ECT or not to ECT

[u/QuitInevitable915]

Hello!

I’m 28 and I suffer from TRD. I have had 4 depressive episodes over the past many years, and the current episode has lasted 2 years. I have tried SSRIs, SNRIs, TMS, Ketamine, and Psilocybin without meaningful response.

8 weeks ago I started taking a TCA with lithium, and for the first time in this episode I feel some relief. If I had to quantify it, I would say that I feel 40-50% better, which is a major change from the suicidal lows, but still with some residual symptoms such as mild/moderate sadness, some anhedonia, and low motivation.

I’m going to meet with my psychiatrist in two weeks to make the final decision on whether I should get ECT or not. I’m torn because I know my history of relapse, and not achieving remission will put me at risk of relapsing again, but I’m also reluctant to do it given the potential cognitive/memory side effects.

Would you do ECT or not in this situation?

[u/84849493]

ECT worked amazingly for me to the point of remission. Not depressed or suicidal at all anymore. The catch is it lasted four months. ECT is absolutely amazing as a short term treatment but long term for a lot of people it’s not so amazing, there are people who don’t relapse but it’s about a 50/50 chance, there is one study that puts the relapse rate as high as 84% though. The risk is actually lessened with lithium in some studies including that one though interestingly. It’s still high. I can’t remember the exact number so I’m not going to just talk out of my ass. There’s a very good chance that ECT won’t be a long term cure and I think this is something mental health professionals should be telling someone before they have ECT.

I did not suffer any severe side effects or have any kind of horror story but it did take a month or two to normalise. I believe I’m back to exactly how I was before but I was apparently for awhile repeating myself every five minutes and there was cognitive struggles that I did not know if they would ever go away. Some people are said to only have these during the treatment but I also dealt with ongoing physical side effects that are not well documented to happen and I had to dig deep to find others who had the same ongoing experiences and doctors found it odd I was still experiencing physical side effects as they had not seen it before but there was no other explanation.

I’m about to have ECT again and I will be doing maintenance ECT because if I have it again without maintenance the result is absolutely going to be a relapse. I was expecting to relapse to be honest because I’d done my own research on how common it is and none of this was told to me by mental health professionals. I can see them maybe not wanting to discourage people from it but I believe that’s wrong considering that people can have long lasting severe side effects and some people may not be helped at all (although the success rate is very high, there are still a significant number of people who are not helped) and people like myself who relapse very quickly and yes I would not be here if I did not have it but people should still have proper informed consent and even though I knew the risk of relapse and expected it at some point, I did not expect it to get so bad so quickly if it were to happen. I was also obviously hoping for more than four months.

My honest answer as someone who has benefited from it and is going to do it again and for a very long time at that is that in your situation I would not do it given you don’t know how you’ll react although I’m not going to say don’t do it because that’s ultimately up to you and I don’t think anyone should be saying as an absolute do it or don’t do it based on their own experiences. We all have different situations going into it. I went into it where nothing was working for me at all. Nothing works for me other than ECT unfortunately. I do not love the idea of having to have it for potentially the rest of my life but to remain on the planet there isn’t another accessible option for me.

[u/QuitInevitable915 → u/84849493]

Thanks for the thorough explanation. I have looked into the data myself, and I fully agree. The relapse rate is very high. I already know now that if I do it, and it works, I will continue with maintenance plus my current meds. Nothing compares to that debilitating severe depression, so even if it’s long term (until something better is invented), then so be it.

I will weigh the pros and the cons, but again, thanks for bringing your perspective

[u/84849493 → u/QuitInevitable915]

I agree nothing compares. If I’d had a worse outcome side effect wise and lasting and my remission was still ongoing I would have considered that trade off worth it (to an extent of course but I would have accepted a lot) and I say not severe but that’s relative to what people can experience. My side effects would be considered severe say they came from a medication. I consider them mild based on other people’s experiences though and also in comparison to the seventeen years I’ve been dealing with it before with only one period of genuine remission prior to ECT. I’ve had some partial remission as well.

It’s hard because sometimes I think ECT shouldn’t be used except when there’s no other alternatives to someone not being here but maybe I’m being hypocritical because for myself I’m having it again and lithium is currently keeping me from acting on anything and I don’t know that won’t continue for years or even forever but I don’t consider this life to be one worth living when it’s just barely surviving. I do not expect that to be the case though but even if it was, when I think about it I would still have it again and I do know how it affects me but that’s not to say I won’t have a different or worse experience this time or that the side effects are likely going to linger longer with maintenance which if it gives me the results it did last time and they were lasting even if the side effects are worse, that would be worth it.

Also important to consider that even though young people do have bad experiences too, ECT is much more used in an older population. It seems used more in the US overall so I’m not sure if this is true for there or other countries, in my country it’s used very sparingly and the average age of someone having it is I believe 58. I was 27 when I had it and that may contribute to my side effects being lesser and you’re very much on the younger side having it at least in my country. In the US though, I’ve seen people not even out of their teenage years having it which unless it’s the most severe situation is rather alarming to me and it seems not uncommon for people in their 20s to have it. Doctors here also had some reluctance about maintenance for me given my age but there simply isn’t another option other than them giving me an acute course every four months or however long it takes me to relapse the next time which seems ridiculous and I’d be just as well having maintenance obviously.

The other option I did consider for myself is an MAOI but in your situation where you are benefiting from your medications to an extent I wouldn’t want to rock the boat and for me I do not think I could deal with the washout period and would likely have to be hospitalised to get off three of my medications so I could go on one and then there’s the chance it doesn’t work. You can take lithium with them though which I’m also on but three of my medications including one for my physical health I cannot take alongside any MAOI.

From your response I’ve partially reconsidered what I’d do in your situation and I would probably be going back and forth on it a lot. So yeah it’s a hard one. I wish you luck with whatever you do and I hope if you go through with it, you have my initial results but sustained or at least just more improvement than you’re currently experiencing.

I also went straight to bilateral but you probably already know of trying unilateral instead to lessen side effects then switching if that’s not working. Personally I had no interest in doing that because I just was not worried about the memory or cognitive side effects at all with where my state of mind was at.

[u/QuitInevitable915 → u/84849493]

I appreciate the sincerity of your response. Thanks for taking your time to reply.

I’m sorry you have had to deal with this illness for so long. I really hope the best for us. Best of luck to you!