Temporal Lobe Seizures and loss of memory

[kaileyris98]

So I have been having this type of vivid dejavu types of feelings which go for around 30 seconds to a minute and it’s this aurora like a brick is weighing on my chest, I can still communicate to people and talk whilst they are happening but it takes me a minute to feel right again. I can be having up to 15 a day and then I can go 2-3 weeks without having any, I also suffer anxiety as well which I am medicated for. I used to have these types of things when I was younger around 10-11 years of age but they have started out of the blue since I have turned 21. My doctor has put me on Epilim to see if it will help, epilepsy runs in my family but no one has ever had the type I have had.

This is all new and very very scary for me as I am struggling with my short term memory. I will ask someone something even though I had asked them 5 times within the last two days but I cannot remember it.

Has anyone experienced this time of feeling and if so how long does it take for your memory to go back to normal? I am struggling.

I can’t eat properly anymore without feeling sick, I don’t want to leave the house in case I have an Grand mal seizure.

I had an eeg last week but I am waiting on the results but the doctor feels pretty confident that it’s temporal lope epilepsy.

I just need some guidance to know I am not alone or going crazy 😐

[Dixon2017]

Hi kaileyris98, I too have temporal lobe epilepsy and and suffer from absence and focal seizures. I can completely relate the to auras and symptoms your experiencing my warning that a seizures going to occur is my nose tingles or have a overwhelming sense of impending doom. Focal seizures I’m aware of what’s happening around me but can’t respond etc till the seizure is over, absence seizures I kind of go into my own world but can respond simple yes no answers but fail to follow the conversation enough to give a more detailed response. As for the memory loss I discussed this with my nurse, she stated that some Memory loss maybe partly my medication but that primarily it’s the focal seizures (mine are on my right side) and that this is just something I will have to accept so now I write a lot of things down, make sure enough people are aware of any important dates etc so they can remind me 😂 hope you find this helpful! It’s a really hard thing to adjust too I was diagnosed in November and I still have my bad days x

[Chingona in reply to Dixon2017]

I remember the neurologist warning me that I could have permanent brain damage from having so many seizures and if I didn’t control them and I just thought whatever. But my memory loss has really been a huge struggle and slowly gotten worse. It’s feels really scary, I also struggle with spelling, reading, focusing and I work as news reporter/photographer for a living! Im 33 with two kids and sometimes I just wonder what my future will look like if my memory is already this bad! My brain has a bunch of small lesions all over it. I also write down everything and have alarms going off all day to keep me on track😅

[Dixon2017 in reply to Chingona]

Do you find It hard describing it to people and them really understanding it?? I always get the whole “well we’re all forgetful every now and then” mmm yer ok 🙄 I even forget what the names of things are too, I can stare at an object and just think I know what you are but why can’t I say it

[Chingona in reply to Dixon2017]

Yes!! It’s so annoying! I can’t stand when people say that to me. Because this hasn’t been a slow progressive aging thing, so it’s kind of shocking. I forget what things are called too or I’ll mix up similar words. Once as I put the kids on the bus I yelled sweet dreams! Lol I meant to say have a nice day. On mother’s day my son made a fill in the blank book and on “My mom always...” he put loses her keys 🤣😭 I burn about half of the food I cook even though I have a rule for myself not to leave the kitchen when I’m cooking... I forget the rule! I think the worst forgetful moment for me was when I was having daily seizures and I actually forgot to get dressed after my shower and walked out my front door!!!!

[Chingona]

I don’t have your symptoms but im responding because I know that feeling all to well of “am I going crazy?” I have temporal lobe epilepsy and I do get weird auras. And as a matter of fact I had a really hard time talking about them because I thought I’d be committed lol my auras are impending doom, 100% pure panic. I was once convinced that the ravens flying around my house had a conspiracy against me and I hid in my house and shut all the windows hahaha. Then the shaking would come. It took me six months to get an eeg and be diagnosed with TLE, I was so relieved when the doctor explained that I wasn’t in fact going crazy! I have other seizures where I don’t have an aura I just get a sudden deep interest in something normal and it’s like I can’t stop looking at it and it’s so beautiful and I just absorb all the details and I just stare for maybe a minute? I think your eeg will help the doctors figure it out, but my point is the brain is a wild thing and those feelings you get could just be that. Also I tend to have seizures right before or on my period, hormones can impact seizures too especially in TLE

[kaileyris98]

Thank you everyone for your advice and help ❤️ my younger sister and cousin suffer from epilepsy but they both has tonic-Clonic and absent seizures never the type I’ve had but man I am struggling to remember things said to me an hour ago at the moment! I’m hoping once I see the neurologist I’ll get some answers. Bit over feeling crazy and having to repeat myself to so many people. I haven’t seen a pattern within me having my period and having these auras but in saying that I don’t get a normal period either so who knows! Thanks again everyone ❤️

[kaileyris98]

Thank you everyone for your advice and help ❤️ my younger sister and cousin suffer from epilepsy but they both has tonic-Clonic and absent seizures never the type I’ve had but man I am struggling to remember things said to me an hour ago at the moment! I’m hoping once I see the neurologist I’ll get some answers. Bit over feeling crazy and having to repeat myself to so many people. I haven’t seen a pattern within me having my period and having these auras but in saying that I don’t get a normal period either so who knows! Thanks again everyone ❤️

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The deja vu you'll get used to it it'll become a warning at some point the feeling in your chest anxiety arises when you have seizures it will pass in a few minutes after you start a seizure

Cbd helps with anxiety and will weaken your anxiety it won't be as intence.

[Considine]

Hello Kaileyris98, this is my first post on this site, I have learned a great deal from accessing the posts and reading the responses plus the printed information available from 'Epilepsy Action' I recently attended my first local support group and was made most welcome and I suggest you do the same.

Your posting and the replies are close to my own experience. I have yet to find any reference to TEA (Transitory Epileptic Amnesia) on this forum which my consultant diagnosed following a series of 'absences'. It is an unusual condition and further information can be gained by research.

I commenced a 250mg dose of Keppra taken am and pm increased to 500mg and as the consultant suggested this has proved very successful at controlling the 'absences' indeed I believe that my medication has significantly improved my analytical powers and mental stamina.

I would be interested to read of other members experience of TEA asp because after an 18 month wait I am seeing a neurologist in the first week of the new decade!

Some tips. Ready supply of post-it notes and propelling pencils. Keep a diary with you, I find the slim month ahead one sold by Smiths ideal, alternate colour each year, the previous year on the bedside table. I have an I-phone and take photos to remind me of places, events useful to find ones way back to an unfamiliar location etc also as they automatically transfer to my I-pad it's like having a readily accessible album of memories. I use the 'note' facility on my I-phone as memory prompts and the alarm clock facility to ring a few mins before something I want to remember. The combination of the facilities on my phone and paper diary gives me greater confidence. I still have short term memory issues but not total loss of memory as occurred previously.

The biggest factor is to REDUCE STRESS.

As an aside I have learned always to wear a sun hat, I appreciate that I may look a little eccentric wearing a straw hat at the first sign of a blue sky but I believe it helps. I traditionally have very low vitamin d and take prescription supplements, I do sunbathe!

Requests tests for vitamin d and this that and the other. It's impossible for a GP to understand the complexities of epilepsy, particularly rare variations like TEA.

This is my first posting

Anyone out there with TEA please post on this excellent forum.