'm so glad I did it. Sometimes I do not see as well as I'm supposed to, but I don't have to wear glasses anymore. I (eye)am supposed to be 100% healed at the end of the summer.
Dilantin? Problems with vision?
Let me count the problems with Dilantin, 1) anti-depressant levels, 2) gums, 3) estrogen levels (don't ask), 4) vision,5) ability to concentrate. Let's see did that cover everything? Oops, no I forgot one: simple partials anywhere from 8:30 PM to 8:30 AM with no patterns and wrecked sleep most nights. Thank god I am finally off that ****.
r97
Let me count the problems with Dilantin, 1) anti-depressant levels, 2) gums, 3) estrogen levels (don't ask), 4) vision,5) ability to concentrate. Let's see did that cover everything? Oops, no I forgot one: simple partials anywhere from 8:30 PM to 8:30 AM with no patterns and wrecked sleep most nights. Thank god I am finally off that ****.
r97
Sorry, haven't logged in lately. Seems like I'm not the only one with vision issue. I never heard of the eye surgery you had Stacey, what do the initials stand for? I only had the eye surgery to correct the lazy eyes when I was seven. I went to my neuro and she wants to get the "free" Dilantin level to see where I really stand, she said the vision should only be a problem if you're at a toxic level and I'm nowhere close (6.8 which is not the "free" level). Had that free level taken two days ago so I'll have that info soon. She feels that my "E" control w/ Dilantin isn't broken so let's not try and fix it by changing meds, and let's look at other areas. She ordered an MRI with & without contrast and she want's to focus on the occipital lobe. She also mentioned that in rare cases on continued use of Dilantin, she has come across Glaucoma, she gave me an Opthamologist that specializes in neurological issues, so I am trying to make an appointment with him as well. Birdbomb, I'll have to check with Ranman too and see if he has heard anything about this. Thanks.
Had an MRI and everything is perfect from the scar tissue before & after chemo and radiology. Glaucoma is not an issue. My neuro asked me if I was on the "red form" yet of Dilantin and I said "No". She said as soon as you see the change of color in Dilantin, call me often. She has a patient that was normally in the 20's go to 42 and my highest was 38. It took her patient four hours and very close to a grand mal; to break through to a theraputic range. She does not agree that the new Dilantin is a good sign...
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I didn't have ANY side effects with
Dilantin (Phenytoin) for years I've
been on it ... until it finally took its
toll upon me and that was .. it wrecked
a havoc on my teeth and gums.
I had to think if I had vision problems
with Dilantin and the only time I can
recollect was ONLY WHEN I was on
other AED's - especially with Dopey-
Kote (Depakote) was when my vision
was blurred; but I was lucky that
Dopey-Kote was short lived and my
vision returned back to normal.
BUT - even before I was on any
anti-convulsants (AEDs) I had visual
problems:
Brief Moments of:
1) 3-D going flat
2) depth of field / perspective lost
3) loss of color / hue - things would
be in shades of gray / black & white
(this also includes the loss of ability
to see blends momentarily)
4) visual distortion - larger/smaller
(aka Alice in Wonderland syndrome),
fixed objects moving, fixed objects
that are straight - being warped
* I had to attend therapy for this
problematic issue which took years;
while these episodes happened, they
gave me headaches - depending on
how severe the hit was the headache
would range from mild to extreme.
I had to learn how to deal with this
temporary brief loss which would last
anywhere from 2 to 20 seconds long.
And one being permanent nerve
damage - neurological:
5) night-blindness that gradual in
a progressive manner where by the
time I was about 23 years old I was
nearly completely night blind but it
was not because of the medication,
it effected me whether or not I was
on AED(s).
Dilantin (Phenytoin) for years I've
been on it ... until it finally took its
toll upon me and that was .. it wrecked
a havoc on my teeth and gums.
I had to think if I had vision problems
with Dilantin and the only time I can
recollect was ONLY WHEN I was on
other AED's - especially with Dopey-
Kote (Depakote) was when my vision
was blurred; but I was lucky that
Dopey-Kote was short lived and my
vision returned back to normal.
BUT - even before I was on any
anti-convulsants (AEDs) I had visual
problems:
Brief Moments of:
1) 3-D going flat
2) depth of field / perspective lost
3) loss of color / hue - things would
be in shades of gray / black & white
(this also includes the loss of ability
to see blends momentarily)
4) visual distortion - larger/smaller
(aka Alice in Wonderland syndrome),
fixed objects moving, fixed objects
that are straight - being warped
* I had to attend therapy for this
problematic issue which took years;
while these episodes happened, they
gave me headaches - depending on
how severe the hit was the headache
would range from mild to extreme.
I had to learn how to deal with this
temporary brief loss which would last
anywhere from 2 to 20 seconds long.
And one being permanent nerve
damage - neurological:
5) night-blindness that gradual in
a progressive manner where by the
time I was about 23 years old I was
nearly completely night blind but it
was not because of the medication,
it effected me whether or not I was
on AED(s).
Thanks for the link, I read that article, looks like something I may pursue. Trying to get into this "neuro-opthamologist" is unreal, end of March is the soonest, he must be good. Does anyone feel severe pressure on the eyes that if you close them and rub them to relieve the pressure that you see what appears to be snow on a TV set or big bright circles? Brain, what kind of therapy did you do, what it at a neuro's office or did you have to see an opthamologist?
Unable to see
I had a major accident two years ago and incurred a traumatic brain injury. Part of my frontal lobe was removed as a result. On May 30, this year, I had my first seizure. I since have been on Dilantin. I have been waiting to see a neurologist to adjust my dosage to the proper level and am hoping that some of these side effects will diminish. First of all, I am constantly tired now. I take the medication at night but I am still tired the entire next day! My biggest problem is that I loose vision. I can read for a while but it will eventually become so blurry that I can not see the writing anymore! This is making work next to impossible. Does this go away or is my dosage too high? Got any suggestions?
I had a major accident two years ago and incurred a traumatic brain injury. Part of my frontal lobe was removed as a result. On May 30, this year, I had my first seizure. I since have been on Dilantin. I have been waiting to see a neurologist to adjust my dosage to the proper level and am hoping that some of these side effects will diminish. First of all, I am constantly tired now. I take the medication at night but I am still tired the entire next day! My biggest problem is that I loose vision. I can read for a while but it will eventually become so blurry that I can not see the writing anymore! This is making work next to impossible. Does this go away or is my dosage too high? Got any suggestions?
Just from my personal experience, so don't take this 100% seriously, you need to reduce the dosage and / or get off the dilantin. When I took dilantin, I was still taking Lamictal and Keppra and the trio of them made life nearly impossible. My vision, while not all that great to start with, was the least of my worries with the dilantin.
Keep this one thought with you no matter what kind of neurologist you work with: everybody handles different drugs differently. Dilantin is cheap (in more ways than one), but is it the best medication for what you need it for? Ask questions if you are not clear on what they are telling you. And make darn certain you are clear. If they talk in circles or in medical jargon, get another doctor.
My opinion based on 30 months with Neurologists.