My first seizure: memory loss? confused/sad. Please help!

Hi, I am new to forums (I have never posted on one before), but I came across this one and thought maybe someone would be able to help me. I had my first seizure about a month and a half ago and so far have not had another one. I have seen a neurologist--he does not know what caused my seizure. I have not had an EEG or MRI yet, but the neurologist does not believe I have epilepsy, as I am 31 and onset adult epilepsy is not that common. I am experiencing some things that are unsettling to me and I'm hoping that someone would be able to understand if what I'm experiencing is related to the seizure or even if what's going on is normal after a seizure.

I had the usual experience during what I guess is referred to as a Grand Mal seizure (full convulsions and disorientation); I have no memory of the seizure, before or after, and had short term memory loss (the year, my age) that eventually came back. But the problem I'm having now is that I am struggling with my memory on a daily basis with regular things, things not related to the seizure. For example, I will speak to my mom on the phone and she will tell me that I told her all about that specific topic the day before...I have no memory of this. I told my fiancé that I want to see Despicable Me...apparently we watched that movie already recently but I don't remember. The things I can't remember are not large, important details/events (luckily) but rather minor ones that just leave me frustrated, confused, and sad. Is it normal to have memory loss a month and a half after having a seizure? To forget things you did yesterday? Also, is there any chance that I could possibly forget things because I blacked out? Or when you black out, would I be non-functional? 

Besides the memory loss, I have a hard time remembering large words or how to spell things, which has never been a problem for me. So this is frustrating and confusing to me because I have moments where I completely draw a blank with words or how to spell the simplest of words. I've also found myself having difficulty with simple math, my coordination is sometimes spotty, and my common sense abilities are long gone. Is any of this normal?

I'm also curious about what it is like to black out. Would that mean I am experiencing some form of a seizure? Would I realize that I had blacked out? I'm wondering because when my fiancé came home from work the other day and asked what I did all day, I realized I wasn't sure...I realized it was already evening and I'm not sure where the hours went, if you know what I mean. Does that mean I experienced a black out?

Another thing...are the severe headaches normal? Is occasional dizziness related?

And one last thing...I have these weird feelings that overcome me that are hard to explain, kind of like deja vu. I have had moments of deja vu in the past but nothing like this. Now it's as if I can see what's going to happen before it does and it's a very strong feeling. Also, I had a moment the other night when I was alone that someone was about to burst through my dining room and hurt me...the feeling was so strong that I was physically scared and had a hard time calming myself. I have read through other forums and read that someone maybe experienced something similar. Is this related to my seizure? Is there more going on in my brain than I'm aware of?

Finally, can I have a seizure without going into full convulsions? I don't feel like myself lately. I feel like a computer that was shut down and is rebooting...only I'm taking a long time to reboot. I'm slow to respond to things, to put ideas together, I just don't function smoothly, I don't know how else to explain it.

I do not mean to take away from those that have epilepsy and have seizures on a regular basis--I can't even imagine what that is like. I know that I've only had one and to some that's not a big deal. But for me, it's been very frustrating and confusing. And honestly, it's made me very sad and depressed. So I would appreciate if anyone has any advice or can relate to what I'm going through simply to ease my mind that perhaps this is normal and that maybe I will return back to normal? Or is it possible that I will never return to being 100%? Please help me understand what's going on. If you have any answers to my questions, please help! I would greatly appreciate anything anyone can tell me!!

Thank you so much!

:) Mandy


Re: My first seizure: memory loss? confused/sad. Please help!

I have epilepsy and I've never had a grand mal, so yes, you can have a seizure and not go into convulsions. There are many many different types of seizures.

It's possible that you've had epilepsy your whole life, but for the first time ever, one of your seizures generalized into a grand mal. I'm not a doctor, but I've done a lot of research to understand my disorder a little better. Because I have complex partial seizures, I have a tiny chance of having a grand mal at one point. It has not happened yet. Knock on wood.

Go get that EEG, that MRI, find out whether or not you're having seizures but just not know it. Most of my seizures are less than a second long, so I have no idea I'm having them.

I'm not sure about the memory loss, although I have a lot of that anyway but not in the extent of what you are describing. I also get migraines often, and dizzy should be my middle name.

If you ever want to chat more, just send me an email! :)

Re: My first seizure: memory loss? confused/sad. Please help!

Also, I just wanted to add something. I read your post while I was tired, so I didn't "see" it all. You are talking about deja vu, that's one of my most common auras before a seizure. It gets so intense sometimes I nearly cry. You need to get checked out ASAP.

Re: My first seizure: memory loss? confused/sad. Please help!

Memory loss is not uncommon with Temporal Lobe Epilepsy (TLE). The left side of your brain, or "temporable lobe", is often affected which can often cause seizures. The condition of the left side of the brain, "left temporal lobe", can be seen with an MRI. This affects memory.

1. Get an MRI and keep the copy. You paid for it, it belongs to you.

2. Ask to be shown the part of the brain which is the left temporal lobe. You will see the hippocampus. Look at the left hippocampus and compare it to the right hippocampus. You will see if there is a difference in size. It is the doctor's responsibility to show you this.

3. You can keep the CD of the MRI and look at it on your computer at home (approximately 240 pictures). Keep it on file for your reference in the future, maybe to compare to anothe MRI years down the road. 

4. Any affect on the hippocampus would be called "hippocampal sclerosis". I would guess since there are 3 million people in the U.S., hundreds of thousands have the same condition. (I do).

Re: My first seizure: memory loss? confused/sad. Please help!

Thank you everyone for all of your information! It makes me feel a little better to know these things that I'm experiencing are normal, but it does concern me as to what the bigger picture will look like. The only reason that I have put off getting the EEG or MRI is because I was trying to get health insurance, but I can't get any company to take me on because of my "recent, unexplained seizure". So I promise I will schedule those asap and just throw them in with the rest of my medical bills. And I will get a copy of my MRI. Also, the idea for keeping a journal will be really helpful... thank you!

Also, out of there any chance that I will be able to drive again? Not that I want to rush into putting myself back on the road, but just wondering if there is any way this can play out where it is safe for me to drive again.


Re: My first seizure: memory loss? confused/sad. Please help!

I almost forgot... what about black outs? Will I know if I've blacked out? Or will I just be left wondering where the time went? Thanks

Re: My first seizure: memory loss? confused/sad. Please help!

the blaclouts would be like grand mal seizures without the convulsion. Is those you know nothing of what happeded or the time it lasted. Most blackout whether seizures or not generally are the same blank spaces no input.

Re: My first seizure: memory loss? confused/sad. Please help!

Typically, there are laws in your state that dictate when you can drive. This usually pertains to the amount of time that you are seizure free. 


Re: My first seizure: memory loss? confused/sad. Please help!

The episodes you're experiencing could be auras (simple partial seizures) or other types of seizure activity but this would need to be confirmed by your doctor.  Document the episodes (time, feeling, other's observations,etc) so you can be ready to tell your doctor.  Because of the episodes you have been experiencing, I think it is important to have an EEG done and perhaps other diagnostic testing.  I'd contact your neuro as soon as possible to convey this information.  If in the event that these episodes may evolve into a generalized seizure, keep in mind that this can present a dangerous situation should you have these episodes while driving.

Keep in mind that some prescribed medications and over the counter medications can lower the seizure threshold in some patients. Don't know if this may be the root of your problem but I thought it's worth saying.


Re: My first seizure: memory loss? confused/sad. Please help!

Teh dega vu you are talking about is basically a seizure in itself. I was diagnosed with epilepsy at 13. I also know that if you have a grand mal seizure you will not know what happened or how long you were out. You will be tired and disorenated. Other things you spoke of could be partial seizures or absence seizures. DO ask your neuro about an EEG and MRI.

Auras or deja vu is basically a seizure in itself. As for not remembering words and things you hae done that could come from many things So check with your doctor and bby all means start a diary. There is one available at the top of the page. Note your feelings and anything tat has been wierd, Either take the diary with you or theone on this site can be sent to your doctor.

I hope they find out what caused your seizure

Re: My first seizure: memory loss? confused/sad. Please help!

Hi...I have to agree with the others on here....I was diagnosed with Vertigo epilepsy when I was 5...1980. I tok meds Dilantin until I was 8 and hsd a abnormal EEG.....then due to "life" issues I never had another EEG...unti I was 36 and had confusion...did not know my etc.....I had no memory of anything and ended up wiyh my husband rushing me to the hense my updated diagnoses of non convulsive absence status epilepticus....see my post on the new user forum.....when I have this seizure it won't stop until I go to the ER....and they give me a shot of Adavan to bring me out o f EEG was again abnormal....I have constsnt brain wave spikes all the time....yes for sure get a EEG as soon as possible...I wish I would have had yearly EEGs sence I was wishes and good luck... 8)