I'm new here...

[hillygirl75]

Looks like there's so much I can relate to with most people on this forum.
Hope to learn more and figure out how to better prevent seizures. Also, I'm considering changing meds because I've been on Dilantin for 20 yrs now. My memory is not good due to prolonged use of Dilantin. However, I am scared to jump to another medication....hopefully I get more info on how it works for others that have made this transition. I'm glad to be here ya'll :hugs:

 

[N Sperlo]

Hi, Hilly
Its not hard to find someone to relate to here hahaa. Changing medicine is different for everyone, so that is something you really have to communicate well with the doc during. People like me can drop one med and pick up another and be fine with it, but others may have some major reactions from the same actions.
I really can't imagine such a bad memory. Sure, I have a lapse every once in a while, but that's normal for anyone. How bad IS your memory?
Don't worry about the switch. I know there are plenty of others here that have switched medicine that can talk to you about it. A change can be nerve-racking.

Its good to have you.

 

[JeffD]

Before my first sz my memory was really good. Now even remembering the most important things is hard. It was in the ER after my first episode that they started me on Dilantin. That only lasted for a few months before I asked for a change. Not only was my memory shot but my thinking was muddled. They changed me to Tegretol which worked great and I didn't feel nearly as out of touch.

My memory has never been the same. My doctors have all said it's my temporal lobe epilepsy... something like 'the memory librarian is out to lunch.' I wish she'd return to work.

Meds changes are unnerving for any long term condition. But sometimes the change is worth the risk. Good luck to you.

 

[valeriedl]

After my first seizure I didn't remember almost everything that happened in the 10 years before it. Usually too if I have very bad seizure I may forget things that happened that day.

My memory isn't good now in general. After around 6 months things start to fade away. I laugh because there's no such thing as a repeat tv show for me because by the time it's shown again I don't remember anything that happened during it when I saw it the first time. We like to watch a good bit of mystery/crime shows and I'll get mad at my husband because when we start to watch the show he'll say "Oh this is the one where so and so get's killed"

I'm alergic to Dilantin so I'm unable to take it but I don't know if my memory is bad because of one of the other meds that I'm on or if it's just from having epilepsy in general. If you think you'd like to get off of the Dilantin talk to your neuro and see what he thinks.

 

[Nakamova]

Hi hillygirl75, welcome to CWE!

The med transition may seem scary, but the prospect of getting your memory back on track should make the transition worthwhile. The transition can and should be done very slowly, in tiny increments, so your brain can adjust at every step of the process. Make sure you ask your neuro lots of questions about different meds, side effects, dosing schedules, tapering off and ramping up, etc. You might want to have someone with you at the appointment to take notes. It might also be useful to have a neuropsych evaluation done (if you haven't already). The eval can measure how well your memory is working now, and give you a sense if a new med is helping.

I switched from Dilantin (after just a few years) because of my doctor's concerns about long-term side effects. I'm now on Lamictal, and have been seizure-free for over 5 years. The cognitive side effects seem to be minimal. I hope you can make a similar transition.

Best,
Nakamova