Levetiracetam

[BreakDancer]

Alright ladies and gents, just looking for some general advice/assurance. So I had my first seizure (tonic-clonic) around end July 2022, and since then have had approx. 5. So all of these have occured whilst I've been hungover and engaging in some sort of physical activity (running, biking etc.) and have lasted for about a minute and a half and haven't caused any lasting injuries. Aside from this epilepsy I am generally very fit and active. The neurologist has pescribed Levetiracetam with a steady build up to 1000mg as a way of treating these seizures. However, my issue is coming from the insane list of side effects. I'm not sure how comfortable I feel trading a potential psychotic break/hallucinations to not have a few seizures a year. On the other hand I've recently learnt about complications like SUDEP. As someone with a long term partner who aims to be around for the long run (but also would like to remain emotionally stable) any advice or personal experiences would be appreciated.

[RR25]

Heya. Its totally understandable to be concerned giving all the list of side effects. I am on 2grams twice a day along with lamictal. On inital dose increase I experienced more tiredness/fatigued. Leg pains and frustration/easily annoyed. All these lasted a few days and I was fine then. To me, the drug is great and has greatly improved my seizures. Make a list of pro's and con's or try it out in the lowest dose to begin with and see how you feel on that.Good luck

[GillyA]

Hi there, my first seizure was in my mid thirties, so I completely get what a shock this must be. If your neurologist has an epilepsy nurse, it may be worth giving them a call to talk through your concerns. Without being a doctor, I’d say generally if the side effects are going to hit, it’s as you start the drug rather than coming on later, but worth testing this out with a medic.

As far as injury is concerned I went 20 years without any, then fell on stairs a year ago. 4 days in hospital with severe concussion, plastic surgery on my face because of the damage I’d done and still need physio on my knees. So overall, not good.

My seizures have increased in frequency over the last couple of years. Last time I spoke to my neurologist I said I could live with one a year, but the way they are hitting now was causing real problems both personally and professionally. He determinedly told me his job is to stop them all together.

So overall, I’m saying it’s a personal decision, but take it in an informed way and not just on the basis of the pack leaflet. I’m afraid I’m also saying the risks of epilepsy are real, and many on here will have similar stories about injury.

PS I’m on Levetiracetam too, with absolutely no problems at all. They added in lamotragine at the start of the year. The side effects were really nasty at the beginning, but I got through them. Fingers crossed.

[mxcosta in reply to GillyA]

Take a look at your BMD (Bone Mineral Density) once in a while... I've developed osteoporosis with Levetiracetam

[GillyA in reply to mxcosta]

yes, doesn’t help that I’m on an entirely different medication that can cause the same issues too. I’ve been referred to rheumatology for regular checks. Adding in my fourth separate specialist 😒

[Jaleena]

I've been on these tablets now for 2 years and am now on 1000g which i started in July 2023.I haven't had any hallucinations or anything. To be honest once I eventually started the 1000g I started to feel better and more in control. Now I can count on one hand and have fingers spare how many seizures I've had

[Considine]

Hello Breakdancer. I’ve been on twice daily 500mg of Keppra (1000mg a day) for some years. First physical seizure after heavy physical work throughout a hot day with no sun hat. I’ve learned to always wear a lightweight hat with ventilation such as a straw hat or linen with holes the latter being easy to slip into your pocket.

I’ve also learned that the alcohol and Levetiracetam is a dangerous combination and that the effect creeps up unnoticed by yourself but obvious to others. It’s important to be aware of this. Since abstaining from red wine for over six months I’m much improved in numerous ways. I still enjoy a social beer or two in company but I’m cautious.

[mxcosta]

Take a look at your BMD (bone mineral Density). Levetiracetam caused me osteoporosis