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ECT for severe depression

(53 Posts)
NanaNina Mon 24-Aug-15 14:36:37

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.

ladylinda52 Tue 25-Aug-15 19:07:30

My husband had, I think , 4 or 5 treatments of ECT back in 2005 and a similar number about 18 months later for two severe psychotic episodes which no medication would even touch. I was terrified at the prospect- I think he was too ill to even care, but it was the most wonderful thing and gave me my husband back. He remembers very little about the actual experience of ECT but he had really no side effects and certainly no lasting damage . On the basis of our experiences I would say go for it!

bgottalent Tue 25-Aug-15 19:16:34

I had it many years ago and sorry to say I experienced memory loss and poor concentration that lasted several years. My long term memory is still quite poor. However it certainly lifted my depression so i'm very grateful for that.

borntobequiet Tue 25-Aug-15 19:23:09

I had ECT when suffering from very severe depression associated with postnatal illness - the depression was a side effect of the medication prescribed for the psychosis. It worked like magic. I had three treatments, didn't like the headaches and slight confusion, but woke up one day and it was as though blinds had been lifted and the light was pouring in. Subsequently successfully brought up my children alone, got a degree and have a rewarding career. Hope this helps...

NanaNina Wed 26-Aug-15 14:40:15

Thanks for the replies. LL do you mind my asking if your DH's psychotic episodes were associated with severe depression, or not. It's just I know that there can be a link. Sorry to hear of your experience Bgot - can I ask about your memory loss - was it long term or short term memory or both? Was it like someone with dementia as this is what scares me most? Do you mind saying how long ago, as I keep being told it's "changed so much now......"

borntobequiet did you have post natal psychosis? But so glad to hear of your experience.

I'm still pondering.......but am waiting to see whether a private psychiatrist will see me for an initial consultation for a 2nd opinion and more info on ECT.

bgottalent Wed 26-Aug-15 16:46:31

Nananina I had 2 courses of ECT (I think about 8 sessions total) in late 1960s - so a long time go. At the time of each session i woke up completely disorientated and couldn't remember where I was, who I was etc for about a day plus a thumping headache. Once I'd recovered from each session my short term memory was ok but my long term memory was poor for a long time. I had always had a very good long term memory but it took me several years for it to come back. It was also about 10 years before my concentration recovered enough to read a book.

However ECT enabled me to recover from very severe clinical depression although I was on very heavy duty intravenous medication for many years afterwards as I was diagnosed as schizophrenic and spent time in hospital.
I now have no mental health problems whatsoever but have not disclosed my history to anyone in real life as it's been a taboo subject in the past. Nobody knows except close family and I've since done very well in my career, having obtained an excellent degree and a PhD. I have recently been tempted to write about my experiences and successful recovery because psychiatric illness get such a bad press. I've been happy and mentally well for over 35 years now.

NanaNina Wed 26-Aug-15 17:55:05

Thanks again Bgottalent - sounds like you were anaesthetised then - I didn't think they did in those days and I remember the awful pictures of people jerking about on the bed. They give you a GA now and a muscle relaxant. Interesting that your short term memory was ok and this is what worries me most. I am 71 and my long term memory is pretty crap anyway - can't remember what I did yesterday, but 10 years before you could concentrate to read a book!

I have had 2 IP stays - both time for 3 months. 1st in 1995 following the death of my dearest friend (no previous psychiatric history) and made a complete recovery and stayed on the meds for 15 years - held down a responsible job - no problems - then decided I needed to come off meds and did so very gradually 10 mgs per month - took me 10 months. 4 months later I relapsed and IP again in 2010 for 3 months but have not made a complete recovery - far from it really - this year has been the worst so far, with only 2 good months - am in a bad state just now and have been all summer - hence ECT suggestion. There are no triggers for the fluctuations.

Do you think that schizophrenia was a correct diagnosis?

My family and close friends know my situation and I don't mind who knows to be honest although I hate the stigma that still exists around mental illness in spite of the leading MH charities like MIND and SANE doing all they can to increase understanding and awareness. Makes it SO much harder to cope with.....and I know people can't understand the torment of severe depression, but that makes it so difficult too.

So yes I'd say write about it - were you thinking of a book/article - I think really it's up to people like us to try to reduce the stigma. And so glad you have done so well and enjoy good mental health.

SealSong Wed 26-Aug-15 18:05:48

NanaNina, sorry to barge in on your thread but just wanted to say I am sorry to hear you're going through this, I've seen you post on many threads offering great support and advice. Wishing you strength and health.

bgottalent Wed 26-Aug-15 20:12:12

mit was in 1968/9 and yes. I had GA
.I'm sorry you've had such a difficult time. I was in hospital for nearly 3years. It doesn't happen any more and I'm very lucky not to have been completely institutionalised.

if I ever wrote an article it would ha e to be under an assumed name as I am still very wary of being labelled especially as Im still working-just.

ladylinda52 Wed 26-Aug-15 21:50:52

Yes, nana, it was related to severe depression which no amount of medication could shift. He is still, ten years later, on a maintenance dosage of Venlafaxine, but gas no further problems. I have read your wise advice to so many on these threads, and wish you well in your struggle against this , the most lonely illness there is!

nooddsocksforme Wed 26-Aug-15 21:58:08

ECT is a more effective treatment than antidepressants and acts more quickly, esp in severe depression. The issue about memory loss following treatment is hard to research and some patients do complain of long term problems, but the evidence is mixed. There is probably a risk of what is called autobiographical memory loss , which is losing the memories of some memories of your life like maybe family events etc, and this may be permanent according to some studies Confusion after ECT and short term memory loss seems to be more short lived. ECT wont cause dementia which is a distinct disease process affecting the brain . www.sean.org.uk/Public.html -this is a link to the scottish ECT network

bgottalent Wed 26-Aug-15 22:49:36

nooddsocksforme - yes my memory loss is best described as autobiographical memory loss

borntobequiet Thu 27-Aug-15 08:51:14

Hello Nana - yes I had post natal psychosis, but I had a previous history of mood swings (both up and down) with very pronounced depressions. (With hindsight, it's pretty clear that my problems were greatly exacerbated by hormonal changes to do with my menstrual cycle.) I became ill in almost exactly the same way after having my second child, but was lucky enough to be looked after by a maverick GP who diagnosed me as manic depressive and put me on lithium. The lithium helped stabilize me for a few years until I felt I didn't need it any more so came off it. I was then better able to manage my mood swings when they occurred - terrible terrible PMT/PMDD, but the Pill helped, and, more recently, HRT. I believe many female MH conditions would be better treated initially with hormone therapy (oestrogen) rather than psychiatric medications.
But, the ECT was wonderful and pulled me out of the worst pit of depression I had ever encountered. I should say that it was prescribed when I had a fit induced by the antidepressant I was on, and felt somewhat better after the fit.

UnbelievableBollocks Thu 27-Aug-15 17:56:33

Hi NN. Last time I was an inpatient there were two ladies who had ECT after months of awful depression. The change in them was astounding in a positive way.
Both ladies had resisted for a long time for obvious reasons - the thought of it is quite daunting, though both later declared they wished they'd had it earlier.

Everyone is different and I don't have personal experience to offer, but it's something I'd definitely consider if I became really ill again.

NanaNina Thu 27-Aug-15 21:00:55

Thank you all SO much, and thank you for your kind words LadyLinda and sealsong- so nice to get this kind of affirmation when I'm feeling like a worthless waste of space. Your link was really helpful nooddsocks and was much more positive about ECT than I had read on the MIND website and the NICE guidelines, although I can't help wondering why they are different, which makes it more confusing. Are you a medic by any chance? Thanks UB for what you observed in others having ECT.

Well I've made the decision and am seeing the psychiatrist next week and hope to begin ECT the following week. My CPN phoned this morning and told me the psychiatrist is leaving at the end of September - this was a nasty shock as she is SO much better than all the male psychiatrists I've seen in the past. CPN said I should get going with it while the present psych is there as the next one might not agree to it.

Any more positive accounts would be most welcome!
And thank you all again for such helpful posts.

PacificDogwood Thu 27-Aug-15 21:06:48

NanaNina, so sorry to read you are not well thanks

Just offering a hand to hold and my (limited) professional experience of patients I know who had ECT: In 22 years I've not come across anybody with permanent memory loss/dementia like cognitive problems. People I've spoke to describe various degrees of confusion or disorientation on waking, but without exception made a recovery from the severe depression which had been treatment resistant before ECT was offered.

I can only imagine how scary the prospect must be, but it is true that the actual administration of ECT has changed beyond all recognition and is NOTHING like what it sometimes depicted in movies etc.

I wish you well and hope you recover very soon x.

insanityscatching Thu 27-Aug-15 21:19:43

I had ECT 20 years ago now for severe PND. I was very ill and so my memories of that time aren't great anyway but I know I had 12 sessions. I have memory loss of about a fortnight I'm pretty certain that it's a fortnight because of the date of my admission to hospital and the Dunblane tragedy. It didn't work for me but I remember a lady who was treated at the same time being transformed really quickly.
I was sectioned after 8 sessions and I think it was the enforced rest and tweaking of medication that finally worked. I had been taking above the recommended maximum doses of anti depressants, anti psychotics, lithium, tranquilisers and side effect medication for months (apparently I was taking enough to knock out a horse but still didn't sleep. Psych said I have a super efficient liver) before ECT was seen as a last resort.
I don't regret agreeing to try it and if needs be I'd probably agree again as I only had a slight headache afterwards. As it is I fully recovered and against all predictions I have been medication free for many years and I even had another child without any PND.
I really wish you all the very best and hope the ECT is effective and swiftly. Take care.

annandale Thu 27-Aug-15 21:30:38

My husband has schizoaffective disorder and last year had a very bad episode of depression, the worst he'd had for some time. It just wasn't lifting despite changes to his usual hefty load of medication. He had four ECT treatments. Since then he has been overall better than at almost any time since I've known him - he remains chronically ill, but is able to do quite a bit more. The experience of ECT itself he did not enjoy of course, which is why he only had four sessions - his psychiatrist would have liked him to have six. He doesn't remember much about the sessions themselves or the days when he had it, which he did find disconcerting, but otherwise hasn't noticed any memory loss and in fact is better able to concentrate because he is less anxious and depressed.

I am sorry to hear that you're going through this. I have always found your posts extremely interesting and energising because of the wide experience of life you have and your ability to write well. I really hope the treatment helps you and you can move on to a better phase in your life.

nooddsocksforme Thu 27-Aug-15 21:38:32

Hi Nice didnt have much input from psychiatry when it originally wrote ite guidelines and the royal college of psychiatrists disagreed with some of their conclusions. ECT can be regarded in a negative way on the internet but I can honestly say if I ever had severe depression I would ask to have ECT. I have seen it save peoples lives many times

NotAJammyDodger Thu 27-Aug-15 22:07:49

Hi Nana. just wanted to wish you the very best if you do go ahead. I know you have been struggling for decades so I truly hope ECT anialiates your depression.

NanaNina Tue 01-Sep-15 14:52:42

Thank you again for all the replies and the kind words about my posts on the MH thread. I'm having a big wobble about ECT and have been googling so much about memory loss but am no further forward. I seem to be caught between the info on MIND and more "scholarly" articles on research which I find too complicated to understand. That link nood was very helpful but I'm going round in circles, wondering what it would feel like to have no memory as far back as 6 months before ECT but what scares me more is the short term memory loss, and I read somewhere about "inability to learn new skills" - I'm just so scared.

I have to see the psychiatrist on Thursday and I'm taking a friend with me who is very assertive when necessary as I want to know why the psych told me quite categorically that there was no evidence to suggest any memory loss. I feel really annoyed with her about this and it doesn't give me much faith in her really.

Pacific can you tell me a bit more about your "limited" professional experience please.

Thanks again.

insanityscatching Tue 01-Sep-15 16:18:36

Nana I can reassure you that for me I didn't lose any skills and have learnt many new ones in the last 20 years. I have no short term memory difficulties although I do have a fortnight missing as I posted upthread. I spoke with psych about it and he said it could have been the ECT but equally I was so ill it could just have been because of that.
Have you tried the whole gamut of medication? I had many different combinations of many different drugs before ECT was considered (at least seven anti depressants, lithium added, tranquilisers (two), anti psychotics (three different ones) above maximum recommended dose (pharmacist had to phone psych every prescription and psych had to inform manufacturers) I'd say that if you are unsure then the psych should be exploring medication options.

nooddsocksforme Tue 01-Sep-15 19:53:30

I think the short term memory loss is more short lived and you wont lose your memory for the 6 months before treatment-its more likely to be patchy loss for some events. The research on memory impairment is contradictory so dont be too hard on your psychiatrist -its not at all clear cut. there are no memory tests available that can pick up the kind of subtle changes that happen which makes researching it very difficult and so different psychiatrists might have different views. Depression itself can cause problems with memory. www.rcpsych.ac.uk/healthadvice/treatmentswellbeing/ect.aspx

annandale Wed 02-Sep-15 00:36:53

Since the ECT has helped his depression and anxiety DH has been much more able to learn, he is starting a new course this week smile

You must be suffering so much if ECT is being recommended. I really hope you find that you are able to trust your team enough to give it a good go.

NanaNina Wed 02-Sep-15 15:04:45

nood thank you so much for your post and I think you've hit the nail on the head about the research being contradictory and inconclusive. I've read so much and so many different lists of side effects that I'm completely bamboozled. I am also picking up that there seems to be a difference between what patients report about memory loss and clinical surveys (presumably psycho-metric testing) or something similar. I absolutely understand that the changes after ECT can be subtle and so can't be picked up - because of course it's to do with the brain and there is so much unknown about how it functions and malfunctions.

I keep trying to imagine what memory loss will be like and getting myself in a state of high anxiety about it......I have my apt with psych tomorrow and expect to start treatment next Tuesday.

Yes Annandale I am suffering - and that's why ECT is being recommended. I used to have about 25 good days a month which was manageable but this year I've taken a nose dive and only had 2 good months, the rest I've been lucky to get a third of the month good, and this summer has been awful with day on day depression, with an odd good day here and there. I do pick up through the day though and get better in the evening.

I think the fear of memory loss is overwhelming me and I will probably be worse as the time gets nearer.

I don't usually post about myself and have been SO surprised by posters saying nice things about me and wishing me well.

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