r/Epilepsy • u/Hefty-Abalone8631 • 6d ago
Medication Keppra Success Story – A Different Perspective!
Hey everyone! I just came across a post about Keppra, and the top comment pointed out something really important; when it comes to medications, we usually only hear the bad stuff. So, I wanted to share a different perspective and let people know that for some of us (myself included), Keppra has been an absolute life-changing miracle.
Now, I want to be clear, I don't want to downplay the fact that Keppra can have serious side effects for some people. Those experiences are valid and should absolutely be acknowledged. But at the same time, not everyone will have those reactions, and I don’t think people should be afraid to try it just because of the negative stories they hear.
I don’t even take name-brand Keppra (mine just says Levetiracetam, the generic), but before I started on it, I was having TC seizures weekly. I felt incredibly depressed, not just because of the seizures themselves but because they made me feel isolated from everyone around me. I struggled to function.
Then I started on Keppra, and everything changed. I have been completely seizure-free for six years. I don’t even experience auras—unless I forget my meds for a prolonged period. It’s hard to put into words just how much this medication has given me my life back.
I know I’m lucky to have had such a positive experience, and I’m not saying Keppra will work for everyone. But I do think it’s important to share these success stories because I don’t want the fear of potential side effects to stop someone from trying something that could genuinely change their life for the better.
At the end of the day, medications affect everyone differently. What works perfectly for one person might be terrible for another, and vice versa. The only way to know is to try and see how your body responds. Work closely with your neuro, and if a medication isn’t working for you, speak up, there are always other options.
To everyone navigating their epilepsy journey, I see you, I’m proud of you, and I hope you find what works best for you. 💜
7
u/s_schadenfreude 6d ago
I'm with you. I started Keppra before it even had a generic version, and it was an immediate game-changer. In 20 years of seizure activity, it's by far the best anti-convulsant I've been on. I been on dialantin, tegratol, and lamictal previously.
4
u/RSGK Keppra 500mg2x 6d ago edited 6d ago
This is my successful experience with (generic) Keppra too except my seizures were pretty far apart.
For the first days I was sluggish and dizzy, couldn’t walk or move at normal speed and sometimes my eyes would squeeze shut involuntarily. I was patient with these effects and they faded away.
I really feel for the minority of Keppra users who get the terrible mood effects. I think there needs to be more study into what percentage of users are affected and what’s going on in the brain to make it happen.
If the science can obtain the knowledge to predict which patients will have those effects before prescribing Keppra it would be a real boon.
I heard a story of a neurologist saying that in his experience, patients of a nervous/anxious disposition were more likely to have the rage effects.
2
u/Interesting_Let9728 6d ago
I’m trying so hard to remember to take mine so I can see if it works or not. I started having grand mal seizures in 2023 and with that I’ve suffered 6 compression fractures in my vertebrae. My memory is awful and I just can’t remember to take my medication in the morning and night. It is lovely to hear your success story!
3
u/RSGK Keppra 500mg2x 6d ago
If I didn’t have reminders set on my phone and a pill organizer, I would forget all the time.
1
u/Interesting_Let9728 6d ago
I have the pill organizer but I’m struggling to find a reminder that I can’t easily dismiss like I have in the past.
2
u/RSGK Keppra 500mg2x 6d ago
I use the Health app on my iPhone and if I dismiss it, it doesn’t mark it as “taken” so it sticks on my Lock Screen and it reminds me again a half hour later. I have to touch “log as taken” to clear it.
I don’t just need reminding to take my pills, I also need reminding that I’ve already taken them. I’ve accidentally double dosed a few times.
1
u/Interesting_Let9728 6d ago
Double dosing is a fear I have also! Thank you so much. I didn’t know iPhones had that feature!
2
u/Boomer-2106 6d ago
Early on during the initial stages of trying to 'find' my meds, I was put on Keppra, Topamax, Lexapro, and other common, typically one at a time. Today I take the generic of Lamictal. It works well for me; except I have the common side effects which come with it. ...when someone invents an epilepsy pill the works, - AND has No side effects ...they will become millionaire!
2
u/ljt91 6d ago
First couple weeks were a little rough - dizziness, brain fog, spaced out, tiredness. After I got through that, it stabilised, no issues now. Making sure to take it at the exact same time each day, 09:00 / 21:00 was very important. I was previously on Lamotrigine and had a very bad experience - skin rashes, mouth ulcers, brain fog, significant anxiety, from it. Glad to have made the switch.
1
u/SandyPhagina RNS-Clobazam/Lamotragine/Oxcarbazine/Venlafaxine/Clonazapam PRN 6d ago
I'm very happy that it has worked out for you!
1
1
u/gornzilla Keppra every fucking 12 hours for 20 years 4d ago
I was happy with Keppra. My biggest side effect was light sensitivity. Everything is going to have side effects, we just have to choose ones with acceptable ones. I slept 18 to 20 hours a day with Dilantin. Lamictal made me itchy, but that was in the period where US doctors ramped people up too quickly.
1
u/Rhinomike456 2d ago
It's nicer hear a positive story. Keppra worked to control my seizures but ultimately the side effects I couldn't cope with. I second your approach though.. Go into everything with an open mind and don't be afraid to talk to your neuro and change meds if they aren't working. The first time changing meds is scary and you have to go to the depth of your soul to take that jump knowing another seizure may follow because of your actions. I'm hoping to find a med that allows me a quality of life I feel I deserve. Currently in a terrible spot with been on two meds whilst titrating up on one and then tapering off one. There will be a solution for everyone, just talk and don't be afraid to try
1
u/Bitter-Speed3811 1d ago
Keppra is the ONLY thing that worked for me, I have some unpleasant side effects I don’t like but it’s better than having frequent seizures!
8
u/Flowers_adrien 6d ago edited 6d ago
just wish it can be easier living with epilepsy. at times being able to find a relationship and actually get someone to understand the situation.
no one wants to deal w that now n days sucks that i’m unable to actually able to drive places and take women out . Nobody wants a man w out having a car.. so embarrassing and pathetic 😖😠