Written by: Ian Knabel
Yes, that’s right. Electroconvulsive therapy or ECT is now my family’s first choice for treating psychotic episodes and I’m giving you 5 great reasons why. First I need to give some background to our situation so you understand where I am coming from.
My wife Pauline has been diagnosed with schizoaffective disorder. When she is well she is very well. She functions at a very high level as a wife and mother and manages all that goes with being the CEO of everything that is great in our home.
However when her schizoaffective illness decides to rear its ugly head, it does so with a vengeance. It hits hard and it hits fast! She will go from having no issues or problems of any kind, to being in a psychosis 90% of the time in 48 hours.
My wife’s illness manifests itself as misinterpreting virtually everything that is said by everyone. Of course the misinterpretations are not positive. For example I might say “Good morning, did you have a good sleep?” Her reaction would be “What do you mean–you hate me and wish I was dead and didn’t wake up!” When this happens, all day, with every conversation, it is extremely stressful for not just her but everyone around her including our daughter.
The illness causes constant and severe mood swings ranging from laughing like a little girl about nothing, through periods of intense crying, then into moments of euphoria about simple everyday things. The euphoric moments change in an instant to periods of intense hatred and distrust caused by the paranoid thought that everyone is out to harm or kill her.
When the illness is operating at it’s worse, my wife is simply unable to cope with her immediate family let alone with others in the community. Sadly this is when the battle to get her into hospital for treatment begins. This alone is worth writing about in detail and I would like to cover in a follow up story.
Her illness is incredibly resistant to medication. When she’s well, she needs very little medication to stay well, but once the schizoaffective disorder is out of the bag and running loose there isn’t enough medication in the world to tame it.
The Impact of ECT for Us
Before we tried electroconvulsive therapy, her average hospital stay, with 5 separate admissions over 12 years, was 14 weeks. Even after 14 weeks of very high doses of anti-psychotic medication she would only be just OK and required very careful management.
This all changed when, in desperation, her treating psychiatrist recommended ECT. Since using ECT for her treatment, on her 3 subsequent admissions she has been able to be discharged in a dramatically improved mental state (far better than after 14 weeks of medication only treatment) in about 1 week compared to the 14 weeks previously. A massive improvement in anyone’s book I’m sure.
What Does ECT Involve?
A little detail on what having electroconvulsive treatment actually involves. I have been with my wife several times during the procedure. I am speaking from my own experience.
The administration of ECT has changed quite a bit even in the 11 years we have been involved. ECT is administered to a patient who is placed under a general anesthetic, all the normal checks are done first such as general health, blood pressure, pulse, check the lungs for any breathing issues etc. Once the all clear is given the general anesthetic is administered putting the patient to sleep. A tongue guard is then inserted into the mouth and the ECT machine connected. While this is going on, a muscle relaxant is also administered which stops the visual or external appearance of any “convulsion”. This wasn’t the case 11 years ago, and it was like watching someone have an epileptic fit. Now, the only visible signs are slight twitching of the fingers and toes.
The ECT dose is administered via electrodes placed on the forehead and temple areas (exact location varies on what is being treated). I’m not sure of the exact length of the administration of the ECT but it is very short, very quick. It is over in less than a second. The doctor will then watch and wait for the fit to start. The muscle relaxant stops the external signs of the fit but it does still happen, and is monitored via sensors placed on the patient. It has been explained to me that the slower and longer the fit goes the more effective the treatment is.
Following treatment my wife is wheeled into a recovery area. Fifteen minutes later she is sitting up and ready for a cup of coffee. From being taken into the treatment room to enjoying a cup of coffee is 30 to 40 minutes maximum.
5 Reasons to Choose ECT
So why is ECT our first choice for treatment?
1. ECT worked when medication didn’t
My wife’s schizoaffective disorder is extremely resistant to medication. The first time she had ECT she had been in a mental health ward in a deep and strong psychosis for 14 weeks with zero signs of improvement despite being given what her Doctor described as enough medication to “treat an elephant.”
We hadn’t been able to hold a civil conversation for all this time. After the first dose of ECT she called me and said “Hi darl! I’m back in the ward from having the ECT and feeling great except for a bit of a headache.”
You cannot believe the relief I felt! Tears streamed down my face. My wife is back! Things will get back to normal.
2. ECT has an immediate impact
In our experience medication works slowly. You have to take the medication for a period of time and work up the level in your system until you get to a therapeutic level.
ECT on the other hand has an instant effect.
3. ECT can be done as day surgery or as an outpatient
One of the great things about ECT is that you can go into the hospital early in the morning for your treatment and be home by lunchtime.
As a result, having a course of ECT is far less of an inconvenience to everyone concerned compared to lengthy hospital stays waiting for medication to reach the right levels and hoping it stabilizes the symptoms.
4. ECT “blurs” or weakens memories of things said and done when in a psychosis
One of the biggest detractor’s of ECT for many people is the perception that it erases or blanks out big chunks of memories.
I can say with a great deal of confidence that our experience is different. Yes, there are issues with memory following ECT but my wife and I have found that for her, the memories aren’t gone, they are just a bit messed up.
Imagine if all your memories are like files in a filing cabinet. All in a neat logical order so you can easily and quickly find what you want. We think ECT just mixes up the order and the indexing.
With a bit of time, some training and a lot of effort we have found 99% of everything is still there, even if it is a bit messed up in the order.
So why is this a good thing? I’ll explain. In my experience one of the cruelest things about a mental illness is what it does to someone’s self-confidence, their self-esteem, their pride.
Put yourself in these shoes – you abuse and accuse people you love and people who stand by you no matter if you are well or unwell. Would you really want to remember every nasty comment or accusation, every argument, every paranoid thought? Probably not…
This is one time when the effects of ECT of memory are surely a good thing.
5. ECT can work across various mental illness
I’m sure most of you will know that schizoaffective disorder is (in a simple layman’s explanation) schizophrenia and bipolar rolled into one. This combination is one of the reasons that the illness can be so difficult to medicate. The treating team have to get the anti-psychotic medication right while also balancing the bipolar to stabilize the mood component.
In our experience the ECT courses have worked quite well in treating both sides of the illness. If we are super critical we would probably say that the ECT is more effective on the schizophrenia side of things. We find this a little strange as ECT is generally accepted as being very efficient treating depression. But then again, everyone is an individual and everyone’s illness is unique to them.
The medical fraternity is still out on exactly what, why and how not only ECT works, but also a lot of different medications, so I’m not going to try and figure it out. I just know that for my wife and her illness it works extremely well.
So there you go… 5 reasons why we jump straight to electroconvulsive therapy or ECT to treat my wife’s schizoaffective disorder.
Here in Australia, ECT is prescribed as a “course”. Each course consists of between 6 and 9 individual treatments normally done on a Monday, Wednesday and Friday for 2 or 3 weeks. Over many years my wife has had over 100 individual doses of ECT and if she becomes unwell again her file is marked prominently that she wants ECT ASAP.
While I am not a doctor I can relate to you our experiences and what has or hasn’t worked for my wife. I hope you at least found our opinion interesting and look forward to answering your questions and comments below.
Have you had ECT? How effective was it? Would you have it again knowing what you now know?
Image artwork: Ian
Ian is husband and care giver to his wife Pauline who has been diagnosed with schizoaffective disorder. Together with their daughter they live about an hour outside Brisbane in Queensland Australia.
Ian
WOW! A huge thank you to Trish, David and all the team at Mental Health Talk for allowing me to share our story. I’m really looking forward to an active discussion.
Don’t be shy, what do you think about ECT?
Tony
Thanks Ian for sharing your experience. I am happy your wife had a good experience with ECT as I am planning to start a patient with treatment resistant schizo-affective disorder on a course of ECT. Your wife’s illness is so similar to my patient’s that I hope the results will be the same. I was looking up current research and case studies on ECT for schizo-affective disorder and found your post.Thanks again for sharing.
PAP.MAT.
Thank you very much for sharinh your experience..I m a doctor and I have a huge problem with my brother.He s diagnosed with paranoid schizophrenia since 2014 when the first psychotic episode appeared.He s been quite well until this March when a second episode happened.He s still in hospital.After the disappointing results of medication doctors decided to start ect.He had 14 ect treatments and after these he was extremely well.But 7 days later he relapsed again .So I would like to ask.How many treatments did your wife need at first to see good results?For how long did they last?which is the medication she was simultaneously receiving?Thank you very much for your time..Wish you and your wife the best!
sharon
Interesting and informative. I’m all for ECT, it is an effective treatment.
Ian
Glad you enjoyed our story.
Stacy
I have bipolar disorder and received ECT treatments for 2 years. It saved my life! Unlike Pauline my memory was severely impaired, mostly due to the combined length of my treatments. I am 40+ and received the treatments in my mid to late 30’s. I can remember tiny details of my childhood, but next to nothing of my own children’s. Thankfully, I have a great support system, namely my mother who acts as my “memory” for me. It’s not the same, but it’s a small price to pay for not wanting to kill myself every other month! I highly recommend ECT as a treatment option for mental illness!
Ian
Hi Stacy
I’m glad you also had a good experience with ECT but I am sorry to hear about the memory issues.Pauline did initially have big chunks of her memories missing but with a consistent and methodical approach we have found that most are still there in some shape or form. We spend a lot of time talking about the past and looking at photos and news stories from around the time we are working on. For us it is a process of association, starting with a very big broad thing and then once we get to something she does remember we start to work into the detail. It doesn’t work all the time but in general we are having a great strike rate with this process.
As for the effectiveness of the ECT treatment, Pauline would agree 100% that while not nice, the memory issues are better than spending months, years or perhaps forever in a mental health facility because of her extremely medication resistant schizoaffective disorder.
Good luck for the future. We both wish you good health and a great 2014
Twyla
Hi Ian,
I just wanted to tell you that this was a great article along with the one that you linked towards memory. I went onto your site and found things of interest to read, so I have bookmarked it so that I can revisit it later. I just want to say that I admire your constant care and support that you give your wife- it is truly a reflection of what marriage and unconditional love is about.
Also, I just wanted to say that this past year, between the months of August and September, I underwent 12 ECT treatments. I was suffering from severe major depression at the time, the second major bout of it that year. I am 28 years old and since the age of 13, I have been battling greatly with mental illness. Sometimes, things go great for awhile without a relapse but then when I least expect it… BAM! it returns, like an unwelcome guest that barges through the door and makes themselves at home. Through out those years, I have been on an upwards of over 20 medications without much relief for an extended period of time. Sometimes, it is even hard to stay on medication if I know that they will not last long and another switch will need to happen. Then, there is the fact that who knows what is in the pills and the side effects that go along with them; crippling my ability to be creative or feel much of anything… its a two sided coin: off medication and able to feel more but depression ultimately returns OR on medication and feel numb.
During my last hospital stay with the ECTs, I noted a difference after they administered the tenth treatment. The medical professionals were a bit worried after so many and there was no effect but then the tenth one posed a great difference. Apparently, during my first ECT, no body reaction was noted at all and they were unsure I had a seizure until they checked the brain wave print out. While having the treatments, my mind is very hazy of the hospital stay and it is hard to recall much of those memories of what I did during that time. Also, there is some memories afterwards that I do not recall that people have asked me about. Upon reading my day planner and other questions, I have noted there is missing information pre ECT process as well about important meetings and courses that I attended. I have tried hard to get these memories back however some of them are still locked away in my brain.
I am noting a dip in my mental health currently and there is talk about me undergoing maintenance treatments before it gets worse. I am pretty confident that they will be helpful, however there is the anxiety that lingers about the procedure, more so with the memory loss. Last year for me was a write off with how ill I was. I could not get over how much ECT made a difference for me. For a period of time after my treatments, I felt as if I was on a high- with so much energy and so happy. Then, I started to even out, and now there is a decrease in energy, motivation, and all that goes with depression. For a period of time after the process, it gave me a break, my life back… I know what I need to do now, as the unwelcome guest is starting to linger outside my house again.
I am hoping at some point to write about ECT treatments on my blog and help diminish some of the stigma that continues to follow it. A year ago I was against ECT, but with this past admission I was so desperate that nothing else was working… it was a last ditched effort. I knew it would not hurt to try it cause I felt dead already.
Thank you for sharing your experiences on Mental Health Talk and thank you Trish for posting it. I am glad to know that there are others that find it helpful and would go for this treatment first above any other. Together, we can eliminate the stigma that goes with ECT treatments.
Ian
Hello Twyla
Great to hear from you and I’m glad you enjoyed the post. I am super pumped that you found the information on dealing with the memory issues helpful.
I could go on and on about our experiences with ECT. I really didn’t have time to go onto maintenance ECT which Pauline found to be a pain in the butt and very helpful at the same time. Maybe Trish will let me share our story on this another day 🙂
I hope that in time the stigma around ECT will reduce. In my experience a lot of the negative press comes from so called experts who have never actually had to deal with a mental illness let alone actually have ECT. Of course, while a great movie, One Flew Over The Cuckoos Nest has a lot to answer in how the community view ECT.
Is ECT perfect – no it’s not. But for a lot of people it gives them their life back.
I wish you well for the future and thanks again for stopping by and taking the time to share your story.
Best Regards
Ian
Trish
Ian you are welcome to guest on MHT anytime!
Ian Knabel
Thanks Trish. I’ll take you up on that offer. I’ve enjoyed the experience tremendously
Geoff
You are a Superhero Twyla. 🙂
Ian Knabel
I have to agree with you Geoff. Her story is truly amazing! Never give up, keep fighting and better days will come.
All the best to both of you 🙂
Ian
Allison
Thank you for sharing your story and experience. This is timely right now as I have tried MST (magnetic seizure therapy) to not much change …or not as much as needed to be considered healthy…And my doctor has brought up ECT.
Thank you also for sharing the link to potentially assist in helping with any cognitive side effects. I have found those to be the oddest to deal with post-MST.
Ian
Hello Allison
Thanks for stopping by. I’m humbled that you found our story here and at http://www.QueenslandMentalHelath.com valuable.
As I touched on there are possible side effects with ECT and it is always best to be informed before making a decision to proceed with any form of treatment.
I will have to look into magnetic seizure therapy (MST) as I know nothing about it, Thanks for mentioning it.
All the best and I hope your future is bright one!
Regards
Ian
Jason
My doctor won’t discuss ect with me because of the memory loss. Almost two years of medication and I only get worse each day. The psychiatric hospital won’t return my doctors calls. Other than leaving my apartment to sit alone and have a coffee each day I can count on one hand the number of times I’ve left my apartment since October. Spent Christmas and NY alone. Not one friend even sent a text message. Flew home last week to visit family and see my 9 month old niece. While they were happy to see me for a few days, I used the trip to shut down and say goodbye to them. Next week is my birthday. Yet another day to be alone. I’m hoping I don’t make it. I know this isn’t the place for me to write this and I’m sorry. I guess I just wanted to feel like someone might give a thought about me and however brief.
I’m glad your wife is getting better. I hope one day there’s a cure for what we have.
Geoff
Ummm….. Don’t want to give any advice that has not been asked for. However, what you say has me concerned that you are talking about taking your own life. If that’s the case you might want to find someone who you trust who is outside of the circle of care that you currently have and talk it over with them.
I don’t think you would have posted if you did not want a response. Perhaps going to the emergency department of a different hospital and telling them that you are suicidal would open up different possibilities for you.
Keep in touch and let us know how things are working out for you please.
Be strong. You matter.
Stacy
Jason, I’m so sorry you are having such a crappy time. Don’t give up hope, help is on the way. Maybe not today or tomorrow, but relief will come. At first for a few minutes, then for a few hours, a few days and so on. I know the last thing you probably want to hear is my optimism right now. I really do know. Even though I finally received ECT I still have really bad days, but before ECT my life was way worse. So many suicide attempts I’ve lost count; one of which cost me 2 weeks in a coma almost needing a kidney transplant to the point my family was tested to see I they would be a match. Trust me when I say I know how you feel right now! Do not do anything that can’t be reversed. Your family obviously loves and cares about you or they wouldn’t have asked you home and been happy to see you. It took me 3 or 4 shrinks (again, I lose count) and countless number of therapists and hospitalizations before I found the doctor who was doing ECT’s in my city ( and I live in a pretty big city). It then took me another year of treatments before I could go back to work ( only part-time) and community college (and I still couldn’t handle the university). Now I love what I am doing with my degree and while I still have bad days, yesterday was a great day! I’m no doctor, but maybe you should consider a second opinion from a psychiatrist. The right person is out there to help you, you just have to keep pushing forward and don’t give up!
gina
Does ECT give your confidence back?
Trish
Thank you Stacy and Geoff for responding to Jason.
My policy is NEVER to give out the email addresses of my guests or my commentators. I’m very strict with this (I wanted to say this first before I say…) But when I get comments that suggest suicide, I do use the commentators email address to try and email them directly. I did this with Jason to ask him to not give up and to come back and read your comments. Unfortunately he used a fake email.
That doesn’t mean he won’t come back on his own. I hope he does.
Ian Knabel
Jason
I am sorry to read about the hard time you are having. If you are unhappy with the help you are getting from your psychiatrist, please change doctors. the problem is with them, not with you. Never ever give up on hope! Things can and will improve. Change doctors, maybe change medication, get some exercise, some fresh air (could be pretty hard depending on where you live at the moment)
The sun will continue to rise everyday and you need to do the same! Good luck and I wish you a long and healthy one.
Ian
Desperado
I’ve now had 3 sessions of ect for depression, and I can’t see it’s helping. There are things that happened right when the ect started that have shattered me quite a bit. I wonder whether that is diminishing the effect. Nevertheless, it’s been a huge disappointment not having had ect help me, I had expected it to be a life changer. ☹ If anything, I feel quite surreal, which is a nasty feeling. But I am very happy for your family. Your kids deserve to have their mom there for them.
Susan
I am thinking of trying this for my mom. She is a severe schizoaffective. Has been for 35 years with improper treatment. She was living in a third world country until a year ago when she moved with me to the US. In our home country, mental illness is poorly managed.
Medication is helping very little and she is still as paranoid as ever and disorganized, delusional and continues to hallucinate. What had mostly improved is her mood on the medication, but it is still a problem because if you say the wrong thing she may go off, which is horrible in public.
Anyway, I am at a loss and don’t want to keep trying meds. Just want to find a shrink who will attempt ECT and see if that will help.
This story gives me hope Ian. Thanks so much.
Michelle
Can you go off your meds if you have ECT?
Stanley D.Truskie, Ph.D.
I lost my beloved son, Mark, at the young age of 46. He was diagnosed with schizoaffective disorder and was on psychiatric medications since the age of 20. Eventually these medications resulted in his death. His psychiatrist prescribed high levels of Cloziral and Citalopram resulting in toxicity and heart arrhythmia. The more I read about ECT, the more I am convinced that it is a better choice than psychiatric medications. Studies have shown that taking these dangerous medications over a period of time cause premature deaths in patients (just read the warning labels on these medications and you will understand why). In looking back, I wish psychiatrists would have first prescribed ECT rather than making my son reliant on medications that eventually killed him. He may have had some memory loss issues, but he would be here with us today. Thank you for sharing your story. I started a foundation in my son’s name. The web site is http:markdtruskiefnd.org You can read about my son’s life struggles there.
Ganesh
I am 22 year old and i am suffuring from anxiety and depression and i cant know what i can do plz help me
Bunnie
ECT HAS HORRIBLE SIDE EFFECTS!!!
DO NOT DO THIS TREATMENT..
10 years later I have brain fog, pressure in head, blurry vision,memory issues and UNABLE to work.
Dianne Pobuda
Thanks Ian for sharing your story. My 34 year old son has suffered with schizoaffective disorder since he was 14 years old. He has been hospitalize at least 7 times (each time for about 30 days). He has been on at least 20 different meds. and which have not worked each has caused many side affects. Also, is would not take his meds. most of the time (which I understand to be common problem with schizoaffective disorder patients). Because he has not been drug compliant s he is now getting injections. whic h are not working.
Yesterday he ended up back in the hospital. I have heard of ECT but was not sure is would be the
answer. After reading your story I am going to ask the doctors at the hospital if this might be worth
trying on him. Your description of your wife’s behavior sound exactly like my son especially her
response to “good morning did you have a nice sleep”. Not many people understand this situation
and think we can have a reasonable conversation with our love one. My son misinterprets everything
I could go on and on but I think you understand. Hopefully the doctors will consider ECT and it will work.
Thank you again..