Keppra Side Effects

[Scots_dad]

Hi has anyone on keppra getting really bad insomnia atm , I've been on it since the start of November but since Xmas its been getting worse waking up an hour after falling asleep thinking I've had a full night's sleep then struggle to get back to sleep 🙈 also get vey emotional when I'm on my own listening to my music 😭

[Wygella]

Hi. Are you taking Keppra post Encephalitis or for another reason? If it’s for encephalitis then I also had insomnia and other unpleasant side effects like extreme dizziness. I was fortunate to only be on it for 3 months. This was six and half years ago. I continued I’m afraid with insomnia for a long time and learnt strategies to manage it. After all this time though I do sleep much better you will be pleased to hear. Good luck if you are just starting this journey.

[Scots_dad in reply to Wygella]

Ah that's good everyone else saying I will be on them for years, i had encephalitis back in early November had 3 seizures at that time but nothing since got a phone consultation with the neurologist on 10th a Feb to see where I go from here, thanks for the reply

[Wygella in reply to Scots_dad]

That’s exactly what happened to me six and half years ago. Like you I had the 3 seizure in 24 hours. Back then no one seemed to know much about encephalitis. I was very lucky to have a doctor at the hospital who recognised it straight away. Neurologist took me off 3 months later but it seems that the norm now is to keep people on them. I felt awful when I was taking them. Permanent,y nauseous and dizzy too. You need to really check out your options but you can request to come off. I reckon Feb may be a bit early though. You don’t want to come off too early either. Good luck. Let me know how you get on. It’s still quite a journey you’re on by the way. Don’t push yourself. Wear yourself out etc. and look for Letter to my Brain on the Encephalitis Society website. Really helpful.

[Scots_dad in reply to Wygella]

Thanks for the reply again , when I had my seizures my temperature was sky high and not experienced anything since. I've got a notepad ready with a tonne of questions for the neurologist would have preferred face to face but it's a phone consultation, can I ask has it left you with any lasting affects?

[Wygella]

I presume you had HSV encephalitis? This does sound exactly like my experience. I think you’re doing really well actually. Better than I did after 2 months and on Kepra. If you’re asking did the Kepra have any lasting effects. Then no. It took a good week to get out of my system but then I really started to recover. If though it’s after effects of encephalitis then I have to say for me yes. Firstly I had to learn to walk properly again. I’d seriously forgotten. I had to use a stick for a year with balance issues. But after a year that was all fine. I used to be a real multitasker. Now I can manage 2 things at the same time. So I made big strides after a year. I could drive after 18 months. After 2 years I thought I thought I was at my new normal but actually I’ve got steadily stronger and better. As I said, sleep has improved. I cope with stress much better. Energy more or less back etc. The one thing I still get if I overdo thing is an occasional ‘fatigue’ day which I’ve learnt to recognise and embrace as a signal for a day off

It would be better to see a neurologist face to face of course, but don’t let that put you off asking the important questions. Also please remember my experience is over 6 years ago. There has been a lot of research and information since then. Good luck.

[Scots_dad in reply to Wygella]

Again thanks for replying , yes it was hsv encephalitis I had to . The after affects of encephalitis is what I was talking about mine doesn't seem as serious as yours as I was physically able to do most things after a couple of weeks . To be honest I was more thinking of the mental side , the side affects of the keppra are bad but they say fatigue while most days I feel high as a kite . When I see famous faces on tv now (not everyone) I feel like I know them personally which iam embarrassed to tell even family as it sounds crazy . Done a bit of research and says de ja vu is a symptom of epilepsy but I'm not sure if it's de ja vu ,still trying to peice everything together and I'm glad this site is here to ask questions 😊

[Wygella in reply to Scots_dad]

Ah. Ok. Emotions like everything settles but at the moment you’re seeing and feeling everything in high definition. So I had the massive fatigue not high as a kite. However every emotion is hugely amplified. So a low is really low. A high can make you cry. In fact most things made me cry for a good 6 months to year. In other words it eased over time although I still well up easily. But the dipper highs and lows only lasted about a year or so. Sensory disturbance still happens very occasionally but nothing like it did. It does sound like have a strong mind and body so I’m guessing your mental symptoms will go more quickly. Some people have to anti depressants. Thankfully I was one who avoided them. I hope all this is helping? Oh I also had a brain scan which showed if I had any lasting damage. Neurologist told me I had very little a most neurons that were damaged would find another path over time. Which they did. Might be worth checking if they still do that? I hope this helping. Every single one of us is affected differently. You and are the lucky ones

[Wygella]

By the way your reaction to famous people could be all part of this high definition living you’re experiencing. Well worth asking the neurologist. Luckily my brain couldn’t cope with internet searches till I came off Kepra so I didn’t realise all the possible implications after encephalitis. I think that may have been a good thing.

[RobbieLEast in reply to Wygella]

Hi both 😃 Hope it doesn't sound odd but your messages sound so interesting to me. Really glad I am on here now. Memory loss and pills are annoying but we have done really well percentage wise, the alternatives are far worse. Let's remember that 😉

[Wygella in reply to RobbieLEast]

So so so agree. I tell myself that almost daily even after all this time. Good days, bad days, we are still so much better after this horrible virus than so many people. Well said.