Had first time seizure at 51 years old. no family history and 3 months later and every test in the world still don't know what or why. Lost my drivers license and have been told I need to be seizure free for 6 months. On top of it all when I had the seizure I fell and broke my shoulder in three places. So now I can't work, can't drive.Rehabing my shoulder and trying to find out what I had and if it is going to happen again. Doctor has me taking Dilantin 200 mg in the morning, 200 in the afternoon and 150 at night having a hard time keeping the dilantin levels stable and I am not enjoying the side effects. Tired all the time shakey, still just trying to keep a positive attitude.
new trying to find out whats up and get DL
- Thread starter wagner57
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Hi W57, welcome to the forum. :hello:
My wife has had her share of troubles keeping Dilantin levels stable too. One thing about Dilantin, it requires protein to bind to. If you aren't getting enough protein in your diet, it may not be metabolizing properly. Also, Dilantin metabolizes in the liver. I don't know if you are drinking alcohol, but that could interfere with it too I think.
My wife only had problems with side effects from Dilantin when her blood syrum levels were in the toxic range (ie. too high), but everyone tolerates AEDs differently.
My wife has had her share of troubles keeping Dilantin levels stable too. One thing about Dilantin, it requires protein to bind to. If you aren't getting enough protein in your diet, it may not be metabolizing properly. Also, Dilantin metabolizes in the liver. I don't know if you are drinking alcohol, but that could interfere with it too I think.
My wife only had problems with side effects from Dilantin when her blood syrum levels were in the toxic range (ie. too high), but everyone tolerates AEDs differently.
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Hi Wagner57,
Welcome to CWE!
That dose of Dilantin sounds pretty high to me, especially after just one seizure. Too high a dose could explain the fatigue and the shakiness. After my very first seizure I was also prescribed Dilantin, 400mg day -- it was way too high, I was very unstable on my feet, exhasuted, and my eyes would shift back and forth (nystagmus). After consulting with the neurologist, I decreased my dose and ended up being seizure-free on 100mg a day.
If you do need that high a dose to be seizure-free, then perhaps Dilantin isn't the right drug for you, given the side effects. Either way, it's worth discussing with your neurologist.
I hope your shoulder heals soon. I dislocated my shoulder twice during seizures, and ended up needing surgery to repair torn cartilage. No fun, I sympathize with you.
Best,
Nakamova
Welcome to CWE!
That dose of Dilantin sounds pretty high to me, especially after just one seizure. Too high a dose could explain the fatigue and the shakiness. After my very first seizure I was also prescribed Dilantin, 400mg day -- it was way too high, I was very unstable on my feet, exhasuted, and my eyes would shift back and forth (nystagmus). After consulting with the neurologist, I decreased my dose and ended up being seizure-free on 100mg a day.
If you do need that high a dose to be seizure-free, then perhaps Dilantin isn't the right drug for you, given the side effects. Either way, it's worth discussing with your neurologist.
I hope your shoulder heals soon. I dislocated my shoulder twice during seizures, and ended up needing surgery to repair torn cartilage. No fun, I sympathize with you.
Best,
Nakamova
skillefer
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Hi wagner! I'm also on Dilantin. When I was first starting it, I was having a hard time getting enough in my system. Then I found out that Dilantin's absorption is effected by calcium. so if you're taking a calcium supplement, or take in lots of calcium in your food or drink, you might want to cut back. After a month of taking it @ 100 3x day, my levels were at 5. My meds were upped to 100 4x/day and I quit taking the calcium supplement. My levels skyrocketed to 29. (that's toxic) So they cut me back down to 100mg 3x/day. Your levels sound kinda high.
Crystal11
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I took Dilantin after having major psychological reaction to Tegretol XR. I noticed that Dilantin just didn't work at all for me as if i wasn't taking anything at all. I thought I was lucky to not have troubles with meds like my twin did. I changed over to Tegretol XR 600mg along with Keppra XR 3000mg a day. As long as another med is together with Tegretol XR I don't seem to have such an odd psychological fear or reaction to Tegretol.
My Twin has Epilepsy too and she took Depakote and it was too high in her system even though neuro gave it to her- just didn't process the right way.
Good luck with meds and hope you're feelilng better soon.
Crystal
My Twin has Epilepsy too and she took Depakote and it was too high in her system even though neuro gave it to her- just didn't process the right way.
Good luck with meds and hope you're feelilng better soon.
Crystal
dfwtexas
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Hi and welcome to our group. You will find this is a friendly, supportive group. I started having seizures at age 47...a little over a year and half ago. My neuro said he suspects my seizures were a result of either multiple infections I got after a traumtic injuries and/or the IV antibotics I was on for 2 years. However that is only his educated guess...most seizures disorders cannot be diagnosed why. This wonderful community has really helped me deal with the diagnosis and helped me understand all associate with having seizures. I am on Keppra. If you are having trouble with the meds you are on, you can always discuss other med options with your doctor.
jenn
jenn
RobinN
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Wagner - welcome.
I know you are working hard to become stable on medication. I want to suggest that you ask yourself what other symptoms were you having at the same time as your first seizure. Perhaps something that has been going on over time. You were most likely seizure free for 50 yrs, and there was something that has changed in the last few years that has lowered your seizure threshold. If you can consider this you might find some answers on ways to raise your threshold higher so that you don't have the symptom called seizure.
Any flu shots, intestinal distress, migraines, etc?
I know you are working hard to become stable on medication. I want to suggest that you ask yourself what other symptoms were you having at the same time as your first seizure. Perhaps something that has been going on over time. You were most likely seizure free for 50 yrs, and there was something that has changed in the last few years that has lowered your seizure threshold. If you can consider this you might find some answers on ways to raise your threshold higher so that you don't have the symptom called seizure.
Any flu shots, intestinal distress, migraines, etc?