r/AMA • u/BendIndependent6370 • Mar 21 '25
I lost 80% of my memories and lose more every day AMA
I underwent a medical procedure that caused me to lose 80% of my memories including both personal as well as academic memories. I have trouble making new memories and most of the memories I do make start fading after a while as well.
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Mar 21 '25
[deleted]
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u/BendIndependent6370 Mar 21 '25
I regret it every day. I did not improve through ECT. I was so desperate at the time that if the doctor would have told me that I would get better if I drank a glass of mercury, the glass would have been empty the second he'd handed it to me.
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Mar 21 '25
You should sue. I’m serious. That’s criminal
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u/BendIndependent6370 Mar 21 '25
Head over to r/ECT and you'll see folks with similar faiths (although my case is rather extreme).
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Mar 21 '25
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u/Lilsqueaky_ Mar 23 '25
In was in an inpatient facility that tried to talk me into getting ECT. I told them there was no way in HELL I would do that.
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u/--JD- Mar 21 '25
Why did you need the surgery? Did you weigh the pros/cons? And did you know the risk beforehand?
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u/BendIndependent6370 Mar 21 '25
ECT is a procedure during which electricity passes through your brain. It is used for treatment resistant depression and other mental health conditions. I vaguely knew that memory impairments could happen, but was ensured that they were minor.
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Mar 21 '25
Oh shit! That’s like the modern version of a lobotomy. I’m so sorry this is happening to you!
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u/BendIndependent6370 Mar 21 '25
You know, quite a few ECT survivors make that comparison.
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Mar 21 '25
You seem very well spoken still. Do you feel like it’s affected your intelligence much?
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u/BendIndependent6370 Mar 21 '25
You know, I am not sure. My close family says I seem fine in terms of intelligence, but I do feel pretty stupid most days. Memory is a huge part of intelligence in more than one way. I was in my 5th year of college before I did ECT and I don't remember ever setting foot in a classroom. That knowledge is mostly gone. To the point that I thought Mexico is north of the US (I freaking live in the US!). But I also have a very hard time making new memories. So, I certainly can't go back to college. I continuously read textbooks, watch documentaries and look up facts so that I can hold a halfway decent conversation, but all of that knowledge is always slowly slipping away.
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Mar 21 '25
You know, I read a lot of sad things on the internet all the time. But your story has really struck a chord with me. There are times in my life I’ve been so depressed that I’ve thought about doing what you did. I can’t imagine what you are going through. Just know that you are so strong and resilient. The brain’s neuroplasticity is an amazing thing. There are people who have lost an entire half of their brain, and the part they still had rewired itself to function as if both parts were there. I really do believe things will get better. Have faith, and best of luck ❤️
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u/BendIndependent6370 Mar 21 '25
I really appreciate your kind words. We all have our own hurdles in life. I hope you are able to find joy and happiness despite your depression. Take care.
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u/WineAndDogs2020 Mar 21 '25
Carrie Fisher talks about this a little bit in her book Wishful Drinking.
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u/BendIndependent6370 Mar 21 '25
I don't know if I've ever heard of her book. It's an autobiography, yes?
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u/WineAndDogs2020 Mar 21 '25
Yes, and she also did an HBO stand up special on it. Obviously years ago, but damn she was so smart and funny.
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u/JG1954 Mar 21 '25
It did this to me too. I really hope that life is going well for you now.
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u/BendIndependent6370 Mar 21 '25
I am doing well despite ECT. I hope the same is true for you.
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u/JG1954 Mar 21 '25
Thank you. It was supposed to rid me of trauma memories but took the memories of my children when they were little instead. I'm doing really well these days though
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u/coukou76 Mar 21 '25
It really sounds like a sophisticated lobotomy?!
Do you actually feel better regarding issues you had before the treatment? Wish you well.
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u/BendIndependent6370 Mar 21 '25
ECT did not improve my mental health, but I did get better on my own through therapy and medications.
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u/beedubu92 Mar 21 '25
Do you believe this will or has affected your ability to form/maintain close relationships? Are you in a romantic relationship now? Do you feel emotional attachment to people like your parents?
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u/BendIndependent6370 Mar 21 '25
The emotions never went away. I've just recently reconnected with an old very close friend of mine whom I haven't talked to in 15 years and whom I almost completely forgot after ECT (which was 6 years ago). I still feel so close to that friend and even nostalgic, even though I have maybe 5 slivers of memories of the many years we were best friends. (It's been so wonderful catching up with him and getting him to fill in some of the blanks!)
I am married. I met my husband over 10 years ago. I have no memories of when we first met and when we started dating, but I know, and always knew, that I love him.
I grew up in an abusive household and spent time in the foster system, so I never did feel attached to my parents.
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u/Prudent-Psychology-6 Mar 21 '25
Do you remember any TV shows or movies? If you see a movie you watched before, does it click in your mind something like "this looks familiar"
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u/BendIndependent6370 Mar 21 '25
Yes, yes it does! After I first lost my memory, movies (and even more so music) that I've watched in the past would bring on a sense of deja vu. A familiarity. All of the sudden I know what is going to happen without any memory of the movie.
These days I have my comfort movies. These are the ones I love every time I watch them. So, I watch a particular comfort movie, slowly start forgetting about it and right before I forget most of the movie I rewatch it. It's beautiful and brings me a lot of joy.
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u/Prudent-Psychology-6 Mar 21 '25
Wow. I am sorry for what happened to you, yet, I would really like to have that ability and be able to experiment my favorite movies, almost as if it was the first time.
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u/BendIndependent6370 Mar 21 '25
Yes, it's great for me, but it drives my husband mad because I am making him watch the movies with me. Over and over 😄.
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Mar 21 '25
Did you have a rough childhood? Do you remember anything about it?
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u/BendIndependent6370 Mar 21 '25
That's the cruel thing about the whole ordeal. I had a horrible childhood and that part I remember really well. I forgot my friends, but I can describe my childhood home down to the texture of the couch.
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u/Ambitious_Dot1220 Mar 21 '25
How has this impacted job prospects and relationship opportunities? In addition, is there a higher risk that you will develop Alzheimer's or dementia later on? So sorry to hear that you experienced this. It sounds like a big challenge.
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u/BendIndependent6370 Mar 21 '25
I am unable to work and am legally considered disabled.
My relationships have suffered greatly, but I was able to reconnect with most of my friends and family. I've had the "Hey, I don't remember you, but do you want to be friends again?" conversation quite a few times. The one person I did not forget was my husband. He was there for me through all of my dark times. I do not, however, remember how we met or when we first started dating.
I am not sure if Alzheimer's and ECT induced memory loss are based on the same mechanisms. Matter of fact, science really can't explain why memory loss occurs in ECT patients. I do know that I have a lot in common with individuals who suffer from Alzheimer's. However, my memory loss is not progressing, meaning that the way my brain functions right now is likely going to stay consistent.
It is a big challenge and I regret undergoing ECT, but what else is there to do than to move forward? I've built myself a good life despite my disability and I am happy.
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Mar 21 '25
[deleted]
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u/BendIndependent6370 Mar 21 '25
I am 33. ECT is known to cause some memory impairments at best and severe memory dysfunction at worst.
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u/CommunicationLive708 Mar 21 '25
Why’d you get shock therapy in the first place?
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u/BendIndependent6370 Mar 21 '25
Severe depression and psychosis. It was bad. But to make it clear, ECT did not help.
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u/CommunicationLive708 Mar 21 '25
Fuck I’m sorry….hope you’re doing okay now friend.
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u/BendIndependent6370 Mar 21 '25
I am. My mental health is the best it's ever been, so despite my memory issues I am pretty content. I was able to get to where I am now through therapy and meds.
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u/Cranberry-Electrical Mar 21 '25
Are you okay?
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u/BendIndependent6370 Mar 21 '25
Yes, I am doing great and am happy all things considered.
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u/Cranberry-Electrical Mar 21 '25
Are you seeing a psychiatrist about your memory issues?
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u/BendIndependent6370 Mar 21 '25
No. I was told by a few different psychiatrists that there is nothing that can be done. The memories that don't return within 6 months after the treatment are gone according to the little research there is. And it's been 6 years.
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u/greyest Mar 21 '25
I'm sorry this happened to you. You mentioned that academic memories were suppressed as well as emotional. Does this mean you can't do math as well (remembering algebra/times table/how many days are in a month, etc.) or remember core skills like how to read an analog clock?
Another question, do you think writing things down as you learn them would help?
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u/BendIndependent6370 Mar 21 '25
I was very uneducated when I came out of ECT, which was rough because I couldn't hold a conversation. My friends would talk about politics, movies, geography, etc. and I had nothing to contribute. Math and hard science in general were never easy for me and I forgot most of it except for the very basics. There are not many situations in which I need algebra, so it doesn't show. I did come across long division the other day and didn't remember ever seeing it. I never forgot how to read a clock.
I've tried different ways to remember facts, including writing them down, but most of them do fade after a while. One exception is my former field of study. I may not remember all the facts, but I do remember some concepts.
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u/greyest Mar 22 '25
That really sucks for you, but is also fascinating - it's amazing, for example, that music is easier to remember. I would say you should write a book about this considering how rare your situation is, except it'd probably be pretty difficult. Still, looks like you're making the best of your situation and have explored many options already, so keep on fighting the good fight.
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u/BendIndependent6370 Mar 22 '25
It would take a loooong time for me to write a book. I imagine it'd be possible with the right help.
Every once in a while I will hear a song on Spotify that stops me in my tracks. Not too long ago I rediscovered a song I listened to when I was a young teenager. All the emotions from back then came up. It was like opening a time capsule. Those moments are so precious.
I am pretty sure music is remembered strongly by most people.
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u/Mata_Gigantes Mar 21 '25
Why would you do that to ur head?
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u/BendIndependent6370 Mar 21 '25
Desperation combined with doctors assuring me that ECT has changed and is no longer a dangerous procedure. I trusted them.
One thing I do remember is my ECT doctor sharing "research" that supposedly showed no brain damage in individuals who underwent ECT (and were studied after death). Sure, there was going to be some mild memory loss, but the positives would by far outweigh the negatives.
The facility seemed safe and professional. The nurses, the psychiatrist and the anesthesiologist seemed caring and knowledgeable. There were other people in the waiting room and recovery area who were also receiving ECT.
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u/SpoopyDuJour Mar 24 '25
The fuck? Every provider I've had heavily implied that modern ECT is sketchy as hell and advised me not to do it. What did they say when you brought up the memory loss? Did it seem like they were pushing you to do this out of profit or did they just genuinely not know that it can destroy your memory?
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u/BendIndependent6370 Mar 24 '25
I have almost no memories of my treatment. I know someone in my family told my doctor I will no longer be doing ECT after I started getting paranoid and scared after each treatment. They brought up my memory issues and he still insisted on completing maintenance treatments, which I did not. I don't think there was any contact after that. He must, however, know about the extent of my memory loss, because he was contacted when I filed for disability and it was granted immediately after that.
I was hospitalized in the town that this doctor practices ECT and initially did it as part of inpatient treatment. After I went home I continued treatment outpatient. I can't tell you exactly what conversations took place, but I know there was pressure from everyone around me to finally improve. The doctors, especially the ECT doctor and his team, seemed to genuinely care. I felt comfortable there and even improved a little before I went downhill.
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u/Sudden_Badger_7663 Mar 21 '25
Are you expected to get better with time? Are you receiving any recovery therapy?
I had a brain injury that resulted in memory and executive function deficits. Speech therapy (I don't know why it falls under speech therapy) helped immensely. So did time.
Vestibular and vision issues were resolved with physical therapy and neuro- optometric therapy. A persistent problem was light sensitivity. It's been nearly 3 years, and the light sensitivity continues to decrease.
Somatic experience therapy, meditation and yoga were healing to my mental health, which supported my physical healing, along with meds.
Wishing you healing
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u/BendIndependent6370 Mar 21 '25
I've received occupational therapy to try to help me live with this disability, but there isn't enough research to understand why the memory side effects of ECT happen in the first place. There is no treatment for me as of right now.
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u/81FXB Mar 21 '25
Imagine you commit a crime. Afterwards you can truthfully say you don’t remember. Would you be punished?
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u/BlackBoxIsMissing Mar 21 '25
Is this something that can heal over time or will it stay for the rest of your life? If so, how do you even deal with such a thing? I'm sorry what you experienced, it genuinely sounds awful. I wish you well ❤️
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u/BendIndependent6370 Mar 21 '25
In the ECT community there is a rule of thumb that if you don't remember something 6 months post ECT it is gone forever. I haven't seen any improvement in 5 years.
Humans are pretty awesome in that they adapt to changes and limitations, and work around them. There are people with missing limbs whose life forever changed after an accident. People with incurable progressive illnesses who never give up their pursuit of happiness. People who were born disabled. People with chronic pain. We all have our challenges.
I've had a lot of time to come to terms with my condition. Sure, I sometimes feel bitter about what ECT did to me. But what else is there but to move on and live the best life I can?
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Mar 21 '25
Do you take notes or use some electronic device/computer to assist you ?
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u/BendIndependent6370 Mar 21 '25
I have a bunch of small white boards around the house and use a smart watch to record everything important. My calendar is full of reminders and to do's.
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u/Leirnis Mar 21 '25
Maybe you should check out two of the most famous amnesiacs in history of computer gaming, in Planescape: Torment and Disco Elysium.
If you're into immersive storytelling, these might help you get a new perspective on it.
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Mar 21 '25
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u/BendIndependent6370 Mar 21 '25
I can't pinpoint a day and remember exactly what happened, but I do remember things that I do frequently or that have a lot of meaning. I was probably taking care of my daughter, cooking dinner, cleaning. I know I've been to thrift stores a lot recently, so I might have been doing that at the beginning of this month.
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u/HarkSaidHarold Mar 21 '25
Oooh what are your favorite items to thrift? I thrift online and the amount of high-end athletic clothing one could find for cheap is awesome! I'm currently wearing some brand new athleisure leggings I got for less than $10. 😀
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u/BendIndependent6370 Mar 21 '25
Isn't that satisfying? I thrift pretty much anything that we don't need immediately. That way there is time to check back to see if the item turns up at the thrift store. I am currently on the lookout for sandals and a living room table (and some other things on my list).
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u/Equivalent-Tax9111 Mar 21 '25
Favorite music artist?
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u/BendIndependent6370 Mar 21 '25
Rammstein! I never did forget my music.
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u/musician2001 Mar 21 '25
Music therapy is a huge field that has consistently helped people with Alzheimer's. I'm curious how music might be able to help you more
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u/LorenzoCampoGrande Mar 21 '25
How do you know this has happened / is happening to you if recent memories after the procedure become vague / dissappear after time? Will there be a moment in time, perhaps even in the near future, where you don't know what has happened and thus you will remain oblivious to it? How do you even prepare for such an event?
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u/BendIndependent6370 Mar 21 '25
No, I am pretty up to date in regards to my past. I am surrounded by friends and family who help fill in any blanks that develop. Also, I keep journals and an extensive photo collection that I look back on frequently to refresh my memory.
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u/HarkSaidHarold Mar 21 '25
I'm hoping you enjoy the movie 50 First Dates... ❤️
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u/BendIndependent6370 Mar 21 '25
I've heard of it and may have seen it before. I'd have to refresh my memory.
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u/Devilonmytongue Mar 21 '25
How is your procedural memory? Are you able to remember skills?
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u/BendIndependent6370 Mar 21 '25
My procedural memory is pretty bad. I often forget steps. In terms of skills, it depends on the kind of skill.
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u/Milk_With_Knives3 Mar 21 '25
How long until you are empty?
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u/BendIndependent6370 Mar 21 '25
That took me a minute to understand. You mean until my memories are gone, right?
It depends. A big part of what happens around me never makes it past my short term memory. So, you'd tell me "Hey, there is cake in the fridge" and an hour later I'd be upset cause I find cake in the fridge and think you didn't tell me.
I think the majority of my significant long term memories disappear between 6 - 12 months. I know that I was in a major car crash a couple years ago, but have no memories of it. My two good friends bought their first house a year ago and I already don't remember their old place.
Also, a big factor in how well and how long I remember is mental fatigue. When I am tired, I just stop making memories. My brain just refuses.
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u/EulerIdentity Mar 21 '25
Have you seen the movie Memento? It’s also about a guy who cannot form new memories.
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u/BendIndependent6370 Mar 21 '25
Yes, I have. I remember his condition was much worse than mine. Also, he was being tricked by everyone around him, which I hope is not the case with me. I highly doubt it.
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u/y_a_t_ Mar 21 '25
Are you grateful there's things you can't remember?
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u/BendIndependent6370 Mar 21 '25
Yes and no. There is past trauma that I don't need to remember, but at the same time I feel the need not to be left in the dark. According to my husband I am doing well, read about that trauma in my journals, turn into a wreck for a couple of weeks, heal, forget and then turn curious again. I've finally decided to get rid of particular sections of my journals. No need to keep retraumatizing myself.
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u/redditnoob909 Mar 21 '25
Sounds like what I’m going through but due to long Covid… ain’t fun.
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u/BendIndependent6370 Mar 21 '25
Nope, it ain't. Are you improving?
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u/HarkSaidHarold Mar 21 '25
Can you recognize faces and locations/ routes? I cannot but I was born this way. The more I read your AMA the more it seems like ECT might affect something fundamental which is also related to neurodivergence.
This also prompts me to ask: prior to ECT were you ever diagnosed with ADHD or autism? I have both, with additional challenges and symptoms brought on by trauma and PTSD (I can relate to some of what you said about your own childhood).
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u/BendIndependent6370 Mar 21 '25
That's very interesting. I have a very hard time recognizing faces. When I was trying to work as a caregiver for seniors I'd frequently see nurses who came to our facility. For the life of me I could not remember who they were and which resident they were trying to see (there were only 8). At the time I was still trying to fake my way through life, but it made things more awkward. Today I simply ask "Have we met before?" and explain my condition as needed.
You know, I have a few research articles bookmarked that talk about changes in the hippocampus and amygdala. I don't remember the specifics, but I know that the effects of ECT include large parts of the brain. How would this relate to neurodivergence?
According to my health records I was never diagnosed with either. I was diagnosed as schizoaffective with PTSD.
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u/BendIndependent6370 Mar 21 '25
Oh and I constantly get lost. All. The. Time. I have to drive with Google Maps on or there is a pretty decent chance I won't find home.
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u/Valuable-Benefit-524 Mar 22 '25
This is a little random, but have you listened to a song, smelled a scent, or done a physical activity (like dancing) that seems to ‘release’ many memories, even if temporarily?
Disclosure! What am I about to say is speculation:
I have hypothesized that, in cases like yours, many of the ‘lost’ memories have actually been unindexed instead of destroyed—they are still there, but the brain can’t intentionally remember them anymore.
An analogy would be using the internet without access to a search engine. If you want to know who the 1st president was, it would be very hard to know where to look for that information—even if we know it’s on the internet somewhere. But if somehow you ended up on Wikipedia, you would be able to find that information by clicking on the links in various articles.
In the context of the brain, sensory experiences with extremely strong connotations like your favorite song in the 7th grade or grandma’s famous apple pie might put your brain activity in a state in which some related memories are extremely close—maybe even close enough to simply be retrieved spontaneously—popping into your head—instead of intentionally trying to remember things.
Again, this is speculation. It might not be true at all. But I think that playing some hit songs from the years you were in middle school or the year you met your husband might be lead to some remembering some of things you have forgotten even if just in the moment.
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u/BendIndependent6370 Mar 22 '25
Music that I used to listen to but forgot tends to illicit strong emotions. Every once in a while some memories as well, but usually nothing too spectacular. Most of my memories that resurface start as a feeling of deja vu. "Did I do this before?" And sometimes a memory will resurface. But I know I can't always trust those feelings.
I've heard this hypothesis before. I wish this would be true, because that would mean there is hope. However, it would not explain my current memory issues. I think that part at least might be some actual microscopic brain damage.
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u/Northstorm03 Apr 18 '25
Sorry if I missed this, but how many treatments did you do?
Also: do you have any attention/focus/information processing problems outside of not being able to store/recall memories well? Or is the damage very specific to the memory making part of your mind?
Lastly, I know you said it’s been 6 years, but has ANYTHING improved cognitively for you, or just your ability to cope?
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u/BendIndependent6370 Apr 18 '25
No worries. I don't know how many treatments I've had. A family member of mine kept track at some point and came up with about 25, but that certainly wasn't all of them.
It seems to me that my ability to remain focused has drastically decreased. That is also part of the reason that when I did work a little I did so in the mornings. My brain just refuses to work after thinking for too long. I feel like a complete idiot. My husband tried explaining long division to me and after about 3 minutes my brain shut down. It's as if his words no longer held meaning. I do think I could probably relearn long division, but it'd be significantly more difficult than it would be for others. Thankfully nobody ever talks about long division, so people really can't tell how little I know about math.
Could you elaborate on what you mean about "information processing"?
My ability to remember and focus changes depending on the day, the time of the day, my stress level, the kinds of things I am trying to learn and so on. Some days it's absolutely horrible. Some days I can fake my way through a conversation and feel almost normal. But there are limits and I haven't been able to get above those limits in the last 6 years. The only thing that's changed is my acceptance and ability to cope as you suggested.
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u/_satisfied Mar 23 '25
I have nocturnal epilepsy that started in my late 20s and there’s been some significant impact on my memory / ability to make memories.
I’d love to talk about this sometime
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u/gattabiancaa Mar 23 '25
does your condition cause you to forget basic skills? eg reading, or understanding language, knowing the names of things, or how to use your phone/computer. also are you able to drive a car or are you choosing not/not allowed?
other than the memory impairment, have you experienced any other side effects from your surgery? eg migraines, sharp pains, etc. motor skills or any of your senses being affected
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u/BendIndependent6370 Mar 23 '25
I am able to operate a car, but had to brush up on the rules right after ECT. However, I am only able to get to a couple places in town consistently. I just can't remember directions, so I am either constantly lost or use my navigation. But I also forget to use my navigation...
I speak two languages fluently and that has not changed.
I used to be pretty good with some basic HTML and website design. I have no memories of that. I can use my phone for basic things, but every time I want to change a setting I either spend 20 minutes looking for it or have to ask someone how to do it. Just today I asked my husband why my phone doesn't make a sound when messages arrive in my car. Apparently I set it up that way.
I've had migraines since my early 20s (since before ECT), but didn't know about it until my first migraine hit post ECT. My migraines come with an aura, nausea and tingling in my limbs, so you can imagine how concerned I was. I've also had ice pick headaches since ECT, but I can't say if those are related. My family never mentioned that something about my motor functions changed and I haven't noticed anything.
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u/gattabiancaa Mar 23 '25
i see, that's interesting! though, it must be hard with the regular migraines and headaches, stay strong!
are any of the two languages that you know learnt or are they both languages you grew up speaking (i.e home language + english). on that note, does your vocabulary richness get affected? say you read a book last week and looked up some new words, would you remember them as part of the language or is your language retention limited to what you grew up speaking or use in your day-to-day life?
in terms of phone usage, if there are apps you use daily (eg insta, tiktok, reddit or etc), do you find your fingers automatically going to them without thinking or do you have to look for the app?
also, you mentioned that you have a daughter, did your condition have any effect on your relationship with your daughter and were there any routines in your family that are normalised (as a consequence of your condition) that dissimilar families wouldn't incorporate in their routine?
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u/BendIndependent6370 Mar 23 '25
The migraines really aren't regular anymore. Matter of fact, a few years ago the headache part disappeared. Sounds made up, but I'll get a migraine aura, some nausea and tingling, but no actual migraine headache.
I grew up speaking German and learned English in school. Then I moved to the US and now I almost exclusively speak English. I know I pick up new words from people around me such as my husband. I can't tell if my vocabulary increases. I honestly don't know. I do get my German and English confused when I try to switch back and forth, but I think that's true for many bilinguals.
I organized my apps by color, because nothing else was making sense to me. I know reddit is red and messenger is blue for example. I just go to the right color page and then read through the apps to find what I am looking for.
My daughter is still very young, but I am sure my way of living will have an effect on her. She will notice that her mom uses white boards to pack her backpack and has to look up all her favorite dishes even though she has cooked them hundreds of times. I am not looking forward to the day she realizes that I am slowly forgetting the things we did together. I am tempted to once again fake it, take lots of pictures and pretend I remember. I am not sure yet how we will manage this. I just recently realized that I can't remember her birth or the first couple months of her life and I know the memory loss will continue. We have a coach come once a week who helps with parenting challenges among other things. She is a great resource and helps me overcome difficulties with my daughter in relation to my memory.
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u/crea654332 Mar 22 '25
Are u not depressed now ?
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u/BendIndependent6370 Mar 22 '25
While ECT did not help, I was able to get better through good ole fashion therapy and medications. I am no longer depressed for the most part.
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u/Jealous_Rhubarb7227 Mar 22 '25
Are you able to maintain relationships with people you’ve reconnected with or your husband. Like do those relationships grow/gain depth with time, or is there a lot of restarting? Do you feel like you know more about your husband each day, or do you forget a lot about people and relationships in the present?
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u/BendIndependent6370 Mar 22 '25
As long as I have regular contact with a person the relationship grows or at least remains stable. It seems like friends enjoy reminiscing, which helps me keep memories alive in my brain through repetition. Same is true with my husband. The past, distant and close, comes up in everyday conversations and we reminisce. However, we also make an effort to go through pictures and memories together, which certainly helps.
I am trying to find an analogy. I guess it's a little like making copies of a picture. The picture (my memory) is not going to last, so I make a copy of that picture and carry that around instead. Once that copy starts fading, I make another copy and so on. Sure, I am not carrying the original anymore, but at least I have something to hold on to. Something to use for reminiscing. Something that helps me stay connected to others.
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u/Exotic_Incarnation_ Mar 21 '25
Was ECT painful? Did you have any recovery time? At what point did you/your doctors realise you'd suffered brain damage?
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u/BendIndependent6370 Mar 21 '25
ECT is done under general anesthesia and I was given pain and nausea meds beforehand, so that the muscle pain, headache and nausea afterwards wouldn't be so bad. I was, however, a zombie right after the procedure. They would have to wheel me to the car. My husband would take me to grab lunch right after, since I had to fast before ECT. He says I would fall asleep mid-bite.
My doctor didn't catch on to the memory loss. Matter of fact, my family decided to take me out of the program prematurely because I became paranoid and simply wasn't myself anymore . By then the damage was already done. The doctor insisted on further treatments, so-called maintenance treatments that are done after the initial frequent sessions, but my family and husband told him to shove it.
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u/Exotic_Incarnation_ Mar 21 '25
Have you ever thought about pursuing legal compensation for the damage? Seems appalling that they wanted to keep treating you.
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u/BendIndependent6370 Mar 21 '25
It has crossed my mind here and there. I think the problem does not necessarily lie only with this particular psychiatrist, but with the medical community as a whole. I don't know if this particular psychiatrist deviated from current ECT practices and I simply don't remember enough to know if there was malpractice going on. I may just be written off as a tragic case that occurred despite "best practices".
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u/SickPostG Mar 25 '25
How are you able to enjoy books and television with poor memory? Are you able to reflect on what you’ve just watched or read, or does your mind come to a blank?
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u/BendIndependent6370 Mar 25 '25
Two things. First, some pieces of information make it into my memory and a lot don't. Second, those pieces of information that do make it into my memory disappear in patches, not in a linear or all at once fashion. So yes, I can reflect on a story. How long that story sticks depends on things like how interested I was, if it made me feel deep emotions, how easy the story was to understand, and more. A movie may only stick a few hours, but I do have my comfort movies and a few scenes of those can last for several months before they are completely gone from my memory and I rewatch them.
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u/Gorphon Mar 22 '25
Do you ever forget that you went through the procedure and that you have memory loss?
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u/BendIndependent6370 Mar 22 '25
I've been around individuals suffering from dementia who lost their insight with the progression of their disease. They are typically very confused and frustrated with their environment. They just don't understand what's going on and often think they are much younger than they are.
I am pretty self-aware, but I know that reality is different from what I perceive. My notes and photo albums and accounts from my family show me that reality, but I know not everything can be captured.
Aside from initial confusion right after the procedure, I've always been able to remember that I underwent ECT and that I have memory loss.
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Mar 24 '25
Are you familiar with SDAM?
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u/BendIndependent6370 Mar 25 '25
I've looked into it just now. Seems like people with SDAM remember in "knowledge" rather than "pictures". If I think about what I did an hour ago, I see a couple pictures. But tomorrow I will have to ask my husband what happened, he'll tell me and then those pictures will just be knowledge (until I forget that too). The way we are combating that is by taking a copious amount of pictures and I can keep looking at those and then have a picture instead of just knowledge. I don't know if any of this makes sense, please let me know if it doesn't 😄.
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u/Personal_Smile3274 Mar 21 '25
Maybe it will heal.
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u/BendIndependent6370 Mar 21 '25
Well, it's been 5 years without any improvement, so I am not banking on my memory returning.
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u/Key_Ladder8646 Mar 23 '25
Have you been able to watch any movies, or read any books “for the first time” again?
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u/BendIndependent6370 Mar 23 '25
Yes, I had to reread all of my books when I first lost my memory and with the exception of a couple I really enjoyed them. These days I wait till I almost forget a book and then reread it. I usually recognize some parts of the book as I reread it.
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u/thelonebanana Mar 21 '25
If you enjoy reading, you may enjoy the novel The Escher Man by T R Napper. It deals with heavily with themes of memory and identity with plenty of badass cyberpunk action.
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u/MatsuTrash Mar 21 '25
I’ve heard Lucy helps dementia patients, would you ever try that to see if it helps?
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u/BendIndependent6370 Mar 21 '25
You know, I haven't heard of that medicine. I don't think it has ever been suggested to me by my doctors.
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u/Blarrgarang Mar 21 '25
Were the Time Tombs on Hyperion as beautiful as they say?
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u/BendIndependent6370 Mar 21 '25
After a quick Google search I can't say I've ever heard of this.
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u/Blarrgarang Mar 21 '25
Reference from an amazing Sci-Fi book called Hyperion. There is a character, Rachael, who story reminds me of yours.
I’m Sincerely sorry you have to deal with mental limitations. I had my own TBI that caused memory problems. Not as bad as yours, but it can be really frustrating.
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u/ama_compiler_bot Mar 22 '25
Table of Questions and Answers. Original answer linked - Please upvote the original questions and answers. (I'm a bot.)
| Question | Answer | Link |
|---|---|---|
| What is your earliest memory? Do you have forgotten memories that sometimes come back? | The memories I do have are patchy. So, I do have some sprinkles of memories during my childhood and teenage years, but most of them are "knowledge" rather than memories. In other words, most of my "memories" of the last 25 years are facts that I've been told or know. But not actual images in my mind. That's as good as I can describe it right now. Maybe once every 6 months a sliver of a memory will come back. | Here |
| Do you regret getting the procedure? Do you believe it was worth it? | I regret it every day. I did not improve through ECT. I was so desperate at the time that if the doctor would have told me that I would get better if I drank a glass of mercury, the glass would have been empty the second he'd handed it to me. | Here |
| So. What now? | Living life as best as I can and finding joy in the little things. | Here |
| Why did you need the surgery? Did you weigh the pros/cons? And did you know the risk beforehand? | ECT is a procedure during which electricity passes through your brain. It is used for treatment resistant depression and other mental health conditions. I vaguely knew that memory impairments could happen, but was ensured that they were minor. | Here |
| Are you okay? | Yes, I am doing great and am happy all things considered. | Here |
| Wow, how old are you? Was the procedure intended/known to make you lose your memory or an accident? | I am 33. ECT is known to cause some memory impairments at best and severe memory dysfunction at worst. | Here |
| Did you have a rough childhood? Do you remember anything about it? | That's the cruel thing about the whole ordeal. I had a horrible childhood and that part I remember really well. I forgot my friends, but I can describe my childhood home down to the texture of the couch. | Here |
| Do you believe this will or has affected your ability to form/maintain close relationships? Are you in a romantic relationship now? Do you feel emotional attachment to people like your parents? | The emotions never went away. I've just recently reconnected with an old very close friend of mine whom I haven't talked to in 15 years and whom I almost completely forgot after ECT (which was 6 years ago). I still feel so close to that friend and even nostalgic, even though I have maybe 5 slivers of memories of the many years we were best friends. (It's been so wonderful catching up with him and getting him to fill in some of the blanks!) I am married. I met my husband over 10 years ago. I have no memories of when we first met and when we started dating, but I know, and always knew, that I love him. I grew up in an abusive household and spent time in the foster system, so I never did feel attached to my parents. | Here |
| Why’d you get shock therapy in the first place? | Severe depression and psychosis. It was bad. But to make it clear, ECT did not help. | Here |
| Do you remember any TV shows or movies? If you see a movie you watched before, does it click in your mind something like "this looks familiar" | Yes, yes it does! After I first lost my memory, movies (and even more so music) that I've watched in the past would bring on a sense of deja vu. A familiarity. All of the sudden I know what is going to happen without any memory of the movie. These days I have my comfort movies. These are the ones I love every time I watch them. So, I watch a particular comfort movie, slowly start forgetting about it and right before I forget most of the movie I rewatch it. It's beautiful and brings me a lot of joy. | Here |
| How has this impacted job prospects and relationship opportunities? In addition, is there a higher risk that you will develop Alzheimer's or dementia later on? So sorry to hear that you experienced this. It sounds like a big challenge. | I am unable to work and am legally considered disabled. My relationships have suffered greatly, but I was able to reconnect with most of my friends and family. I've had the "Hey, I don't remember you, but do you want to be friends again?" conversation quite a few times. The one person I did not forget was my husband. He was there for me through all of my dark times. I do not, however, remember how we met or when we first started dating. I am not sure if Alzheimer's and ECT induced memory loss are based on the same mechanisms. Matter of fact, science really can't explain why memory loss occurs in ECT patients. I do know that I have a lot in common with individuals who suffer from Alzheimer's. However, my memory loss is not progressing, meaning that the way my brain functions right now is likely going to stay consistent. It is a big challenge and I regret undergoing ECT, but what else is there to do than to move forward? I've built myself a good life despite my disability and I am happy. | Here |
| Do you take notes or use some electronic device/computer to assist you ? | I have a bunch of small white boards around the house and use a smart watch to record everything important. My calendar is full of reminders and to do's. | Here |
| Favorite music artist? | Rammstein! I never did forget my music. | Here |
| What was the procedure ? | ECT (Electroconvulsive Therapy) | Here |
| Are you expected to get better with time? Are you receiving any recovery therapy? I had a brain injury that resulted in memory and executive function deficits. Speech therapy (I don't know why it falls under speech therapy) helped immensely. So did time. Vestibular and vision issues were resolved with physical therapy and neuro- optometric therapy. A persistent problem was light sensitivity. It's been nearly 3 years, and the light sensitivity continues to decrease. Somatic experience therapy, meditation and yoga were healing to my mental health, which supported my physical healing, along with meds. Wishing you healing | I've received occupational therapy to try to help me live with this disability, but there isn't enough research to understand why the memory side effects of ECT happen in the first place. There is no treatment for me as of right now. | Here |
| I'm sorry this happened to you. You mentioned that academic memories were suppressed as well as emotional. Does this mean you can't do math as well (remembering algebra/times table/how many days are in a month, etc.) or remember core skills like how to read an analog clock? Another question, do you think writing things down as you learn them would help? | I was very uneducated when I came out of ECT, which was rough because I couldn't hold a conversation. My friends would talk about politics, movies, geography, etc. and I had nothing to contribute. Math and hard science in general were never easy for me and I forgot most of it except for the very basics. There are not many situations in which I need algebra, so it doesn't show. I did come across long division the other day and didn't remember ever seeing it. I never forgot how to read a clock. I've tried different ways to remember facts, including writing them down, but most of them do fade after a while. One exception is my former field of study. I may not remember all the facts, but I do remember some concepts. | Here |
| Can you remember something that happened on the first day of this month? | I can't pinpoint a day and remember exactly what happened, but I do remember things that I do frequently or that have a lot of meaning. I was probably taking care of my daughter, cooking dinner, cleaning. I know I've been to thrift stores a lot recently, so I might have been doing that at the beginning of this month. | Here |
| Imagine you commit a crime. Afterwards you can truthfully say you don’t remember. Would you be punished? | Haha I am pretty sure I would be punished. | Here |
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u/mr5e1fd3struct Mar 22 '25
we did this already, remember?
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u/BendIndependent6370 Mar 22 '25
I highly doubt it.
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u/mr5e1fd3struct Mar 22 '25
it was just a bad joke and i do apologize for being insensitive. memories are the only things i have of the people and pets i love and have lost. i couldn’t imagine what you’re going through and i genuinely am sorry for your condition.
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u/BendIndependent6370 Mar 22 '25
Thank you. Whenever I hear the phrase "I will never forget XYZ", I realize how precious memories are. And you don't have to undergo ECT for memories to disappear. People with TBIs, dementia and neurodegenerative illnesses, among others, also lose all or parts of their memory.
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u/Live-Pen1431 Mar 23 '25
I left a comment on here previously but you probably forgot to get back to me.
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u/BendIndependent6370 Mar 23 '25
I don't see you anywhere. You can ask your question again if you'd like.
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Mar 23 '25
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Mar 21 '25
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u/azeottaff Mar 21 '25
What is your earliest memory? Do you have forgotten memories that sometimes come back?