Dilantin side effects

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runbikegarden

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I had my first seizures last fall while sleeping (at age 49) and have been on Dilantin for about 7 months now. I have not had a seizure since which of course is great. But, I am worried about the side effects of Dilantin. At first I just thought I was adjusting to it but now I think otherwise. My main concern besides fatigue and dental problems is that I have these odd episodes. I might be running, or on the phone, or just chatting and I suddenly feel confused and if I am doing the talking, I have to stop because I can't concentrate enough to put the words together and if someone else is talking, I hear the words they are saying but I can't follow it. And then it stops. It lasts maybe a minute or two but I am completely dumbfounded during that time. I can usually sense that it is going to happen. Physically I am fine. When it happened on a long run the other day, I was able to keep on running but couldn't continue the conversation. I've yet to find anyone mentioning this but "mental confusion" is listed as a side effect of Dilantin. I'd say that's how I feel. So is what I describe what they mean by mental confusion? Has anyone else had this? I did mention it to my neurologist and he wasn't too concerned since it wasn't happening everyday. But it happens often enough for me. I am by the way starting the switch to lamotrigine more for dental reasons but that will take a 2 month transition. Any thoughts out there? Thanks!
 
runbikegarden,
You may be experiencing mini "breakthrough" seizures. I was on a relatively low dose of Dilantin after my first seizure (at age 39), and had similar "brain skips" to what you describe. My neurologist upped my Dilantin dose and the episodes ceased. It's just as well that you are transitioning off the Dilantin since it can potentially cause some serious problems over the long term. I'm also currently transitioning to Lamictal (Lamotrigine) after an unpleasant stint on Zonegran (Zonisamide).
Best of luck,
Nakamova
 
Thank you so much for that reply. Nice to know I'm not going crazy and you actually had a word for it!
Amanda (runbikegarden)
 
Hi - I developed epilepsy when I was 46 and Dilantin was the second AED I tried. It didn't help a bit and it caused fairly severe osteoporosis *yikes* and I've been taking Fosamax for years to correct that. ~sigh~ more meds....just what I need.
Best wishes .... I hope some/any med stops seizures for you.
 
Thanks. Osteoporosis was another good reason to switch meds. I haven't seen much written about epilepsy starting in older women. I've alway wondered if there was a hormone component to all this. Best wishes to you.
 
Hi Amanda, I agree with Nakamova, what you described sounds like a complex partial seizure to me.
 
Thank you Bernard. I looked up complex partial seizure, which led to simple partial seizure and bingo! there it was: Psychic seizures:

>These seizures change how people think, feel, or experience things. They may have problems with memory, garbled speech, an inability to find the right word, or trouble understanding spoken or written language..

I feel better just knowing what it is.
Thanks again
 
Hi Amanda --
One more thing: the "mental confusion" side effect of many of the anti-seizure drugs tends to manifest as more of an overall feeling, rather than in an intense sporadic manner. That is, folks may feel that memory, recall, and vocabulary are less sharp than in the past, or that multitasking is harder. (As an example, a few months ago, I couldn't remember the word for "post office" and had to come up with "mail house" instead.) That said, everyone's medication experience is different. The most important thing is to keep track of how you are feeling, (and/or have a friend keep track too), and if the side effects become problematic, definitely contact your neurologist to see what your options are.
Best,
Nakamova

p.s.: re: the hormonal component as a trigger for late-onset epilepsy: in my case, I think it *may* have been related to a traumatic head injury when I was 6. Then it took extreme stress (and perhaps a minor aspartame component) to create the perfect storm of conditions to push me over the edge 33 years later...
 
Nakamova said:
Hi Amanda --
One more thing: the "mental confusion" side effect of many of the anti-seizure drugs tends to manifest as more of an overall feeling, rather than in an intense sporadic manner. That is, folks may feel that memory, recall, and vocabulary are less sharp than in the past, or that multitasking is harder. (As an example, a few months ago, I couldn't remember the word for "post office" and had to come up with "mail house" instead.) That said, everyone's medication experience is different. The most important thing is to keep track of how you are feeling, (and/or have a friend keep track too), and if the side effects become problematic, definitely contact your neurologist to see what your options are.
Best,
Nakamova
Click to expand...

:cheers:

I have had E for 27 years (started at 20) and have been on Dilantin ever since. What Nakamova describes above sounds accurate. Though the side effects of dilantin (and most AEDs) are hard to separate from partial seizures, the partial seizures are usually more of a contained incident versus an overall feeling. I have had both plenty of times over the years or so I suspect.

My dilantin is backed up by keppra and I have been tonic-clonic free for almost 5 years. I do have some issues with partials, but at least I am not going into full TCs.

I am in a quandary with the dilantin. It has worked fairly well over the years and I lead a pretty full and normal life. However, with the hope of living another 30-40 years (now 47), I wonder how long my body can hold up against the dilantin. Liver damage is my major concern. Still, do I want to leave the security of a med that I know is keeping me functional? :ponder:

Best of luck to you on your new med. :e:
 
Hi Nakamova,
Yes I have that type of general mental confusion also, just as you described and I've started to keep track of things mostly because of the changing medications. Also my husband has been taking note of changes as well which is very helpful.
But the episodes I originally described are very distinct and brief and as I replied to Bernard the definition I found on the epilepsy.com site for simple partial seizures described it really well.
These seizures came out of blue so I guess I will always wonder why.
Thanks again,
Amanda
 
So many good responses. You've all given more clarity then I'm use to these days! Glad the dilantin has worked so well for you and I am really happy to be seizure free myself. Its a little scary to walk away from something that for the most part works but between liver damage potential, bone density and teeth issues, I'm ready to take my chances on something new.
Good luck!
Amanda
 
runbikegarden said:
... but between liver damage potential, bone density and teeth issues, I'm ready to take my chances on something new.
Click to expand...

All AEDs have side effects. Dilantin is an old drug and the side effects are well known. Newer drugs also have side effects, but folks are still discovering a lot of them.

IIRC, every AED is metabolized in the liver except for Keppra. Keppra can cause (or exacerbate) problems in the kidneys though.

Most AEDs cause problems with vitamin/mineral imbalances/loss.

:paperbag:
 
Buckeyefan,

are you insinuating that complex partials and simple partial seizures are in some way not as severe as tonic clonic seizures? I can reassure you that when you reach the point where you are heavily medicated and are having between 11 and 20 of these seizures a DAY (up to 60 a day without medication) IT CAN SEVERLY IMPACT ON LIVING A NORMAL LIFE.
 
Last edited:
Hi Loudmouth --
I doubt that Buckeye was implying that tonic-clonics are "worse" than any other kind of epilepsy. That's not a judgment call anyone of us would make. Even folks with the same kind of epilepsy have very different experiences. I have tonic-clonics, but I think my situation is way better than a lot of folks -- now don't accuse me of being superior! :) Anyway, it sounds like you're having a pretty tough time. I hope things get better for you.
All best,
Nakamova
 
Loudmouth said:
are you insinuating that complex partials and simple partial seizures are in some way not as severe as tonic clonic seizures? I can reassure you that when you reach the point where you are heavily medicated and are having between 11 and 20 of these seizures a DAY (up to 60 a day without medication) IT CAN SEVERLY IMPACT ON LIVING A NORMAL LIFE.
Click to expand...


No - I sure did not mean to compare my situation to yours - apologies. :embarrassed:

I was speaking more from my experience and life. My partials are minimal and not daily events. I am still able to function pretty well when I have them. With my tonic-clonics, I am down and out.

I am pretty heavily medicated as well with 550 mg phenytek (dilantin) and 1500 mg of keppra. Plus, pills for low iron, low thyroid, and low B12. All of these situations cause fatigue which are compounded by the AEDS.

I fully understand the impact of your seizures on your life. I was trying to draw a comparison of myself with or without dilantin and the long term decisions for all of us on AEDs.

:ponder:
 
OK

Sorry Bukeyefan,got the wrong end of the stick there, had a bad day yesterday...moral of the story...note to self....dont post snooty replies when you've had lots of seizures that day! SORRY!!
 
No problem

On problem LM, we all have those days. Anyone with E understands. I had a great day yesterday, but this morning, my body feels a little out of sorts. Not seizures, just slow reaction time. A little slow on the thinking. The kind of day when I let my wife drive.

Best of luck to you. :)
 
Back to the Dilantin question.

Has anyone had liver problems from dilantin or any other AED?

My liver enzyme levels were slightly higher than normal during my early years of dilantin use, however they are pretty normal ever since. I usually have them checked every 6 months.
 
Yeah, I went into early liver failure with tegretol, had to have a short stay in ICU and still have to have monthly blood tests done (sure the nurses are all closet vampires :roflmao:)
 
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