Tired of memory loss and being a joke

[MAPB]

Epilepsy has really affected my memory in the last 8 years. I’m constantly putting my foot in it. Everyone has a laugh about it when it happens and I can take a joke, I’m guilty of doing it occasionally myself to others but it is happening more and more and it stopped being funny a while ago. Anyone else get this?

[Beyouandonlyyou]

I had my first seizure 7 months ago and at least 2 large ones a month since (Tonic-clonic during sleep, absences during the day and they think I’m having aura’s 80% of the day) . Since then I’ve noticed issues with my memory and general brain function steadily declining. I feel extremely thick sometimes (most of the time to be fair).

I’m like you, everyone around me is either making jokes about me or saying the classic “oh it can’t really be that bad, she’s just making it up” and don’t get me wrong I’ve got a good sense of humour but this is different. I don’t know if you feel the same but it never feels like a joke, just a kinder way of putting you down.

I’m waiting for another appointment with my neurologist to see what/if anything can be done (incase it’s my medication, which has been swapped twice so unlikely)

I have been told though that seizures can play a role in this happening, also depending where your seizures start and if you have altered brain waves during non seizure periods. My seizures seem to start in the temporal region and spread to the whole of my brain. An EEG picked up spikes and sharp waves in both fronto-temporal regions during seizure free periods/normal day to day life and during my sleep, which they have said could be a possible cause but I need more testing.

Hoping you get some answers soon!

[MAPB in reply to Beyouandonlyyou]

I’m so sorry, it sounds like you know exactly how I feel. I’m on Lamotrigine and to be honest I thinks it’s the condition and the medication. It’s not even a well known part of the condition, people don’t realise and think you are making it up!!!

[Polly711 in reply to MAPB]

how long have you been on lamictal I was on that med for over ten yrs the longer I took the med the worse the symptoms got I was on 200/200 morning and nite

[MAPB in reply to Polly711]

probably about 7-8 yrs, can’t quite remember no pun intended. Randomly today I was speaking with a midwife whose daughter has the same issue but has a different form of epilepsy so I suspect you’re right. I take 450, 200 in the morning and 250 at night. I never heard back about an epilepsy awarness campaign so I suspect that comment re. ways to combat memory issues is the extent of any reply.

[MAPB in reply to Polly711]

do you take something else now?

[Caesard in reply to Beyouandonlyyou]

I am somewhat copy paste your case (Including TLE and spoke and wave) but a few years more on it. Though it took about one year to get it under control, now it's quite reasonably contained. I have some memory issues, but nothing critical, at least until now. But definitely I'm not as sharp as I used to be...

While seizures are known to take a toll, especially if MTS is diagnosed, my bet in my case goes on the meds. I can feel I'm rolling with the handbrakes on

The first side effect I've noticed while on the meds it was i call the LCD effect. When I close my eyes to sleep the background it's not black anymore/complete dark. There is a whitish dark behind my closed eyes, like my brain stays now in milk instead of it's usual translucid containment.

Exactly like the older LCD screens where background black is not really black but a white glowing darker color.

[Adlon57]

Yes I know that feeling, laughing at me, because of the effects of my epilepsy medication, sometimes not aware of what I had done! Maybe once or twice, but resentment building up inside me, I have juvenile myoclonic epilepsy, had it for fifty two years, "Oh goodie🥴🙄 I'm on new epilepsy medication, what sort of weird side effect are they going to have on me this time?🙄" Sometimes I am not aware of what side effects the medication has on me, until I am on a new one, never perfect, after over 400 seizures, I have had a few!🥴 You have to be very thick skinned, some of the talk that goes on behind my back, the stereotype pictures painted about people with epilepsy🙄Ironic my IQ is well above normal, seemingly against the grain! I am a loner, a survivor, learnt to like my own company "Adapt through Adversity" tattooed on my left forearm!

[Caesard in reply to Adlon57]

You are inspiring!

[MAPB in reply to Adlon57]

I love it! There needs to be an awareness campaign or something so people understand it isn’t all just photosensitive epilepsy fits and nothing else

[Adlon57 in reply to MAPB]

I quite agree👍👍👍👍👍👍👍

[Adlon57 in reply to MAPB]

How many known types of epilepsy, there are a lot more known types than the general public think! Not all people have auras before a seizure, [you don't swallow your tongue when having a seizure🙄], people have seizures in their sleep, absence seizures, as you said MAPB not all people with epilepsy are photosensitive [I don't, The amount of various pop gigs I missed just because of pure ignorance on the matter🙄], get rid of the old myths and legends built up over the centuries PLEASE! The known side effects of the medication, not all medications are compatible with every type of epilepsy [more research is needed on this subject], what to do when a person has a grand mal seizure, absence seizures, etc, etc, MAKE THE GENERAL PUBLIC AWARE OF THESE AND MORE! Update the affected people, doctors and neurologists with possible medical breakthroughs! This is a condition which affects the most complex organ of the body, the brain, thus the hardest to research!

[MAPB]

I wonder if this group has the ability to campaign for / launch an awareness campaign? You never know. I will investigate

[EpilepsyAction1 Partner Epilepsy Action]

Hi MAPD

It's good you've heard from others. Share experiences can be so helpful and encouraging.

Many people with epilepsy report they have problems with their memory. In fact, it’s one of the problems people with epilepsy most often seek help for.

For this reason, I'd just like to make you aware of our information on memory problems and epilepsy.

epilepsy.org.uk/living/heal...

On this page we look at how epilepsy can affect memory, how memory works, and give some hints and tips to help you cope with memory problems.

Regards

Diane

Epilepsy Action Helpline Team

[MAPB in reply to EpilepsyAction1]

thanks I’ll have a look

[Hidden]

Are you taking Lamictal?

[MAPB in reply to Hidden]

Yes that’s the one

[Hidden]

Lamictal can affect your memory but not as severly as the generics. Which side of the brain are your seizures coming from? Have you ever been through intensive EEG monitoring?

[MAPB in reply to Hidden]

I think it might be the left side but I honestly can’t remember, I’d have to check. I haven’t been offered the EEG monitoring but that’s just for people that don’t respond to treatment isn’t it?

[Hidden]

Intensive monitoring is usually preop to confirm the MR results. Hang on to your MR scans if you ever get referred to another neurologist or hospital.

[MAPB]

ok thanks! Hopefully everyone on this chat just learned something