Hi, I'm Electra!

[Electra]

Hello Everyone,

I was recently diagnosed with Epilepsy after ending up in hospital a few times with a deformed tongue. It took me a while to wake up on the last one...and ever since that episode I feel like I have lost my memory forever. I also get upset with my memory when at work because I can never remember instructions and people look at me funny when I ask again or they get pissed off. I think I have had this all my life but never knew what it was. I would get so upset because I was always told it was Anxiety when I went to hospital but nobody ever did an eeg or anything and I felt generally happy. I was also told it was shingles which left me wondering why I was having these electric moments which ended in a seizure. I have always had migraine auras and auras without migraines so I wasn't afraid of these weird new auras I was getting during the day but they were strange and I was starting to think I had a tumor. Instead, I hung out with Alice in Wonderland for a few minutes as I couldn't speak, move or function properly. I would just stare, talk to myself in my brain to try and recall where I was, why I was in a certain place, and what was happening to me but I couldn't recall anything until whatever was happening stopped. Then I felt bewildered and knew something was not right with my brain. And I wondered how long I stood still and if anybody saw me. My eyelids would also twitch before a biggie or my eyes would get stuck...my head felt like it is going to explode with electric shocks "ting" every few minutes and pressure, ohhh, not nice. I also got the electric shocks in the middle of my back. Grand mals usually happen in my sleep. I am on meds now and hope not to experience anymore for a while but I still get funny sensations and my memory is so bad and I leave words out alot when I type. I feel stupid. Sometimes I listen to what you are saying but I am not paying attention to what you saying...does that make any sense??? I don't know if I am going to be like this forever or what...but i sure need support so I know I am not going nuts.

 

[Nakamova]

Hi Electra, welcome to CWE!

Some seizures can cause cognitive issues, and some anti-seizure medications can cause them too. You might want to ask your doctor about having a neurospych evaluation done. It's basically a set of tests to measure different kinds of memory and recall skills. It can be helpful in setting a baseline to gauge any future cognitive changes. So for instance if you switch meds, you can get sense of whether your memory and attention skills are improving as a result.

Best,
Nakamova

 

[Endless]

Hi, Electra,

Welcome!

 

[knothing]

It is not just you and it makes perfect sense to me. I now leave letters and words out while typing. I read everything that I type twice just to make sure the words in my head made it to my screen. My memory got worse after my last 2 grand mal/ tonic-clonic seizures. I even forgot about a credit card I had a balance on.
It has been 2yrs since the last one and the medications are helping (Keppra and Vimpat). My memory came back but the typing is only better but far from back to normal. Once I must have had a seizure in the night (before the last 2) and I would randomly repeat words while talking for that entire day.
You are no more nuts than you were before. With seizure control and time you can hopefully get back to where you once were. I keep working at it everyday and keep improving every day. A big key is to get a neurologist that you can work with for control and with the rest I am not sure the proper way to get that all back but I just keep working at it.

 

[Electra]

Thanks for the welcome and input! Nice to hear from others. It means a lot to me.
I have a good neurologist and he did do a simple memory test. I knew a few words but I wasn't paying attention to him because I was trying really hard to remember those words so I could give him the right answer lol. I don't worry about it really but I get upset and cry sometimes when someone doesn't have patience with me and insults me for asking twice etc or when they say, I already told you that...didn't you write it down. I try and write things down and sometimes forget I did. And I find in many cases that the person said it so fast that I couldn't process it fast enough and get it all wrote down. And they are probably wondering why I am writing it down as well because the instruction is so simple. I hate feeling stunned as I used to be great at remembering dates, names, instructions, codes etc. I wanted to finish a Degree I started but I will never get through that now. I would never remember anything for a test. I have two college diplomas and a clerk job so I am fine with that. But now some people that I have worked with, went to college/university with or met in the past see me and say hello how are you doing and I am looking at them and thinking...how do I know YOU? Staring at them, they say, don't you remember me? We worked together etc. I must seem like such a snob. Thank God my husband knows most people that I know as well because I can't remember them and he can refresh my memory. Even at work I may walk into the lunch room and wonder why I am there. But my friends tell me to just say hi to whoever communicates with you as say you are wonderful, how are you, and pretend you know them anyway. So I just try to carry on. I worry about it but I go away wondering oh my, who was that! Anyway, my neuro said this memory problem will take time to heal but it's so irritating at times and I know people notice it. I had all the tests... CT, EEG, MRI. Seizures were on the EEG. I have to go back to see Neuro in four months so I will question this memory issue and the electric sensations. Maybe I should of taken a higher dose of Lamotrigne as he suggested. I am taking 200mg a day. I hate taking pills though. I aleady take blood pressure which is bad enough. The Neuro wanted me to increase it but I wanted to see how I made out first because I was really sick after the seizure and worse after taking the Lamotrigne (the first few week). Then I had a laughing fit...lol. Did you ever get that once you started a pill for the first time??? I don't laugh like that now though. My husband always has to remind me to take my pills and when I am pmsing he says, oh dear it's time for your happy pills. lol
I do feel semi back to normal but I still get weird electric feelings in my head which bothers me because I associate this as a sign a seizure will happen. I am hoping to get my driving license back too so hopefully I can get my brain in control. I am a working mom with kids so stress and being on the go are triggers I think?!?

 

[knothing]

My meds were more like sedatives at first but that eventually went away ....mostly. My main trigger is the one thing all parents suffer from......lack of sleep but stress can easily be a trigger. I have a friend who had neck surgery and has to take meds for like due to pain and it was a drug in the same family of an Epilepsy drug. He eventually had to find another drug so he could study for certifications because his was creating memory loss...in the end he passed.
Great to hear about the neurologist. As far as not knowing people just always say hi and ask how they are doing.....worst case everyone thinks you are very kind and caring person and you still have no clue who they are. I can think of worse things to happen.

 

[Burke914]

:e:I know I'm posting late, but I want you to I completely relate to your story. I have had cognitive issues both from seizures and meds, and the tingling pain you described. They even once told me it was shingles. I'm just now learning it was from a type of seizure. I have a scar deep im my temporal lobe near the sensory part of my brain. I have been on every seizure med they make. People make fun of me because I forget things, and it's not only frustrating, it hurts. Don't give up. There are always answers out there. And we are not alone. You gave me hope. Thank you.
Katie