I am recently diagnosed - still having some tests etc but am on 2000mg of levetiracetam.
I’m off work currently mainly due to extreme tiredness and sleepiness, left sided weakness mostly after a seizure which wears off and because my thinking is impacted- it takes me longer to process things.
I am feeling quite low and want to know if other people have had similar symptoms and if they have passed. I spend most of my time lying down and sleeping during the day - I would love to have sone energy to actually do something
Any replies would be greatly appreciated x
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Cat1974
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Hi. Sorry to hear you're feeling so low. I am over 70 and first diagnosed 3 years ago after a big seizure which put me in hospital for a few days. This was followed by 2 minor seizures 3 months later. I was then referred immediately to a neurologist and the specialist nurse who put me on Leviteracium (sp?) 250mg once a day with the plan of working up to 2000g a day over a few months. By my next appointment, I think about a month later, I'd not had another fit so I asked if I could stay on the low dose of 250g instead of the gradual increase to 2000mg. I was told that the tablet only lasted for 12 hours so we agreed to just increase to 250mg x twice day. Three years on I've stuck to that dose and not had a seizure since (touching wood quickly.). I have found a bit of increase with irritability/mood issues, but try to counteract that with some vit B6 & B12 supplements. I don't understand why the medics start people off on such a high dose as they have with you and not try patients on a low dose - at least trying it first. So far it's working for me. I send you my sympathy and best wishes. It may be worth discussing lowering the rise of trying another drug. Hope you're stabilised very soon and feel better.
Hi interesting to hear your experience of dose . I started having seizures for the first time 5 years ago , and although an initial introduction of 250 mg of Levetiracetam I was told by my consultant that the minimum effective dose is 500mg twice a day . Since having more seizures though , maybe once or twice a year I have increased to 750 mg twice daily. Like you I experience some irritability as well as light and interrupted sleep . I’m certainly with you on keeping to a minimum if possible though.
Thanks for your message. A new diagnosis can be really difficult to deal with. I hope you hear from more people on this platform as sharing experiences can be very helpful.
I just wanted to make sure that you know about our other services?
We have a lots of information and advice on our website which may be helpful for you: epilepsy.org.uk/info/newly-diagnosed. And we also have some information about low mood (epilepsy.org.uk/living/health/low-mood-depression-and-epilepsy) and looking after your wellbeing (epilepsy.org.uk/living/health).
If you’re feeling low it’s a good idea to keep in touch with your doctor or your epilepsy nurse (if you have one). If it feels possible, you could speak to them about how you’ve been feeling and what help or support they can offer.
Low mood is common side-effect of levetiracetam (bnf.nice.org.uk/drugs/levetiracetam), so it’s possible that your epilepsy medicine may be at least be contributing to how you’re feeling at the moment. It’s important to keep taking your medicine as prescribed, otherwise your seizures may get worse. But your epilepsy specialist, or epilepsy nurse may be able to review your treatment plan to see if this could help with your mood.
If you don’t think you can talk to your doctor or your nurse, or you need to talk to someone urgently, you can call The Samaritans (samaritans.org) on 116 123 at any time.
Some people find it helpful to talk to others who understand what they are going through. You might like to join one of our virtual (epilepsy.org.uk/support-for-you/talk-and-support-virtual-groups) or face-to-face (epilepsy.org.uk/support-for-you/talk-and-support-local-groups) talk and support groups. And we also offer a befriending service (epilepsy.org.uk/support-for-you/epilepsy-befriending).
Finally, if you think it may be helpful to speak to one of our advisers you can call the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm.
Hi...thanks for that advice. Quite a few options of support to choose from. I am in the no-mans-land of having had a pretty nasty seizure and gone to A+E but not having been assessed by a neurologist...that will have to wait for another month. I am therefore not on any medication and I don't know if I will have a seizure in the next 5 minutes...or not. I don't know if it is my circumstance or the seizure, but my normally happy, confident composure has nosedived. I can't blame medication for my low mood, in some ways I wish I could. It is good to know that there is someone, somewhere to talk to if things get really out-of-hand. Thanks, Nick
Hi, I am on a slightly lower daily dose of levetiracetam. I struggled to start as well. I was tired, and that I think was due to sleep disruption, which I think is common on a few meds. Feeling down is also very common - I had some bad days and some not so bad. Overall it took quite a while to pick up, but hang in there, it does start to turn for the better. Unfortunately I'm not someone to talk to people about how I felt, but I urge you to vent to friend or family member if you can - it will help. I'm in a much better place now. Still have bad sleep so tiredness is always an issue but I can get through it. I really hope it turns for you soon.
thank you for your support - I’m feeling slightly better today. I’m a bit nervous because I go for my MRI results next week and suppose I am worried there might be something there. Thanks again everyone x
Hello Cat1974. I am 77 and contracted full blown epilepsy 10 years ago- although there was a suspicion that I had been having absence seizure previously. My neurologist (a wonderful man) started me on Lamotrogine - I ended up having the GSK brand as this caused lesser side effects. This certainly reduced the frequency if seizures - I was very lucky as I did not have many and they were all sleep related however, they were every exhausting).
He then added Levetiracetam - and magic, the seizures stopped and I have been seizure free since June 2014 (touch wood). The quantities have remained pretty well unaltered. 200mg Lamotrogine twice daily and 500mg Levetiracetam (Keppra) also twice daily.
Yes, I have side effects although they have reduced in some areas over the years. Yes I certaily am more irritable, get annoyed and critical much more easily, Sleep interruptions (although there are other causes for this) andmuch increased dreaming - sometimes nighmares.
I have Escitalopram (an anti-depressant) which does help with mood swings. This after trying Sertraline, another anti-depressant, which if anything made matters worse. I understand that Sertraline can negatively interact with some anti-epileptic medication.
I also have occasional short-term memory loss, but that is very common. Overall, I have learnt - and am still learning to live with the side effects. I have been able to drive again (which I love) for several years. I think I am so very lucky. Some people I have met can have several seizures in a day.
Having also had major heart surgery, more than once, I also think I am very lucky to still be alive, thanks to our wonderful local NHS service with a great GP and consultants
So, keep up with the medication, speak to your epilepsy nurse (if you have one), be patient and try, difficult though this can be, to be positive, and accept the limitations and side effects. The latter CAN reduce over time. Remember also that the majority of Epilepsy sufferers do have their condition controlled by medication.
I do hope all goes well with you. Best of luck.
By the way, another good source of information is Epilepsy Research.
Hi Sorry for delayed reply. I have little experience with Levetiracetam, it was prescribed for 3 months duration after gastro surgery in October 2019. I took 500 mg twice daily for 3 months. I had seizures during the 90's for which I had to take AEP s for long time till 2010 Phenytoin and Valproate. Levetiracetam did not cause any problems.
Hi my partner started on the same medication and had some bad side effects so been swapped to another type now. It is something you definitely need to speak to doctor about if gets bad. Some days he didn't want to get out of bed and his moods were terrible sometimes suicidal so make sure you speak to people to keep you right
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