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The ECT Experience…

with 3 comments

Whilst I was having ECT I never really wrote about it. I was in hospital with only mobile access to the Internet. I was exhausted, often in pain and not really in the mood for writing. Recently though I’ve been inspired by this blog and Seaneen’s appeal for ECT info to document my experience. I’m worried that if I don’t do it now, I’ll forget what happened all together.

Ultimately my experience with ECT was a failure. I had 11 treatments, some unilateral and some bilateral. I barely responded at all and in the end we gave up.

ECT was seen as the last resort. I was about as severely depressed as you can get and no one knew what else to do. I wasn’t sure about having it, but at the time I wrote that anything was worth a try. I think I was so depressed I didn’t really care what happened to me. I know I secretly wished it would go horribly wrong, so overwhelming were the thoughts about death.

I went into the treatment with a smidgen of hope as at least we were trying something. I felt little, but I knew my family wanted it to work. We had to believe it would work, as the alternative was too horrible to comprehend. Other patients at The Priory had been through ECT and come out the other end much improved. ECT had been lifesaving for them and I hoped it would be the same for me.

The procedure was a lot less scary than I had feared. We were woken early by the nurses, our blood pressure and temperature taken, then we were bundled into a taxi with the nurses over to Cheadle Royal. The Priory doesn’t have an ECT suite any more, so treatments were taken there.

There was a waiting room, where we’d sit waiting our turn. There was usually three or four of us being treated at the same time. Three from The Priory and a day patient from elsewhere. Eventually we’d be called into a prep room, where a girl would wash our forehead and neck and attach EEG stickers. Next we entered the treatment room. We’d climb onto a bed and Dr Shock would ask us how we felt. We would be attached to the monitors and then the anaesthetist would take my hand and try to insert a cannula.  This was where it got difficult to me. My veins are small and deep and finding one proved near impossible at times. Multiple attempts, hands like colanders and a number of bent needles later and we would be ready to go. After a few treatments like this, the anaesthetist ordered some microwave lavender bags, which I’d be given to warm my hands. ECT quickly became associated with the smell of lavender.

I’d never had a general anaesthetic before my first treatment and I didn’t know how I’d feel. I soon got used to the feeling. Twice a week for nearly 6 weeks, you have little choice. The liquid would ooze into my veins. I could feel the cold liquid flowing in my hand and then I’d drift off into a blissful sleep. When I was ill I’ve never had any other sleep as nice as that. Next thing I knew I was in the recovery area, oblivious to what went on whilst I was asleep.

Throughout my treatment and since, I’ve always been curious to see what happens in between those moments. I often wondered about asking if I could watch someone else go first, but was certain I’d be turned down. I know they apply a current to my brain and I have a fit, but what does it actually look like? Who does what?

A few times I awoke covered in blood. The cannula would slip out during the fit and I’d be left with a red tshirt. The first time it was a bit of a shock and slightly scary, but once I knew what had happened it was okay.

As we woke up, our vitals were taken regularly. Each of us would have a nurse, who would keep a close eye on us, administering pain relief if required. It was always required. An hour after our treatment we would be allowed up and given tea and toast, or water and toast in my case. Then we were bundled back into the taxi and taken back to the ward, where we usually went straight to bed.

At the time, the side effects weren’t so bad. I usually had a thumping headache, more so after the bilateral treatments. Sometimes I would ache all over. My jaw was often painful. My appetite was normally dodgy and I felt queasy from the anaesthetic. My memory seemed to be pretty much in tact. I’d written all my passwords and things down before I went, but I don’t think I ever needed to refer back.

I didn’t really mind the treatments, but I was frustrated at the lack of response. The night before each treatment we’d be given the BDI and would tick the boxes and I couldn’t see any improvement. I know my scores did improve a little, but one or two points is nothing when it is scored out of 60-something and the miracle I was hoping for never materialised. There were a couple of days after one of the early sessions where I became quite hyper and agitated for a short while, but that didn’t last either and could have been down to something else.

One of the others having ECT with me improved fairly rapidly, which was great news for her, but I remember feeling a little jealous. She was discharged from hospital before I’d even finished the treatment, although I think she had a couple of sessions whilst she was an outpatient. The other person improved gradually, but she did improve. She would have a boost for the first day or two after the treatment and the improvement would ebb away, but over time it seemed to ebb away a little slower. ECT definitely helped her to get better, although I don’t know how she is these days. I seemed to stay the same regardless. ECT wasn’t working for me.

Dr Shock would ask me each time how I felt and I never knew what to say. She would tell me I looked brighter, but it felt like she was only saying that to convince herself it was doing some good, not because she really believed it.

Towards the end, I knew we were running out of steam. I could see the medics were giving up. When the decision was finally made I wasn’t surprised but I was disappointed. I felt like a failure and I felt annoyed that it hadn’t worked. It was meant to be the cure and it failed. I felt like I should have tried harder to make it work. I worried it was my fault and that everyone thought it was my fault and that I just didn’t want to get better.

There is something to be said for it. It may not have actually lifted me out of my depression, but I think it did help keep me safe whilst I was at my worst. I suspect my insurance wouldn’t have renewed the funding if I didn’t need to be kept in hospital to have the ECT and at least whilst I was having the treatment I was often too exhausted and unwell to act upon the suicidal thoughts that were so strong at the time. Maybe if I wasn’t being told to wait and see if it worked, then perhaps I’d have been more determined to kill myself. I don’t know. I guess you never can know. Maybe I’d have been even worse if I hadn’t have had it, although I don’t know how much lower I could have got.

After the failure, came the assessment from Dr P and the diagnosis of Bipolar II Disorder. It was suggested that my lack of response to “traditional methods of treating depression”, showed that I wasn’t suffering from “straight” depression. I had suspected that for a long while before, but I don’t know why it took ECT to decide this as I know ECT can be used to treat Bipolar Disorder too. I am grateful for the ECT for accelerating this diagnosis, but it seems an awful lot to go through just to get another assessment.

The long term effects of ECT have only been showing themselves over the last few months. I didn’t think the memory loss was significant, but as you go through life there are reminders of what is missing. People mention things that happened and I have no recollection of them at all. Silly things like ordering a meal in a restaurant commenting that “I’ve not had this before”, only to be told that I did back in April when I went there with my parents. Not only had I forgotten my order, but I’d forgotten I’d even been there with my parents.

It’s not just from the treatment period either, but before too. A lot of last year has disappeared and I only have my blog and my family’s memories to remind me. Distant memories that were once clear are now fuzzy or gone completely. I have lost a lot more than I’d realised at first. They say that the memories will come back with time, but I seem to be forgetting more, not less. I don’t know if it’s just because as time goes on I find out about more of what is missing.

I don’t think my short term memory is that bad. I am forgetful, but I’ve always been a little. For most people it is the short term memory that is worst, but I seem to have got off fairly lightly on that front. I guess this is something.

I’ve alluded to this at other times, but I think ECT has had an effect on my thinking ability too. It’s hard to know for certain, as depression can stunt your cognitive abilities too, but I am not as sharp as I used to be. My partner often says that I’m slow. I am not very quick on the uptake at times. I find it harder to think and harder to solve problems. My arithmetic seems worse than before.My concentration is poor. Even when I’ve been a little high, I don’t feel as capable as I did before. Things I used to find easy can be a challenge. I feel like I’m a little blunted. I pride myself on my intelligence, yet I don’t feel as bright. I wonder if I’ll ever regain what I used to have and if this will improve.

Along with the memory and cognitive effects, there is a physical side effect. The right-hand side of my jaw has been problematic ever since. It locks and it grinds. Sometimes I can’t open my mouth at all. Other times I get shooting pain right through the side of my head, where my jaw is stuck or out of place. I don’t know if there is a solution, but I suspect I will be stuck with this for ever now. It may not be anything major, but it can hurt and is annoying.

I don’t think I’d mind these effects at all if ECT had worked. If I was now stable and free of depression these issues would be worth it. It’s just that for it all to be in vain, it seems a lot to go through for no gain.

I am still disappointed. ECT had been that final resort and was something I could hold in my mind as a possibility for change. For me, I always need to know that there is another option and this was just another one that we have exhausted. When I have run out of options then I will really give up. I don’t think I’d go through it again, even though for some it can work a second time when it had not the first.

All that said, even though ECT didn’t work for me, I still wouldn’t discourage people from trying it. You have to weigh up the potential benefit with the possible effects, but if it works, I think it is worth it. It is usually only used when all else has failed and in that case what else do you have to lose? I have seen it work for others, I am just jealous it didn’t for me.

3 Responses

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  1. I really appreciate your honest account of how ECT was for you and how it’s affected you. ECT is something that we have talked about in our Psychology class and you are someone who has been in my thoughts when it’s been mentioned because you’re the only person who I know that has been through it. I often wonder how it was for you and if there were any lasting effects and reading this tells me. Thanks for sharing your story, it’s helpful for someone like me who’s studying now what I am.

    (((hugs))) x

    Alison

    Tuesday, 17th November 2009 at 6:53 pm

    • Thanks hun.

      I’m glad you find it helpful. If you think people would find it interesting or helpful you can share this with your class.

      xx

      intothesystem

      Tuesday, 17th November 2009 at 7:01 pm

  2. I know a few bipolar peeps who had ect for depression successfully, so your doc is talking shite there. I’m sad it didn’t work for you though.

    btw, re your socialworker in the other post, can you confront her and ask her to stop pushing cbt at you?

    actionreplay

    Wednesday, 18th November 2009 at 11:43 pm


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