Lived Experience Forum

[Magpie2]

Hi, 

While I was in the psych ward again a couple of weeks ago, I shared a room with a lovely woman who I'd previously known through school. She has had a very rough run with anxiety/depression/overwhelming agitation, and has been in hospital for a few months now; I can really relate to her just wanting to feel (even vaguely) normal again. Meds aint helping much and ECT has been recommended to her, which she's (understandably) nervous about. I asked if I might look up/reach out here for experiences. I've seen mixed experiences from a brief search, and I'm nearly maxed out looking that up. 

Can anyone share their experiences, especially what would help make a decision about ECT?

Thanks

[hanami]

Hi @Magpie2 

I used to work with a couple of people at community mental health who had ECT and it helped them immensely. No other treatments were working for them and they were both over 65. That said, there were others I worked with who it was suggested to but they refused as they'd not heard good things or were worried about side effects. It's a big decision for sure. My best friend who has bipolar was offered it but too scared due to the possible side effect of some memory loss. Whatever she decides I feel that you're a great, supportive friend for supporting her in her recovery journey. 

hugs 

hanami 💮

[EternalFlower]

hi @Magpie2 

I'm personally not a supporter of ECT, and I know a few ppl who felt it was administered without full informed consent, namely they weren't well enough to really agree and afterwards the side effects did upset them. 

I was in a psych ward recently with some ppl receiving it, and understand its widely offered across Australia.

I know some people personally who felt they suffered from troubling memory loss. 

I do think it's a serious procedure worth being cautious about, and wish Ur friend a good recovery whatever she chooses.

[Bow]

Hi @Magpie2  so kind of you to offer to do some research for your friend. 

I had ECT treatment some 15 years ago. I spent a lot of time in and out of hospital and the dr thought it was a good option because medication was not helping much. I had 10 sessions and while it and a new combination of medication was helpful in stabilising me (not sure which was more helpful though). I have memory loss from those years and I also believe it has affected me cognitively- I’ve just not been the same. 

But in saying that, I think it’s a really personal and individual decision to be made. One that you need to speak thoroughly with your doctors and family about. 
🎀

[TuxedoCat]

It's so true what @Bow said. These stories can be so useful to hear about potential impacts, but it definitely is such a person decision. So kind of you to help with this research to support your friends decision ❤️ 

Thank you for sharing your story Bow ❤️ 

Big hugs to everyone sharing their stories here,

TuxedoCat

[Snowie]

Hi @Magpie2 

I have had ECT. I had quite a bit of it awhile ago. I was having it once a week before covid hit. I found that it affected my short term memory lots. There are things that are wiped from my memory. When I had it I was mentally very unwell and my psychiatrist thought it would help as well as staying on my medication. Unfortunately it didn't do anything for my long term memory, but I know nothing will help that.

I would have to say that I am not a fan of it. I don't think I would do it again unless my psychiatrist insisted on it. I guess it helped me become a bit more stable but I guess I have to weigh that against my memory loss.

However, this is only my view of it. I think it is something that they need to discuss with their treating team and weigh up the pros and cons of it.

Snowie xoxo

[Eve7]

Hi @Magpie2 

I have had a lot of ECT over the years with varying success. There has been some memory loss but probably no cognitive loss. I still remember the things I’d prefer to forget such as trauma and I forget people’s names and where I put the keys. 

I’ve had it both unilaterally and bilaterally with similar results

When I first had it I was terrified but the staff have always been lovely and supportive. Without going into too much detail I was very unwell whenever I’ve had ECT and it’s probably helped keep me alive.

I’ve had it as an inpatient 3 times a week and once a week on maintenance as an outpatient. I probably had it 50 times all up in this last MH episode so I don’t know if that would be considered a success but I’ve known people to improve after just 3 treatments.

It’s worth discussing and researching so that an informed decision can be made.

[Devine]

I have had many ECTs over the last 40 years. I have serious depression and other psych probs. When medication would fail the psychs always suggested ECT. For me it didn't really work and they lied, it can affect your memory. It affected my long term memory and my nuerologist I see blames my short term memory problems on damage caused in the past by ECTs. I've had over 30 of them. I've met people over the years who swear by ECT and have maintenance treatments and they are doing great. Like with medication, what works for some won't work for others. Good luck to your friend. 

[Magpie2]

Thank you very much for sharing your experiences, I have sent them to her. I hope they help her find a decision she is comfortable with. I hope this helps her find hope again ❤️ It's so unfair that people are so isolated in this decision. I know the doctors and nurses are supportive and mean well, but their professionalism creates duties and a boundary from the human-ness of this. Most of them do really give of their humanity too, but it's hard to feel right about with the human/professional// human/medical divisions. 

[confused_nomad]

I have't actually had ECT but I was about to have it a few weeks ago until the hospital changed their mind and discharged me when I was in no way ready.

But one of my best friends has had quite a lot of ECT and it has seriously saved her life. There's no actual convulsion involved because they give you muscle relaxants. With my friend all that happened when she was having the treatment was her fingers twitched a little bit. She sometimes wakes up with a bit of a headache and her short term memory isn't great (but she's had A LOT of ECT) but in terms of treating her depression it's been the best thing she could ever have done. I was actually really up for trying it for that reason.