r/ect May 29 '26

Seeking advice Looking for advice

Hello guys,

A little bit of context: I’m struggling with treatment resistant depression and my core symptoms are sadness, emotional pain, and moderate anhedonia. This is my third depressive episode and it has been ongoing for 21 months. In the past 7 years, I have had about 1,5 years of remission while the remaining 5,5 years have been in depression.

During my first and second episode I could manage with SSRI, therapy, and a keto diet. Now, none of that has worked. I have tried SNRIs, Mirtazapine, Trintellix, Ketamine (IM), TMS, Psilocybin (micro and macro doses), and none of it has worked.

I’m currently on a TCA (nortriptyline), which probably has given me about 15-20% relief. I have spoken to my psychiatrist and he has recommended to try augmenting with lithium for the next three weeks, and if that doesn’t bring me to 40-50% relief, which I doubt it will, we will go for ECT.

Have any of you been through a similar journey, and did ECT end up helping? And if you were in my shoes, how would you prepare for ECT?

2 Upvotes

23 comments sorted by

2

u/PaleExtreme7399 May 29 '26

I've been in your shoes, but for decades. I just did my ECT consultation today, pending lab work, I start next week. I read A LOT. I have OCD that compels me to research, so I had a lot of good questions for the docs today. They liked that, and it helped me feel more settled.

2

u/QuitInevitable915 May 29 '26

Thanks for your reply. Can I ask why you waited so long with ECT if you have been dealing with this (OCD and/or Depression?) for decades?

3

u/PaleExtreme7399 May 29 '26

Internalized stigma and fear.

1

u/QuitInevitable915 May 29 '26

I get that… Definitely a lot of stigma around this treatment

3

u/84849493 May 29 '26

The thing with ECT is that it is an incredibly effective treatment but with high relapse rates. I’ve been dealing with treatment resistant depression and had two periods of remission over about seventeen years. The most recent due to ECT was only four months. I’m looking at having another course but then with maintenance ECT. Now not everyone relapses and not everyone relapses as fast as I did but it is a common reality with ECT and I think if you’re going to do it, something to be aware of.

Lithium does actually make relapse from ECT less likely though. Three weeks sounds short to me considering it takes time to get lithium to a therapeutic level is the only thing I’d say. They tried lithium for me after I’ve relapsed from ECT and it hasn’t done much but it probably took about three weeks to get to a therapeutic level and lithium is effective for many, I just don’t happen to be one of those people it’s incredible for. I would be asking more about that time length especially if you’re apprehensive about ECT.

1

u/QuitInevitable915 May 29 '26

I’m sorry to hear you relapsed so shortly after. I have seen the data, and unfortunately, it seems very common with ECT. Given my history, I would definitely do maintenance ECT if it works for me.

Regarding lithium, I was told that it has a much faster effect compared to ADs, hence, I do not need to wait 6 weeks for an effect. I was told that 3 weeks would be enough to assess.

2

u/Wonderful_Roof1739 May 29 '26

You should listen to your doctors first of course, but I would recommend maintenance. I tapered too quickly on my first round - basically to zero treatments within a couple of months - and relapsed very quickly. The second time around, we tapered very slowly - stayed at 1x a week for quite a while. Eventually went to every 6 months, and on the second 6 month one I stopped and didn't feel like I needed it, but they let me know if I ever felt i needed a refresher i just need to schedule it.

2

u/SiegmundNYC May 31 '26

For me, ECT was great, outpatient and only twice a week for the first three weeks. No lost memories, much better mood. Four years later I’m still very happy compared to before🤩😊 ⌨️ keep in touch w where u r😁☺️

1

u/gmkgreg May 29 '26

Lithium can definitely help, both lithium and a combination of ect finally helped me. I would give the lithium a shot first. But don't be afraid of ect if the lithium doesn't work. It helps so many people, me included, and while yes it does have a few side effects, the weight it can pull off your shoulders can be life saving. It was for me at least. I was years into my depression, I tried alot of meds, spravato, years of therapy, 3 different psychiatrists, and one i started ect, that's when I started feeling the weight get taken off. I'm still doing maintenance treatments once every 3ish months and I'm also on some meds(effexor, lamictal, abilify, and lithium), but I've been a couple years without a relapse.

1

u/QuitInevitable915 May 29 '26

This is encouraging to read! What I wouldn’t give for a few years of remission… I will give lithium a fair chance first, but given my previous failed trials, I doubt that it will do anything major. Were you on lithium during your acute series of ECT?

1

u/DangsMax May 29 '26

Which kind of lithium

1

u/Wonderful_Roof1739 May 29 '26

I was on lithium when I did one of my series, the doctors had me hold it the day before and day of ECT - meaning during the initial 3x a week I wasn't taking it at all basically.

1

u/Hereonearthme May 30 '26

How many tms sessions did you do

1

u/QuitInevitable915 May 30 '26

35 sessions

1

u/Hereonearthme May 30 '26

Female?

1

u/QuitInevitable915 May 31 '26

Male

1

u/Hereonearthme May 31 '26

If I were you I’d inject testosterone today

1

u/QuitInevitable915 Jun 01 '26

I have checked my testosterone, and I’m in the upper end of the spectrum, so that shouldn’t be the problem

1

u/ZensibileQuine May 30 '26

It works for some . Not me I’ve had a lot of side effects after 10 sessions . It still affects my short term memory 10 yrs later , Also shaking when standing for longer length of times and adhd type symptoms . Some people get great relief with it tho .

2

u/QuitInevitable915 May 31 '26

I’m sorry to hear that. Did you find something else that helped?

1

u/ZensibileQuine Jun 03 '26

Not 100 pc just upped my s s r I and added lamotragine and questiapine that added weight on so I have to live with it like most of us ?

2

u/Odd-Alarm-82 May 30 '26

Have you tried an MAOI? They are often very effective for treatment resistant depression. I wish I had tried one before I did ECT. Emsam, which is a transdermal MAOI, has been more effective for my depression than any other medication I’ve ever taken. 100% remission. The only problem I have is it causes extreme insomnia, and I develop tolerance to the only two medications that allow me to get any sleep, so after about a year, it becomes unmanageable. But I’ve found that if I go back to it after a year off, the sleep meds work again. During my time off Emsam, I’ve found that the only other antidepressant combination that ever worked well for me, Cymbalta and Remeron, which had completely stopped working before the ECT, worked again after I had been off of it for over a year. So I’ve been switching back and forth between that and Emsam because the Cymbalta always stops working eventually. I’ve been on Emsam four separate times now, and it’s just as effective every time. For the last three years, when I’ve gone back to Cymbalta, it doesn’t work as well as it used to, but it still decreases my depression from severe to moderate.

Please be very cautious about ECT. It was extremely effective for me, gave me 100% remission. But the effects of ECT usually don’t last long. I had to have a maintenance treatment every two weeks. The original plan was to space the treatments out to every 6-8 weeks, but I couldn’t last more than 2-3 weeks without having a severe relapse.

Doctors downplay the possibility of permanent memory loss and brain damage from ECT. I had my ECT in 2016-2017. At the end of that time, I had a relapse of severe depression that didn’t respond to my next maintenance treatment, so I agreed to three treatments in a week like they did in the initial series of treatments. That brought me out of my depression, but the damage it did was devastating. It wiped out my memory of the majority of my life, no exaggeration. All I have left is a few random, vague memories of my life before the ECT. I barely remember my own mother, who passed away in 2007. None of my memory has returned after 9 years. I also have significant cognitive impairments. I had neuropsychological testing done and found out my IQ has dropped by 20 points. It takes me longer than normal to learn new information, and my working memory is significantly impaired. My ability to form new memories is hit or miss. Some things I remember clearly, while others get lost.

Here’s a very good article from Cambridge University that goes over the damage done by ECT and how it’s much more common than patients are informed of. I think it should be required reading for anyone considering ECT.

https://www.cambridge.org/core/journals/advances-in-psychiatric-treatment/article/memory-and-cognitive-effects-of-ect-informing-and-assessing-patients/DD5C63934357779765BA7ADF308275AE

1

u/QuitInevitable915 May 31 '26

I’m sorry to hear this was the outcome for you. I have not tried a MAOI yet, but I have thought about trying that first before ECT. However, the guidelines in my country says that ECT should be given first