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Hi everyone.

I am new to this forum and have a question. My seizures seem to include longer times where I am both not really present and memory loss after. Does this mean anything?
 

Nakamova

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Hi Calvin, welcome to CWE!


When you say "not really present" do you mean conscious but not fully aware? If that's the case, then it sounds like you are experiencing a Complex Partial Seizure. Memory loss afterwards is fairly common whenever there's partial or full loss of consciousness.

Do you keep a seizure diary? That can be helpful in noting changes in your seizure patterns. If your seizures are escalating in frequency, duration, or kind, then it's a good idea to talk to you neurologist about adjusting your treatment plan. A seizure diary can also potentially help you identify triggers that may be contributing to your seizures.

Best,
Nakamova
 
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Thank you for your reply, I mean full on no consciousness. No I haven't been keeping a diary but I will start. I am sure I am the wimpiest person ever but I have been afraid to bring this up with my doctors.
 
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Follow up -- I had a pretty bad grand mal seizure about a month ago and have been having foot drop since then. Anyone else experience that?
 

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Hi CalvinDurden,

Welcome to CWE.
Do you keep a seizure diary? That can be helpful in noting changes in your seizure patterns. If your seizures are escalating in frequency, duration, or kind, then it's a good idea to talk to you neurologist about adjusting your treatment plan. A seizure diary can also potentially help you identify triggers that may be contributing to your seizures.
:agree:with Nakamova, a seizure diary is a really good way to track your seizures & is very handy to take to neurologist appts. With a seizure diary you don't just have to write down the seizures you take but it can also be good to write down any triggers you may notice eg - certain foods, not enough sleep, stress.

I am sure I am the wimpiest person ever but I have been afraid to bring this up with my doctors.
Don't be afraid to speak to your neurologist about any concerns you have. Afterall they are there to help you control your seizures & they need to know everything (even if it is a little thing or sounds silly) so they can find the best treatment for you to help control your seizures.
 
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Here's why I am so scared. I am very newly diagnosed so this is new. My track record with medical stuff is bad. I have other health problems -- my anemia has actually killed me twice (true story). Intellectually, I know you are right but I am still working through understanding this and really am terrified. But then my memory problems have been pretty bad, too. Denial isn't just a river in Egypt.
 

Nakamova

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Definitely see the doc to have your symptoms checked out Calvin. The foot drop could be due to a spinal nerve injury (like a herniated disc) during your grand mal.
 
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You can do that during a seizure? Sorry, I am still trying to get all this straight. As I just told someone, my seizures started in 2008 but I didn't get this until a few weeks ago. I feel like my life has changed completely. It makes a lot of my memory problems and randomness make more sense but I am just now getting it is something I have to really deal with.
 

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There are other causes of foot drop, but since it started for you after your bad seizure, then some kind of secondary injury is the most likely explanation. The doc should be able to confirm one way or another.

Your ongoing memory problems and randomness could be due to absence seizures or complex partial seizures -- these types don't involve loss of consciousness, but because you aren't fully aware during them they can cause confusion.
 
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I have to ask you all something else -- a few things actually. I have read that after a partial seizure often people have trouble speaking and I think that has happened to me. Any ideas on how to deal with that? I mean I ran into someone and I just had no ability to reply to them and I looked like an idiot. Also, since my last seizure, I haven't worried or cared about anything, which is not normal for me. Worrying is practically a hobby. I am not really even worried about this, more curious.
 

Loopylil

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I have had a couple where I was convinced I had been kidnapped and had no clue who anyone was or where I was :(
 

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I sometimes have trouble speaking during a partial seizure. Sometimes I might say something which makes no sense or might be staring into space so not able to speak.
I once had a partial seizure while talking to a friend on the phone, I went to say something & nothing would come out of my mouth.
 
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denial

I am but I just started. I have been looking into how what I am taking for this might be interacting with something I take for another problem and that might be making this worse. I am going to talk to my doctor about that on Monday. With any luck, if I stop that this will improve.

My brain is having a hard time accepting this, I work in communications and do stand-up comedy, the ability to talk is kind of essential to my life. I am starting to think the universe really wants me to shut up. All year I have been throat problems that get so bad that I sound like a sick dolphin.

Sorry for rambling but thanks for giving me a place to do it.
 

valeriedl

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You need to let your drs know what's going on with you so they know what's going on and how you can be treated for this. Defiantly keep a seizure diary and show it to your drs.

Alot of times when I have a seizure I'll blank out of it. I won't even know that I've had it unless there is someone there to see it happen. Also after and sometimes during a seizure I'll be talking and not making any sense at all. I might know what I'm saying but it isn't what's coming out of my mouth.

People ask me questions like what's my name, what's their name, where I am and other sorts of things. When I answer the questions correctly then it means that I'm out of the seizure. I don't think there's anything that you can do to stop that, it's just a normal thing that happens.

I've got memory problems also because of the epilepsy, long term and short term. It's also something that I've just learned to deal with. I keep a small diary with things that day so I can go back and read it. It doesn't help with the memory but it's a way to know that you did it.

A lot of times during a seizure I'll start walking around the house doing things and not knowing I'm doing it because I've blacked out during the seizure. I've loaded the dishwasher, tried to change my clothes and walked from room to room in the house looking for something for about 10 minutes. You can hurt yourself by doing things that you don't know you are doing or as others said fall and hurt yourself pretty bad.
 
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now that you mention it

You just reminded me of something, I was at my boyfriends house sleeping and when I woke up I thought I was in some alternate reality -- think 1984 and he was Big Brother and I had to find a way to escape. I was terrified and he thought I was out of my mind.

And just now I looked down at something I had typed and it was gibberish. Words in the wrong order and nothing like what I wanted to write. If I lose the ability to communicate, well, I am not sure how I feel. I actually paged my doctor and I have an appointment on Monday.

I am telling everyone I am fine but the more I think about this, I see I have been having seizures for a long time and I have never been more scared in my life.

Thank you for letting me share.
 

Nakamova

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Calvin, if you have been having throat problems for year, there may be a connection with your seizures. Generally, illness or infection can be a stressor that lowers your seizure threshold. More specifically, you could have an infection along the lines of walking pneumonia that could be more directly related to your seizures. Has your throat problem been diagnosed?
 
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I don't have an infection but appreciate the idea. I have a super sensitive throat I guess -- I work in communications and if I spend the day pitching, I lose my voice. It happens all the time.
 
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I just put together a timeline of sorts for a new neurologist I am going to see and realized this has been going on a lot longer than I thought. Throughout the past year I have had bought of not being able to speak, I thought it was some kind of crazy laryngitis as I get that all the time but with that I can whisper, with this I cannot.

It's making me move out of the comfy state of denial I have been in.
 
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