ECT for severe depression

[NanaNina]

Can I ask if anyone has had ECT or knows of someone who has had this treatment. My depression has taken an absolute nose dive this year and my psychiatrist wants me to have ECT as none of the meds are making much difference. However I am scared of side effects, especially memory loss but she says that this is only short term, but I've read on the MIND website that in a minority of cases it can be permanent. MY CPN says in 33 years she has never known anyone suffer permanent memory loss but I am still worried.

Nana, I had the maximum course in the early eighties, which then was twice a week for six weeks. I have no hesitation in saying that it saved my life. I had no side effects whatever.

Thank you moggiek - much appreciated.

Thank you for your PM PD also much appreciated.

Update: I've wimped out of ECT - been googling (too much) and got myself in a state of high anxiety about memory loss, which can apparently be retrograde (loss of memory of past events) or anterograde (loss of short term memory) and it's the latter that has freaked me out.

I've spoken with my psychiatrist today as I was due to start ECT tomorrow. She was disappointed but said it was my choice. I'm going to try lithium (a mood stabiliser) though it can apparently take weeks (or months to know if it will be of benefit) but she's not giving up on me (Psych I mean) she is phoning me again towards end of week to see if I definitely don't want to go ahead with ECT. I wish I had the courage because I know the success rate is high, but I'm so scared of short term memory loss, which I know is almost always temporary, but in some cases can be permanent.

My CPN is off this week and she will be disappointed too and I feel a failure - feel I am letting people down..........not rational I know.

Oh good luck with the lithium, I took it for quite a while, it made me feel very flat tbh. Make sure you are aware of symptoms of toxicity and be aware of which medications you should avoid (ibruprofen from what I remember should be avoided as it increases the level in the blood) You will get a card that you should carry with you and you'll need regular blood tests.Hope you feel some improvement soon.

I'm really sorry to hear that Nina, but it's you that has to go through it, not anyone else. I hope the medication works for you.

You DID not 'wimp out' - you made a decision, and not an easy one

Lots of pros and cons to whatever you do - lets face it, apart from being miserable, depression can be a serious illness and affect health in many ways. Depression can affect memory, concentration, the ability to enjoy things etc etc - I'm sure you know all that better than I.
ALL effective treatments with a positive, and therefore wanted effect, also have unwanted effects.
At this moment in time you have opted to try another medication with all that entails and have decided against ECT. That is a perfectly valid choice to make. So stop beating yourself up right now

Keep talking to your psychiatrist, give the Lithium a chance to work - and if you change your mind about ECT in the future, I am sure that option is not closed to you.

You're not a wimp. You had to make a tricky decicion, one that caused you a lot of worry. I hope the lithium helps x

Thanks everyone. I've been so flat and miserable all day and not much better this evening, I'm wondering if I've done the right thing. I think the biggest problem I have is that the psych is just blanking anything about adverse side effects. I checked with the friend who went with me to the appointment last week to see if this was her impression and she agreed. I know medics don't like talking about side effects in case people imagine they have them, but they're all on the labels inside the boxes anyway, but if you get bad side effects with a drug you can stop taking it, but once your brain has been zapped, it can't be changed back.

I think I might ask the psych for another appointment and say that I feel she is not really taking on board my concerns about memory loss and whilst I know she can't give me guarantees, I need more information about the risks, so that I can make a more informed decision. Poor DP - I have gone on and on about it all today - he's very patient but I think he's had enough of me agonising. I've had enough of me agonising!

Will keep you posted.

Since doing some Googling of my own, I note that the US and the UK (don't know about other countries) are said to use different types of ECT. The US apparently uses sine wave ECT which hasn't been used here for about 3 decades, and which is associated with more memory loss.

The studies seem to say that memory loss is definitely experienced in the first two weeks after ECT but this usually improves after that time.

I totally agree with you that not discussing side effects is not very helpful.

Thanks Anna. I'm in a state of high anxiety and feel worse than I've felt for a long time, agonising if I've made the right decision. I was googling till the early hours and most of the sites do seem be American. Can you tell me what studies you have been looking at.

I've seen the MIND website and Royal College of Psychiatrists (which says the incidence of severe side effects is low at 1 in 10, which I think is quite high. When I mentioned this to the psych she didn't respond. Am thinking of writing to her with my concerns and asking for an appointment to discuss the risks, rather than just glossing over them. She's very nice and I know she will give me an appointment - I know there are no guarantees but I can't make an informed decisions without some discussion of the risks. I am less concerned about retrograde memory loss, but am really worried about anterograde memory loss.

Do you know why the US still use sine wave ECT (I've seen it mentioned) as they are usually ahead of us in most things.

Thanks again.

Oh poor NanaNina, I can feel your frustration!
But I also think you are going round in circles and are exhausting yourself pondering the unknowable.
I think it's great that you can speak to your consultant and get all the information about possible SE that you are keen to have (and I agree about minimising; although I also think that a lot of catastrophising goes on in the interest of 'covering ones back' ).

Find a way to stop covering the same ground.
Make a decision when you are ready for it (ECT - no ECT; try new drug or don't) and then stick with it for a while.

Fwiw, I have experience of antegrade amnesia following a traumatic head injury - I was unconscious for 24 hrs, then awake but 'lost' another 24 hrs in which I was awake and according to others behaved my usual self, but have absolutely no memory of that period of time. I seem to be fine since then and am not aware of any longterm sequelae.
Obviously traumatic HI is quite different from the electronic disruption caused by ECT, but they are similar in many respects. The most serious longterm effects from HI come from 'axonal injury', often with normal looking scans etc, so no structural damage that is visible.

Whether or not to make that leap of faith and go for ECT with all the risks and unanswerable questions is entirely your choice and IMO dependent on how bad you are feeling currently: decide when the potential risks become the 'lesser evil' and then go for it. Or don't, but stop going round in circles; it's exhausting and leads nowhere [thank]

Oh, and sorry, no idea about sine waves

If you haven't tried lithium before, it might be worth a shot? It worked wonders for my dp, who has bipolar. But it also has known side effects, aiui, and careful monitoring is needed. (he is off it now, in recovery, btw) I should imagine you've tried practically everything else

Sorry to here things worsened this year, I've not been around the MH board much recently.

Thanks PD and SPC - You are right PD about going round in circles and exhausting myself and causing sky high anxiety. However I have made the decision not to go ahead. I was googling again earlier today and found something from the Royal College of Psychiatrists "Memory and cognitive effects of ECT: informing and assessing patients" which really made my mind up. There was a section "What Patients Should be Told" and it was very clear that patients should be warned about the possibility of permanent memory loss, both long term and short term, and sometimes both together. The article was very clear - "no consent should be signed until ALL of the possible side effects have been clearly explained" and "alarmingly some 50% of patients report that possible side effects were not discussed with them...." and recommending that issues around consent need to be revised.

It said much more about the need for patients to be fully informed of the possible risks especially in relation to memory loss, and explained why the surveys for clinical and patient memory loss following ECT were so different. Much higher (up to 50%) in patient surveys. I was really upset and annoyed at reading all this, as my psychiatrist initially told me "there was no evidence of memory loss" and on my 2nd appointment she was not willing to discuss any risks of memory loss, though gave me a doc from RCofP. When I spoke to her yesterday I said I was not going ahead because of my concern about memory loss and she said "I thought we'd discussed all that last week....." My friend was with me and she has no recollection of this discussion either!

Anyway after reading all this stuff today I printed it off, highlighting all the issues and wrote a covering letter saying that I was not going ahead and was concerned that the guidelines had not been followed in my case as I should have been given full information as outlined in the doc I attached.

I'm relieved I've made a decision but also angry that she just ignored the advice from the Royal College of Psychiatrists, and had I not had the sense to research myself, I would have had no idea of the risks. Also I had allowed myself to have a tiny hope that I might get my life back, and now that hope has been dashed. I did say in my letter that I was aware of the lack of research on cognitive impairment following ECT and that I knew she was endeavouring to act in my best interests but I felt that I should have had the information outlined in the doc in order that I could make an informed decision. I confirmed I wanted to try lithium. She is leaving the Trust at the end of this month. My CPN is away this week and she won't be pleased, but what the hell, it's my brain isn't it.........

Thanks again - nice to see you silvery and to know you're well - assume you finally moved house? I know lithium is very effective in bipolar but apparently there is evidence that it can be effective in unipolar. Worth a try anyway.

DP was deeply depressed when put on lithium. Which is kind of a hopeful thing to write!

Downsized to my nice cottage, and am enjoying spending some of the proceeds left over on carpets and furniture :).

I hope the lithium helps you. Sometimes trying a completely different type of meds can make a big difference.

Do any antidepressants help you? I'm bipolar and all the ADs I tried made made things worse until I tried Agomelatine. It's a completely different type of AD that works via melatonin. It was a miracle worker for me. Ive had no side effects at all (& I usually get every side effect going).

I know it's expensive and there have been dubious results in clinical trials. (You also need occasional liver function tests.) However, I've heard anecdotally of many people who have been really helped by it.

It seems to be a med that either works amazingly well or not at all. Just thought I'd mention it.

annandale, just wanted to say that I experienced no memory loss whatever after each of my 12 treatments.

Nana, if you've not tried lithium, you might as well give it a go first - there's good medical evidence to show it helps with severe resistant depression. I'm about to start it in ten days time- though the psychiatrist has told me that it's not quick fix: he's talking about up to two years...

I've actually begged for ECT, because I've seen and heard such good results with it, but in my healthcare area, it's an absolutely last resort, after everything else has been tried: and without lithium, I'm not quite there yet :-D

Still, you need to do what you're comfortable with, and what you can accept. The issues about memory loss did bother me (I'ma university lecturer, and it would be inconvenient...) but the studies of UK patients I read left me feeling comfortable that that would be a minimal risk. Now I am hoping that lithium is the magic wand - though I'm not looking forward to having to give up coffee (I read that you just need to be consistent in your intake, but my psychiatrist is adamant!) and weight problems. But I'd give anything to feel better, even being a size 98...

Good Luck!

Thanks Hefzi the psychiatrist who recommended ECT is leaving the Trust at the end of the month and my CPN did say that whoever replaced her might not agree........so difficult to know what to do. But for the time being I will try lithium - but 2 years.........dear god.

Are you still able to work at such a responsible job? I'm going downhill fast and this summer I've been rock bottom and can barely get out of bed to shower some days. Can you tell me which studies of UK patients that you read. I've looked up everything about lithium and not seen anything about not drinking coffee! I know you need to keep well hydrated. It's the hand tremor that I don't like the sound of , but I'm getting desperate. If the lithium doesn't work in a few months and ECT is still on offer I might well risk it.

I think you are also not supposed to eat bananas - too much ?potassium or something.

Hello Nana - given the choice I'd take ECT over lithium every time, even though the lithium did work for me. (It stabilized me a little high, which was nice. My daughter was on it for a while and it just made everything dull and grey for her.)
The regime is a bit of a nuisance as well. However no-one said anything about coffee or bananas. You have to be reasonably careful about fluid levels.

I'm pretty certain my hypothyroidism was lithium induced as well.

Did you actually have ECT born and if so was it successful - did you have any memory loss. Oh god "dull and grey" - that's what my life feels like now. Can you say how long the lithium took to make a difference. The psychiatrist is saying weeks, if not months and only starting me on a very small dose 20mg. Did you have the lithium for bipolar or unipolar depression, sorry for so many questions.

So sorry to add to your dilemma. It's difficult to make these important decisions even when you feel OK so I can only imagine how hard it must be for you right now. I had a shortish course of ECT (3? or 4?) when in a very pronounced depression after postnatal psychosis. (I had a history of depression/mood swings). The ECT worked like magic - would have carried on but I felt so much better after the initial few we put it on hold. I had no memory loss, though I did have some short-lived confusion and headaches, generally immediately after the treatment.
I became ill in the same way after my second child but at that point was prescribed lithium as I was "high". It worked within a month and stabilized me so that I was able to get on with my life, raise my children and resume my education. I can't remember the dose I ended up on but they do start low and increase it gradually until it works.
So both ECT and lithium worked for me, but in somewhat different circumstances. ECT cured the depression fast, lithium stabilised mood swings over a longer period. The lithium regime of timing and blood tests is a nuisance but you get used to it. Once again, apologies for what I now realize is not a particularly helpful post.

Forgot to say - so, if I were depressed, I'd go for ECT.

Nana, how are you?

Hello Born thanks for asking about me, and no need to apologise - your post was in no unhelpful. I am a fair bit better today but was in desperate need of respite (however short lived) as Friday was the day from hell and I thought of nothing but suicide all day (very scary) yesterday a bit better. Thing is these good spells (half days usually) never really last. This is the 4th consecutive month of day on day of shite.

My CPN came last week and was lovely as usual. She said she understood my concerns about ECT and said that most people didn't research it and just took the doctor's word for it, but she knew I wasn't that sort of person. I've started lithium 200 mg. so very low dose. It's however so very tempting to go for ECT when I hear accounts like yours "worked liked magic" - but still scared of memory loss (not the retrograde so much but the anterograde, loss of short term memory) and I'm in a high risk group because of being "older" (I'm 71)

Hefzi upthread is starting lithium and her psych has talked about 2 years for it to make any improvement - think I might cave in and go for ECT if I continue to have day on day of really bad days with no respite. The other thing is the psych is leaving at the end of Sept and my CPN has absolutely no idea who will replace her, but will be locums until they can fill the post. I've seen a fair few locums and been very unimpressed, whereas this psych was lovely (except that she didn't tell me about the risks of ECT which I am annoyed about really)

Anyway I've managed to have a nice chat to my DGD today (she's 15) and lives reasonable near but I haven't seen her in about 6 weeks and miss her sooooooo much. Her mom has told her a bit about my depression but she's a bit young to understand (though is very emotionally mature) and of course many young people have mental health issues I understand, and very little support.