Hey everyone, haven't been here in a while. I've been having this problem since not long after I started having seizures 15 years ago. Since that time I've had gradual memory issues. They've been getting a whole lot worse lately. I'm repeating myself a lot, forgetting a lot of things/people and missing appointments. I even forgot my own birthday. This morning I woke up and checked out what time it was. I have an analog clock hanging on my wall without numbers on it, I couldn't remember how to read it. I then went to make some coffee, I filled it with water, refilled the coffee basket but didn't close the lid or turn it on. Half an hour later I'm sitting here wondering why I'm not hearing or smelling it. My writing sucks (I've already fixed at least a dozen things), I lose myself when talking, just completely forget what I was saying in the middle of saying it. Frankly it's scaring the h*** out of me. Thing is, I'm not so sure I want to tell anybody. My girlfriend already seems to be not so understanding of those things and I'm afraid she will end up thinking of me as more of a hassle than anything. It's a great relationship, we've been together 9 months now. There's also my mom who I live with more for safety reasons than anything. I'm already wrapped in bubble wrap having everything I do questioned. I seemingly have no freedom. Guess what I'm asking here is both wth should I do, and how bad does anybody else have this?
Bad memory only getting worse
- Thread starter gowings83
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Well here's some proof for you, I forgot to also say I've been having really really bad headaches. I mean they're starting in the back and gradually getting up to the front. The days I have no "medication" I need a license for (doctor won't give it to me) I'm basically holding my head feeling like I broke a bone.
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My memory is horrible and it drives my family and husband crazy.
It actually took me about 3 years to remember that President Regan had died, and I even watched his funeral on tv. Any time something would come on about him saying when he passed away I would be surprised and ask my husband when he died. He thought I was joking at first then he realized I wasn't. Now that I remember he did die it is sort of a joke between the two of us (I think it's funnier than he does though).
After my first seizure about 10 years ago (when I was 26) I forgot almost everything that happened 10 years before it. There's a few things still up there but not much. When I first started having seizures I'd forget stuff that happened a day or two before that seizure. Even now after a seizure, depending on how bad it is, I'll still forgot things that happened before the seizure.
My memory in general only lasts about 3 months now then it starts to fade away. I have a hard time remembering what happens week to week during tv shows that I watch.
I've got everything important wrote on the calendar and on a small pocket calendar that I keep in my purse. I've got alarms set on my cell phone that remind me of things that are coming up. I've got post its all over the house and things hanging on the fridge that are important and I need to remember.
If I don't see a person on a very regular basis I have no idea who they are. They start talking to me about things that are going on in my life and I'll just say "I'm sorry but who are you?" It sounds stupid but it's just something that I have to do.
I think everyone has cooked a ton of things without turning the oven or what ever on. I boiled a pot of water for around 20 minutes once and couldn't figure out why it wasn't even starting to boil. Then I realized I never turned the burner on. My husband does this a good bit too. He recently put something in the oven and set the timer. When the timer went off he went to take it out but realized he never turned the oven on. I've put clothes in the drier for a few hours and went to take them out they were still soaking wet because I never turned it on - I know my husband has done this too. So you're not alone in this one.
My husband doesn't work the same schedule every week. He tells me what he'll be working and I never can remember it. I wish he'd write it down on the calendar but he never does. The only days he writes that he'll have off are vacation days.
Do you think you might be having more seizures than usual? Did you ever get headaches after seizures normally? After most of my seizures I'll get a horrible headache that will last for hours. Mine are in the front top of my head but I think everyone is different with these. I'll have trouble talking during them too.
You need to make sure you have your medicine to take. It will make things worse if you don't. At my pharmacy you can refill the prescription 10 days before you are out of pills. I always make sure I call them in then. I can't drive but within that 10 days there is someone who can get me to the pharmacy to pick them up or they will pick them up for me. If you don't get your seizures under control then you aren't going to be able to drive.
You need to tell someone what's going on. Let your dr know about it if you don't want to tell your mom, girlfriend or anyone else. By doing this he can try to make things better.
Please don't take me for sounding rude about this but if your girlfriend can't be understanding about things then she's not worth having around. The guy I was dating when I was first diagnosed couldn't. I had to move back home with my parents which made the two of us live about an hour away. It was very hard for us to get together and he really didn't put too much effort into it. All we could do was talk on the phone most of the time and that's no way to have a relationship.
I had only been diagnosed with epilepsy for about a year before my husband and I met. No one really knew what was going on with me at the time so there wasn't much to tell him because we just didn't understand it yet. When I had my first seizure with my husband (we had only been dating for about a month) I ended up in the ER. My mom started crying in the waiting room because she thought for sure he was going to leave me. He told her he wasn't going anywhere because I was the best thing that ever happened to him.
He started coming to my neuro appts with me and my mom (calling off work) so he could learn more about my seizures and how he could help. He would ask the nero questions he had and answer questions the neuro had. I think he knows more about epilepsy more than I do sometimes. If she's not the right one then the right one is out there waiting for you.
It actually took me about 3 years to remember that President Regan had died, and I even watched his funeral on tv. Any time something would come on about him saying when he passed away I would be surprised and ask my husband when he died. He thought I was joking at first then he realized I wasn't. Now that I remember he did die it is sort of a joke between the two of us (I think it's funnier than he does though).
After my first seizure about 10 years ago (when I was 26) I forgot almost everything that happened 10 years before it. There's a few things still up there but not much. When I first started having seizures I'd forget stuff that happened a day or two before that seizure. Even now after a seizure, depending on how bad it is, I'll still forgot things that happened before the seizure.
My memory in general only lasts about 3 months now then it starts to fade away. I have a hard time remembering what happens week to week during tv shows that I watch.
I've got everything important wrote on the calendar and on a small pocket calendar that I keep in my purse. I've got alarms set on my cell phone that remind me of things that are coming up. I've got post its all over the house and things hanging on the fridge that are important and I need to remember.
If I don't see a person on a very regular basis I have no idea who they are. They start talking to me about things that are going on in my life and I'll just say "I'm sorry but who are you?" It sounds stupid but it's just something that I have to do.
I think everyone has cooked a ton of things without turning the oven or what ever on. I boiled a pot of water for around 20 minutes once and couldn't figure out why it wasn't even starting to boil. Then I realized I never turned the burner on. My husband does this a good bit too. He recently put something in the oven and set the timer. When the timer went off he went to take it out but realized he never turned the oven on. I've put clothes in the drier for a few hours and went to take them out they were still soaking wet because I never turned it on - I know my husband has done this too. So you're not alone in this one.
My husband doesn't work the same schedule every week. He tells me what he'll be working and I never can remember it. I wish he'd write it down on the calendar but he never does. The only days he writes that he'll have off are vacation days.
Do you think you might be having more seizures than usual? Did you ever get headaches after seizures normally? After most of my seizures I'll get a horrible headache that will last for hours. Mine are in the front top of my head but I think everyone is different with these. I'll have trouble talking during them too.
You need to make sure you have your medicine to take. It will make things worse if you don't. At my pharmacy you can refill the prescription 10 days before you are out of pills. I always make sure I call them in then. I can't drive but within that 10 days there is someone who can get me to the pharmacy to pick them up or they will pick them up for me. If you don't get your seizures under control then you aren't going to be able to drive.
You need to tell someone what's going on. Let your dr know about it if you don't want to tell your mom, girlfriend or anyone else. By doing this he can try to make things better.
Please don't take me for sounding rude about this but if your girlfriend can't be understanding about things then she's not worth having around. The guy I was dating when I was first diagnosed couldn't. I had to move back home with my parents which made the two of us live about an hour away. It was very hard for us to get together and he really didn't put too much effort into it. All we could do was talk on the phone most of the time and that's no way to have a relationship.
I had only been diagnosed with epilepsy for about a year before my husband and I met. No one really knew what was going on with me at the time so there wasn't much to tell him because we just didn't understand it yet. When I had my first seizure with my husband (we had only been dating for about a month) I ended up in the ER. My mom started crying in the waiting room because she thought for sure he was going to leave me. He told her he wasn't going anywhere because I was the best thing that ever happened to him.
He started coming to my neuro appts with me and my mom (calling off work) so he could learn more about my seizures and how he could help. He would ask the nero questions he had and answer questions the neuro had. I think he knows more about epilepsy more than I do sometimes. If she's not the right one then the right one is out there waiting for you.
I also forget things right after seizures, usually about 2 days before and 1 day after. I don't think I've been having more seizures than before however I did have a stint where they were a lot worse. Like stop breathing and concussions worse. I've had headaches all along but they were something some tylenol could get rid of. Now the only thing that helps is marijuana and that's only a temporary fix. They're usually behind my eyes, in my forehead and most of the way back. I haven't seen the neurologist in about 3 months, she only comes to my city one weekend a month but I called for an appointment today. I also told my girlfriend what has been happening, she actually broke down because I am feeling worse. She never realized what she had been doing before. At least now she knows. Hopefully this doesn't get any worse than this, I really don't want to lose what little I seem to have left in my brain 
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The worse the seizure the worse the side effects are for me. Is there maybe another neuro in your area that you can see if you aren't able to get appointments with your current one? I make an appointment with mine every 3 months but if something seirous happens he can usually get me in with in a week.
I'm glad your girlfriend understands, that's going to help you with some things now I hope.
I'm glad your girlfriend understands, that's going to help you with some things now I hope.
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It might help to see a neuropsych to have some memory testing done. The tests can help distinguish which memory functions or cognitive processes are affected, and the neurospych can recommend tricks and workarounds to help you cope. The tests also set a benchmark that you can measure any future changes against -- say, if you were to change medications and/or get better seizure control.
I just read about this one memory tip: Clench your right fist when you are memorizing (encoding) something, and clench your left fist when you want to recall it. (Do the opposite if you are left-handed). This link mentions the study, plus two other memory aids: http://www.nydailynews.com/life-sty...ry-clench-hands-fists-study-article-1.1330135
I just read about this one memory tip: Clench your right fist when you are memorizing (encoding) something, and clench your left fist when you want to recall it. (Do the opposite if you are left-handed). This link mentions the study, plus two other memory aids: http://www.nydailynews.com/life-sty...ry-clench-hands-fists-study-article-1.1330135
Hi gowings83! It's nice to 'see' you this evening. I'm struggling with short-term memory deficits (not to the severity that you are), and the ramifications that these cause on independence and life in general.
Picture a conversation like a train. I'll be thinking and speaking, and then, suddenly the train will disappear...but by the time the train of thought reappears the conversation has ended because of impatience on the receiving end. You know what I mean?
Do you have trouble connecting your brain to your mouth when you aren't having a seizure? Lots of times I'm wondering if I am having seizures throughout the day and not even knowing it (especially when I'm not around my parents)? This brings up the issue of independence. I keep a notebook as my short-term memory (like valeriedl keeps her calendar); however, this doesn't help when I am face to face speaking with someone. I put notes with people's phone numbers on my calendar. It reminds me of the movie Memento literally. Post It Notes are a great idea, valeriedl, and I'm going to start using them!
I'm looking into housing, and this is a concern of mine and my case manager's.
Let me know what you think! I'm highly interested. I'm under indigent neurology care, so I understand how you feel having a neurologist with limited availability. I'm on a waiting list, and still having partial seizures.
Picture a conversation like a train. I'll be thinking and speaking, and then, suddenly the train will disappear...but by the time the train of thought reappears the conversation has ended because of impatience on the receiving end. You know what I mean?
Do you have trouble connecting your brain to your mouth when you aren't having a seizure? Lots of times I'm wondering if I am having seizures throughout the day and not even knowing it (especially when I'm not around my parents)? This brings up the issue of independence. I keep a notebook as my short-term memory (like valeriedl keeps her calendar); however, this doesn't help when I am face to face speaking with someone. I put notes with people's phone numbers on my calendar. It reminds me of the movie Memento literally. Post It Notes are a great idea, valeriedl, and I'm going to start using them!
I'm looking into housing, and this is a concern of mine and my case manager's.
Let me know what you think!
I'm highly interested. I'm under indigent neurology care, so I understand how you feel having a neurologist with limited availability. I'm on a waiting list, and still having partial seizures.This is a great link with some memory tips. It's in a slide format, so it's easier to digest.
http://www.epilepsylifelinks.com/im...bliger cognitive remediation and epilepsy.pdf
http://www.epilepsylifelinks.com/im...bliger cognitive remediation and epilepsy.pdf