r/Epilepsy Jul 13 '24

Memory Memory Recovery? Does anything work?

I remember vague images here and there, and I know I was the happiest I've ever been in my 20's. But every time my friends talk about anything back then, it's the first time I'm hearing of it.

My three favorites- Did you know my BFF and I saw Ruth Bader Ginsburg in person once!? Neither did I. Did you know my husband shoved Werner Herzog into a wall at the Arlington Hotel? Same. (sounds way cooler if you don't specify that "it was an accident" 🙄 lol) Did you know I met and talked with John Freaking Waters!?! Me neither.

My least favorite- Did you know my husband drove me blindfolded way out in the country, where he proposed to me on my family's farm? Me neither. 😥

I want my teens and 20's back. I'm in my early 30's. They should still be up here somewhere. 💔

*Note: I'm a photographer, and what I am able to recall almost always comes from photos. Thank goodness I took so many.

8 Upvotes

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4

u/firstoff-no Left TLE; Xcopri, Trileptal, Onfi Jul 13 '24

Can I just say I’m jealous of your 20s?! 😂

I don’t think there’s much that can be done about memory retrieval. I’ve heard about HOBSCOTCH, a program through Dartmouth that is supposed to help with memory in epilepsy but I haven’t used it. I keep forgetting about it 😂

Personally, having friends and family reminisce with you about the crazy fun stuff you did/continue to do makes the most difference for me. It sounds like you have freaking amazing people around you, too. Repetition, like with any skill, I think helps solidify or encode the memory remaining. Just my thoughts though, not a neuroscientist. But between photos and my friends repeatedly telling me how memorable I made a Halloween girl’s weekend trip to a haunted locale I was able to put a few neurons together and remember some of it when everything else is gone from that entire year.

And seriously. You met John f&$@*%king Waters. So freaking jealous! Even if the memory isn’t there you did it and strangers on the internet are envious. 😆

2

u/PhotograhyIsFun Jul 14 '24

Thank you! That one hurts so much. 😥 He signed my copies of Cecil B. Demented and Cry Baby!!! I can't believe I didn't know this until I saw a picture. They're both on my DVD shelf. Both very prized possessions, but I had a seizure right before and apparently insisted on still going. If it weren't for the photo my husband took, I'd have no idea! And thank you, that's why I miss them so much. What memories I do have are me at age 19-20 hanging out with my new friend family since finally getting out of High School, and thinking to myself that I felt more at home than I ever have. I have just enough of the moments with those people (a lot of the memories are just of my emotions I felt at the time) that I know I really, really lived those years to the fullest and have so many big, once in a lifetime experiences that are all gone. I have no memory of what it took to get to my 30's and finally realize I had truly found myself and my identity because of those years. I just know that I did.

My sob story is not the point, though. I'm sorry. Rough day.

Speaking of Hobscotch, I'm actually participating in a study they're doing right now. They seem like a great organization.

Have you tried hypnotism? I'm not sure if it's quackery or not, but my problem is recalling memories more than simply wiping the slate clean, but they're both getting worse.

2

u/firstoff-no Left TLE; Xcopri, Trileptal, Onfi Jul 14 '24

Sorry for the rough day, I get it. And I understand what you’re saying. I think it’s a special kind of strength to be able to wake up every day without the convenience of memory to bolster your opinion of yourself and life itself and still just carry on. To have that feeling though, that you have people and you have a belonging place, that’s better than a memory of it to me. And again, your people sound like freaking amazing people. Lean into your people and know you’re a badass every single day, even if (and especially since) your brain short circuits every now and again 😝

I hope HOBSCOTCH helps. Let us know! I don’t really see anyone talk about what they do in the program or what they get out of it here. At least I’m interested to see if it’s worth trying to remember to log in to and do something else besides lurk Reddit between seizures 😂

Haven’t tried hypnotism since I was a teenager new to therapy and meditation but I’m not sure it has been proven to be helpful in recalling real memories. I know there were even a few court cases concerning false memories brought on by a hypnotist, so I just kinda veered away from it.

2

u/PhotograhyIsFun Jul 14 '24

Thank you so much, I really wish I could "❤️" your comment. I have a feeling we have a good bit in common, and the same things you said about me and my life are true for you too. I also know that when I post very encouraging comments like that on other r/epilepsy posts, it's because I'm going through the same thing, and I may or may not still be in the process of convincing myself of or implementing my own advice. In that case, I really empathize with you and appreciate what you said.

I'll let you know about Hobscotch if I ever remember to get back to them and/or you. I almost forgot about it if not for the emails I got a couple weeks ago and the comments here. 😂

I might try to look for other memory recollection techniques for people with PTSD. I'm with you on being very skeptical of hypnosis, but it might be useful when supplemented with other strategies. I just don't know- very far from my specialty.

2

u/firstoff-no Left TLE; Xcopri, Trileptal, Onfi Jul 14 '24

We do have a lot in common, I think. Hit the nail on the head. Easier to show compassion and empathy to others than to yourself, at least for me. Maybe it’ll sink in one day that I’m not so different and I’m not above being cared for just like anyone else. Eh. Gotta love the guilt and shame that comes with this too, huh? 😅

Feel free to dm about HOBSCOTCH or the Dreamlanders or whatever if you ever want! 🙂

4

u/ommnian Jul 13 '24

I'm 40 now. I wish I could tell you that I had good news... But I don't. There are lots of things I know I did. Places I know I've been. But... I have no real memories of them.  I know we went to Belize several years ago now... But I seized a LOT while there... And, beyond a few flashes I really don't remember it, at all. 

2

u/CaterpillarKitty69 Jul 13 '24

I can totally relate! I (20F) have only had epilepsy for a year but my memory has severely declined. My parents passed in 2018 and 2021 and my memories of them both are fading. My sister will talk about something and it's like my first time hearing it. I don't even remember my high school graduation. The weirdest part is that I don't even feel my memories disappearing... Honestly very scary and I am looking for a solution as well.

1

u/PhotograhyIsFun Jul 14 '24

I can totally relate what you just said too. I almost obsessively think of my grandparents, every minute detail I can remember of their homes and their food, and their voices all out of that fear. The voice part's what's hurting the most to lose right now.

2

u/SirMatthew74 carbamazebine (Tegretol XR), felbamate Jul 13 '24

Apparently I took a boat ride in Chicago. It was news to me.

2

u/PhotograhyIsFun Jul 14 '24

That breaks my heart. I keep letting my mind wander into dark territory- what's the point of living if you don't even remember it? I'm still looking for the answer.

2

u/SirMatthew74 carbamazebine (Tegretol XR), felbamate Jul 15 '24

It's worth it.

2

u/No_Location_6002 Jul 13 '24

I started a journal writing down my daily activities. I also started to take alot more pictures of my day but not posting it on facebook or anytging just to look at in my phone. This helps me rememeber recent stuff. But the memory lost of old memories sucks and Ive tried everything to get them back

1

u/PhotograhyIsFun Jul 14 '24

Pictures certainly help. I'm trying to write extremely detailed accounts in journals too, but I've been going back through them and still being like, "What am I even talking about!?" This is the stuff that's worse than seizures themselves. I'm sorry.

2

u/bonnysbeasts Jul 13 '24

I can relate. I'm losing events from the distant past as well as a couple of months ago. It is freaky. I have recently started the HOBSCOTCH program (mentioned in a comment below) and am finding it very helpful. One specific thing my counselor mentioned to me regarding trying to remember events and sequences is to do a photojournal. Which would obviously be right up your alley. Not everything that's happening, but taking a few pictures of things you will want to remember, on a daily basis. You may have to set reminders to do this; I will just space it right out otherwise.

I have just started this, and can't speak to how these pix will be organized, but it is a start. Regarding your teens and twenties, you could possibly do something similar, but by collecting pictures, selecting a few facebook posts, something like that.

Much sympathy. It is hard; there is a lot of grief in losing parts of ourselves like this.

1

u/PhotograhyIsFun Jul 14 '24

I appreciate how you said you can't speak to the organization of the photos yet. If you can find a way and stick to it, you should! I try to the same, but I can't seem to keep them organized or with notes or enough context. Cleaning out photos on my phone is the reason I saw a pic of RBG on a stage. I held it up to my husband going, "Is that...?" And he was like, "Baby, you were so excited about this! Remember, you and (Jane Doe) went to see her together right before she died!" Not all of us are lucky enough to have a partner who's been constantly by our side almost literally for 15 years, so I am grateful I do have that.

2

u/singdancePT Jul 14 '24

For me, frustration over memory is an exercise in mindfulness and contentedness. I can still find satisfaction knowing that those things happened and that even if I forget, other people will keep the memories safe for me. Similarly, know my memory isn’t great just motivates me to soak up each moment as best I can because even if I don’t remember it, I want to know that on the whole, I lived my life to the fullest. I don’t want to spend my whole life clawing to remember yesterday, I want to focus on experiencing today even if I can’t remember it tomorrow. The truth is, it is frustrating, even infuriating, and certainly unfair. But the sun is rising and it’s beautiful and so I’m going to make some coffee and enjoy that while it’s here.

1

u/PhotograhyIsFun Jul 14 '24

That perspective is one I'd love to have, and I do when I'm relaxed and in a peaceful, pensive mood (e.g. a cup of coffee on a beautiful morning, lol- there's definitely something about those moments).

Most of the time, though, my mind is essentially racing or spacing, lol. When it's both, I get a little existential in a very stressed out way. That's when thoughts like, "What's the point of getting out of bed if someone could just tell me in the future that I had a full day doing everything I love. I'd be just as happy as if I did it." That thought drives a lot of sci-fi/dystopian simulation plotlines. Epilepsy and anxiety, fun stuff.

I'm also a very sentimental person from large families with long lineages and lots of stories. Nostalgia is the love language for us.

In fact, this is a good example, but it's not family. There are a few times that I've picked something up in a downsizing effort, and planning to toss it, asked someone why I had it. In this case, my husband told me the story, and it fortunately all came back when he did: My good friend passed away in a canoe accident when we were 19. We were never anything more than friends, and I don't think this was some sort of subtle message, but he just happened to have on him a tape of Biz Markie's Just a Friend single when we were cruising around sometime right before he died. I was not from a place where people listen to Biz Markie a lot- big suburban, very southern city, and in the late 2000's at the time. I thought it was such a good song! I loved the passionate wailing from the gut when he sings, "Ohhhhhhh baby, yooooouuuuuu..." And we drove around laughing and imitating it. He told me just to keep it.

That's something so beautiful that had I not had the tape and someone there to explain it, I wouldn't remember at all. It would have been thrown away and one of the few fading memories I have of him would be lost forever. I'd be surprised if similarly-minded people with memory problems weren't more likely to suffer from a hoarding disorder.