Amnesia Support Group

Greetings. I suffer with extensive retrograde amnesia (approx. 15 years)as a result of 2 years of ECT. I can no longer remember most of my education and or my autobiographical memories during this time period. I am really struggling as I feel that I can not tell people and when I do they just do not understand or believe me. I am tired of pretending to know things. Work takes great effort as I am constantly trying to learn everything again. I just need a place where other people can understand what this is like. I am hoping that this can be a place where we can share about what we have found helpful in managing amnesia and just some support from others who can understand the challenges we face.

Hi LadyDanielle,

I'm so glad you joined this forum, from your email it sounds like you are in the right place. I have also suffered from Amnesia which was brought on by trauma I received as a child. So I can definitely empathize with you and frustrations of not having anyone who can really understand what we go through day to day. My greatest challenge is when people asked me about my childhood, or my favorite toy or even something as simple as my favorite childhood memory.. I used to make things up but that was before I was being 'real' with myself. Now I just tell them I would have to think about it and leave it at that. Rarely do I get asked as to why I need to think about it.

You are absolutely right though, work does take a great effort to learn everything all over again. I commend you for having such courage to do so, while many people would just give up.

I hope you will find this group as a source of comfort for whatever you need. We have recently started gearing up this group and I'm excited to be a part of the interaction as the new group leader and here if you need me. Feel free to PM anytime.

Hugs,

LGL

I'm experiencing memory loss and cognitive side effects, confusion, and disorientation caused by ECT which got rid of the depression. I'm thankful for being depression-free and am willing to tolerate the side effects. But it is weird and stirs up my emotions. I also feel a sense of sadness at losing memory of positive experiences and connections, especially those connected to my 4 yr old daughter. Embarrassment too when I can't remember or get confused. Have lost memory of where I keep things at home and how to get some places. Having a hard time reading even though I usually love to read a lot and usually read very well. Doctor said memories should return within about 6 months, but I feel skeptical and am not counting on it. Just grateful that the ECT is at least getting rid of the depression which medications have never helped much.

The memory loss is improving now that I am just doing unilateral ECT treatments once monthly as maintenance treatments. Has anyone else out there been dealing with side effects from ECT. It has helped get rid of the depression, so I am thankful and do not regret opting for ECT, but it can be frustrating at times due to the stigma attached to it and the side effects. Only family and a few friends know about the ECT because there is such a stigma having "shock treatment." I've heard I should read Kitty Dukakis's book about her experiences with ECT being effective but having some memory loss.