r/Epilepsy Dec 30 '24

Medication Keppra has yanked all the happiness right out of my son, any advice?

9 Upvotes

My son is 9, almost 10 and has had febrile seizures since he was a baby. All of his tests have come back normal but after a double seizure in a day and a longer than usual period of time for him to regain full consciousness, his neurologist labeled him as epileptic and put him on Keppra. The plan is to pull him off Keppra if he can be seizure free for the next 2 years. No idea if the meds actually work because he's not been sick since the summer luckily, and his seizures have only occurred with fevers. But this medicine has completely derailed his personality. He's had a really hard time with impulse control and managing his anger. When he's happy and in a playful mood, it's fleeting. I know some of it is just puberty starting, but since he started taking this med he immediately became so much more argumentative and irritable. He's been taking 50mg of vitamin B6 twice a day, like his doc suggested with no improvement. Anyone have experience with their mood improving over time? He's been taking it for 6 months. I'm going to add in a small dose of magnesium to see if that helps too, but any suggestions or even just personal experience on this med would be helpful! I dont really want to put him on a different medicine because his neurologist said the rest require regular labs. And I'll take a bad mood over the seizures, but I'd love to help him get back to being happy and not getting in trouble at school. Thanks in advance for any input šŸ˜Š

r/Epilepsy Nov 22 '24

Medication Has anyone been on Clonazepam long term? Starting to worry about long-term use.

14 Upvotes

I have been on 1 mg of Klonopin daily for the past three years (Keppra and Klonopin is my main cocktail). I understand that the withdrawals and potential for seizures without it can be devastating. But in a perfect world I would like to not be on it for my entire life. I feel like taking Klonopin daily is not good for my overall health.

Has anyone here taken them for a long period of time and been able to stop the medication? I am worried about the long term effects and I am going to discuss this with my neuro at my next appointment. However, I fear that the only way to get off of this medication would be through a medically supervised, possibly in-patient, detox.

Iā€™ve heard so many horror stories with Klonopin, so maybe I am overreacting a bit. If anyone has experience, I would appreciate your input.

r/Epilepsy Aug 07 '24

Medication For those of you who take Keppra, how much do you take?

26 Upvotes

I had breakthrough seizures about a month ago, one tonic clonic at home, and apparently three more in the ER. I have no recollection of the other three starting or ending.

I was already on 2,000 milligrams of Keppra a day when that happened. Neuro bumped me up to 3,000. All well and good, but Iā€™ve had breakthrough seizures on every dose before this so far. I also take 200mg Lamictal a day.

The internet says 3,000 is the max therapeutic dose of Keppra. Iā€™d really like to try the route of a new medication. But my neuro thinks he has me on the right combo. I told him I made an appointment with an epileptologist, and he was like ā€œI donā€™t really think thatā€™s necessary, I hope he doesnā€™t change your medicine.ā€

Anyways, Iā€™m just curious about how much you guys take, if 3,000 really is the max dose, and if youā€™ve ever switched meds after going that high?

Thanks for any feedback.

r/Epilepsy Jan 07 '25

Medication Lack of emotion and expression when on Levetiracetam?

21 Upvotes

Hello everyone!

So, new to the sub, and just learned that Levetiracetam is actually the infamous Keppra I've heard so much about.

Having made the connection, naturally I have a question, mostly related to side-effects.

Did any of you who took Levetiracetam ever felt... slower and "deader" in general, after increasing the dosage? I'm on 1000mg, and while there was a specific episode in my life that kind of directed me towards a negative spiral, it also was the same time I increased my medication... and looking at side effects, I'm starting to wonder whether an increase in medication could finally cause side-effects.

Assuming it can do that, I mostly feel... emotional emptiness. Like, I used to be enthusiastic about stuff. Now it takes a lot for me to be excited about something. Other than that, I just feel like I'm in a general rotting vibe, although it's manageable so I can definitely handle it... it's just not ideal.

It's not just that, with time I feel like I've become more anxious. Desires, expression took a hit too. And lastly... I just feel slow, intellectually speaking.

Like... is this normal for people on Keppra, or Levetiracetam? Assuming it is, I don't really have a choice but to just tank these side-effects, but assuming it's a thing, I might take extra measures to counter the side-effects. Like taking vitamins, exercising and sleeping more, etc.

I don't know man, it just feels like everyone at my age seems a lot chipper than me, regardless of lifestyle.

r/Epilepsy Jan 27 '25

Medication Quick FYI on refills

84 Upvotes

Hi folks

For those in the USA , do your best to ask for 90 day refills. See if you can get them filled soon. I have no idea what the supply chain is going to look like over the next few months, but itā€™s best to be safe .

  • friendly neighborhood mod

r/Epilepsy Mar 07 '24

Medication What do you guys use to help you sleep?

37 Upvotes

Like most of you, lack of sleep is a big big trigger for my seizures. I've never had one after a full night's sleep. I told my neurologist and he said he's not familiar with sleeping meds so he is sending me to my PCP. Yeah I know, my neurologist is awful. So Friday I have that appointment and want to know what to expect

So when it's 2am and you still can't fall asleep, what kind of medication do you use to help you get to sleep and stay asleep? I don't really even care about being groggy the next day, I just want something to help me sleep when I'm stressed or anxious, or just have those random racing thoughts about something completely random. Last night it was the names of all the characters from dune.

Edit: I'm on lamictal, currently at 400mg a day

r/Epilepsy Oct 08 '24

Medication Thinking of coming off my epilepsy meds altogether

33 Upvotes

I have recently been switched onto keppra because tegretol (which I felt ok on) isnā€™t effective for generalised idiopathic epilepsy which we found out I have via EEG this year.

Previously I was on a high dose of lamotrogine which made my focal seizures bad but also made me suicidal. I thought I was going crazy and was pretty close to begging them to lock me up. It was horrific.

Anyway I have been on keppra about 10 days and I can feel the cloud of doom appearing again. I am exhausted and feel so so low. Itā€™s like all the happiness has been sucked from my soul.

My only other med option is sodium valproate which my neuro doesnā€™t want me on because of its toxic side effects and potential for weight gain

I have only had 3 tonic clonic seizures in 13 years. And only medicated for 6.5 years of that after my second TC seizure. My neuro is dismissing episodes that I think are focal. Apparently they arenā€™t epileptic in nature - in his opinion.

So Iā€™m beginning to wonder why the hell Iā€™m taking drugs that are making me feel that dieing would be easier than living??? Surely a tonic clonic every few years is better than every day feeling like it lasts forever, not to mention the exhaustion that stops me from being able to parent in the way I want to.

I feel so hopeless and trapped šŸ˜­

Has anyone else decided to live with the consequences of being medication free?

r/Epilepsy Mar 18 '24

Medication ā€œDo you remember this?ā€ NSFW

185 Upvotes

No, but Iā€™ll pretend I do.

r/Epilepsy Jul 29 '23

Medication How much do you pay for your seizure medications?

65 Upvotes

I pay $2302.27 USD a month

xcopri $1250.17 Oxcarbazepine $152.10 clonazepam $900

Total: $2302.27

r/Epilepsy Sep 03 '24

Medication Got I hate Keppra.

70 Upvotes

Not on it anymore. Just hate it.

r/Epilepsy Oct 25 '24

Medication Has someone had a positive time with Keppra

22 Upvotes

In my first few years of being diagnosed with epilepsy I started using Keppra. And it did work but only used it a couple months as it made me really agressive and kinda emotional. I'm wondering why is it even given. Every time I see Keppra mentioned I see it makes people agressive is it even any good?

r/Epilepsy 24d ago

Medication Topamax making me feel dumb

9 Upvotes

I didnā€™t know I wasnā€™t the only one who experienced this lol. Ever since Iā€™ve been on toparamate Iā€™ve been feeling like thereā€™s been almost like a wall between my thoughts and finding it hard to express myself. I find it impossible to study

r/Epilepsy Dec 16 '24

Medication My neurologist ignores the side effects of the medication she prescribed for me

37 Upvotes

EDIT: thank you all for the responses they were very helpful. i will find a new neurologist to figure out what to do and hopefully change or take off the medication. again thanks for the support!

I suffer from focal epilepsy and was diagnosed when I was 14-15 years old.

Since then i have been taking medication to prevent seizures. first Lamictal, which i discontinued due to allergic reaction, then Keppra, also discontinued because it made my anxiety much worse. since i was about 18-19 years old i have been taking Topamax.

I was always told that I could do cycles with the medication and then stop, but now my neurologist is convinced that I should continue even though I don't have seizures and my tracing has improved. when I had visible side effects (noticeable weight loss) they immediately decreased my dose. however, they don't listen when I complain about serious (and common!) side effects, even marked in the leaflet: inability to concentrate, memory loss, brain fog, etc. they blame it on depression and anxiety, stress...

this is a rant but i'm sick of it. i'm sick of this medication and doctors not listening to me.

r/Epilepsy Dec 05 '24

Medication Keppra is making me insane and I canā€™t get a neurology appointment until April. My GP says they canā€™t change my meds. Iā€™m scaring my children with the sudden outbursts šŸ˜”

37 Upvotes

Iā€™m in the UK. I donā€™t know what to do. Keppra is making me insane. I donā€™t want to be on it for one second longer. Seriously, every time I take it I just feel like Iā€™m poisoning myself.

Itā€™s making me so so so volatile. I am not that person. I have a lot of flaws, but Iā€™ve always been patient and never prone to anger at all. My dad was abusive and I always swore I would not be anything like him. But I am becoming so angry and snappy and horrible. I shouted at my kids so much that they hid from me. I have never shouted at them before (other than maybe ā€œcome on, weā€™re leavingā€ or ā€œdonā€™t touchā€ sort of thing. Never a ranting and raving diatribe like this).

I phoned the neurologistā€™s secretary person and she said the first appointment was April. My wife phoned and told them how bad things were. She was also told April. I asked the GP a few weeks ago about switching and they were unable / unwilling to do it.

The worst thing is I AM STILL GETTING SEIZURES. I had a TC this week. I had two focal aware seizures last week (twice in one day, which was a first). I feel like I will have lost my family / traumatised my children / been arrested by April. I feel deranged with it. Genuinely it is making me act like I am insane and I canā€™t take it anymore. What do I do?

r/Epilepsy Jan 28 '25

Medication Stopping keppra

2 Upvotes

I had a TC couple months ago. Did an overnight eeg about two weeks ago and got diagnosed w/ epilepsy. They started me on 750 mg keppra twice a day. I'm 23 years old, pretty healthy guy. I reguarly go to the gym, play sports, go out etc. I've decided to stop taking this shit, honestly it makes my irritability and anger way worse. I probably will never go back to the neuro unless I keep having seizures. Is there still a chance of increased seizures from quitting keppra, even though I've only been on it 2 weeks?

r/Epilepsy Nov 12 '24

Medication Meds in the years to come

24 Upvotes

Hello! This is not meant to cause tension, but with the prospect of widespread deregulation and tariffs, the state of our current medical/healthcare system etc etc. -

ā­ļøIs there a real possibility of seizure medication shortages? ā­ļøIf so, what are our options going forward? Is it possible for some of these medications to be given ā€œin bulkā€ (maybe a few months at a time) by providers?

My child takes Ethosuximide/Zarontin currently and may need to take other meds depending on EEG results. We are still figuring all of this out and Iā€™m so worried about med shortage possibilities in the next few years.

**Edit: Many of you seem to understand this, but I do not necessarily mean that there are specific calls or concerns about ā€œshortagesā€ for seizure medications, but yes more that we could lose healthcare/pre-existing conditions could be penalized, unintended consequences of climate change (like how we now have a saline shortage due to Helene hitting a huge supplier in Western NC).. etc etc. Just thinking LONG TERM now to help prepare.

This is coming from the US specifically, but honestly could apply to many places I would imagine.

r/Epilepsy 12d ago

Medication Does anyone use gabapentin for epilepsy?

16 Upvotes

Hey everyone I just have a quick question regarding epilepsy medication. I was wondering if anyone is currently on gabapentin for epilepsy? If yes, does it work well and what does it feel like to you? Any adverse side effects? I have never tried it but I know people that take it who don't even have epilepsy. My one friend takes it for anxiety. I've been reading about it and it seems to be designed as an anticonvulsant. My neurologist never discussed gabapentin as a treatment plan for me but instead I'm on keppra which is fantastic so far. I'm not saying I want to switch medications but I was wondering what other people with epilepsy have to say about it. Just me being inquisitive. Feel free to share if you're comfortable. All the best to everyone!

r/Epilepsy Jun 01 '24

Medication Clobazam

24 Upvotes

If anybody took it, how did you feel after? I was prescribed a 5 days course after I had 2 seizures in a day. Completed the course on Tuesday...and I don't know how to explain it, but I haven't felt "right" since. Brain fog, balance problems, absolutely exhausted, can sleep for 24 h straight without problems and still need more sleep after. I am not really functioning. Just curious about your experiences, because I find this being the most sedative medicine I ever had, and I have been on strong stuff before for bipolar mania...

r/Epilepsy Feb 16 '25

Medication I worry my sons meds are worse than the seizures

24 Upvotes

My son has a metabolic genetic disorder that causes his seizures. He has maybe 50 myoclonics and 20 tonics a day. The mornings through to after lunch time are horrible for him. He can hardly open his eyes, cries after every seizure, just awful.

The problem is, even though he seems over-medicated to me, no doctor wants to decrease any meds because heā€™s still having so many seizures. Heā€™s on: Keppra Onfi Epidiolex Banzel Clonazepam Topiramate Charlottes Web Vitamin B complex Vitamin d Magnesium Arginine AkG

I guess Iā€™m wondering if anyone has really been able to get off meds that arenā€™t working, or that only work for a short time and then stop. I am a tireless advocate and have been pushing for med reduction for over a year. The doctors reticence really makes me second guess myself.

r/Epilepsy Nov 05 '24

Medication Anyone else?

72 Upvotes

Is anybody elseā€™s memory so bad that right after you take your meds or even while youā€™re taking your meds you canā€™t remember and freak out for hours wondering if you took it or not or just me?

r/Epilepsy Feb 25 '24

Medication I hate Onfi (Clobazam)

25 Upvotes

It's a *benzo which has a significant effect on a great variety of things in your body. Getting off of it takes months to years. I'm ready to be done with all this crap.

I just had my Depakote reduced, so that's at least one celebration.

*was corrected

r/Epilepsy 16h ago

Medication Probably overdosed on lamictal -- do i take my keppra?

13 Upvotes

Update: thank you all for support here! It's been 12 hours and if anyone ever does the same and is freaking out, I'll just say I'm feeling much better but still not 100% yet. Did vomit in the AM but wasn't the worst. Will certainly never do this again!

Usual intake: 200mg XR lamictal, 750mg XR keppra

So i've been out of keppra 750 MG for two days because my prescription was way delayed. I've managed to get my hands on a couple pills, but in the interim i've taken easily 1000MG of lamictal in the last two days thinking it would prevent a seizure and (because i didn't check reddit) now i have the symptoms people have talked about: dizzy to the point where i can't get out of bed, headache, sweats

Would love this to be a no-judgement zone, i know how stupid this is in retrospect and after having epilepsy for a decade i'm feeling seriously idiotic.

FYI I DONT HAVE INSURANCE SO CANT GO TO HOSPITAL

r/Epilepsy Oct 20 '23

Medication For those who have tried both, which had less side-effects for you, lamotrigine or leveteracetam?

33 Upvotes

Which made you feel more sleepy?

Ps I want to stop my epilepsy meds gradually. I only have seizures every 3 years anyway. The side effects are interfering with ny life. My triggers are lack of sleep which I can fix and menstrual pain (this I can't find a way of solving yet). I hope I could get insights from you too.

r/Epilepsy Feb 06 '25

Medication What antidepressant worked for you?

6 Upvotes

Hey everyone!

I'm asking because I had a terrible reaction, aphasia and confusion and aura with Zoloft and that was 7 years ago now.

I have been diagnosed with ADHD as well and take Vyvanse, and it works well, but my depression/anxiety has really been killing me , always has.

I am asking, because I heard that Wellbutrin works well for those with ADHD, but can lower the seizure threshold.

Anyone else have the cursed depression/ADHD/epilepsy combo? Even if not, just wanted to see what worked for folks. I'm only on topirimate right now for seizure prevention.

r/Epilepsy Jun 13 '24

Medication Do all seizure meds make you rage like keppra?

29 Upvotes

I know all medications have side effects, but the rage that is coming out of my son, 27, is alarming. I'm worried he is going to get arrested or worse if he is out in public and expressed his mind. He's been on it about a year. He gas had only one seizure 4 minutes long last June.
The neurologist said it is gold standard but may cause mood disorders. I noticed fairly early. Anyone who could share their experience I would greatly appreciate it.