ECT, my regrets and my long term negative impacts from ECT

[Surviving2015]

I received ECT due to treatment- resistant depression. Now, I have serious memory loss and my brain function is limited- my life has been ruined by ECT and I'm not the same person I once was - is there anyone out there that can relate to me-- where it's only caused negative outcomes… Do you feel like family, friends don't understand how it feels and why everything is worse off today because of ECT- there aren't any support groups out there 4 this.

[Fighting back]

I'm really not sure I'm even remotely qualified to even comment on this, but I sense there is a story that needs to be told here.

You have my sympathy in what appears to be a train wreck of a treatment, but I have no experience with ECT. I do have some experience with seizures as I have family members who are epileptic. I am told that each seizure "rewires" the brain to some extent and I must assume that becomes the theory behind ECT.

Would it help in that despite the lack of direct experience, we may share that sense of a lack of understanding and support among friends and family? I know that applies to me and happily, I can report that I am often proven wrong. I see a lot of anger at your loss of memory, and in an a sense, much of whom you formerly were. I don't know if I can help, but is there a chance that some memory may return with time? Your treatment was certainly traumatic, but you seem to have retained some sense of what has happened to you.

I cannot choose to reply by email. For me, it becomes a privacy issue in that I do not wish to share my email address. I suspect others will feel the same way. I would encourage you to use the open forum as it can be rather therapeutic. Pretty much anything goes here as long as you maintain respect for others. We all are damaged to some degree, hopefully we can help each other to get over it.

I recall when I joined, Red Green quotes were popular and still remain valid. I'm pulling for you, we're all in this together!

[Surviving2015]

I thank you for a response. It has five years since the ect has been done. No the memories do not come back. I just wish I never did the Ect at all. It is also functioning in everyday life that is effected. Yes they say it does rewire the brain but when I think of how it is done and what I allowed them to do , it is disturbing.Allowing electricity to pass through my brain !! I read several articles on how brain injury is a result of ect. I can only hope for a miracle at this point.
My apology and I understand not wanting to use email. My apology to everyone out there who felt I was asking for an invasion of privacy. Messaging here is fine.

[uni]

Hello Surviving2015, and welcome. I wasn't sure which thread to reply to so I just picked this one.

ETC, from what I can tell, is a blessing and a life saver for some people and a curse for others. I came very close to having it myself, with only one medication left to try, and was lucky that med worked. Would I have had the ECT? I really don't know.

I'm sure you made whatever decision you had to at the time, and it couldn't have been an easy one. It becomes a question of "are you better off with it or without it"? Depends on your definition of "better off". I could tell you you're still alive and say that's being better off. Or I could say that your quality of life is so bad that you are worse off. I can't put myself in your shoes, but my heart goes out to you for what you've been through and are living with .

As you've said, ECT involves electricity to the brain, it's an inexact science. By the same token, medications involve messing with the brain, and the consequences are unpredictable. I sometimes ask myself whether meds are any better. Perhaps neither treatment is better or worse, just different. Treatment for mood disorders is, in my opinion, a crap shoot. Educated guesses are made, but until the treatment takes place (ECT, meds, other assorted treatments) the results are unknown for every given person. I don't expect that any of this is news to you, but I did want to share with you my take on ECT overall and see if makes sense to you.

I only wish I could be of some help. All I can suggest is that if possible, is there a professional like a counsellor/therapist/psychologist you could go to share your feelings with? It may not change what you're dealing with, but even to get the strong emotions out there to somebody may be a relief of sorts, if nothing else. Just a thought. I know a lot would depend on getting someone you trust and click with. Such people do exist, but you have to seek them out. Notice I didn't suggest talking with a psychiatrist, although I may be wrong in taking that stance; psychiatrists may know about and perform ECT, but despite (or maybe because of) that, they may also be biased one way or the other.

Thank you for bringing up the topic of ECT, and your experience with it. I suspect that there are way more people out there like yourself, who have had ECT, and could support one another if there was some way of connecting. There may even be people reading this forum who have had ECT but are reluctant to share about it. There are so many misconceptions and such a lot of misinformation on the topic, not to mention stigma, that you don't hear many people bring it up. Maybe if more people shared their experiences (negative, positive or neutral) we could all be more informed, and make more informed decisions.

I hope you continue seeking support, there has to be more out there. By posting here you've made a good start. I hope it helps at least to get things off your chest. I hope to hear from you again as to how you're making out.

[Surviving2015]

Hi Uni

I just saw your post.Thank you so much for the response.I was wondering why I hardly get any responses.I feel helpless and I do see a therapist. The problem is my psychiatrist is her boss, he is the medical director at the same clinic. So when I say anything about the ect she is very quiet. I know she will never acknowledge what happened and speak about what happened.
Once again, to others out there is lots of evidence against ECT but doctors keep doing it. Yes some people have great experience with it but it is a very big chance to take.I had my ECT in 2010 and the memories do not come back.I was a success ful career person despite the illness. But after ECT I lost all my memory of my career and knowledge of my career. I tried returning to work but I couldnt remember anything at all.There was some basic training but I was not able to retain the information.I returned back long term disabilty.Now I spend my days in bed from severe depression, not able to cook and do everyday stuff. I live alone so nobody knows how hard it is. My place is a diaster because of how severe the depression is.People say your still okay your living on your own.No im not okay, I have days where I dont eat because im not able to go get food. Everyday I wish I didnt do the ECT because I truly believe my issues are related to after effects of ECT. I lost everything I worked so hard for. I was working for the government in a great career and now I am nothing.

[uni]

I lost everything I worked so hard for. I was working for the government in a great career and now I am nothing.

Hello Surviving2015. First off, you are most certainly not "nothing"! You are precious, beautiful and worthwhile, regardless of what state you're in.

I know what it is to be severely depressed and living on your own. And my place was a disaster too; I wouldn't accept any visitors because I felt ashamed and afraid. Going out to buy food was a major operation; I didn't want to be seen in public, and only did it out of absolute necessity. For what they're worth, I'll share a few of my thoughts, mostly based on experience - take what you like and leave the rest:

I believe that, regardless of what brings a person to a situation (in your case ECT, in my case a number of things), there are always choices. The choices aren't ideal, but they exist. You've made some brave ones already, like posting some of your story here, and continuing to attend therapy. Again, the therapy isn't ideal, but for now you have made the choice to go, and that's better than not seeking help.

Another choice might be to find a different therapist in a different clinic. If, for whatever reason, you don't get what you need from your current therapist (ie. discussion of ECT), there is nothing wrong with trying a new one.

I know you haven't had much luck finding a support group for people who've had ECT, but I've found that any support group dealing with mental health is better than none. Your therapist or psychiatrist or regular doctor may be able to refer you, or you can ask at a health clinic or read their bulletin boards or pamphlets. There may even be some listed in your local newspaper/news website.

It sounds like ECT was the catalyst for starting you down a path of depression and many other upsetting things. It's a tough path to walk. And although it's not easy to alter the direction of that path, it can be done. You are *so* worth it

[Surviving2015]

Hi Uni it is hard the motivation to continue....its not like before where after a med change I jumped back into life...I guess people are different....the lucky ones are the ones who medications works for and they have a few relapses or even none and life just keeps going....I had ECT because I became treatment resistant but who knows I will never know now...so the reason I cant recover now is I believe the ECT damaged the part of the brain that regulates emotions. This crap has been going on for to long....imagine being depressed and having no relief for five years.....now I just feel everyone has given up and that includes my pyschiatrist. ..its hard to say anything to him because he ordered the ECT ....he says 25 percent of his patients are stuck in a depression...hmmm he must suck as a doctor !!!I dont know im just so stuck ...I cant even get myself out to seek further treatment elsewhere....I guess I feel like the damage is already done...but I also know I cant continue in this depressed state....

[Determined]

Hi Surviving and welcome to the forum. I am sorry I haven't greeted you here. It's mainly because ECT is out of my realm of experience. I have a friend who underwent that method of treatment at least twice and it went well for him. He did admit to some memory loss but it wasn't too severe. I must say that if meds didn't ultimately work for me, and I was afraid they wouldn't, my next consideration would have been ECT. The idea still frightened me but I understand the state of desperation that depression puts us in.

I am afraid I don't have any tangible advice but I echo uni's sentiments in that you are worth fighting for. I have lived with depression for more than 30 years and it definitely wears a person down. And that is putting it oh so mildly. I just want to welcome you here and offer you encouragement and empathy. I know it appears hopeless and it has to all of us at one time or another. In my worst state all I was able to do was hang on and and focus on a time beyond how I was feeling. Never doubt that you will achieve wellness again regardless of what doctors say. We are amazing creatures and capable of so much more than we give ourselves credit for.

It is a brutal fight but it is winnable. I, too, hope you will continue to be a part of the forum.

[Surviving2015]

Hi Determined

Thank you for the kind words, unfortunately I dont see any recovery from the damage done by ECT. Your friend is lucky did he have bilateral or unilateral ECT....apparently unilateral causes less memory loss and some people are just lucky they have minor memory loss.I am so depressed that I cant even express how awful this state really is...im sure this writing is all over the place as well....I had great hopes for recovery and was always a fighter before the ECT...I would still urge anyone not to do it....im so angry about what happened and I cant even properly grieve the loss of everything...it is a big loss....no more dream of getting married and having kids...and buying my own house...no more dream of going on vacation...everything is gone....the worst part is not being able to face my elderly parents and telling them that my life is over and I no longer work and live on disability. ..I cant face them I feel so much shame and embarassment....

[Surviving2015]

I am not eating or drinking properly.........I cant even get up to do everyday things...exercise is out of the question.....cant explain the sensation in my brain....I just want it to go away.....im scared to go to the hospital because that is where they did the dreaded ECT.....but I cant continue this....also I have a dog and I have no place to leave him...so I have been putting off going go the hospital. ...but I also am not sleeping properly.....Im not sure what will happen...feeling so awful and not wanting to wake up at all....

[AJ]

If I had to go to the hospital, I'd leave my dog at the kennels. There are some really good ones. (I love my dog dearly but my health would be just as important).

I hope you're feeling better soon Surviving2015.

[Surviving2015]

Hi

Do you know of a good and reasonable kennel in Toronto?

[AJ]

Sorry I'm in Alberta. I heard about this one from a friend.

[Hope307]

Try calling your local SPCA. They sometimes have families who will "foster" your pet in a home until you return from hospital. Alternatively your vet should be able to recommend a kennel.

[paul m]

Hello Surviving2015. If she is still around Linda Chamberlain ran a foster care program for pets who's owners were in the hospital for up to three mths with mental health problems. http://www.peopleandpets.ca/index.html (no charge to the pet owner)

If she is no longer operating (she had some physical health issues) you might try calling the Gerstein Centre in Toronto as that is where she got some funding from and they may know of someone who else who does it. http://gersteincentre.org/ Take Care. paul m