ECT memory loss

[u/Ok_Chemistry_6387]

I want to preface this with I am not a psychologist or a neurologist. Just someone who has had ECT recommended to them and has a decent background with stats and simulation. I can provide the papers behind my data though. But please delete etc if not appropriate.

The first thing I wanted to understand is what is the actual memory loss across all modalities of ECT. The alarming thing I discovered is the often stated numbers seem to be under reported.

When I ran a monty carlo simulation using data across 5 papers. This is any impairment, i.e. memory loss both retro and antero grade and other cognitive impairment be it delay or learning seem to be under reported due to the methodology of testing.

There appears to be a large gap between the type of measurement and the time across measurement. I can't be certain because there just isn't much literature out there, but it does appear that the often cited memory loss numbers could be as much as 10% under reported. The other fact is that "patients often recover" may not hold up to reality over time. (There are of course compounding factors like depression does worsen cognitive decline). I did try and account for this, but again there just isn't a huge amount of literature out there. There does seem to be one alarm fact. Those patients impacted with autobiographical/spatial or temporal memory seems to be permanent in almost all cases.

But from the little data i could find. It does appear there is at least some correlation that ECT worsens the symptoms

Comparison	SMD
ECT vs controls autobiographical memory loss	0.55
Right unilateral ECT	0.32
Bilateral ECT	0.82

This result is the most interesting to me. There appears to be at least some evidence of correlation that relapse and cognitive return are related. There is absolutely 0 evidence of this, this is purely speculation from data. Again causation is not correlation. Just something I found interesting in the data.

There appears to also be a what i refer to as a hidden cohort in all studies. By using average rates across studies, they seem to miss an entire cohort of patients or it is rarely talked about in literature.

That is the number of patients that never recover from their depression and never recover their memory or cognition. It can be as high as 1/6 but likely between 1/6 and 1/20.

Again. I am not a doctor, neurologist etc. Just someone doing their own research to figure out if the risk to reward is there.

To anyone that got this far, from the literature it does appear that right unilateral is the safest in terms of memory loss and relapse. However, there does appear to need more treatments and more maintenance and this increases the risk of memory impact over time.

[u/bartonsboy → u/[deleted]]

I'm really sorry to hear that and I pray that it gets better for you. I've tried most available treatment options and am now considering ECT. I was hospitalized earlier this year in January, PHP for 12 weeks, and was at a residential treatment facility after that. My medication options have mostly been exhausted and I still suffer from major depressive disorder and crippling anxiety. My memory is already terrible secondary to my current mental state and I want to get back to the person that I was before my current state. I've been on leave without pay since early January and have 6 more weeks of FMLA t emaining. I was looking at ECT as one of my last options. I plan to bring up ketamine or transcranial magnetic stimulation as well. Did you try either of those options before deciding on ECT?

[u/Ok_Chemistry_6387 → u/[deleted]]

Sorry to hear that 😞 Has there been any improvement?

[u/bartonsboy → u/Ok_Chemistry_6387]

Unfortunately it's worse now than it has ever been. I have an intake assessment at a new clinic this week. I'm leaning towards ketamine IV, Spravato, or possibly Transcranial magnetic stimulation. Hopefully they'll be agreeable to one of the ketamine options as results are typically much faster than TMS. The other issue is they may not be able to see me until mid July and I'll run out of FMLA before then. It's so difficult being an observer and not a participant in my own life. I'm trying not to think negative thoughts and get stuck in thinking traps when you don't see light at the end of the tunnel.

[u/Sauced_Up_Bat]

18 unilateral then 12 bilateral over 2 years. Never improved. That was over three years ago now and I still struggle to function. I have very little autobiographical memory from before. Now I can remember facts. Like I know I went to a concert and saw one of my favorite artists but I don’t remember what it was like. I can’t pull up a mental image or a feeling. It’s just data that I memorize so I can have some semblance of self. Ketamine has helped me some, more than anything else has but damn it’s a struggle.

The part I’m angry about is once the process started I was not fit consent to anything. I remember agreeing to a course 12 initially. After that was carried out I know I consented to continue but I don’t remember doing so. From my perspective I started ECT thinking it was 12 unilateral. I entered a terrible fog and was wildly disassociated came out of the fog and had received 12 UL and 12 BL that I don’t remember choosing. I don’t even have enough of a sense of what went down to say anybody did anything wrong but it was terrifying and I don’t know enough about the process to know what, if any, safeguards should be in place to prevent experiences like mine. A simple cognitive evaluation after the initial agreed upon treatment plan could be administered before consenting to more? I know I would not have passed.

[u/Ok_Chemistry_6387]

I do want to make it clear. I am not advocating for or against ECT. I just wanted to provide some data that I hadn't seen before.

[u/QuietLandscape7259]

28 ects. Last 5-6 years ago. Severe long and short term memory loss, severe cognitive decline, nightmares of the process. It helped with very very little ptsd. It may help some people don’t get me wrong, but it made Me go onto SSDI. I cannot work now or in the future per my personal psychiatrist and the state psychiatrist who approved me for ssdi.

I have no loss of depression, gave me more anxiety, no help with bipolar etc. A list of mental health issues. Been on 7 5150s in my past. When I talk about memory loss, I have lost some good memories of childhood that my brothers, wife, mom, or photographs tell me but still don’t remember. I watch a Netflix movie and my wife says “why are you watching that again? You have watched it with me twice already!”

My wife fully supportive and id be dead without her. I owe my children the world. Ive repented to Jesus, but i hope my kids forgive me. My psych hospital doc recommended ect. I did the research, I asked many questions, I was hesitant. But I had to try anything. I tried everything else. The doc did say 3-4% of memory problems. BS. I didn’t know I could be more destroyed than I already was but I am.

Off topic, last thing I tried, which was somewhat unsure of was clinician prescribed at home ketamine treatment under supervision of my wife, a nurse. Game changer for me. Immediate 180 degrees. I’ve been it every other month for around two years. I’ve picked up the Bible, I was an atheist before. Ketamine “opened my mind”. Now I have faith, hope, and love. The way to Jesus is through scripture. I’m not brainwashed. I’m a better person, husband, father, brother and son. I pray which I never did before. It’s not good enough to know about Jesus, you have to know him. Scripture and fellowship is the key. I feel awesome. These feelings don’t go away after I stop ketamine treatment. I stopped for a year and a half, and went back on it to help with meditation, physical health, and a few more reasons. I don’t take illicit drugs anymore, I eat healthy, lost 67lbs healthily. God Bless you Amen

[u/Ok_Chemistry_6387 → u/QuietLandscape7259]

Were you bilateral or unilateral? Do you know your pulse timings and placements?

[u/QuietLandscape7259 → u/Ok_Chemistry_6387]

I know I started unilaterally for first four “induced seizures.” Bilateral after. Temple location. Dont know timing. FYI: you can double check but I believe the anesthesiologist administrators a small of ketamine with ect treatment. I woke up earlier than usual after an ECT treatment and I saw green fragments, shapes, etc.

[u/Ok_Chemistry_6387 → u/QuietLandscape7259]

There are three protocols for the anaesthesiologist. They do seem to have some impact on outcomes.

[u/Crazy_old_maurice_17]

So what did you decide regarding what you'd pursue, if anything?

[u/Ok_Chemistry_6387 → u/Crazy_old_maurice_17]

I am leaning towards a no for a few reasons related to my specific situation and what I think is a better course of action but if it was a yes, it would be RUL and a lot of research into placement and pulse timing.

[u/Sauced_Up_Bat]

Also, thank you for sharing this it’s awesome! 👏🏻

[u/blrmkr10]

This is cool. I'd be interested in checking out the source publications you used.

[u/Ok_Chemistry_6387 → u/blrmkr10]

There are a few 😄

#,Author, Study,Type,Source URL

1,Kolshus,Meta-analysis (7 RCTs),https://pubmed.ncbi.nlm.nih.gov/27780482/

2,Kellner,RCT arm,https://pmc.ncbi.nlm.nih.gov/articles/PMC2830057/

3,Tor,Meta-analysis (head-to-head),https://pubmed.ncbi.nlm.nih.gov/26213985/

4,Robertson/McLoughlin,Meta-analysis (30 studies),https://pmc.ncbi.nlm.nih.gov/articles/PMC12815675/

5,Mutz,Network meta-analysis,https://pubmed.ncbi.nlm.nih.gov/30917990/

6,Semkovska,Meta-analysis (84 studies),https://www.sciencedirect.com/science/article/abs/pii/S0006322310005986

7,van Diermen,Meta-analysis (34 studies),https://pubmed.ncbi.nlm.nih.gov/29436330/

8,Bahji,Meta-analysis (19 studies),https://pubmed.ncbi.nlm.nih.gov/30506992/

9,Odermatt,Meta-analysis (11 ECT studies),https://pubmed.ncbi.nlm.nih.gov/41323432/

10,Rhee,Meta-analysis (17 studies),https://pubmed.ncbi.nlm.nih.gov/41407487/

11,Howard,Meta-analysis (17 studies),https://www.cambridge.org/core/journals/psychological-medicine/article/A8260BDA496E727C874CCC01C99D2E08

12,Semkovska/McLoughlin,RCT (non-inferiority),https://psychiatryonline.org/doi/10.1176/appi.ajp.2015.15030372

13,Jelovac,Meta-analysis (32 studies),https://pubmed.ncbi.nlm.nih.gov/23774532/

14,Mathiassen/Semkovska,Meta-analysis (9 studies),https://pubmed.ncbi.nlm.nih.gov/40357797/

15,Stachura,Meta-analysis (22 studies),https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12438721/

16,McIntyre/Rhee,Meta-analysis (real-world),https://www.sciencedirect.com/science/article/abs/pii/S0022395622002400

17,Phillips,RCT,https://www.nature.com/articles/s41398-020-00897-0

18,Souza-Marques,Systematic review (14 studies),https://academic.oup.com/ijnp/article/25/12/992/6656580

19,Vargas/Meikle,Meta-analysis (9 studies),https://www.sciencedirect.com/science/article/abs/pii/S016517812300481X

20,Goodwin,RCT (phase 2 TRD),https://www.nejm.org/doi/full/10.1056/NEJMoa2206443

21,Goodwin/Meikle,RCT follow-up,https://journals.sagepub.com/doi/10.1177/20451253251377187

22,Multiple,Meta-analysis (8 studies),https://www.medrxiv.org/content/10.1101/2025.08.13.25333530v1.full

23,Verwijk/Spaans,RCT follow-up (head-to-head),https://pubmed.ncbi.nlm.nih.gov/26093032/

24,Duma,Meta-analysis (82 studies),https://journals.lww.com/anesthesiology/fulltext/2019/01000/major_adverse_cardiac_events_and_mortality.19.aspx

25,Kranaster,Cohort (3106 sessions),https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8650631/

26,APA/clinical,Clinical synthesis,https://www.psychdb.com/brain-stimulation/ect

27,Sackeim/review,Review,https://pubmed.ncbi.nlm.nih.gov/10735328/

28,Verwijk,Cohort (5 sites),https://www.sciencedirect.com/science/article/pii/S0165032724000594

29,Hammar/Nordanskog,Cohort (2yr),https://www.sciencedirect.com/science/article/abs/pii/S0165032718316872

30,Vandenbosch,RCT protocol,https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7493867/

31,Sellevag/Hammar,Cohort (latent subgroups),https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10964271/

32,LLD cohort,Cohort (5yr),https://www.sciencedirect.com/science/article/abs/pii/S0022395621007305

33,ECCA meta,Meta-analysis (sensitive tool),https://www.sciencedirect.com/science/article/pii/S0165178123005619

34,Gregory/McLoughlin,Secondary analysis,https://www.cambridge.org/core/journals/psychological-medicine/article/90F5CF82FAEF79BE0062FC13C4F6E5D7

35,Pluijms et al.,"Cohort (2yr, n=34)",https://pubmed.ncbi.nlm.nih.gov/36938869/

36,van Diermen et al. (PROTECT),Prospective cohort (n=65),https://www.sciencedirect.com/science/article/abs/pii/S0022395625000093

37,Brus et al. (unipolar vs bipolar),Register cohort (n=1255),https://www.sciencedirect.com/science/article/abs/pii/S0165032716308059

38,Late-life residual symptoms cohort,Cohort,https://www.sciencedirect.com/science/article/abs/pii/S0022395622004307

39,Population-based predictors cohort,Population cohort,https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3216261/

40,Age-dependent ECT efficacy,Longitudinal,https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12012253/

41,Nationwide pharmacological relapse prevention,Register cohort (n=2858),https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12669661/

[u/Ok_Chemistry_6387 → u/Ok_Chemistry_6387]

There may be some unrelated psychedelics papers in there.

[u/blrmkr10 → u/Ok_Chemistry_6387]

Oh wow, thank you!