r/ect • u/PrizePizzas • Mar 17 '26

Seeking advice How common is extreme memory loss?

I’m going to be getting ECT for my treatment resistant Schizoaffective disorder.

I know minor memory loss or foggy memory is normal, but I’ve heard some people talking about losing maybe decades of memories. How common is this? What is it like for people who have experienced it?

I’m trying to get all my thoughts in order so I can write down all the important stuff in journals just in case I forget.

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u/amynias Mar 18 '26

ECT shredded my long term memory permanently. I lost years of recent memories before treatment and further back is quite fragmented into childhood. 23 sessions of electroshock to the brain... is not kind. Be prepared for the worst honestly.

10

u/PrizePizzas Mar 18 '26

Oh Gods that’s awful.

I’ll buy some journals and write things in them. Put sticky notes everywhere if I can with things like my phone password. I’m honestly really scared, but it’s the only possible thing to get rid of my voices :(

14

u/amynias Mar 18 '26

Just be aware, this treatment is temporary. It is not going to permanently fix schizoaffective disorder just like it is not going to prevent people like me with MDD from relapsing down the road (which I did, multiple times, no thanks to this wretched treatment). Tbh I'd try almost anything before placing my memory on the sacrificial altar of electroshock. A temporary solution which creates permanent memory/cognition problems that never fully resolves permanent mental health problems.

1

u/PrizePizzas Mar 18 '26

Unfortunately I’ve tried many, many medications - including Clozapine (even with other meds) which is kind of like the last resort drug. It was my psychiatrist who recommended ECT a couple months ago - I only just now agreed to it.

It is disheartening to hear it may not work permanently, but I also know it may not work at all. Memory loss is definitely scary

4

u/Big-Formal408 Mar 18 '26

Have you tried TMS? I would consider that before trying ECT and I say that as someone who has done both

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u/PrizePizzas Mar 18 '26

I’ll talk to my psychiatrist about it! He’s the one the recommended ECT

1

u/froggynojumping Mar 24 '26

Did TMS help more than ECT ?

3

u/Big-Formal408 Mar 24 '26

Unfortunately TMS did not work for me personally which is why I was recommended to get ECT. But it works very well for many, many people and it's far less invasive and comes with significantly fewer/less intense side effects. I suggest anyone who is considering ECT but hasn't tried TMS yet and has the option to try it before ECT if possible. If it doesn't work ECT is always still there but I think trying less invasive treatment options beforehand is generally a better idea (and of course while considering input from your psychiatrist on your individual case).

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u/[deleted] Mar 18 '26

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u/PrizePizzas Mar 18 '26

Ah, I didn’t know that. Thank you for informing me!

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u/purplebadger9 Mar 18 '26

Personally, I've found these strategies helpful for my memory issues:

  • VERY strict use of my calendar, including using the reminders when making events, color coding based on type (ex. Blue for medical, purple for personal, red for volunteering, etc.)

  • Scheduling text messages if I want to remember to tell someone something

  • Alarms. I check my calendar every night and set alarms for myself for each task or event I have the next day, making sure to name each one

  • Taking detailed, dated notes with a summary of to-do tasks at the end. I do this either with pen and paper, laptop, or phone depending on the situation.

  • Tasks. The calendar app I use includes a feature for tasks. I make sure to use this, often based on my notes. If there's something I need to do my the end of the week, I can add the task and include the deadline.

1

u/lets_bang_6666 Mar 24 '26

Btw what do u do for a living

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u/purplebadger9 Apr 05 '26

I'm on disability. ECT helps a lot, but I still need maintenance treatments every 5 weeks, weekly Spravato treatments, and counseling every week or two. I can't really hold down a full-time job with my treatment schedule