Long term Dilantin user

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

V

Virginia Hunter

New
Messages
3
Reaction score
0
Points
0
I just joined forum today and have been reading to my distress that perhaps my memory issues are due to long term Dialantin? I am 54, have had seizure issues for at least 15 years. I, too, have found myself having problems with my equilibrium, ie, running into the side of doors or being totally disoriented in the dark at night in my own bedroom. This scares me. I lost my 17 year job last year due to reorganization and have no insurance.... My doctor doesn't seem to be concerned.
 
Hi VH, welcome to the forum. :hello:

Memory issues can be related to current AED usage, seizure effects or perhaps long term AED usage. It's really hard to say for certain what the underlying cause is.

Equilibrium on the other hand - that's almost certainly thanks to the Dilantin. My wife struggles with this herself.
 
Thank you, Bernard, for your reply. I suspected my Dilantin was possibly causing my equilibrium issues but have never had anyone to really talk to about it before other than the doctor who sort of did not take me seriously. Having found this forum is a blessing. Thank you and thank you all who contribute here.
 
My doctor always tests my balance. Even if it is a 3 minute visit, he does this. I'm not on Dilantin, but this is pretty much an issue across the board for the medicines. For me, it comes and goes. My memory has always been bad when it comes to words and names, but otherwise I have a great visual memory. You say you are 54, may it is just getting bad. Not that you're, uhhh.. old or anything.

You're screen name really made me do a double take. :D
 
Thanks, Sper, for your reply. When I was under a neurologist's care my balance was always checked but with the GP this has not been the case - for years in fact. I also find myself having what I call silent seizures - I think the forum has a true name for them but I am too new to the site to name it.
I'm very happy to say I'm 54 considering the car accident I was in in 1993 which messed up my neck resulting in fusion on C4,5 & 6... I now am having more issues with my neck and spine and in a lot of pain. I am now uninsured and all of my seizure medications will run out soon which terrifies me. I'm putting my faith in God that some things will work out.
My screen name? I'm not sure why that caught your attention. Childhood nickname.
 
Hi Virginia,

I was on dilantin and to me it seemed to make my seizures more intense and I noticed i was getting gum issues. Where it was hard to bite into an apple. I requested to be taken off of it.

Lets face it, it's hard to determine if a medication is working or not, but if you feel something is just not right, i for one say trust your instincts.

Zolt
 
Help paying for Dilantin

I too am a long-time Dilantin user. It controls my seizures so I choose to stay with it. The worst thing for me is the fluctuation in levels every few years. I can tell it is "happening again" because I begin to have serious balance problems. So I get my levels checked and my doctor and I adjust my dosage accordingly.

I would not want to be without my Dilantin so I do understand your fear.
Pfizer has a program to help with payment DILANTIN $4 Co-Pay Card* that you might want to look into.

Wishing you the best of luck!:hugs:
 
Dolores said:
I too am a long-time Dilantin user. It controls my seizures so I choose to stay with it. The worst thing for me is the fluctuation in levels every few years. I can tell it is "happening again" because I begin to have serious balance problems. So I get my levels checked and my doctor and I adjust my dosage accordingly.

I would not want to be without my Dilantin so I do understand your fear.
Pfizer has a program to help with payment DILANTIN $4 Co-Pay Card* that you might want to look into.

Wishing you the best of luck!:hugs:
Click to expand...
I was on Dilantin for 34 years and it put me in a fog, and my memory was terrible.
I got one neuro to take me off it, it didn't control me and after I came off my memory improved like 90%.

Belinda
 
You must log in or register to reply here.
Back
Top Bottom