Post Surgery and the ditching Keppra

I'm kind of in a funk right now, and I'm wondering if any AVM Survivors here have gone through the same thing.

I had a craniotomy back in September 2012 for an AVM removal. Thankfully, it was a successful removal. I've been on Keppra since May 2012, and am currently on a higher-than-normal dosage since I had a few seizures the week after surgery.

I've become increasingly aware (or at least suspicious) that taking Keppra has reduced my ability to think clearly. Connecting ideas takes me longer than usual, I often have trouble coming up with the word I want to say (whereas I used to be extremely verbose), and generally I just feel stupider than the average bear. Like most people, I used to think of myself as smarter than average. This is kind of a depressing switchover.

My question to those who have gone through the stages of surgery and recovery: did you experience these same sorts of issues? If/when you were allowed to stop taking Keppra, did you notice these issues going away?

Hi, Chris, there is a lot of variability in how people respond to anti-seizure medications. There are many choices for anticonvulsants, and your doctor should be able to advise you about tapering off of Keppra and onto another medication. This has to be done under medical supervision, as just quitting the Keppra cold turkey will increase your chance of seizures and may give you other unpleasant symptoms.

Chris, I've been on the generic of Keppra (2,000 mg) for the past 5 years. Please don't try to cut back before talking to your doctor. I tryed and had a grand mal seizure, so I'm very careful to take it at the right time everyday.

After I had my brain bleed, I was tested by a neuropsychologists. My diagnosis was Aphasia, due to the brain damage from the bleed.

If you read about Aphasia, it may be the cause of your problem having the reduced ability to think clearly and coming up with the words you want to say.

I would talk to your neuro doc to see what he/she thinks. It's been 5 years since my bleed and thankfully thinks have improved. Stay Strong and Stay Positive! Louisa

Oh don't worry, Louisa, I'm not thinking of going cowboy on my own medication. I was only thinking of urging my doctor to reduce my dosage over a shorter period of time. Like Dancermom said, quitting cold turkey can give you a high risk of a seizure, and I'm willing to do anything to keep those from happening (since they're the reason behind my temporarily not having a license). I'm on 750mg right now, and the plan is to reduce by 250mg every 3 months.

I still wonder though, because I've had a couple nights where I forgot to take my medication, and aside from feeling a little fuzzy, nothing bad happened.

Louisa, did you have to request a test for Aphasia?

Chris, glad you didn't not to try what I did. I had asked my neurosurgen if I had to take Keppra forever and he said that perhaps they would reduce my dose after 2 years. So at the 2 year mark, I tried to reduce the dosage myself (Not cold turkey). BAD, BAD idea. Glad you are working with your doctor to try to reduce your med. Because of my grand mal because I reduced the meds, I was told that I have to stay on it for the rest of my life.

As far as the testing, I believe the neurologist at MGH requested that I be tested by a neuropsycologist. I believe I was told that it is the only way you can tell where the bleed damaged your brain. If you look at my profile, it is there saying the results of the test. Ask your doctor whether he thinks the Keppra is causing the problems you are experiencing, or should you have a neuro test.

Hi Chris, my son had his avm removed and also was put on keppra. He had issues with understanding information as it was given. We had him tested with a neuropsycological evaluation which showed deficits in processing info, which was associated with the avm removal. Luckily he hasn't had any seizures and his EEG in November was normal so we are told this November he will have another EEG.If that EEG doesn't show any abnormalities he will be able to come off the Keppra. Hope that helped you..

Hi Chris, I started taking Keppra May 2011 and they kept increasing my dose until I was taking 2,000mg a day! After my surgery in August 2011 I felt like the Keppra was fighting my body. I lost 25lbs in 3 months, could barely eat, couldn’t concentrate, and the littlest bump would cause a major bruise! I hated it and I just knew it was the medicine! I was finally slowly taken off and haven’t taken it since October 2012! I had no problems besides, like you said, being a little fuzzy headed but that finally went away! I haven’t noticed any of the above symptoms since!

750 mg is not above average for dosage. I'm on 2000 mg a day and I was told that's a low dose (but every dr has different opinions). It blows. In fact....I forgot to take my meds today. Oops.... It takes a few missed doses to notice any real significant change. I've only missed a dose here and there, only notice slight differences like fuzzy thoughts, wobbly steps but I'm hemiparetic so it's just increased imbalance...
As far as I know, from this site and my own experiences, keppra has more emotional side effects than your actual..I guess you could say, mind[?] I know my thoughts have changed in terms of what my head chooses to process and how but I associate that with my bleed and the crani more so than any medications.
Since I noticed the changes in memory, I started out with games. It sounds stupid, but I started with those hidden objects games on Facebook. I played this one called Gardens of Time (I think that's the one) because the objects were always hidden in the same spots and it was timed so it kept my mind moving because I kept trying to beat my own times lol. I really enjoyed it until they kept asking me to add more stupid neighbors. So then, Idk if you have a Kindle or any type of tablet but I downloaded a bunch of word games (only free ones) and they are pretty good. Kept my mind working. But my problem isn't words, it's numbers. So I downloaded this app called Cross Me, it's a Japanese numbers game like Sudoku only it draws out pictures on a grid that can get really big. It's a $5 app but hell it works great for me. It involves a level of math but nothing extreme and I think it helped my mind find a bit of focus. My thoughts can be jumbled but not as near as bad as before. Luminosity has a members fee, so I can't say anything about it except I heard it was a good site. But games, man, they help a lot more than I would have ever thought and there are apps out there that you wouldn't think would help but they actually do. Good luck:)

Hi Chris - I think that I fall in the weirdo category b/c I’m not on Keppra; however, as far as my ability for what I formerly considered my tech. prowess, it’s clearly not so much anymore.

We all change; however, this means that we might acquire new strengths as well as lose old ones. As they say, when one door closes, a window opens.

I’m on Keppra currently (2500 mg) and haven’t had a seizure in over a year. The symptoms are minor, I’m not sure if its because of the stroke or not. I feel like I’m tired all the time and my memory isn’t great. Good luck to you!

Hi Chris,

I've been off of Keppra for about a year now because of the side effects. My AVM was removed back in 1985 and I was on Dilantin & phenobarbital. It did take me a while to regain my memory & thoughts. I felt kind of stupid all the time. I started working a new job 4 months after and it was a real challenge. I don't know if it was easier for me because I was only 20 years old. I would talk to your dr. and try a different medication.
Hang in there.

I guess keppra is different for everyone as im reading.I myself cannot think clearly as well and I now have panic attacks.I take 3000 mg a day while I was pregnant I took 4000 mg.I do now have emotional issues donto everything.I am currently avm free.I wish the best for you:-)

Hi Chris and Louisa, Ive been on Keppra for 1.5 years and on a dosage of 3000 mg daily. I felt that my dosage was high, especially as my aim is to drive again and thus, wanted to reduce. My doctor says its in the normal range (with my type of brain AVM)and keppra doesnt hinder me to reach my goal to drive again. I take Keppra to avoid seizures. I have NOT had (touch wood) a seizure thus far and my attention span has been good. So...maybe, you dont have to reduce the dosage. When I had my cerebral hemorrhage, I was diagnose with aphasia. As Louisa mentions, maybe it has to do with this?

Speak to your doctor about it as, as you said, you're willing to do anything to keep seizures from happening.

@ Louisa: aphasia has different levels. For me, thinking clearly is fine but getting the words from my brain (the easy part for me) to the verbal words is still difficult. But they say, over time, it gets easier :-)

Stay strong, Fighter

It's been 5 years since my brain bleed, Fighter and I am glad to say that my aphasia has gotten better! Stay Strong and Stay Positive, dear Friend!

Hey guys, here's an update. I went looking for threads about Keppra again, and found my own!

So, I was off Keppra for... 6 months, I think? I was down to a half pill every 4 days when I saw my neurologist, who told me that the amount I was taking was doing absolutely nothing at that point.

Fast forward to last week, where I greeted the Fall season with my first seizure in two years! I'm back on Keppra for the time being, at 500mg twice a day. It's been long enough that I don't remember exactly what it felt like last time, but it still seems weird to me.

Last week: felt "out-of-it," like I was walking through hallways full of fog. I'm not sure how much of that was the after-effects of the seizure, though. It was a gran mal and lasted about 2 minutes.

This week: I feel like I'm having more "lucid" thinking. I get tired more easily, but I also have a hard time getting to sleep at night because my mind becomes active. I'm also remembering places and events that I haven't thought about in awhile, and wouldn't think I would normally be able to recall as vividly.

Has anyone else experienced weird improvements or changes in their memory when jumping back on Keppra?

That is really interesting, Chris. You should probably start a new discussion to get feedback on this -- just copy and paste what you have already written. It's nice to have you back on the site, but I am really sorry about the seizure. It seems to happen to people that way -- taper down, think you are home free, and then bam. I'm glad you weren't injured. Does this mean driving is out for awhile?