ECT

[Em22]

I had ECT, finishing about a year ago, for depressive phase of bipolar II. I had about 34 treatments over 3 months and it didn't work for me. I reckon I have lost about 18 months- 2 years of memory, basically the treatment period and about 18 months retrospective of that. Despite not having a positive outcome, I have no regrets because I know now that it is not a treatment option for me going forwards, and I'm not left wandering 'what if'. ECT works for more people than it doesn't, and for me, potentially losing memories was a small price to pay for some relief of symptoms. 

I had unilateral, bifrontal and bilateral (in that order) and found the bilateral by far the worst in terms of side effects. I think if it had worked and I had stopped after unilateral like many people do, the effects would not have been so severe.

During the treatment, I had real trouble forming new memories. I would forget someone had visited me and have the exact same conversation when they visited me the next day, or read the same chapter of a book every night because I couldn't remember reading it the night before. It was like each treatment (every 2-3 days) kind of reset my short term memory. I can't really remember anything from the treatment, just the odd snippet of memory.

Immediately after the treatment, I found things like unpacking the dishwasher hard because I couldn't remember where things went, or I couldn't remember where friends lived and had to check a map, but those sort of memories returned pretty quickly.

Now that some time has passed, the worst thing is realising I've forgotten a whole holiday, or decisions that I made but don't remember making, or the rationale behind them, or complimenting someone on a bag, only for them to say that I gave it to them a few years ago. It can also be distressing to hear my family/ friends talk about that time and how they coped, because I have no memory of it or anything they were doing to support me. I have also forgotten a lot of the day-to-day memories that aren't important in themselves, but were important in certain relationships. I haven't lost friends over it, but someone times it makes me sad or anxious to know that their perception of the relationship is different to mine. However a positive is I've forgotten a really bad period of my ilness. 

It's kind of like having too much to drink one night and waking up the next morning. You have snippets of memory and sometimes someone filling in a detail can jog a memory, but most of it is gone.

In terms of long term side effects, I don't think I have experienced any. I am pretty sure that my cognitive abilities have completely recovered although it is hard to know for sure. I feel like I am leading a completely normal life now (apart from the bipolar of course), just with some holes in my memory. Another positive outcome of the ECT was that it confirmed my diagnosis to my psychiatrist, and she was able to put me on a drug that has actually worked (for now). 

While the notion of losing memories can be terrifying, I personally found it to be worth the risk for a potential effective treatment.

[getbetter]

hello@em22 thanks very much for your experience, the problem for me is lack of good information and peoples experiences good or bad, you mention you found medication that helps and this seems to be something that occurs in Au, that our psycs go to ECT after patients failing only a few medications, there are many medications and combinations that can be tried, I have tried many and at the moment may have something that is doing ok, the nsw mental health commission has engaged unsw to gather data on ECT use, efficacy , patient survey's and this is desperately needed, a figure often quoted is it is effective in 70% of cases, but what is effective considered to be, I have read studies that say the relapse rate is high 40% at 6 months 50% at one year relapse even with medication, I can not remember the relapse rate with maintenance ect, also there is a new class of antidepressants being fast tracked in the usa based on the effects ketamine has for depression, I am hoping they will work better for me, then there is the inflammation theory of depression which I believe certainly plays a part in my case as I have inflammatory conditions, how would ect address that? we need data on the potential efficacy of ect that considers those conditions.

[TrueColours]

Hi getbetter, depends on your circumstances but I would not consider ECT again unless absolutely necessary. I had intense ect just under 3 years ago now and I still have memory problems. Although I had a complete mental breakdown at the time so the treatment was justified & there was a big improvement in my mood for about 6 weeks following. I had a lot of sessions in a short period of time though which I think was the problem. Due to the memory problems I decided not to continue with the planned "maintenance" sessions.

[MP15295]

Hello @getbetter,
This is my third year of having ECT as a treatment. Funnily enough, I'm in hospital at this very moment, having ECT every second day (I typically have ECT once a month as maintenance).
To be honest, ECT is the reason I'm still alive today. I'm twenty-two years old now, and have been suffering from severe depression and anxiety since I was eleven. I had been prescribed every medication under the sun, I'd seen a psychologist once or twice every week since childhood, nothing made a significant or notable difference. ECT was my last resort...otherwise I have no doubt that I wouldn't be here today. Thank you God for it working; ECT has worked wonders for me, absolute wonders. I haven't felt this happy, energetic, attentive and 'well' since I was young. Of course, there are side effects, including head and muscle pain, as well as memory loss. The memory loss isn't too bad, really. I believe the benefits of the treatment outweigh the risks. There have been times where my family members have brought up events from the past that I can't recall...only on a few occasions however. The only issue is that you can't select which memories you forget. Though again, the memory loss (from my experience anyway) wasn't too horrible. To put it into perspective, I've been attending uni while undergoing treatment, and I can still recall everything I've studied. I'm not sure if you've already gone through with it, but I hope this post helps with your decision somewhat. I also wanted to add that I've heard many others (fellow psychiatric hospital patients) have a positive experience with ECT - I've also heard some (mostly people with bipolar) experience absolutely no benefit or difference at all. To me, I thank God everyday for my decision. ECT has saved my life, and allowed me to experience some quality of life again. It does work, it's not frightening (like it was in the past/1930's, or how horror movies portray it). All you do is lay on a hospital bed, get hooked up to a pulse moniter, blood pressure cuff etc. You're then given some oxygen, put to sleep with anaesthetic...and you wake up in recovery a few minutes later, the procedure over with. I wish you, and anyone else reading this, the absolute best. Good luck!

[MP15295]

To add more information, I only had unilateral ECT. There's no doubt that Bilateral would cause more significant memory loss issues.

[avalynn]

Thank you for sharing your experience with ECT. I'm having my first treatment at the end of this month. I'm at the end of my rope. Being doing trial and error on meds for 24 years and nothing has helped. I do have situaltionl depression and anxiety but also diagnosed with Bipolar 2. Struggling with depression since I can remember. I don't want to live like this anymore. I'm desparete to try anything. I've done my research and willing to put up with some memory loss hoping to have a sense of meaning in life as now I have none. I feel like I'm only here because of my precious dog Luke. What is there to live for? Tired of struggling. No desire or energy to do much of anything. I use to have good days that lasted. What happend to me? 

[Maggie]

Hi @getbetter i have had ECT. I was an involuntary patient and too depressed to be able to make any decisions for myself. It did not work for me and I have not regained the momory loss. I did however see other patients improve dramatically after ECT, so it's an individual thing I guess.