Trial to come off med?

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ln1

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Hello everyone,

I am interested in others' experience with a trial of coming off your AEDs. How long were you seizure free before you tried? Did your seizures come back and you had to go back on your medication? When you started taking the med again, had your seizures changed in any way (type, intensity, frequency, etc.)?

My last seizure was a simple partial a little over a year ago. Part of me wants to try to come off, but the other part is afraid of rocking the boat.

My neuro is very open to discussion and providing it's not something that will definitely hurt me, would explore a trial off the medicine if that's really what I want to do.

Thank you for your input.
 
Not long after I got married, I asked my neurologist about AEDs and pregnancy since my gynecologist blew me off. We started reducing meds to begin treating me like I was pregnant. However, it didn't work for me. I've found that if I miss up to two doses of both Phenobarbitals I take, I will have at least one seizure. I was in it until I was 5, then from 16-present (43), which may be why. Everybody's different though; take it slow and work with your neurologist.


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Hi In1,

My Dr. purposely cut my seizure meds because I was having testing done and he wanted me to have seizures. He cut me back on mysoline which is a little stronger than phenobarbital and take my word it was no fun I had seizure after seizure.
Another time just this past March the drug co. ran short of a seizure med I have been taking so I cut it back 500 mg. a day and I ended up having 15 seizures that month until the drug co. got the med back out on the market again.
My seizures didn't change I just had many more. I wish you the best of luck and May God Bless You!

Sue
 
I've tapered off of meds twice, but with no luck -- I had a tonic-clonic about a month after the med was fully out of my system. (That's the only kind of seizure I get, so that wasn't an escalation). My seizures are fully-controlled when I'm on medication, so I;m staying put for the duration.

My neuro was in the loop for the tapers. One thing she recommended was that I have an EEG when my med dose was halfway down to see if abnormal brainwaves were starting to show up. They were, but I decided at the time to keep going. You could ask your neuro about that option if it makes sense in terms of your EEG history.
 
I've been weaned off my meds twice and was ok for about 18 months both times then bang my seizures returned and this year they don't want to be controlled.
 
Thank you all for your input! I've always had mixed feelings about trying to be weaned off, now I'm leaning more toward the side of staying where I am.

I had infrequent seizures up to age 10, then nothing until I was about 26. That lasted for a couple of years. I had no more until 36. 36 is when I started taking Keppra. The more I type, the more I realize since there's really no pattern to my seizures, I'd likely be taking an unnecessary risk by getting off.

I've never taken a medication long term, and I am concerned about the risks of taking an AED for the rest of my life.

Have any of you noticed any changes in your body that you can directly attribute to taking AEDs long term?

Thank you!
 
Have any of you noticed any changes in your body that you can directly attribute to taking anti-epileptic drugs long term?
Click to expand...
It's hard for me to tell since I started taking Lamictal when I hit my mid-40s. Can I blame the aches and pains and vision changes and slowed metabolism on the med or is it just aging? :) One thing that is definitely med-related is low CBC numbers (red and white blood cell count), that I've had since the very first seizure med. I take a B12 vitamin to help. With the Lamictal I developed dry eye and dry mouth. Most of the seizure meds cause bone thinning so I may have that in my future. After about 8 years on Lamictal I haven't noticed any cognitive side effects.

You might find this link http://www.askapatient.com/viewrating.asp?drug=21035&name=KEPPRA&PerPage=60&sort=timelength&order=0 helpful. It's askapatient for keppra, and you can click on the column for duration so that it shows comments from people who have been on it the longest.
 
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