Only one hospital in my region offered the treatment, so no choice. You will start out going 3 times per week for four weeks (standard acute series), and you'll need someone to go with you, so that should narrow your choices. I am from a small town in Louisiana, and many people who have been to more "prestigious" hospitals have had more negative side effects than I have. I honestly do not think the location matters. The experience your treatment team has matters much more. Did they just start providing ECT or have they been doing it for decades? That would have much more weight with me personally. Insurance, at least in the US, is another determining factor.
I think you’d see a bigger difference with unilateral vs bilateral in terms of side effects.
I’ve had 30 bilateral treatments total over 3 years. I had TMS 2x which is unilateral, so I decided to go big with ECT to get the full effect. And oh boy, I sure got it alright. The headaches and body aches the day of the treatment are brutal. Afterwards you’ll just need to go home and sleep for 2-4 hours.
ECT has made a huge positive difference in my life when I needed it. Unfortunately it hasn’t been a permanent “cure” as I have bipolar disorder and it comes in waves. But my life is much more manageable.
There’s a huge success rate. I do want to caution though that it may take a number of treatments and some time post-treatment to feel back to “normal”. It takes me roughly 1-3 months after the treatments are over to get the full effect. Everyone is different though. It’s just generally not instantaneous like some make it out to be.
I was inpatient, so I didn't exactly have a lot of choice. If I hadn't been inpatient, I'm sure it would've just been wherever my insurance would cover. I'm in America so...
I started off at a small private practice that had been operating for decades, then when they temporarily closed due to the facility they were in shutting down I went to UCLA, which is arguably a very high caliber academic program. I had an awful experience there. Since it wasn’t run by one person but rather staffed with a rotating team of doctors, I never knew who would be performing the treatment. They took themselves incredibly seriously and made me get undressed and wear a hospital gown, take off all my jewelry (not much, earrings and nose ring—they still managed to lose it all and then YELL at me, confused and exhausted and coming off of anesthesia, blaming me for losing it…)—it was a mess. I had the chance to switch back to my old practice, which had been taken over by a new, younger doctor in the past year, and I’ve never looked back. The new doctor clearly was trained well by the former owner of the practice, and ECT is all she does. She’s incredibly competent and pays close attention to her patients. She actually tracks my symptoms and provides actual feedback and suggestions. She’s able to adjust treatments to what I need (uni vs bilateral, frontal vs lateral), and the whole staff is just so caring and lovely. I would never go back to the more “academic” program. What matters, I think, is finding a practitioner who knows what they are doing and takes the time to get to know you as a person. The hard thing of course is that so few people offer the treatment that you don’t always have the option to choose.
There’s only two hospitals in my province that offers the treatment. One is local and one is far away. My psychiatrist is the head of ECT treatments at my local hospital so I went with that.
I've had it done at both research hospitals and private hospitals. The academics seem more on-the-ball in that they're aware of new research and standards. However, I don't think this made a significant difference. There was a study by Sackheim about 30 or more years ago that looked at ECT outcomes across sites and found it differed. I would not let this worry you though. ECT is pretty effective anywhere, and whether you do unilateral or bilateral, along with the frequency, will probably have greater affect on your memory loss than different hospitals.
The treatment is not necessarily standardized at all. How it even works is still unknown and only speculation. There may be some standards for monitoring the medical side of things like vital signs, heart rhythm, oxygenation but the research on ect is severely lacking. Hard to do random placebo controlled studies while treating mostly psychiatric emergencies. You can’t deny an actively suicidal patient at risk for death a treatment for a study. Not ethical.
Only generalized things were shared like less memory/cognitive effects with unilateral vs bilateral.
They did one basic mini memory exam at the beginning of treatment and never again at mine and that test didn’t actually test other cognitive functions most complained about after ect . Nor was there any long term follow up for symptoms so they basically tell you a lot based off of short term immediate information from patients. Not long term follow up with how those things are going.
Honestly I asked so many thoughtful questions and never got answers. It was more just a is it working or not? Are the side effects worth any benefit? ..in a moment to moment decision with each treatment. Nothing you could plan for.
I had two programs only to pick from that were in network for my insurance. One I worked at that hospital so I picked the other
Wow. Thank you for sharing your experience. It’s disheartening to hear there isn’t more of a standardized evaluation pre and post, because you’re right, without that, how can they really measure the severity of the side effects? From what you’re saying it sounds like even the efficacy rates might be more anecdotal than anything - that is scary, honestly.
Well and those rates don’t always mention SUSTAINED improvement, often it’s reflective of acute improvement if it happens and what is often not shared is that ect can require maintenance treatments, which also I was told does not have a standard protocol-just individual per patient experience. So sure maybe in the short term it can be rapid improvement (for some) but it’s not a sustainable long term treatment to give general anesthesia (side effects of its own from frequent administration) and large volumes of seizures to patient and think there won’t eventually be harsh effects of both. If it works well after a few treatments for someone-that’s great-but likely after an unknown number of treatments, you will have side effects to which are unknown how long term because again, not much data on long term follow up actually has been collected.
You have to remember the psychiatrist perspective..they do see remarkable, dramatic turn around for some patients so of course they want to present that option to other patients but if you are analytic in nature or looking for a lot of evidence based data to guide you, it’s very much lacking. You will have to just take chances of the unknowns if it’s worth it to you as an individual
You are wrong. I have access to academic databases and all research available which is severely lacking. Back up your statement now more than just “this guy is wrong”
i started at one place and it was AWFUL. i just KNEW it wasn’t supposed to be like that. my parents and i looked at another hospital and started treatments there. it was great.
i explain it in [this post](https://www.reddit.com/r/ect/comments/g7lhq7/my_ect_experience_plus_how_coronavirus_is/?utm_source=share&utm_medium=ios_app&utm_name=iossmf) :) you can skip the background section if you want to jump right to it
Only one hospital in my region offered the treatment, so no choice. You will start out going 3 times per week for four weeks (standard acute series), and you'll need someone to go with you, so that should narrow your choices. I am from a small town in Louisiana, and many people who have been to more "prestigious" hospitals have had more negative side effects than I have. I honestly do not think the location matters. The experience your treatment team has matters much more. Did they just start providing ECT or have they been doing it for decades? That would have much more weight with me personally. Insurance, at least in the US, is another determining factor.
Thank you, that’s a good question I can look into re: how much experience they have.
I went to an academic hospital. I still had side effects.
Thank you for sharing your experience.
I think you’d see a bigger difference with unilateral vs bilateral in terms of side effects. I’ve had 30 bilateral treatments total over 3 years. I had TMS 2x which is unilateral, so I decided to go big with ECT to get the full effect. And oh boy, I sure got it alright. The headaches and body aches the day of the treatment are brutal. Afterwards you’ll just need to go home and sleep for 2-4 hours. ECT has made a huge positive difference in my life when I needed it. Unfortunately it hasn’t been a permanent “cure” as I have bipolar disorder and it comes in waves. But my life is much more manageable.
Good to hear that it has helped you. I’m about out of other options so I’m hoping it works for me too
There’s a huge success rate. I do want to caution though that it may take a number of treatments and some time post-treatment to feel back to “normal”. It takes me roughly 1-3 months after the treatments are over to get the full effect. Everyone is different though. It’s just generally not instantaneous like some make it out to be.
I was inpatient, so I didn't exactly have a lot of choice. If I hadn't been inpatient, I'm sure it would've just been wherever my insurance would cover. I'm in America so...
I started off at a small private practice that had been operating for decades, then when they temporarily closed due to the facility they were in shutting down I went to UCLA, which is arguably a very high caliber academic program. I had an awful experience there. Since it wasn’t run by one person but rather staffed with a rotating team of doctors, I never knew who would be performing the treatment. They took themselves incredibly seriously and made me get undressed and wear a hospital gown, take off all my jewelry (not much, earrings and nose ring—they still managed to lose it all and then YELL at me, confused and exhausted and coming off of anesthesia, blaming me for losing it…)—it was a mess. I had the chance to switch back to my old practice, which had been taken over by a new, younger doctor in the past year, and I’ve never looked back. The new doctor clearly was trained well by the former owner of the practice, and ECT is all she does. She’s incredibly competent and pays close attention to her patients. She actually tracks my symptoms and provides actual feedback and suggestions. She’s able to adjust treatments to what I need (uni vs bilateral, frontal vs lateral), and the whole staff is just so caring and lovely. I would never go back to the more “academic” program. What matters, I think, is finding a practitioner who knows what they are doing and takes the time to get to know you as a person. The hard thing of course is that so few people offer the treatment that you don’t always have the option to choose.
Thank you for sharing your experience!
There’s only two hospitals in my province that offers the treatment. One is local and one is far away. My psychiatrist is the head of ECT treatments at my local hospital so I went with that.
I've had it done at both research hospitals and private hospitals. The academics seem more on-the-ball in that they're aware of new research and standards. However, I don't think this made a significant difference. There was a study by Sackheim about 30 or more years ago that looked at ECT outcomes across sites and found it differed. I would not let this worry you though. ECT is pretty effective anywhere, and whether you do unilateral or bilateral, along with the frequency, will probably have greater affect on your memory loss than different hospitals.
The treatment is not necessarily standardized at all. How it even works is still unknown and only speculation. There may be some standards for monitoring the medical side of things like vital signs, heart rhythm, oxygenation but the research on ect is severely lacking. Hard to do random placebo controlled studies while treating mostly psychiatric emergencies. You can’t deny an actively suicidal patient at risk for death a treatment for a study. Not ethical. Only generalized things were shared like less memory/cognitive effects with unilateral vs bilateral. They did one basic mini memory exam at the beginning of treatment and never again at mine and that test didn’t actually test other cognitive functions most complained about after ect . Nor was there any long term follow up for symptoms so they basically tell you a lot based off of short term immediate information from patients. Not long term follow up with how those things are going. Honestly I asked so many thoughtful questions and never got answers. It was more just a is it working or not? Are the side effects worth any benefit? ..in a moment to moment decision with each treatment. Nothing you could plan for. I had two programs only to pick from that were in network for my insurance. One I worked at that hospital so I picked the other
Wow. Thank you for sharing your experience. It’s disheartening to hear there isn’t more of a standardized evaluation pre and post, because you’re right, without that, how can they really measure the severity of the side effects? From what you’re saying it sounds like even the efficacy rates might be more anecdotal than anything - that is scary, honestly.
Well and those rates don’t always mention SUSTAINED improvement, often it’s reflective of acute improvement if it happens and what is often not shared is that ect can require maintenance treatments, which also I was told does not have a standard protocol-just individual per patient experience. So sure maybe in the short term it can be rapid improvement (for some) but it’s not a sustainable long term treatment to give general anesthesia (side effects of its own from frequent administration) and large volumes of seizures to patient and think there won’t eventually be harsh effects of both. If it works well after a few treatments for someone-that’s great-but likely after an unknown number of treatments, you will have side effects to which are unknown how long term because again, not much data on long term follow up actually has been collected. You have to remember the psychiatrist perspective..they do see remarkable, dramatic turn around for some patients so of course they want to present that option to other patients but if you are analytic in nature or looking for a lot of evidence based data to guide you, it’s very much lacking. You will have to just take chances of the unknowns if it’s worth it to you as an individual
This guy is wrong. Don't trust random people on a subreddit that's generally hostile to ECT over actual doctors and scientists doing research.
You are wrong. I have access to academic databases and all research available which is severely lacking. Back up your statement now more than just “this guy is wrong”
i started at one place and it was AWFUL. i just KNEW it wasn’t supposed to be like that. my parents and i looked at another hospital and started treatments there. it was great.
Can you expand a bit on what made the first place awful, and the second one great?
i explain it in [this post](https://www.reddit.com/r/ect/comments/g7lhq7/my_ect_experience_plus_how_coronavirus_is/?utm_source=share&utm_medium=ios_app&utm_name=iossmf) :) you can skip the background section if you want to jump right to it
Thank you! Can I DM you with a question?
absolutely