ECT: A Patient's Perspective

By Eric Russell

I want to begin by expressing my gratitude to Martin Baker for allowing me this opportunity to share my experience with electroconvulsive therapy (ECT). His book, High Tide, Low Tide, focuses on the intersection of mental health and relationships. So here I come down a side street to narrate my journey along the ECT path. I have bipolar disorder.

After all the medications I tried failed to calm the episodes and manage the symptoms my doctor asked if I were ready to discuss ECT. She explained that while medications have a success rate of 30-35%, ECT sees a roughly 80% efficacy rate in academic studies. However, at that moment I was too nervous to hear the favourable comparison. Although I was afraid of the unknown, my doctor convinced me to educate myself and make a fully informed decision. In the end I opted in.

As a part of the preparation my primary care physician had to sign off that I was physically healthy enough to undergo ECT. This involved both a regular physical and an EKG to get a sense of how the heart would respond. Another step in the process was to interview with two different psychiatrists. This is really for patient safety as the doctors must verify the patient has the capacity to give consent for the treatment. In my case it was my regular psychiatrist and the psychiatrist who would be administering the ECT. The double interview might seem a hassle, but governing bodies want to protect patient rights.

Although not required, I did the initial series inpatient. This was for two reasons. First, the initial series is three times a week for three or four weeks. Going inpatient meant my family didn’t have to sacrifice all those days driving back and forth. (I live two hours from the hospital.) Secondly, family was also spared taking that time off work. Consequently, I was introduced to the experience all on my own. Looking back on that time though, I can’t recall any of it other than what got written down in my journal.

It wasn’t long after getting home that I realised I had memory holes. At times I struggled to recall the names of individuals close to me, details of autobiographical events, and how to navigate once-familiar landscapes. While this can seem disconcerting, it reinforced my determination to live in the present and cherish the loved ones who surround me.

At the same time, I have learned that the memories are not actually gone. For example, one day on my way to the hospital for ECT as usual I passed the Civic Center and a flood of memories came rushing back to me. I was riding in a bicycle race which went under the Civic Center’s arches. I could see the road as it curved through a descent. I could hear the tires on the road, the shifting of gears. I could feel the breeze. The memory had come to life in my mind again, giving me a confident new attitude toward those memory holes. I can refill them.

It’s important to make clear though, ECT is not a cure-all. I still had to take medicine and continue with ECT. After the initial series my doctor scheduled me for treatments once a week. Before too long the interval was extended to every other week. Eventually, it was stretched to every fourth week, and there it stays.

On treatment days I arrive early at the ECT department’s Pre-Op staging area to make sure I don’t throw the schedule off. I’m taken to a private room to change into my pyjama bottoms and a hospital gown. We take my vitals then there’s usually a bit of a wait before a nurse comes in to start my IV so I wrap my arm in a warm blanket as this seems to make the stick easier when it’s time. That done, we go over health and health care as well as medications I’ll be given in preparation for the procedure and those I take on a regular basis. Then, after speaking with my doctor, I’m left by myself while the IV replenishes my fluids.

With the IV bag near empty the OR nurse comes to get me. After a quick visit to the lav I’m ready for the procedure. We go back and I settle in on the gurney. I meet the anaesthesiologist as staff attach all the monitor leads. As I’m filling my lungs with pure oxygen, my doctor attaches electrodes to each temple. (I get bilateral treatments. Unilateral electrode placement would be the temple and crown.) At about the same time, the anaesthesiologist lets me know the muscle relaxant and anaesthesia are flowing. From that moment when I fade into sleep it seems only seconds before the Recovery Room nurse calls my name.

It wasn’t as simple as waking up and walking away from the crushing depression, but through the dedication of my care team it did seem like an awakening in a way. I had been struggling for a long time and finally began to feel good. I did things with and for my family; I even returned to interests I’d had in the past. I had my life back.

In conclusion, as I look back over my years of electroconvulsive therapy although it is typically thought of as a treatment of last resort, I don’t feel it should be. I consider it all a small price to pay for the benefits I’ve gained and a reliable tool to keep in mind.

 

The image is a sketch I drew in 2015 while inpatient during the initial series.

 

The Efficacy of Electroshock: a Personal Story

By Andrew Turman

Painting by the author.

In this day and age, it perplexes me as to why Electroconvulsive Therapy, or electroshock, still seems to get a bad rap. Some people not only question its use, but also call for the ban of this controversial treatment.

I, for one, can attest to the efficacy of its use for not only depression, but also mania. Just last week, I underwent shock treatment three times to control my mania, upon which the use of very dangerous psychotropic medications do not seem to have any effect.

The treatment itself has seen little change since it was first developed: it involves brief electrical stimulation of the brain while the patient is under general anesthesia. This stimulation induces a grand mal seizure in the patient, which under close monitoring, is harmless. This seems to “reset” the brain, much like rebooting a computer. Extensive research has found ECT to be highly effective for the relief of major depression, as well as being an effective treatment for mania and other mental health disorders.

It seems that people cannot get beyond the images of ECT portrayed in the movie, One Flew Over the Cuckoo’s Nest. In that film, the main protagonist portrayed by Jack Nicholson, was basically lobotomized by his treatment. This is an inaccurate depiction of the true effect of this therapy, at least in my experience, and I have had 126 treatments (and counting!). The worst side effects that I have experienced are nausea (from the anesthetic) and a slight headache. There was one time when I experienced some confusion, but I have continued to work with my psychiatrist, and have resumed treatment. My doctor is very responsive and checks on my mental state and clarity every time I am scheduled for a session. He is very professional and asks about my cognitive state as impairment can be a side effect.

To lessen the chance of cognitive impairment and unwanted side effects, I only receive unilateral, as opposed to bilateral, shocks. It is thought that only stimulating one side of the brain mitigates against the possible negative side effects or brain damage. It is only conjecture that this is true, as the how and why ECT works is largely unknown. Perhaps that is what gives people pause when this treatment is suggested. We simply do not know how or why Electroconvulsive Therapy works. It just does, and I can attest to the fact that this treatment has literally saved my life. I no longer ideate on completing suicide, unless I get psychotically depressed.

Certainly it is not a first line of treatment: the process involves going to a hospital and undergoing sedation. However, a muscle relaxer is also given, to safeguard against the side effects of enduring a grand mal seizure. When I wake up after treatment, groggy from being “put under,” I usually spend the rest of the day relaxing. The biggest side effect I feel is muscle tightness and soreness, a result of my body enduring the seizure. If need be, I can do anything I wish, it does not hinder my functioning. I prefer to hydrate (to flush the anesthetic from my system) and take it easy, but I have gone to work painting windows when I had to.

However, the efficacy of ECT is not in question. It works better than most treatments for depression, including medication. There are questions surrounding relapse, and often maintenance treatments are necessary. I have found that overall I need to have the therapy done every two weeks in order to be stable. Going without treatment longer than that tends to put me in a bad space; either I get manic or depressed.

Sometimes, however, I do need it more often. ECT is an effective tool against depression, but also against mania. Treatments can be given three times a week when my illness cycles out of control, in either direction.

What I hope to accomplish with this essay is a little bit of understanding. I am an advocate for the responsible use of this therapy, which includes informed consent by the subject. No one should be forced to endure electroshock against his or her will. However, people need to understand that it is safe and effective. No treatment is without its risk of side effects, and ECT is no exception. Memory loss is a real concern, to both my doctor and me. Measured against the effects of uncontrolled mania and/or depression, I am willing to take the risk. I am willing to endure the soreness and headaches.

I would like to say a little about my father’s role in my treatment. He would take his “telecommute Monday” off, to get me to my maintenance treatment. We would make a weekend of it, going to Pittsburgh the night before to the Holiday Inn downtown, where he would pay the “hospital rate.” He would get up early to take me to my treatment, take me to Cracker Barrel afterwards, then drop me off at my apartment before driving two and a half hours back to his house. No expense was too great for him to bear, no treatment too extreme, if I got the help I needed.

I am grateful for the profound impact ECT treatment has had on my life and the great relief it has provided, not to mention the improved functionality.

This article was originally published July 2019.

About the Author

W.A. Turman was an “Army Brat,” and that explains a lot. Man of no accent, but also of every accident. Life has not always been easy for the artist and writer we affectionately call “Zen Daddy T.” A gonzo journalist along the lines of Hunter S. Thompson, an artist well-versed in the school of Ralph Steadman, including favoring beers from the Flying Dog Brewery, Andrew is an acquired taste. His abstract expressionist works bleed protest and contentment. His recent series, “Art for Airports” has drawn critical acclaim. Here are his stats: hospitalizations—89; medications—75; suicide attempts—6; ECT treatments—128.

He can be contacted via his blog, on Facebook (Andrew Turman and Zen Daddy T), Instagram (zendaddyt), and Twitter (@ZenTurman).

 

Twenty-Plus Years of Misdiagnosis and Incorrect Treatment

By Chris Good

Originally posted on the author’s blog.

I have a story to share. It is My Story. My goal is to provide comfort, hope and inspiration to others who may connect with what I have written. As I have a lot to share I have split My Story into three separate posts.

Chapter One: Twenty-Plus Years of Misdiagnosis and Incorrect Treatment (this post)

Chapter Two: A Life Changing Diagnosis at Age Forty

Chapter Three: Hope and Inspiration

The obvious place to start my new blog is to share my own experience of mental illness, the time span of which is my entire adult life (which at the current age of forty is in excess of twenty years), as well as all of my late teens. I also suspect that I would have suffered to some extent in my more formative years, undiagnosed.

I have thought long and hard about the length of Chapter One. Whilst I know it’s long, I do believe everything written is important and relevant. If you connect or identify with even a single part of it, I’ll be delighted. I then hope you might choose to follow me on my blogging journey, witnessing hope and fulfillment in the face of adversity.

A significant portion of the detail below was obtained in a letter I requested late in 2017 from the mental health service who had dealt with me on and off from a young age up to the age of thirty-nine, at which point I relocated. The letter was addressed to the mental health service in my new home town asking them to take on care of me and providing them with a comprehensive history. It came as a huge surprise to me that this three page letter would prove to be almost worthless in the hands of the new service.

Another thing I find remarkable is that when I received this letter in 2017 it was the first time that I had ever received anything in writing describing what my diagnosis was at various stages of my life. This in stark contrast to the physical health conditions I have experienced, for which I have a file full of letters containing diagnosis and treatment plans, without me ever having to request them. Based on my experience, such transparency just doesn’t seem to exist in the world of mental health, and I can’t understand why. Maybe in different parts of the world it’s different?

On many occasions over the past twenty years, I have been in utter despair at the lack of a clear diagnosis. The most common explanation I got from the psychiatrists I saw was that I had a combination of depression (severe, chronic, recurring, treatment resistant…) and anxiety. But no one seemed able to explain why I kept experiencing the two together with apparently equal weighting. Depression slows down the mind and the body, anxiety does the opposite. How can the two exist hand in hand? This made it extremely difficult for those around me to understand what was wrong with me – family, friends, employers, colleagues etc. When the professionals didn’t seem able to explain it, how could any normal person be expected to understand it? This weighed very heavily on me over the years and was utterly exasperating.

My History

By detailing my history, I am aiming to set the context for future posts. I promise that my story will eventually turn into one of positivity.

• Summary: I decided to put the summary given to me by the mental health service in November 2017 at the start, to set the scene. “He has a long history of recurrent depressive disorder. He has required long term maintenance therapy with a combination of mood stabilizer (take note of the relevance of this for my next post!) and antidepressant. It is likely he will be vulnerable to relapse at times of stress and transition.” (Helpfully, by the time I saw this for the first time, we had just made a massive one!)
• June 1994 (age 16): My introduction to the local mental health service (National Health Service). Little did I know back then how long the relationship would last or how frequent our dealings would be at times. My diagnosis was a severe depressive episode with psychotic symptoms. It is worth highlighting that I was initially prescribed antidepressant medication aged sixteen by my family GP without my parents being aware of it – this happened shortly before my referral to the Young People’s Department of the local mental health service. My memory is very patchy, but I remember being at home with my sister, me cleaning stains in the house in an obsessive, compulsive manner and washing my hands with boiling hot water, then seeing the GP who started me on the tablets and shortly afterwards experiencing horrible side effects. I continued to be troubled with symptoms of depression and anxiety on and off over the next few years.
• September 1999 (age 21): My case with the Young People’s Department was closed.
• March 2004 (age 26): No longer a youngster, I was referred to the Adult Mental Health Service, troubled with depression, anxiety, obsessional preoccupations, social phobia and low self-esteem. By this point I had qualified as a Chartered Accountant.
• May 2005 (age 27): This month signified a really dark spell in my life, one which I will most definitely never forget. Following a significant deterioration in my condition, I was admitted to hospital between 3rd and 23rd May 2005. I was admitted because I was having active suicidal thoughts. Because of this I was placed under constant observation for the first three days of my stay. At the time I described myself as being tortured by my thoughts. My discharge diagnosis was major depressive illness without psychotic features.
• The whole experience of being in hospital was utterly soul destroying. To this day I can’t drive past the hospital (the ward I stayed in is visible from the main road) without vivid flash backs. Whilst I have never experienced being in prison, I often wonder if it could be any worse than a stay in a mental health hospital. Whilst the environment serves a purpose in keeping people safe when in crisis, I struggle to think of a place less conducive to recovery. That’s my experience anyway.
• Thankfully, following a lot of persuading and convincing my parents got the doctors to agree to release me on the promise that they would care for me. I cannot fathom the thought of having to stay a minute longer than I did in that hellish place. Meal times in the hospital were awful, sitting at a table with other very unwell people, no one talking. As was the daily ritual of queuing to take medication. Completely undignified.
• On discharge I began attendance at a day hospital. My condition deteriorated and I continued to be troubled by depressive symptoms.
• September 2005 (age 27): As a result of my deterioration post discharge I started receiving a course of Electroconvulsive Therapy (ECT), receiving a total of eight treatments. I responded well to this and I think it was a real turning point in my recovery from the major depressive episode I had just experienced.
• ECT is a procedure done under general anesthesia in which small electric currents are passed through the brain, intentionally triggering a brief seizure. ECT seems to cause changes in brain chemistry that can quickly reverse symptoms of certain mental illnesses.
• April 2007 (age 29) – brighter days and a fresh start in a big new city: My case was closed by my local mental health service following maintained progress and because I had decided to make the move to a much bigger city (London) for a fresh start and to take up a new job. When I moved to London I felt like a different person with a new lease of life. I thrived on the anonymity of being in a huge city where I knew nobody and the people I did get to know knew nothing of my difficult past. I felt like people treated me at face value, in contrast to my home city where I routinely felt like I was being judged because of my history of mental illness. I had a new found confidence and shortly after moving met my now wife. For the vast majority of the near three years I spent in London, life felt great and I truly believed that the dark days of ECT, hospitalisation etc were behind me forever. Sadly, I was to be proved wrong.
• Shortly after getting married, my wife and I left London and returned to my home city because we considered it a better and more affordable place to start a family when the time was right. We had our first child in February of 2011.
• April 2014 (age 36): Referred back to Adult Mental Health Services complaining of anxiety and stress at work.
• December 2015 (age 37): By this point my wife and I now had two beautiful children. I contacted the mental health team as a result of a worsening of anxiety symptoms. Shortly after, in March 2016, I was made redundant from my job. I found a new one quickly but left it after only a couple of weeks as I was unable to cope due to my worsening anxiety levels. This marked the start of a serious downward spiral which would result in many extremely challenging times over the next two and a bit years. This included being out of work for a full year. I felt in such despair and I remember bursting into tears in my kitchen one afternoon and in a conversation with my Dad telling him how I wished there was an option of euthanasia for those suffering from serious mental illness – I saw it as an end to all the suffering but with the consent and even blessing of family members. I think I saw it as a more palatable option to suicide. I guess that shows how unwell my mind was at the time. In the early days of not working I wasn’t able to do a great deal, but as I slowly started to feel better my wife returned to full time work in retail (obviously we needed an income, albeit significantly lower than the one we had when I was working) and I took on the role as chief childcarer. I quickly learnt that this role was every bit as challenging and tiring as being in the workplace.
• March 2017 (age 39) – Another fresh start: With the passage of time thankfully I felt able to return to work. Given my positive experiences previously and my desire to experience anonymity again, in all my wisdom I decided that the only place I wanted to and felt able to work in was London. I had a good relationship with a recruitment agency there from the last time, so I felt confident I could pick something up. However, with circumstances rather different than they were when I made this move ten years earlier, this would also entail relocating as a family with my wife and our two young children, ages six and three. No doubt many saw this as madness given all we had just been through. But my wife and I were certain we wanted to give it a go as a way of getting our family life back on a positive trajectory.
• December 2017 (age 39): Just a few months earlier all seemed to be going well, the new job in London and the family relocation successfully behind us. Three months after moving, I accepted a promoted post, albeit with trepidation. How I wish I had listened to my gut and what it was screaming out to me before I took on this more demanding job! Quite early on I knew I was out of my depth, but persevered with the support of my boss who I was completely open with. In December things really started to unravel and shortly thereafter I resigned in favour of a less challenging role elsewhere.
• April 2018 (age 40): By April I was very unwell and had to leave my relatively new job. I was again experiencing an intolerable combination of anxiety and severe depression. Whilst they were not active, I was definitely having thoughts again that suicide may be the only means of finally ending this recurring suffering. I clearly remember walking through a park one day, tears in my eyes and feeling completely lost and hopeless. For a moment, I understood one hundred per cent why many people reach a point where they tragically decide that for them there is no alternative. Blessed with a loving and supportive wife and two wonderful sons, I was able to cling on to the thought of them to keep me hanging on.
• Prior to things reaching this point, I tried really hard to seek intervention from my new local mental health team. I thought the comprehensive letter from the team in my old city (as mentioned above) would ensure that I would be seen promptly when necessary given my history. Not so. I was treated as someone who had contacted the service for the first time and with no previous history, joining the back of the queue. Eventually after pleading for help, I was assessed by a Community Psychiatric Nurse (CPN) working in the Urgent Care Team. I obviously wasn’t considered a priority, with them referring me to a team called the Specialist Therapies Team. The waiting list was undefined, but I heard from a reliable source that it could be up to two years, yes two years. I phoned frequently in the hope that they might see me but to no avail.
• Things continued to get worse as the weeks passed. I was suffering from intolerable insomnia, often lying wide awake with my mind racing for the entire night. I was taking prescribed sleeping tablets, but most of the time they were of no help whatsoever. My anxiety and frustration at not sleeping became so unbearable that alarmingly, I regularly began to leave the house in the middle of the night and go either walking or cycling in the pitch dark, doped on sleeping pills. I simply had to get out of the house, with no regard for my personal safety. I even ended up in the local McDonalds one night wearing a jumper and my pyjama trousers. At the time it didn’t even register.
• Things really came to a head one night when my wife woke up at 3 a.m. to find me in a very severe state of anxiety. She was so concerned about me that she got the kids in the car and drove me to the local emergency department. For my kids this must have been a very scary experience, being plucked from their slumber and witnessing their Dad like this. I hope never to make them experience this again. What followed that night really shocked us. After a short wait the triage nurse spoke to us, and given my mental state we couldn’t believe what we were hearing when she advised that the mental health team on duty would not see me. We were told that they only see people who they believe are actively planning to commit suicide imminently. We were sent packing and told to contact my GP in the morning.
• I did go to the GP the next morning, a new one to me who I had seen once previously. She clearly had empathy, which my previous one didn’t have one iota of. The GP said that I was clearly at ‘Crisis Point’ and she sat in front of me dictating, in her own words, a begging letter to a local psychiatrist she had seen at a recent seminar. Coincidentally, he worked in the Urgent Care Team who a short while earlier had considered my case not serious enough to require prompt attention. Eventually I did get an appointment to see him, but by this point we had sought help elsewhere as I needed help urgently. With the help of family and a family friend, we looked into private care and eventually got the name of a private psychiatrist who came very highly recommended. Being introduced to this psychiatrist was to prove life changing, as will be explained in Chapter Two.
• Here is a list of all of the medications I have been on at some point in my life in relation to mental illness – thirteen in total (excluding the two sleep specific ones): Clomipramine, Fluoxetine, Paroxetine, Citalopram, Olanzapine, Venlafaxine, Mirtazapine, Risperidone, Diazepam and my current daily mix of Lithium Carbonate, Lamotrigine, Quetiapine and occasionally Clonazepam (on an ad-hoc basic if required). Also zopiclone and zolpidem for chronic insomnia.
• Alternatives therapies: In addition to all the medication over the years I have had considerable input in the form of Cognitive Behavioural Therapy (both privately and through the National Health Service) and occupational therapy. Privately I have also tried many other things in desperation that they may help alleviate my suffering, including hypnotherapy and Emotional Freedom Techniques (EFT) .
• My other debilitating conditions: As if all of the above wasn’t enough of a challenge, I have also spent many years dealing with two physical illnesses, both very debilitating at times in their own right. The first is ulcerative colitis (a form of inflammatory bowel disease) which I was first diagnosed with eighteen years ago, the second chronic migraine which I was diagnosed with eleven years ago and currently receive botox treatment for.

If you made it this far, well done and thank you for reading. It means a huge amount to me.

I wanted to end on a very big positive note. Despite all of the pain and suffering detailed above, I’ve got through it. And to think that despite all the years of suffering, my wife and I were able to bring two beautiful sons into the world, and enjoy many joyous times together as a family over the past few years, is an absolute blessing and in many ways quite a miracle.

About the Author

Chris Good is primarily a husband and dad to two young boys. He also has considerable experience of a long term battle with mental illness, but is a novice when it comes to blogging. Rather than feeling resentful about the hand he was dealt and following the enlightening experience of a correct diagnosis at age forty, Chris is now intent on sharing his story to provide hope and inspiration to others suffering from prolonged mental health challenges that a fulfilling and rewarding life is still achievable. Chris believes that his experiences and years of struggle make him uniquely placed to help and empathise with those suffering from similar mental health conditions.

Chris’ first contact with a psychiatrist was at age sixteen and the diagnosis for the next twenty-odd years was a combination of treatment resistant depression and anxiety. In early 2018 Chris saw a highly experienced psychiatrist who completely reviewed his case and confirmed that he had been misdiagnosed and mistreated for many years. He has now been diagnosed with ultra-rapid cycling bipolar disorder. On receiving this diagnosis Chris conducted extensive research on the condition and so many things about his life and his struggles over the years finally made sense.

Chris qualified as a Chartered Accountant in 2002 whilst working with one of the “Big Four” accountancy firms. Other than his family, Chris’ main passion is cycling. He used to cycle competitively but now cycles for pleasure and fitness. Due to his long term struggles, Chris has found it extremely difficult to hold down a pressured career and to cycle consistently over the years. Chris has also suffered for many years with ulcerative colitis and chronic migraine which also make work and cycling difficult at times.

Whilst a correct diagnosis and being put on correct medication came as a huge relief to Chris and his family (and in many ways felt like reason to celebrate!) he realises that that the condition will require careful management, self-care and treatment for years to come.

Chris’ motivation to be the best person he can be is clearly his family. He feels that during their young lives to date, despite many special and enjoyable times together, his children have witnessed a dad who was just not fully alive. Now that he has been correctly diagnosed and is on the right medication, Chris is determined to change that.

You can find more about Chris and his work on his website, on Twitter (@chrisgood78), and on Instagram.