#if you are prone to nausea and need to go under general anesthesia

[americanpsycho1991]

hi, this might be way too personal a question and if it is I'm really sorry, but my psychiatrist recently brought up ECT as a possible treatment option for me and I was just wondering what it was like for you, and did it help at all. it feels like such an intense thing to go through but he says it can really help (but i know things work differently for each person). thank you so much, I'm sending you lots of love

Long answer, it’s under the cut

Hi. No need to apologize.  Let me give you one of my classic, incredibly long answers where I say the same thing a hundred different ways and do minimal editing before I post it.

ECT is a lot to think about, and I don’t feel that I was given the proper amount of information to make a well-rounded decision at the time.  In addition to this, if you search online, you’ll find a lot of people writing about their personal experiences.  These can be intimidating, as the accounts that appear online are often the very negative ones, where people feel they were pressured into the treatment and/or sustained significant memory impairment afterwards.  You’ll find people comparing ECT to lobotomies, and saying it shouldn’t be allowed except in the most extreme of cases.  I truly don’t believe that those accounts accurately represent the procedure, but I do recommend you read a few, so that you’re aware of the kind of worst-case scenarios that hospitals won’t tell you about.  I can give you an overview of my experience, and list what I believe are the main things that are important to consider before you make any decisions.  My biggest recommendations are that you a) gather as much information as you possibly can, and b) try TMS first.  I’ll talk a little more about TMS later on.

I got a course of ECT starting at the tail end of an inpatient stay at McLean hospital, through a 2-week residential DBT program on the same campus, and after I went home as well.  I don’t recall exactly how many treatments I was intended to get; I got quite a ways in, but didn’t end up finishing the entire course.I was 19 at the time.  Some of the patients in my inpatient ward felt that the hospital was a little too enthusiastic about performing ECT - while their treatment providers weren’t pushy per se, they suggested it to a lot of patients, and didn’t seem to share the typical view of ECT as a last or extreme resort that many treatment providers have.

McLean - while certainly not perfect - is considered one of the best psychiatric hospitals in the country, and is very much oriented towards research and trying out new and modern techniques.  As such, they’re more than happy to sign up patients for ECT and TMS (which is a less extreme option that I’ll bring up later).  My memory is foggy, but I definitely remember taking several surveys and approving them to be used for research purposes.

I specifically asked for ECT, because I was feeling desperate after two previous hospitalizations and a long list of failed medications.  They gave me a basic overview of ECT and TMS, and signed me up immediately once I confirmed that I did want ECT.

The hospital absolutely did not give me enough information.  I don’t think they fully conveyed the risks, and I think they are far too eager to sign up anyone with any interest in ECT as long as they’re old enough to medically consent.  I was 19 for christs sake, and no one asked me twice.  Honestly, even if they had properly prepared me, I probably still would have chosen to go forward with it, but that’s not an excuse.  And when I say I feel like I wasn’t properly informed, that’s after I took it upon myself to ask extensive questions beyond what was on the pamphlet they handed me.  I still didn’t get full answers.  If you’ve ever been put on a medication by a doctor who didn’t even list the most common side effects, you know how that feels.  Except instead of getting a headache and not being able to orgasm, you can get permanent brain damage.  So.

I don’t fully agree with many of the people online who say that patients are pressured into being lab rats, but I do think that the hospital’s mission to make progress in the psychiatric field is sometimes placed above their duty to provide a responsible level of care to their patients.  So basically the lab rat thing, but a little more forgiving.  And again, my experience is just from one hospital.  There are far worse places to be than McLean, and I’d imagine many of them offer ECT as well.

the procedure: one of the main issues with ECT is memory loss, so my memory of the actual procedure is a little fuzzy, but here’s what I do remember: you’re either wheelchaired to the ECT waiting room, or you walk there, depending on whether you’re inpatient or not. The first time I went there, and I think once or twice afterwards, they had me sit at a little computer station and fill out a basic survey on my symptoms (rate how true each statement is from 1-4, “I feel hopeless about the future,” etc.). Once it’s your turn, they take you to a small room where you lie down on a stretcher.  They might take your vitals, and they have you take off your jacket or roll up your sleeves so they can put little electrode stickers on you. I don’t think they have you change into a gown unless you’re wearing clothes they can’t get out of the way, like skinny jeans or something. They roll you into another room, and they put an IV in your arm and put you out with anesthesia.

You wake up shortly afterwards, in a long room with full of other people waking up in their stretchers, with medical gel in your hair. That’s one of my most vivid memories; always needing to shower afterwards to get the gel out of your hair.  Someone comes over and gives you some water or juice, or crackers, makes sure you’re feeling okay, and after a little while they clear you to go back to the waiting room.  If you’re inpatient, you’ll be wheeled back up to your ward, and if you’re outpatient, they have you sit in the waiting room for a little while longer before they let you walk back out. I always felt fine - well rested, even - after waking up, but some people get more nausea and whatnot. It’s unusual to have severe symptoms. I couldn’t give you a time estimate, but it’s a surprisingly short procedure, and most of your time is spent in the waiting room or the recovery area.

Afterwards, you’ll be very tired and sometimes spacey for the rest of the day. Once I was outpatient, and getting driven to and from my appointments, I would often fall asleep in the car on the way back.  Sometimes I wouldn’t remember things that had happened that same morning.

At first, it seemed to work. On my non-ECT days in inpatient, I found I had more energy, and felt less depressed.  After a few weeks, though, it petered out and I stopped feeling positive effects from it.  I forget who was monitoring my process, but it was mutually decided that there was no point in finishing the full course.

That was about a year and a half ago. Since then, I’ve noticed that I’m more forgetful than before. I’m trying to work out my brain these days (which I probably should have done right away) to try to restore my memory, and many people who do experience short term memory damage say it fades after a few months to a year.  Even if it sticks around (like mine seems to have done), it’s seldom a level of damage that significantly impairs quality of life.  Like I said, though, there are plenty of horror stories online from people who suffered significant, permanent brain damage and have definitely been impaired by memory issues.  Just because it’s uncommon doesn’t mean it can’t happen.  I assumed that because I was young and in relatively good health, I wouldn’t have as many issues as I ended up having.

In addition to the short term memory impairment, I lost the majority of two years of memories.  If you asked me to tell you about the college courses I took during that time, I could only give you a few course titles, a vague impression of what one or two professors were like, and absolutely none of the information I learned.  I had a major confrontation with a family member during that time, that I only remembered happening because my dad brought it up recently. I still only have a vague idea of what was said.  Even my memories before that time are more blurry and distant than they used to be, and many memories that used to be present in my mind are only familiar once someone else reminds me.

Which brings me to some points to consider before making any decisions (in no particular order):

1. Being put under general anesthesia multiple times a week isn’t good for you.  This was a risk that wasn’t even mentioned to me.  It’s not like I didn’t know anesthesia isn’t good for you, but as a desperate, suicidal 19 year old, I was understandably not making the most balanced choices.  And for all the hospital knew, I could have been a very uneducated person.  I don’t blame the hospital for the decisions I made, but it should have been their job to educate me about the risks, make sure I fully understood them, and to the best of their ability, make sure that I was making as rational a decision as a suicidal 19 year old in her third inpatient ward can be expected to make.

I don’t actually know, but I assume the dose they give you for ECT is lower than it might be for surgeries.  I would still recommend you do some research on the long term effects of general anesthesia, because they can be quite concerning.

2. You can lose a significant number of memories and sustain damage to your working memory.  One of the reasons ECT is often considered an extreme resort is because of how common, how profound, and how permanent the side effects can be.  It’s like looking up a new medication that you’re taking on drugs.com and discovering that some of the most severe side effects that you’d expect to be under less common or rare are actually among the most common.  Older people or those with pre-existing neurological issues are more prone to damage from ECT, but it truly can happen to anyone. There is no way to predict it beforehand, and there is no way to tell what damage you will sustain based on how you feel during the treatments.  I sort of subconsciously assumed that, because I often felt fine and recovered more quickly than those around me in the treatment, that I wasn’t getting the bad side effects at all.  Nope.  You’ll often feel loopy, sleepy, or spaced out during the course of the treatment, and you’ll lose a lot of your immediate memories during that time, so it’s impossible to tell what kind of effects you’ll end up with in the long term.

Then again, the treatment does wonders for some people.  It’s a difficult question - do I try a treatment that may or may not help me at all, which may or may not give me long-term memory damage, but which has the potential to make a massive improvement or cure me altogether?  No one can answer that for you.

3. It’s likely you won’t be given an accurate impression of the treatment by the facility providing it.  Stories on the internet will give you the worst impression of ECT.  The hospital that provides it will give you the best impression of ECT.  In my opinion, the “truth” is somewhere in the middle.  Still, ASK.  Be irritating.  Drill whoever you’re talking to.  Ask them what the worst case scenario is.  Ask them at what point in psychiatric treatment they feel it’s appropriate to introduce that kind of risk.  They’ll tell you about the people whose lives were changed by ECT, but ask them about the people whose lives weren’t changed.  Ask them about the people like me, whose lives weren’t ruined, but weren’t saved either.  Ask how likely it is that you’ll end up with a moderate amount of damage and no benefit.  Remember that you can always have ECT in the back of your mind, but once it’s done, you can’t undo it.

Looking at websites like mayoclinic and whatnot does not provide an accurate impression of the risks. It just doesn’t. There’s no one source - except me, of course :))) - that will give you a truly accurate, balanced impression of what ECT is like.  I just googled a few sites to see what they had to say, and their descriptions make ECT sound like a walk in the park.  It’s not.

It’s not a decision that you need to make quickly.  Again, if I had been told I wasn’t allowed to get ECT until I was out of the hospital and judged to be a little more stable, I still probably would have done it.  But again, everyone is not me.

4. How will you feel having ECT as a possibility in reserve vs. having tried it and failed?  Before ECT, the stakes of my psychiatric and theraputic treatment weren’t quite so high.  They were worth a solid try, but there was always this mystical treatment that I could get if my depression got to the point where all that was left was this “extreme resort.”  I always thought it was strange and probably for insurance reasons that ECT was only for extreme cases, if it had such potential to turn my entire life around.  Why wait year after year, wasting my life trying every class of antidepressant and driving 45 minutes once a week to tell a woman I paid to listen to me that yes, I was still depressed?  Clearly I needed help, so why waste all this time making sure nothing else could possibly work first?  It gave me a sense of hope, but it also put me in a mindset where I found it difficult to fully commit to the therapy I had at the time.

The aftermath of ECT required coming to terms with some tough truths.  It was never a miracle cure.  There were perfectly legitimate reasons why it was reserved for extreme cases.  With that sense of hope gone, I felt crushed, but in a sense, I’m better off.  I feel hopeless very often, and I feel desperate, but at least I’m desperate enough to throw myself into the therapy I have, rather than wonder about the possibilities of what I don’t have.

Of course, there’s no guarantee that ECT would fail for you.  It might change your life.  A lot of people who are helped by it will go back every 6-12 months for a “tune-up.”  But I think it’s a significant enough decision that you need to evaluate how not getting ECT could affect your attitude towards other treatments, as well as being prepared to cope in case you try it and it fails.  You need to enter the treatment with the mindset that ECT failing does not mean you’re a lost cause.  It’s an extreme resort, but it’s never your last resort.  Many things - even the effectiveness of different medications - can change with time.  You can even have another go at ECT years down the road, because sometimes it works differently once you’ve had even more time to age and mature.

5. It’s not considered an extreme resort because it’s a risky-but-potentially-miraculous cure.  Like I said in the last point, I’d held misconceptions about ECT and the reason it’s not done more often for a very long time.  It’s considered an extreme resort because it’s an intense procedure, that most people don’t need, and which doesn’t have the greatest track record.  Some people have life-changing experiences with ECT.  That’s fantastic.  But I’ll bet the reason they don’t advertise the statistics is because an awful lot of people don’t.  Medication and talk therapy has a much higher success rate and much less severe or permanent downsides than ECT.  I know I’ve said it a million different ways, but it’s an awful lot of risk for something that doesn’t seem to have a particularly high success rate.

6. TMSTMS (Transcranial Magnetic Stimulation) is like a less extreme, and much more recently invented version of ECT.  I don’t know the exact details of the treatment, but my roommate at McLean (a woman in her 40s, who had gone up and down during the years but still hadn’t given up) was getting it at the same time I was getting ECT.  Instead of shocking your brain and triggering a brain seizure, TMS is a constant electrical pulse. You stay awake the whole time. It also has potential negative side effects, but they’re generally less extreme than those of ECT.  If you’re in the US, many insurance companies have already approved coverage of TMS.  Many patients who were receiving TMS at McLean were doing so as a less extreme alternative to ECT, with the plan that if TMS was ineffective, they would be open to moving up to ECT.  If TMS can help you, it’s much better to avoid undertaking the risks of ECT altogether.  I was desperate at the time and didn’t see the point of going for the milder treatment, but in hindsight I think it’s a much wiser idea.

I’ve actually thought about TMS for myself.  I don’t know what the likelihood of it working for me now, a year and a half after ECT not working, and I’m concerned that it would make my mild tinnitus worse, but it might be a possibility.  Again, it’s a more extreme treatment than most psychiatric medications and talk therapy, but it’s not on the level of being put under general anesthesia and having a brain seizure two or three times a week.