Anyone with epilepsy and memory issues?

[EpilepsyMemoryProblems]

NC for this thread and would be grateful for any advice. Sorry it's long and a pity party.

I was diagnosed with epilepsy out of the blue a year ago following a nocturnal/waking tonic clonic seizure (which frightened the life out of DH!) At the moment I average a seizure about every three weeks. I am on lamotrigine and have been titrating up. No cause identified although I have other issues including optic nerve swelling - they feel everything is related but don't know exactly why at the moment. Brain tumour etc has been ruled out. I know it could be worse.

The hospital care and their support has been amazing but I've starting to struggle recently for some reason after being OK so far. Obviously I lost my driving licence out of nowhere and as I have mobility issues, lost a lot of my independence too. Suddenly this is making me feel helpless and lonely and dependent.

The biggest problem though is my memory. Everything seems to just slide right out of my mind immediately. I keep doing stupid things like leaving the hob on. (I write reminders/notes everywhere).I go to do something and my mind is blank, I've forgotten what I should be doing. I can't remember what I said five minutes ago. I repeat myself and ask the same questions plus I have word recall issues and I feel so frustrated with myself, plus I am probably frustrating my DC and DH - although he is nothing but kind and supportive outwardly. I feel bad as he is now responsible for all the driving including chauffeuring DC, and the sole wager working hard shifts. I know he worries too especially as he isn't here for nocturnal seizures. I just feel like such a burden, and probably an irritating burden.

The medical team believe it is "interictal activity" causing this rather than the medication so they can't really do anything, and that I will adjust hopefully, they have given me advice on strategies etc. It gets slightly worse after each seizure which they say is common.

Suddenly I just feel so miserable. Im so fed up with this and worry that this is just my "new normal" now. I think this morning has tipped me over the edge as I found some clean washing I put away somewhere really random and I don't remember doing it. I have been looking for it all week.

I just wondered if anyone has experience of this (I know people have much worse too so I feel bad about moaning like this and sounding so self pitying ).

PS I did NC but it's probably still a bit identifying as I know I have friends who are MNers and would prefer them not to say anything in RL if they did recognise it. I don't moan like this in RL

Hopeful bump...

Hi Epilepsy, not me but DD was diagnosed with epilepsy also out of the blue, aged 16. She has effectively lost most of her memory from before this time, but her short term memory was really bad with her first medication - which was also lamotrogine. Once she changed (it wasn't controlling her seizures) and we found the right dose, her short term memory did improve, not perfect but definitely better

Maybe have a chat with your neurologist? DD's always says that she doesn't have to just put up with the medication side effects solely to be seizure free - somewhere out there will be the right meds which will mean fewer side effects plus seizure free.

I wish you well and hope you get sorted soon

Thank you for taking the time to reply Tesla How scary for your DD at that age, did they find a cause for it?

The neurologist seems reluctant to change the lamotrogine until they have seen if the max dose does the trick. I take other meds so the options may be more limited perhaps.

I do feel a bit better for typing it all out funnily enough, and I also had a little cry on DH before who has said I need to stop bottling stuff up and complain about things as much as I want to I do feel bad moaning as he has enough on his plate and worries too, but it's probably good advice.

Hi, sorry to hear about your diagnosis. My DH has epilepsy caused by a serious head injury when he was 22. His memory is also bad, although not quite as bad as yours seems to be. From what we have read it does seem that no one knows for sure whether these memory problems are caused by the epilepsy or the medication, or both. It might be worth trying different medication? My DH has never found a medication which completely controls his seizures and over the years he has tried everything available and different ones do have different side effects. Twice a year we go to a consultant at the epilepsy centre in chalfont st peter - it is an off shoot of the london neurological hospital. Their expertise is at the leading edge of research into epilepsy and you might be able to get referred there. Their aim is to try and find a way to stop seizures entirely. They have the latest scanners there and access to the newest medications - many of which they dont even know how they work, just that they do for some people. I think it could be worth pushing for referral to an epilepsy specialist rather than justca neurologist. I hope you find something to help you better.

Hi Epilepsy, sorry to hear you are having a rough time. I have had epilepsy since I was a toddler and one thing I can tell you is that the meds are a lot better now with very specialist options as well as all rounders. Whilst it will take a bit of time they will very likely get it under control. The odds are very high that you will stop fitting in due course.

When you stop having seizures then your memory will improve, although the meds themselves can have a bearing, the seizures undeniably leave your brain a bit worse for wear, hence forgetful.

Whilst the Dr's sort out the meds there are some things you can do to help yourself, possibly the most important is find ways to relax. Yoga, mindfulness and similar techniques will certainly do you know harm and could reduce the seizure rate. That is definitely a complimentary treatment rather than an alternative to meds! Also, and this might sound weird, don't try to fight a seizure. I found out, rather late in the day, that if I had an aura and just went with it rather try to stop it then it was less likely to happen.

Do not feel bad about your memory, it is not your fault and you clearly have a loving and supportive other half. Take his kindness at face value. There are good books on helping to improve your memory, but in the short term coming to terms with it will help a great deal, not least because that will reduce your stress levels.

Finally, find a local epilepsy support group. I was a member of one and although some stay just a while it is a good way of getting to grips with lifestyle changes.

I hope this helps. Best of luck and keep your chin up. There is light at then of the tunnel.

My Dad was diagnosed suddenly in his 50s. He did have memory issues which seemed to improve with changes in his medication. Touch wood, he has been seizure free for a while and has his driving license back as well so there is light at the end of the tunnel. He never really got a reason or cause for it despite lots of tests being done. Which I know he's found very frustrating.

DH as diagnosed with partial seizures about 3 years ago and has titrated a dose of leviteracetam upwards, then downwards and is now changing medication. He has memory problems and tiredness which seem to be associated with his medication. Like PP they have never found the cause despite test upon test. TBH the side effects of the meds are worse than the partial seizures.

Epilepsy they didn't find a cause, though they think stress of GCSEs was a trigger. I agree with your DH - don't bottle things up! Stress remains a trigger for DD, as does fatigue, but fortunately her seizures are pretty well controlled now

My DS has epilepsy, though as he's only 7 it's hard to tell if he can't remember things as well as before! But stress was a trigger for him too - or at least "loads happening, late night" e.g. end of first half term at school.

Thank you to everyone has replied. It's very heartening especially to know people have improved from this situation.

Bilbo in my inpatient stay, they transferred me to a "centre of excellence" for neurology - it's quite far from home but I am still under them for care as an outpatient. I do feel they have been very good and thorough and as I take so much other medication it's a slow process of trial and error I suppose. The Chalfont St Peter does look interesting though and I will bear it in mind, thank you.

Thanks everyone for all other advice. I have been looking at forums and support groups this evening. My best de-stress was swimming but of course I can't swim alone now so I can't get to do it that often. I think that's another thing I am struggling with tbh. I've already lost my running a few years ago due to a physical issue. I will look at mindfulness and definitely try and spend more time outdoors as the weather gets better.

It "reassures" me (not the right word and it sounds a bit insensitive sorry) that it sounds not uncommon for a cause not being identified. My Neuro said they can still identify triggers even if they can't find a cause and I hear you all on the tiredness/stress! I have a seizure diary and see if anything crops up. The meds themselves make me tired and I've really noticed (especially typing this which has taken 25 mins so far!) how much slower I am when tired and that my language goes.

I really do appreciate people taking the time to reply, it has reassured me and made me feel less lonely. As well as the missing laundry I realised I have no memories of last Easter at all and it was a bit upsetting. I think it's just got on top of me and I do need to express myself a bit more and de-stiffen my upper lip!

to all.

Can you find adult swimming lessons maybe?

Don't take this the wrong way but our Leisure centre runs dementia friendly sessions for swimming and other things, as well as a rehab programme for various conditions. It might be worth a chat to see if you can tag along with soemthing similar. They also do water exercise classes.

The reason I liked swimming was because it was just me and I liked the relaxation of being on my own with my thoughts and focusing on very slow lengths etc. We are members of a health club as they have a therapy pool and heat rooms etc and it's good for my joints.

I just feel bad asking DH to drive me there all the time (it's a little far from public transport for me most days). I think it's worse as he also never complains and would never say he is too tired to do it even if he was. What a pair we are. Typing this has made me realise we both need to be a bit more open with each other instead of just being kind.

This thread has really helped actually in making me see that so I'm very grateful people have taken the time to reply and make suggestions.