Hi my name is karen

[karenwalker1970]

I've had uncontrolled epilepsy for 30years and I now just put up with it, but the memory loss is hard and frustrating. Don't know if it's all the tablets I've tried or all the fits I have but it gets me down, think talking will help

[UnwelcomeVisitor]

Hello Karen,

Epilepsy TUV can be to say the least a horrible illness. And alas for the thirty percent of us suffering from uncontrolled TUV a life ruining illness.

Out of the twenty odd AEDs they can all affect us in very different ways. Obviously what works for one doesn't work for others. I have been prescribed virtually all of these that are applicable to my type TUV. In my case it is temporal lobe epilepsy.

TUV first entered my life many moons ago in the form of what used to be called grand mal. 

In between times I suffered from petit mal. In those days I could go say a month TUV free. However as time went on grand mal returned. 

The memory used to be very good but as time progressed I found that I had a brilliant memory for all numbers. For example telephone numbers etc,

However I started to notice my memory was starting to play me up. Now sometimes in mid conversation I find myself searching/grasping for the thread of the conversation. However even with friends help I sit here still struggling to be able continue the conversation.

What is this I hear you cry? Yes, exactly what it? It has found that sometimes the concoction of AEDs can dull our brains right down. Could this be the cause of our memory difficulties.

It has been found that for those us receiving visits from TUV that over a long period of time that our memories start to be affected. My TUV is in my left hand temporal lobe which controls the right side of my brain. The right temporal lobe controls numbers, whilst the left controls words and that is where my problems lay.

I was sent by my neurologist to a memory specialist and when I sat there having to remember parts of a story that she was narrating I failed dismally, but for numbers I passed with ease.

Make an appointment to see your neurologist and get your AEDs checked out. 

I hope and pray that your TUV becomes much better controlled.

Kind regards 

Richard

Author of Epilepsy the Unwelcome Visitor

[UnwelcomeVisitor]

Ps I feel that I recognise you, but I do not where.

Kind regards 

Richard 

[Pauley]

Hey Karen you sound like a brave and inspirational woman. I'm taking it your daughters in the photo and so well done for bringing up your child (the most important and hardest job in the world) at the same time as contending with your illness and meds

[JSJ58]

Hello Karen. I recognise a lot about what you have written about. Like you I have had diagnosed epilepsy for some 35 years. Over the years I have been seen on a regular basis by an epilepsy specialist and have been tried on a number of drugs. Some have been more successful than others but I still don't have controlled epilepsy by any stretch of the imagination. One of the most difficult issues, amongst many others, is the loss of memory. I have reached  stage where I'm not sure whether it is down to my condition or medication linked to age. I can't remember names, routes taken to places - train, bus, walking or underground. Some people need a drink or a cigarette but personally I can't go anywhere without  pencil and a notepad. A number of years ago I was treated for depression as well as being given help with memory problems. The depression treatment was long but successful in giving me strategies but the memory clinic was almost a waste of time. So back to the pencil and paper then!

Take care,

J

[AmyBadd]

Hi. For me the memory is definitely more related to epilepsy than meds. When I was a teenager, my epilepsy was not controlled and my memory of this time is pretty appalling which is sad as I know it was a happy time for me. Since I was about 21 my epilepsy has been controlled quite well (in fact I was seizure free for 7 years but have had 4 tonic clonic seizures in the last 2 years) and my memory has been much better during this time. I have been able to complete 3 degrees including a PhD and live a fairly normal life except that I can't drive and have to be extra careful around water and so on!!

Hope you enjoy being part of our community. I am always learning new things here!

Amy xx

[Kiera49]

I have had epilepsy for 33 years was uncontrolled in the beginning but have been seizure free for 19 years.  Memory was shocking then I had to have chemo as well so now my short term memory is really bad my partner is blind and has had 5 strokes so we are a right pair sometimes his memory is better than mine.  I can learn Korean but can't remember what I went upstairs for so frustrating

[happy48]

Hi Karen.  I am 67 and have had epilepsy since I was 11 which is still uncontrolled.  When I was given medication my memory started slowing down and got worse during puberty.  Approx 20 years later I had a change in medication.  I can't recall anything from the period I was on this medication.  I was changed again because that medication also made me aggressive.  The next medication made the memory slow until I was changed again.  The current medication has made me more alert than I have ever been and changed my life completely.  x