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    ECT Side effect

    Hi everyone. I’m new here and still trying to figure out how the forum works. Just wondering if any of you have received ECT treatment for major depressive disorder? I’ve been getting ECT for a very long time but have no idea for how long thanks to the memory deficit. One of the side effects of ECT is short term memory loss. My psychiatrist who ordered the ECTs to begin with said my memory would return within 6 months after treatments. I was never taken off ECT completely, I was put on maintenance treatments of once monthly. I had severe long term memory loss and problems with my short term memory. I was told once I was switched to maintenance ECTs my memory would come back within 6 months.

    While on maintenance treatments I had no recollection of major life events. For example I knew I had been married but had no recollection of my wedding day. I had 2 kids but no recollection of my sons birth or the very special day of bringing him home from hospital. My daughter was adopted but I don’t recall anything of the very special day when she became a member of our household. She came to us when she was 18 months old. I have a vague recollection of a burgundy velvet dress. I remember the name of the elementary school they went to but no recollection of special events their. I don’t remember them coming home from school with their friends or how they both did in elementary school. I know they both went to high school but again I don’t recall special events or parent teacher interviews so I have no idea how they did. I don’t recall anniversaries, birthdays or Christmases. I was continually reassured that these special and important memories would come back within 6 months while just on maintenance doses. At some point in my life I took my GED so I could enroll in college and university. I eventually graduated from university with a BSN in nursing. I have no memories of this special time in my life. I know I worked full-time at the hospital here, first as a gyne nurse, then a Cardiac Nurse then an ICU nurse and finally a Community Care nurse. Oh I forgot, I was also employed at the University as an RN instructor. The occasional memory will pop into my head but then it’s gone. I do remember that I loved nursing, loved students and loved taking courses. I’ve lost most of those memories!! But again, told they’d come back.

    I’m told I stopped the maintenance ECT on my own. Have no idea why unless it was due to the memory loss. I bought a day planner and started writing everything down, important appointments, birthdays and other important events. My severe Major Depressive disorder became worse since stopping the ECTs recently and I ended up back in hospital. I was there for 2 months! I received 12 ECT treatments only because my depression and anxiety were so bad and resistant to medications alone. My memories got worse if that’s possible. I kept mentioning the severity of the memory loss and she said, oh everyone gets that. It’ll come back in 6 months. She wasn’t concerned about it at all. The day of discharge my depression was much better, I actually felt somewhat happy and eager to get home. My daughter had come to visit me everyday even when she was working. She helped to keep me grounded and was very much aware of my memory loss. My Dr. was giving me discharge instructions, explaining the new meds I had been started on in hospital and then she mentioned maintenance ECTs! I refused them because of the further memory loss. She told me I was risking the major depression coming back and reminded me that last time I did that I ended up right back in the hospital. Well I felt good and I was on new meds which I hoped would work. She understood my concern for further memory loss but kept saying it would come back. I reminded her that my memories that I had lost so far had never come back! I felt like I didn’t exist! No childhood memories, no memories of caring for my mother when she was dying of lung cancer. I was told I cared for her. Vague memories of my nursing career. She agreed to discharge me with no maintenance ECTs saying I could always change my mind.

    So right now I’m struggling again. It’s been about 3 months since my discharge and my own psychiatrist has had to change my meds again. I think I’ve been on just about all of them. He keeps trying to talk me into maintenance ECTs again. I keep refusing. I can’t get the doctors to understand the seriousness of the memory loss! My case manager says that’s unfortunate but it’ll come back. Well no they won’t!! Before this latest admission I had waited months, probably yrs for my memories to return. I know I’m divorced but have no idea what happened! I still love my husband! All he’ll tell me is that it had nothing to do with love but that we could no longer be married. I’m afraid to ask why so just try to accept it. We are still very close and he’s very supportive of me and my decisions. How could I not remember why I got divorced. There will never be anybody else for me. I still love him very much. We were going to grow old together. So here I sit. I’ve been up since 11:30 the night before, unable to sleep, major depression again. New meds not working but still refusing ECTS. I’m worried they can have me committed to hospital for treatments.

    Have any of you experienced similar outcomes? Has ECT ruined your memories? I’m on Effexor for depression and Olanzapine for sleep and Ativan for anxiety which isn’t working. Am also having major hallucinations due to a recent decrease in my Effexor and the minimal Amy of sleep I’ve been getting. The Effexor dose has been since increased but only getting 2-3hrs sleep a night. That’s with the Olanzapine and Ativan. Have any of you had similar experience with ECT? Like I said I feel like I don’t exist because of my memory loss. Am I going to feel like that for the rest of my life? Thanks in advance for any responses. I think I read an ECT horror story on this forum not long ago. My problem is ECT is the only thing that helps with the severe depression. The medications don’t seem to help.

    #2
    Hello Beanie57. Welcome to the forum, and thanks so much for sharing your story. My heart goes out to you with all you've been through.

    I wish I could enlighten you about side effects, but I' I've never had ECT. Still, I know that memory is a common bugaboo with ECT and it doesn't affect everyone in the same way, or to the same degree, or for the same length of time. I have a friend with treatment resistant depression who has had lots of ECT and it helped him greatly, but he tired of going back for the treatments. He has since tried Ketamine therapy, which has also helped, but also requires "top up" treatments from time to time. I mention this because Ketamine has only recently been available to help treatment resistant depression; however the drug itself has been around for ages, mainly used as an anesthetic.

    I'm not up on all the various meds out there these days, I only know that trial and error seems to be the main way of finding what works. Finding something that works has been one of the hardest parts of dealing with depression, I've found. It tests your patience, and can feel discouraging. Congratulations to you for continuing on with doing what you can to find a method that allows you to carry on. I really hope that things turn around for you and that your mood improves.

    Meanwhile, post as much as you like -- sometimes that helps. I'm not sure who might be here on the forum with ECT experience, but hopefully someone can share their story and throw some more light on the subject.

    uni

    ~ it's always worth it ~

    Comment


      #3
      Hi UNI. Thanks for responding. My psychiatrist asked me if I would consider going to Victoria, a 2 hr drive from here, to receive Ketamine treatments. I’ve done a lot of research on it. It’s costly, I think about $500 a treatment. I don’t know if I could afford that. I forget how many treatments he said I’d need initially. Then as you mentioned there’s maintenance treatments. I’m not sure why the hospital here doesn’t offer the treatments. I’m on foot so couldn’t drive to Victoria. There’s a service here that offers rides to Victoria for medical reasons. I think I’m just going to lay low for awhile. My psychiatrist is trying more medications on me. I think he’s running out of options tho. I also think he’s very frustrated with me for refusing further ECT treatments. Thanks again for responding and I look forward to hearing from others who have had ECT treatments.

      Comment


        #4
        Good morning everyone. It’s 2:00 am and I’m up for day. I initially got up at 12:00 and layed in bed getting frustrated so got up and made a cup of tea. Went back to bed at 12:30. I think my psychiatrist is pulling his hair out trying to get me to sleep.Lol. I’ve been on many sleep medications and then he found one which seemed to help but then had to take me off it because of my sleepwalking. It caused me to sleepwalk more so he said it was dangerous to leave me on it. That was Zopiclone. So he’s limited as to what he can put me on because of my sleepwalking and my COPD. He was trying to decrease my Zoloft because he thought that might be contributing to my lack of sleep. Shortly after he did this I started having auditory hallucinations. He decided I wasn’t tolerating the decrease in Zoloft so put me back on the same dose. That was about a week ago and I’m still hallucinating. He thinks the culprit is the lack of sleep so he’s been working on that. I’ve been on Mirtazapine for that and Olanzapine for the hallucinations. Friday he increased both of them. My case manager is back today from days off so will update him and then he will pass it on to the psychiatrist. I’m very frustrated. I respond to the hallucinations whic is embarrassing. I’ve gotten to the point where I don’t know which hallucinations are real and what’s not real. I’m pretty much just staying at home or going to a girlfriends place for tea and to get out. She understands. If the hallucinations are being caused by lack of sleep then I’m seeing a sleep disorders specialist today. It has taken months to get in to see him. Because of my memory problem from the ECTs I had forgotten this appt and couldn’t recollect who this Dr was. His receptionist called me to remind me of the appointment which was great because I would have been a no show. I didn’t have it written down for some reason. I asked her what kind of Dr he was and she said I had already seen him before for a neurological problem but today I’m seeing him for my total lack of sleep and my sleepwalking issues.That’ll be great to get some feedback on both issues. The sleepwalking has gotten to be dangerous because I’ve actually left the apt bldg in the middle of the night in my pjs with no keys or cell phone. I buzzed the caretaker one night to let me back in. My daughter who lives a couple of doors down from me has caught me in the hallway on my way out and has redirected me back to my apt. My family and I are desperate for a solution to this. Whatever has been suggested has been tried and failed or is not applicable. Being assessed today also for eligibility to an assisted living facility. I’m told they’ve never had applicants with sleepwalking disorders and they wouldn’t accept me just based on that. They have 24 hr staff so it would be perfect for when I’m sleepwalking and making my way outside. They could redirect me into my apt. But there’s also the memory issues which I think are permanent but my psychiatrist says are temporary. Thank god I have a day planner or I’d forget all important events. I write everything down unless I forget. My daughter reminds me of a lot. I also need help with personal care and meal prep. My daughter also helps me with basic shopping needs when I’m not up to going because of my COPDor lately because of the hallucinations. My daughter has just started taking my medications home with her overnight because of an incidence with my sleepwalking. My blister pack went missing one morning. It’s always kept on the coffee table where I’ll see them and remember to take them. I got up early one morning and they were gone. I looked everywhere!! I didn’t whether I had taken my morning meds or not. I had obviously put them somewhere. My daughter tried to help me find them but no luck. They were probably with the missing Will! Lol That had gone missing about a week ago. So hopefully with this assessment today she’ll find me eligible for assisted living. The stress on my family with the sleepwalking issues and the memory problems is too much for any of them to deal with. We need some help before I run into some bad trouble at night being outside. Wish me luck with the assessment today and with the sleep disorder specialist. Maybe I can get some answers. My case manager is coming with me to the appt today which is great. That way if I forget what’s said he can remind me. My family and I hope I’m eligible for assisted living before something harmful occurs. Have any of you had similar issues? Have you any suggestions. Thankyou for listening.

        Comment


          #5
          Hi everyone. I wish I could get some responses. Thanks UNI for your input on ECT. I wish I could get some feedback from people who have experienced ECTS. I was thrilled when I came across this forum. Mood Disorders. Fantastic. I can relate to many of the posts and I’ve learned so much. Still trying to get used to this forum. I’m probably posting in the wrong section. I check my ECT post every day in hopes of getting some feedback. I was sure I read an ECT horror story somewhere on this forum. I could relate. Would like to read it again.

          Comment


            #6
            Hi Beanie57. There are no forum police making sure we all have our posts in an orderly fashion, just us friendly moderators making sure all is ok on the forum. I have never had ECT so I have no personal feedback. It was suggested to me once as a possible treatment. I was concerned about the memory loss. Fortunately I had other options that worked for me.
            AJ

            Humans punish themselves endlessly
            for not being what they believe they should be.
            -Don Miguel Ruiz-

            Comment


              #7
              Hello Beanie57. Thanks for checking in and letting us know how things are going.

              I understand your frustration at not getting replies; unfortunately the forum has been fairly quiet for some time lately. So in order to try and find some helpful past posts for you I tried a search using the box in the upper right hand corner of the page. It wouldn't accept "ect" as a word, so I typed "ect treatment". Quite a lot of past posts came up, some of them relevant, but you do have to look through to find the helpful ones. It's one a way to find some of the members' feedback you're looking for. Worth a try!
              uni

              ~ it's always worth it ~

              Comment


                #8
                Thankyou UNI, I will give that a try

                Comment


                  #9
                  Thanks for your post AJ. Yes I’m aware there are no posting police. Lol Guess I was just feeling particularly anxious about the subject and desperate to hear from those who could relate.
                  thanks AJ I’m going to take Uni’s advice and look at some of the previous posts

                  Comment


                    #10
                    Yes the search feature is helpful. The advanced search can narrow things down too.
                    AJ

                    Humans punish themselves endlessly
                    for not being what they believe they should be.
                    -Don Miguel Ruiz-

                    Comment


                      #11
                      Thank you for sharing .

                      Comment


                        #12
                        Welcome to the forum Atom.
                        AJ

                        Humans punish themselves endlessly
                        for not being what they believe they should be.
                        -Don Miguel Ruiz-

                        Comment


                          #13
                          Hi all. Found out something upsetting today. Have been really struggling with major depression lately. Psychiatrist is wanting to increase my Effexor but is having to wait for my BP to get under control. I’m suicidal off and on and trying desperately to stay out of hospital. I was in there for 2 months last time. I received ECT but refused the maintenance doses because of memory loss. When I get suicidal it’s impulsive so don’t really have a plan. Last time I tried to commit suicide I cut my wrists and arms. It was impulsive. I didn’t plan it. I’m trying to wait to get the increase in Effexor to see if that help. I just don’t know if I can wail that long for results. On Clonazepam now for sleep and anxiety and that’s helping the anxiety. I was told if I had to be committed they could do the ECTs again against my wishes. Is this true? Desperately trying to stay out of hospital. Told my case manager if I felt suicidal I would call the crisis line. Don’t know if I would because it just seems to happen so fast. Last time I was put in touch with COR. Forget what that stands for. They talked to me for some time and said they would take me to hospital , talk to admitting nurses and accompany me to PES. Psychiatric Emergency Services. That’s wonderful because part of the reason I’m not going is because of the stigma attached with mental illness and past experiences. I want to try to handle my suicidal thoughts till I can get an increase in the medication. Thanks for the ear. Can they commit me from home? I don’t want ECTs. Although they help with my mood they do too much damage to my memory.

                          Comment


                            #14
                            Hi Beanie57. If those you reach out to, believe that there is a risk of self harm, then your immediate safety is the biggest concern. They can show up at your house, and you can be taken to the hospital without your consent. However that is always the last resort. Having you make the decision to get the help you need is a much better place to start from.

                            It sounds like the memory loss is a big concern for you. It would be for me too. Have they considered treatment with a different medication? The higher the dose of Effexor, the more likely it’s negative effect on blood pressure.
                            AJ

                            Humans punish themselves endlessly
                            for not being what they believe they should be.
                            -Don Miguel Ruiz-

                            Comment


                              #15
                              Hi Beanie - I only check out this forum once every few months. I was treated with ECT back in 1992 when I was suicidal. It definitely caused short term memory loss. But my long-term memory was okay. I regretted getting the treatment also because it seemed so invasive. But we all have different issues in life and sometimes the medical profession doesn't know what else to do.

                              I recently started taking Vyvanse which is normally prescribed for ADHD but it's been helping my depression and giving me energy. Zoloft just numbed me too much, so I asked to switch.

                              I hope you can find what works. By all means call the crisis line as often as you need. That's what they're there for. You mention above in one of your posts that suicide is "impulsive" for you and that you don't have a plan. You might like to talk with your doctor about switching from Effexor which affects your blood pressure to Vyvanse which helps with both impulse and depression. I started at 10mg/day for a week, then 20mg/day for one week and now I'm taking 30mg/day and feel pretty decent.

                              Each of us are so unique in what medication can work for us. I hope you feel better soon.

                              Comment

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