Memory

[Pinky885]

Hi all, I’m 32 and been on keppra for 12 years now. My short term memory is so rubbish? Is this the epilepsy or the meds?

Are we a higher risk for dementia? I’m so worried xx

[Adlon57]

I have dementia but having JME epilepsy for over 50 years the number of seizures 400 plus and general damage done by them and the effects of the medication not really surprising. Some of the medication did affect my memory short term and long term, especially topamax, and fycompa were not beneficial. BUT I did set pub and win pub quiz's and a BA thrown in there! I reckon it was a combination of the skull injuries, the number of seizures and the range of medications I have been through, well into the double figures that finally broke me. When I first had epilepsy phenobarbitone was it, the range of medication has considerably increased with side effects lessening all the time, everyone is different. Breakthroughs in epilepsy medication are happening all the time, my present mixture, vimpat and briviact, one seizure since starting in April 2018, not bad?👍

[Considine]

Hello Pinky885I have been diagnosed as having Transient Epileptic Amnesia a rare condition, best definition I have read is available on Wikipedia. Consider whether it applies to you. I have also had two physical seizures both nocturnal the second dislocated my shoulder backwards and shattered the socket. I wake up each morning thankful I've not had another.

The consequence of my TEA is positive. I enjoy every day and strive to make the most of it. I'm writing a 'Family history and observations on life' that's now over 90,000 words long and full of photos, this project has been and still is a wonderful meaningful way to spend lockdown and writing about the inspiring people I've known in the past and still know aids my love of each day.

Keppra controls the seizures, highly effective at preventing physical seizures but like you short term memory an ongoing issue. Be positive and develop coping strategies. I'm the worlds leading user of post-it notes and propelling pencils. My i-phone has many notes which I read each morning and delete or add to as deemed necessary. I have a WH Smith pocket sized 'one month to view' diary beside my bed and retain past years for reference, prompts prescriptions, insurance renewal etc. Another tip is to register yourself on the 'Priority Services Register' of the organisations you deal with such as banks, power companies etc a dedicated helpline and people trained to respond and support your needs.

Above all, enjoy life and be positive.

Hope this helps.

Best wishes

[EpilepsyAction1 Partner Epilepsy Action]

Hi there,

Memory problems are common for people with epilepsy and its hard not to worry. But its good you've heard from others here as it can be really supportive to share experiences.

There can be a few reasons why memory problems happen with epilepsy, including the side effects of medicines and the effects of seizures. It might be helpful to have a look at our website information about memory and epilepsy which explains a bit more about this : epilepsy.org.uk/info/health...

There are things you can do to help with memory problems. See our memory tips for more information. epilepsy.org.uk/info/health...

Some studies have found that people with epilepsy are at greater risk of developing dementia later in life. But the links between epilepsy and dementia are not fully understood and it is unclear whether having seizures causes dementia. It may be instead that the two conditions just share common risk factors. For example, if an older person has a stroke, this could increase their risk of developing both epilepsy and dementia. More research is needed to better understand the relationship between epilepsy and dementia.

If you are concerned about your memory, either now or as you get older, it would be a good idea to talk to your doctor. They may be able to help by suggesting changes to your medication or by sending you for further tests, if they think this is needed.

Regards

Mags

Epilepsy Action Helpline Team.

[Veteran250]

Hello Pinky

I’m a guy aged 77, take Lamotragine for my epilepsy, if I have a long email to read on my iPad, by the time I get down the page I have forgotten what I read at the top..., ask me who I was dating 60 years ago and I could tell you!

[Adlon57 in reply to Veteran250]

Know the feeling, did my best work for this " historical crime novel" whilst on Lamotragine, on it for about eight years, I think, which I've been writing for 12 years, you should see the reams of doubles and trebles [probably quadruples?] of information. I have stopped taking it three years ago, but still plenty of used paper and "Will I ever finish this book?" Nice to hear from you Veteran again!👍👍

[richhood]

bad memory is a common issue among people with epilepsy it is due to the epilepsy but certain medications can make it worse i think kepra is one of them it should have the side effect's listed in the leaflet that come in the box, there is a page about memory on the EA site

epilepsy.org.uk/info/health...

and one about coping with it at

epilepsy.org.uk/info/health...

Richard

[Liz04]

Hi Pinky885, not sure about the dementia part but I also take keppra which is really effective in keeping me seizure free but has side effects which largely effect memory and thought processing speed. My short turn memory can be really bad some days to the point where I have also questioned whether there was something else wrong so you aren't alone but I'd imagine it's pretty normal so I wouldn't worry too much about it.

[Adlon57]

Speaking from experience, having JME epilepsy for over fifty years, topamax and keppra I found the worse for memory and "thought processing speed" but everybody to their own thing? I have early dementia, but not really surprising the range of medication I have been through, and the number of seizures, actually congratulated on my current medication and general effects on myself after a lengthy hospital visit [not epilepsy related] by the medical authorities👍

[AlexT]

I take Keppra too and both my long and short term memory is terrible. I have also suffered from a lot of seizures over the past 14 years and i think that its probably a combination of the medication and seizures that are causing it. You have been on Keppra around the same amount of time as i have and it was a new drug when i was first given it and it has many side effects that were never actually listed when the drug was first released. Sadly it was the only medication that was stopping me from ending up in an ambulance and into the A&E dept sometimes 2 times per day. I get many side effects , but have learned to live with them and always tell myself that without it i might not even be here to type this reply.

[Fperkin23]

I was on Topamax, and it was horrible. I couldn’t remember words. I was trying to learn new things at work, and it was horrible. I was asking colleagues the same thing four and five times a day. They were very keen on answering them, and not getting frustrated. I have not had any issues on this one. I was on it before and didn’t have any problems. One thing though, it makes me burp and very gassy. I eat a real healthy diet, but I do cheat days sometimes. I gave up certain things on these days like pizza, steak sandwiches, and crisps. I have lost weight on it, and I sleep really well. I will eat like once a day. No memory issues here. If I don’t sleep well then I can become confused, but I like it overall. The burping is a little too much. My doctor said it will go away with time. I have had to buy bubbly water.