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Post ECT: brain damage, cognitive impairment and severe memory loss.

Posted by koerth @koerth, Mar 20, 2023

Are there others living with post ECT repercussions after the brain should have cleared, such as: cognitive decline, severe short term and long term memory loss, and disability?
It has been two years since I was subjected to ECT and all the while I hoped my brain would “clear” as the doctor said it would. It has not. I have gone on disability and things continue to decline for me. In addition I did not reap positive effects in the form of relief from depression.
It has not been a win and I am now wondering if I have early onset of dementia. I cannot find good information online re this and hoped someone in this community might see this. Thank you.

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9yearspast | @9yearspast | Jul 22 11:10pm

I want to tell you that I am so sorry this has happened to you and all you have endured.

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saskatchewanlady | @saskatchewanlady | Aug 11 1:02am
In reply to @astaingegerdm "@koerth Welcome to Mayo Connect! I’m so sorry to hear what you have been going through..." + (show)
Profile picture for Ingegerd Enscoe, Alumni Mentor @astaingegerdm

@koerth
Welcome to Mayo Connect!
I’m so sorry to hear what you have been going through after your ECT treatments.
There are still discussions and disagreements about the value and risk of ECT treatments.
We do know that it can make a huge difference in the treatment of severe depression for individuals not responding to other therapy. I’m sorry it did not give you that relief.
There doesn’t seem to be a clear answer to if ECT causes brain damage or just changes in function.
You seem to have significant mental and neurological deficiencies afterwards. Have you discussed this with a neurologist or your psychiatrist? A thorough neurological evaluation should be able to tell you what has been happening in your brain.
Let’s hope someone with similar experience will see your post and respond.

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I had more than 30 ECT treatments between a period of 12-15 years ago and I too live with major memory loss and the inability to learn new things and have them stick in my brain. I had the treatments because of MDD and although it helped my depression at the time it has left me with major memory issues that I too thought I may have dementia issues. I am currently on disability for depression but can no longer remember aspects of my job, I cannot remember experiences from a week prior and have no recollection and feel as though I am being gaslighted, it’s very frustrating and frightening. I have spoken to my family doctor, my psychiatrist and my psychologist about this issue and no one has suggested that I see a neurologist but after reading that I am not the only one who is living with these memory issues I will certainly be asking my family doctor and psychiatrist tomorrow.

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9yearspast | @9yearspast | Aug 12 3:30pm

I was pressured to have it. I had brain surgery and became stressed afterwards with my ability to function as I felt cloudy and have ptsd. They go the bright idea that shocking me. I have a rare brain disease. They told me it wouldn’t cause any memory issues. Fortunately I saw a study at the same hospital trying to minimize the memory loss. Because it has not been studied properly and grandfathered in there are no contraindications. I felt enormous pressure to do it. One of my friends had one and she was so traumatized that she killed herself shortly after. I didn’t get it, but it is dangerous to live in a state that has it. It has been done a great deal of patients with dementia where I live. People stop crying out for help. I feel what they are doing to people is wrong.

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moboy312 | @moboy312 | Aug 13 3:14pm

When contra indicated it seems you shouldn't have had ECT if that was your situation.
But in my case and for a lot of others ECT can be extremely helpful.
I have been prescribed most of the antidepressants there are but the suicidal ideation and suicide attempts were unrelenting. I had ECT 30 years ago and it was helpful. I just now finished a course of ECT last week. I continue with minimal meds and my very severe depression has been relieved.
I am sorry about your situation but for me and many others it has been a great relief from the unrelenting and debilitating symptoms.
Take care

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jenatsky | @jenatsky | Aug 18 10:35am

You are all on the right track in your thinking regarding the side effects of ECT and especially long term effects.
https://pubmed.ncbi.nlm.nih.gov/39652673/

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carissa1383 | @carissa1383 | Sep 2 3:11pm
In reply to @koerth "I appreciate the outreach on my post. I have never posted on anything, not even a..." + (show)
Profile picture for koerth @koerth

I appreciate the outreach on my post. I have never posted on anything, not even a “google review “ lol. However I took a chance on this as I am becoming so scared and desperate.
My psychiatrist will acknowledge my memory loss and my doctors had to participate in getting me on disability- however none of them will touch the subject in regards to ECT.
I believe it’s because I live in a small medical community mostly run by one clinic.
I would like to see a Neurologist at Mayo Clinic.
It has been the most difficult time in my life and I have lost so much personally and professionally.
Thank you.

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Hey, i know this was posted years ago but Iv been having a lot of problems since my ECT 2 years ago. Are u still experiencing any of this? How many treatments did u receive?

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carissa1383 | @carissa1383 | Sep 2 3:15pm
In reply to @june54 "My 37 year old son had 11 ECT treatments 7 months ago for depression. He is..." + (show)
Profile picture for june54 @june54

My 37 year old son had 11 ECT treatments 7 months ago for depression. He is also bipolar but depression was his main symptom. He has not been himself ever since. He has trouble with concentration, focus, motivation, anxiety and is fearful of not being able to manage. It seemed the ECT was helping at the start but after about 6 treatments he could barely keep his eyes open the next day and his memory was gone. I talked to the staff but no one seemed concerned. The psychiatrist never returned my calls. Since then he had improved but he knows he is not the same. His doc and the psychiatrist don’t think it was the ECT so dismiss his concerns. I know he is struggling every day. He was a top honours university graduate and now he can’t even cope to read simple instructions without having anxiety attacks.

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Definitely the ECT bc I’m having the same kind of problems for 2 years now. Please respond if this is still happening so i know im not going crazy

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june54 | @june54 | Sep 2 4:45pm
In reply to @carissa1383 "Definitely the ECT bc I’m having the same kind of problems for 2 years now. Please..." + (show)
Profile picture for carissa1383 @carissa1383

Definitely the ECT bc I’m having the same kind of problems for 2 years now. Please respond if this is still happening so i know im not going crazy

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You aren’t going crazy. Keep on going….in time it may get better but if not learn somehow to live your life as best you can despite the difficulties. I hope in time it gets better for you.
Sadly for our son it did not. He left us oct 15, 2023 at the age of 38.

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turttoosty | @turttoosty | Dec 1 12:28pm

I know you posted this years ago now so I'm not sure if you'll see this but I did ECT for about 6 months in 2023. I have had trouble with speaking correctly and severe memory issues that make me forget what I'm saying while I'm in a conversation with someone. I now have carpal tunnel at 23, so many nerve issues in my limbs, and I had to quit my job because of it. We're trying to figure out what symptoms are from ECT and which aren't, but you're not alone. I wish I never did it.

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Randy Shields | @randallshields56 | Dec 1 5:25pm
In reply to @turttoosty "I know you posted this years ago now so I'm not sure if you'll see this..." + (show)
Profile picture for turttoosty @turttoosty

I know you posted this years ago now so I'm not sure if you'll see this but I did ECT for about 6 months in 2023. I have had trouble with speaking correctly and severe memory issues that make me forget what I'm saying while I'm in a conversation with someone. I now have carpal tunnel at 23, so many nerve issues in my limbs, and I had to quit my job because of it. We're trying to figure out what symptoms are from ECT and which aren't, but you're not alone. I wish I never did it.

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@turttoosty thank you for the update and posting. sometimes you have no real choices but to have surgery or like me go till you drop and have to have it done. my injury and surgery this march will be two years and I'm still healing. its some days i win some i don't. still have memory problems and seizures let me know they are still only a few feet away. i figure out with so many work from home jobs available or phone ones might have to go back to school and I'm 69. thank you for your post and im sending prayers your way--------- sent

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