Seizure Medication Discussion

So I just thought about opening dialogue & discussion about how many people are taking the anti-seizure medication Keppra (Levitrasapram) daily or occasionally?? I’ve only had one seizure the day of my stroke 6-7 years ago but that’s the only seizure-related event I’ve experienced. It’s recommended to take 250 mg twice a day which is a low dose for me but I sometimes skip a dose, skip a day or have gone 6 days without taking it and experienced no seizure no problems. I talked to my Neurologist and they want to keep me on it knowing the side effects like “Keppra rage”, depression, suicidal thoughts. I’ve been also thinking if I take the 250 mg once a day and maybe combo supplement that with a Charlottes Web strain CBD oil that will more effectively lower my overall seizure activity. It’s been proven in a recently famous CNN documentary by Dr. Sanjay Gupta. Just want to hear everyone’s perspective! :thinking:

Any thoughts?? @Artem @DickD @Chelsea @Angela4

CNN documentary- WEED - Charlotte's Web Story Medicated Marijuana and Epilepsy - YouTube

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I was put on it for the shortest amount of time possible post my hemorrhage.

My neurosurgeons seemed to have me come off as soon as possible a priority. I had to be put on it for only about one to two weeks.

As far as side of effects, wow - that is some nasty stuff & I am so glad they let me off of this soon. . . I still have a huge pill bottle of it

I don’t know your background, but it seems like you’re AVM is still untreated.

As soon as mine was semi successfully embolized, they let me stop taking it.

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This is a really tough discussion. I would strongly encourage you to speak with your doctor about whether weaning off the keppra is a reasonable plan, rather than skipping doses. In terms of CBD or medical marijuana, not every seizure disorder is going to be responsible to this. Charlotte’s web was specifically designed for a child with intractable epilepsy, who had not responded to any traditional medications.

Also, if the side effects of keppra are problematic, please speak with your doctor. While this med is often a go to med for seizures, it can be mood destabilizing. My daughter, for example, was started and is still on depakote for her seizures, and has done quite well.

In short, please work with your doctor.

Sharon from ModSupport

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After my first seizure 3 years ago, they didn’t put me on any medication. A year later and a second seizure, they put me on 500mg of Keppra twice a day. About a year later I got lax about taking it missing doses at least a few times a week or more and had a third seizure. They attributed it missing the medication. I became more diligent about taking the medication, but two months later I had a major bleed. They upped my dosage to 1000 mg twice a day. I went through radiation treatment 8 months ago and so far so good. My wife says I’ve developed a quick temper but other than that I don’t notice any difference. The alarm goes off on my phone twice a day to keep me on track. I just decided to not screw with it and follow the Doctor’s directions.

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@DewmasterDuce I’ve no idea about this stuff. I’m with Sharon on letting the doctor set a different direction, not least because if it goes a bit wrong, they’ll help get you out of the mess, whereas if you do it without them, they’ll get very grumpy with you.

“Grumpy” isn’t the right word but you know what I mean!

Hi there
I have been on Keppra since my AVM was discovered in 2015 after one seizure. The neurosurgeon put me on 500mg twice a day. I make sure I take it at the same time morning and night. I am going to make an appointment with a neurologist to see if there is any way I can reduce the dosage or wean off it. As my AVM is untreated I don’t like my chances but I will ask anyway. My experience of Keppra is mood swings, weight gain and loss of confidence in decision making. The first couple of years the mood swings were at the top of the list, then that calmed down and it was replaced with being anxious sitting in a car going for a drive and also not being able to find words to explain things and general loss of confidence in certain things. I have thought of asking to change to another drug but it seems they all have their drawbacks. Just to clarify I do have my licence but I don’t drive as I am lucky enough to have my husband drive.

Well all I can say is everyone is affected differently by medication. I’ve been on Keppra ever since my bleed back in 2000. After my first surgery in 2000 was put on Keppra & Trieliptal. At first I think it caused depression and was sleepy for a couple months until my body adjusted to it. 2001 had surgery again to remove damaged tissue that was still causing me to have seizures. So ended up having surgery again. It stopped me from having seizures and went a year without a seizure so they tried to reduce me off my meds but had a seizure. So they figured it was because of damage and also missing some of my brain from the surgeries is causing the seizures. They say my pills sort of fill in the gap and direct the brain cells. Have gone over 10 years without a seizure. Last one I had wasn’t because I forgot my pills but because of generic vs brand name pills. So now brand name only.

I have had one seizure, in May 2018. It was how my DAVF was discovered as it prompted an MRI scan.

My neurosurgeon, neurologist and neuroradiologist were never committal that the seizure was as a result of my DAVF though I had a pronounced visual aura prior to the seizure and my fistula was in the occipital lobe so there they did agree that whilst not certain there was a reasonable likelihood that they were linked.

I was prescribed Keppra shortly after diagnosis, 500mg twice a day. The medication makes me sleepy, quick to be frustrated and I’m not 100% sure but also I think has created a little bit of Anxiety.

I worked with my neurologist in July 2020 to first reduce my morning dose to 250mg and then in January my evening dose also reduced. In the coming days, on the 19th July to be exact, it marks 1 year since reducing my dose and the timeline I agreed with my neuro to reduce to 0.

My view is that there is an increased chance (some abnormal activity was still identified in my EEG post embolisation/treatment of DAVF) that I will have a seizure once I stop the medication fully. That being said, for me it makes sense with the side effects in mind and my age (32) to stop now, otherwise I will be medicating for life.

I’d be interested to hear others experiences as well, my neuro was reluctant but agreed to the above plan, and I did seek a second opinion from another neuro who suggested I stopped taking it much quicker than the above. So I do feel like I’ve been as cautious as possible, though ultimately I want to avoid medicating forever.

Before my AVM diagnosis I was having about 4 seizures a month. As soon as the AVM was identified as the cause I was prescribed Keppra starting on a low dosage of 2 x 250mg a day with a plan to go higher if necessary. The effect on the seizures was immediate and dramatic but so were the side effects. I knew about them but was not prepared for the level of tears, self harming and suicidal thoughts. However these only lasted for about 7 days after onset. I had a further seizure a few weeks later and the dose was upped by half a tablet, with the half in the morning and the two at night to help mitigate the side effects. I had the same side effects but less severe and it helped me to know that they would only last about 7 days which was the case. After my second gamma knife treatment I stopped the half tablet myself with no adverse effect. The neurologists I have seen have given mixed messages about continuing with the drug if the gamma knife obliterates the AVM, but the majority seem to favour medication for life. I am not against this as the benefits of coming up to 7 years seizure free far outweigh the risks of going back to where I was. People have noticed that I am a little more short tempered but I don’t know if that is down to the drugs or age.

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I am very happy to hear you are doing better. Chasing a toddler is enough of a challenge.

I wanted to know if I could have another dose of radiation to see if they could shrink my AVM. I had cyber knife 15 years ago and it did nothing to help shrink the AVM. I was hoping to try gamma knife and see if that would work to shrink it.
My Neurosurgeon put me on Keppra thinking I was having seizures rather than mini strokes. I was on it for one month and became a horrible person. I was the biggest “B” ever. Thank goodness I have a very understanding husband. I have what we call “episodes” where the left side of my face, my left arm go numb and at times slurred speech depending how bad it is. They usually only last about 15 minutes, but while on the Keppra I had one last 3 1/2 hours and a total of 7 episodes. They now are going to send me to a neurologist.

Would be interested to hear how you get on with your neurologist Carol in terms of stopping the medication or not as we have a relatively similar position of having had just 1 seizure.

Whilst not necessarily backed up by any data/science, I do feel that having had just 1 seizure 3+ years ago personally, that I may be medicating unnecessarily. That being said, maybe the lack of a second seizure is due to me having taken Keppra over that time. Will be interesting to see what happens after I stop, from my knowledge so far I think if you can get through 1 year seizure free without medication you stand a much better chance (though of course no guarantee) in the long-term of avoiding any repeat seizures.

I was on keppra after the removal of the AVM in my brain and took myself off of it after a few days. My neurosurgeon said it was fine since I had no prior history of seizure/ didn’t have any after surgery. However, two year after the surgery, I ended up having a seizure and was placed on keppra. Dosage kept changing to keep me at a therapeutic level. It was exhausting at first (I was also pregnant at that time.) I was placed 250 mg then 500mg then 1,000 mg twice a day but my body kept flushing it out too quickly so my neurologist settled on 2,000 mg twice a day. It’s been a good year now that the meds are fully in my system. I’m a complete jerk at times- very irritable, very moody, quick to snap. It was hard to gauge if it was the medication or just life happening (covid, kids, stress, etc…) I never reached out for help with my mood but it became evidently bad… I spoke up to my neurologist and we’re going to switch to lamotrigine later if my mood doesn’t change.

I asked if I have to be on medication since I wasn’t on it after brain surgery for long and she just suggested it was better safe than sorry type of deal. My neurologist mentioned that seizures are unpredictable. People may get only one in their life time, consistently, five years later, or even on medication still etc… really wished side effects were feeling of happiness, fun laughter, pleasant demeanor haha!

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I was on keppra for several years after radiation treatment for my avm. I felt clear, could do sports and hiking, and was a complete jerk. Short tempered, every little problem was a disaster, etc. I found my way out of that stuff through meditation and just being aware. If I dropped a glass, I’d walk away from it until I could handle cleaning it up without stressing. In terms of activity I liked it, and once I got the stress-anger management stuff under control it was quite doable. Then I had a serious allergic reaction to it. A week in the neuro/icu. They had to cut me off it cold turkey. Not fun.

They put me on vimpat, and I couldn’t walk down a flight of stairs unless I could get both hands on a railing. And I had seizures. Doing 550/day lamictal now. No seizures. Allowed to operate a motor vehicle on the public highways. Some side effects, moody etc., but at this point I’ve been on one drug or another for long enough that I don’t remember what it feels like to be clean.

Neurologist said to me, “The people on keppra usually like it, the people around them don’t.”

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I was put on Keppra. I didn’t last longer than a month before my neurosurgeon took me off it. I did not know I could turn into such a “B” til I was on Keppra. My neurosurgeon took me off at 1 month and is now sending me to a neurologist. They can’t seem to make up their mind whether it is seizures or mini strokes. We will see what the neurologist has to say. I feel like a rubber ball being bounced around. I have a very good friend who is an RN and she asked me if with all the doctors I have seen over the past 20 years, if I have seen a vascular surgeon. I have not, but I am going to look into it, since the neurology pathway doesn’t seem to be working out so well for me. I personally feel I am having mini strokes, but I’m not a doctor.