newly diagnosed

[Cat1974]

hello

I am 49 and have recently started 2000mg a day of levecrartem (can’t spell it). I think my stories a bit of a weird one. In may I had the worse headache I’ve ever had - I’ve not been a headache sufferer before and then experienced left sided weakness and wasn’t able to think properly. An ambulance came and I went to hospital and had a cr abs mri which were both fine. They discharged me and said I’d had a hemiplegic migraine. Since then I’ve been unwell with left sided weakness, memory loss, and insane tiredness both physical and mental. After a couple of weeks I then had my first waking seizure and ended up back in hospital. I wet myself abe but my tongue. Partner witnessed it - I had no idea and had no idea where I was or what happened.

I have no had to go private to see a neurologist since having daily seizures because the waiting list for the nhs was 4 months. I have no life and have been off work.

The consultant has given me tha drugs which have definitely reduced the number of seizures and I am awaiting an mri with contrast as I still have the left sided weakness - which is worse after a seizure. He hopes not to find anything. I haven’t had an eeg and he doesn’t think I will need one - I pray the drugs work and I can get sone of my life back. I’m prepared to not find out what has caused this but I do think menopause plays a part.

Anyway I wanted to ask if anyone has had success of stopping focal to generalised waking seizures on this drug - I would love to hear xxxx thank you

[GillyA]

Hi there, I have been on keppra/Levetiracetam for about 15 years - no side effects. Until recently it worked very well; seizures were reduced to less than one a year and I was able to live a pretty much normal life apart from deciding to stop driving long term.

Unfortunately things have deteriorated in the last 6-8 months and we are experimenting with additional drugs ☹️. I do have an underlying condition which they believe causes the seizures. I’ve never had any sign of the epilepsy on an EEG and my neurologist (one of the best epilepsy specialists in the U.K.) says that once you are older they simply aren’t worth doing - which may be what yours is thinking.

Good luck with the drugs. Once they have found the correct ones, many of us are very well or fully managed. I know how difficult the diagnosis is to get used to (I was around 30 when I had mine) but it is likely to get better once the right treatment is found, and even if not we do adjust.

[Cat1974 in reply to GillyA]

thank you for taking the time to reply. I really hope you have some good luck with new treatment. It is certainly a lot to get our heads round - take care xxxx

[Msrble]

Cat Hi,I am was recently diagnosed as well and placed on the same medication as well. I am 57, it's working OK, I get the odd dizzy spell for a second or so but that is about it for side effects, hope it all goes ok

[car67]

Hi Cat

Sorry to hear to you are going through a rough a time. Hopefully the medication will work , it will take time though to get in to your system and unfortunately side effects do come part of it all but they do eventually wear off.

The tiredness will gradually start to wear off too, maybe you do need the EEG if you still have the weakness in your left arm, I write everything thing down on post it notes to help with my memory loss, there are lots of different ways to manage this , it depends at what level yours is. I know when I was going through a really rough time, with lots of seizure and people were saying the same to me I found it really hard to believe to stay positive and force myself to be positive and try to go for a walk , but it truly did help. It’s very unpleasant what you are going through but please try to stay positive. Wishing you all the best.