First Post - g/f suffers memory loss after seizures - is this normal?

[Glen]

Hi,

I’m new to this site – first post.

I’m 32 and my girlfriend, 30, was diagnosed with epilepsy only four years ago having had her first seizure completely out of the blue on a bus. She has temporal lobe epilepsy and is on medication for it.

Over the past four years she has had seizures every now and again, although she often goes months without ant problems whatsoever.

However, on Tuesday (26th March) she had four seizures all in one day and spent two nights in hospital. I have witnessed several of her seizures but one of the ones she had the other day was particularly distressing. It was in A&E and she bit her tongue quite badly so there was quite a lot of blood. She went blue in the face and a couple of doctors rushed over and put an oxygen mask on her to help. Prior to this she’d had no seizures for nine months so it was very upsetting and frustrating.

As you would expect, she is now extremely tired and still very drowsy. She is particularly upset and worried about the memory loss she has. However, she had another episode like this 15-months ago when she had five seizures in one day, and after a week or so she was back to her usual self.

I am wondering; is it normal to have some memory loss? Does everyone have this?

The seizures were tonic clonic seizures (I think that is correct – I hope I’ve got all the terminology right).

Despite the fact I’ve now seen her have seven or eight seizures it doesn’t stop them scaring the hell out of me. I hate seeing her suffer and if anyone has any similar stories or words of advice I would love to know.

Glen

 

[Chaz1]

hello Glen

warm welcome to CWE!

My Son is 27 and he has E, mainly T/C seizures but not strictly.

Our experience for my Son normal to have some memory loss after T/C, and can due to the E medication as overall memory is affected ( he says this regularly)

Your girlfriend medication sounds like it need to be reviewed? She is seeing neurologist?

I share this link below a lot, because it covers a lot of what we the carers cope with, like the fear and guilt but super info on seizures too..

http://www.theseeprogram.com/html/s_e_e__library.html

turning blue and biting tongue are quite normal in T/C and it’s real important that you KNOW, when T/C hits, our loved ones are 100% unconscious, they do not feel a thing BUT when they wake up, more often than not feel as though they been run over by a bus due to severe muscle constriction and tongue bite and some….royally beat to say the least..

advise, stay positive and get educated, read and learn ALL you can about epilepsy and support her as you are doing....you sre here and that speaks volumes of how much you care, well done!

 

[Rocky Mountain Gemini]

Yes Glen, memory loss is quite normal from tonic-clonic seizures. As it is from some of the seizure meds. My memory has gone to shit the past few years since I started having them. Good thing I have a sense of humor as my gf kids me about it a lot. Tell her to hang in there, it could be worse.

 

[Nakamova]

Welcome Glen!

Yes the memory loss is not unusual, and can be more severe after multiple tonic-clonics in a short period of time. As Chaz mentions, your girlfriend should have her medications reviewed if she's having tonic-clonics -- even "every now and then" is problematic, and can allow the brain to get used to seizing. If the seizures escalate in frequency, duration, or kind, you need to figure out how to out the brakes on.

Best,
Nakamova

 

[Glen]

Thanks for all your replies, info and words of encouragement.

My girlfriend currently takes Keppra and Lamotrigine. She'd had no seizures for nine months and then last week was instructed to adjust her medication as they are trying to reduce one and up the other (I can't remember which one they are trying to wean her off). So a few days after she starts the different amounts of each drug she has four seizures in a day. I suggested to the doctors that perhaps this was the cause of her seizures the other day but they insisted it was a coincidence.

My girlfriend is currently spending a few days with her family in Belfast but as soon as she's back we are going to arrange to see her neurologist so we can explain what has happened and hear what he thinks and has to say.

Her tongue is still incredibly sore as she must have bitten it really hard. She's also still really dazed - almost zombie-like - but will hopefully be back to normal in a few days.

 

[Nakamova]

Doesn't sound like a coincidence to me. Unless she was up 4 days straight partying before the seizures, the med change seems the obvious explanation. If the neurologist still thinks it's a good idea to make a change in the dosages, ask about going in much smaller increments, as small as possible. (For some of my med changes, I've even split the tablet in half with a razor.)

The sore tongue is no fun. Some folks have found that Anbesol can help (it's a over-the-counter medicine for sore gums -- they may have something similar where you are). Also foods that are very soft and relatively bland -- smoothies, soup, hardboiled eggs, oatmeal, applesauce. Make sure she's getting plenty of water, since it's easy to get dehydrated when you don't feel like eating, and that can slow down the recovery process.

 

[ROBERT45]

Your GF

Glenn, first let me say I think your GF is blessed to have someone like youthat wants to be a friend instead of dropping and running from her. I believe it is not uncommon to have some degree of memory loss. I've had grand mal seizures for the past 45 years---since I was 12---and seem to have some memory loss. I've never seen someone have a seizure but I'm sure it is an unsettling thing. What area of the brain does the seizure start in. ie: the epicenter?
Keep being her friend. For people that have epilepsy friends are not an easy thing to find or keep.

 

[Glen]

Hi Robert,

I am not sure what area of her brain where the seizures start. We are seeing her neurologist in a few weeks time so will discuss it with him. She's had no more seizures since the bad day almost two weeks ago now but still has a very sore tongue and has a lot of anxiety. She keeps waking during the night and asking if she's "been alright?" Hopefully she'll be ok now for an good while. This site has been a great help being able to read other people's experiences - I'm glad I discovered it.

Glen