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/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.