New research on the effects of anti-depressants: The ‘Back’ flip

I have said it a lot, but mental health was not my initial intention for starting this blog. My intention was to keep a journal of my recovery from spine surgeries (plural) and discuss my methods of rehabilitation. But the most fundamental part of my experience this time around is still anchored in my struggles with anxiety and depression. It seems I signed up for the full adventure somewhere along the line (albeit unknowingly), from my struggle with addictions to pain-killers and their poor impacts on my mental state, to a tough journey getting back to a routine, and now (most recently) a really bloody ridiculous experience transitioning onto a new anti-depressant.

Sometime after writing my previous post, I saw my GP to discuss my exceeding levels of anxiety. Subject to this discussion he advised me to try a different anti-depressant in order to manage my symptoms. The main reason being that, if I am paying a lot of money to take the highest dosage of a drug, and it is not assisting me when I most need it, then I am probably wasting my money. Although I don’t fully agree with this statement, because I firmly believe that there is no such thing as a magic pill for our health, I was desperate. Tired of being unwell and unmotivated, sore and stiff… and just desperate for some normality back in my life. So, I agreed to make the change.

For those who have never taken anti-depressants and therefore have not been privy to the conversation between the patient and doctor when deciding which drug to take, this is how it goes:

Dr: “What are your symptoms?”

Patient: (lists symptoms – although a massively common symptom is lack of concentration and the ability to take notice of changes in your health, so this can be a challenge)

Dr: “Ok, well in that case we have serval options….”

And they will continue by listing the side effects of each drug you could choose from until you come across the drug with the least yucky side effects. Then you generally choose this one. But there is no guarantee that the drug you have chosen will work for you, or that it won’t send you into a spiral of extreme anxiety, suicidal thoughts, confusion, dizziness, vertigo (the list is too long for me to go on with here). The system is flawed from the beginning, and the worst part is that, by the time you are prescribed with an anti-depressant, your conditions is already really bad. So, taking any anti-depressant for the first time is a risk, because it may make you worse than you already are. Some anti-depressants have even been linked directly to suicide in some patients, while the same drug in others will set them on the road to recovery. There is just no way in modern science of knowing what is the best drug for an individual patient, aside from their symptoms.

Individual antidepressants can be grouped into different classes or groups, according to how they work chemically in the body. Within each group, there are usually several medicines that work in a similar way but may differ slightly from each other.

The different groups of antidepressants are about as effective as each other overall, but some people will respond to one antidepressant better than another. The type and severity of side effects can also be quite different between these groups of antidepressants.  

‘Anti-depressant Medicine Explained’ – NPS Medicinewise

For those interested in the scientific details, I made the choice to start taking Dothep, otherwise known as dothiepin or Dosulepin, which is classed as a Serotonin–Norepinephrine Reuptake inhibitor (SNRI). SNRIs are designed to slow the rate that the brain breaks down serotonin and noradrenaline, which leads to an increase in serotonin and noradrenaline activity in the brain. However, they do not commonly work as well as Selective Serotonin Reuptake Inhibitors (SSRIs). I made the switch from Cymbalta (Duloxetine), which is also an SNRI, with the assumption that Dothep would do a better job than Cymbalta, with a low side effect profile, as I had not experienced many side effects on Cymbalta. However, this was far from the case.

Within three days of making the switch from Cymbalta to Dothep, I had what became an ongoing case of vertigo, nausea and dizziness, loss of concentration and the ability to make decisions, and heightened emotions (which meant I spent three weeks on the verge of, or in tears, for no apparent reason) and a few suicidal thoughts. After six months of heightened symptoms of anxiety, and all of the life challenges it  brought with it, I did not think things could get much tougher, but as I said, I signed up for the full tour. So here we are.

I have spent the last year of my life putting things on hold for pain and surgery, but this last six months of my journey, between my experiences with returning to a full life along with my experience with mental illness, have been by far the most difficult.

If you read my previous post, you probably pick up on a few aggravating symptoms: I was struggling to get the support I needed in the workplace in order to return to work, recovering from spine surgery and a year of chronic pain; I had just started a new relationship, was living between houses, had changes in my friendship groups and sometime just after I published this, I lost a family member. I am a big believer that life is not here to serve us, and that we just have to take each high and low as it comes, but I tell you… there has been a nice run of life challenges in recent months. So much so, that I don’t blame my pesky little pills for not doing their work properly. In hindsight, I don’t exactly know how I thought they would be able to do their job amongst all of that.

The symptoms I have experienced over recent weeks on the Dothep are not part of my normal symptoms profile for my illness, and quite frankly, I am glad of that. After sticking with the drug for three weeks to see if the symptoms evened out, I went back to the doctor just a few days ago and begged him to switch me back. I don’t know if this was the right decision, and I expect I won’t know for another 6-8 weeks. All I know is that Cymbalta was working for me for a time. In regard to my anxiety, I made the decision to change jobs at work to help reduce anxiety and it has made a huge difference. Despite my emotional state and feeling of general illness as a side effect of the Dothep, my anxiety is almost non-existent and I have had a number of people comment on my change in mood. This, along with the fact that I don’t think I could handle another 6-8 weeks trialling a new drug at this stage, makes me optimistic about returning to Cymbalta.

With all of this coming about over the last week, either by some strange coincidence or a serious case of Facebook hacking my Google analytics, I came across this article yesterday. The article by Mark Brown discusses research into anti-depressants from 2008 in which some scientists believed that the only real effect behind anti-depressants is just a placebo. Their conclusion being that, in the double blind trial that was undertaken on SSRIs, patients who took the real drug only experienced an improvement in their mental health as they noticed the side effects of the drug kicking in, meaning that the drugs themselves only produce side effects, and the presence of those in a patient’s awareness is what will enable them to get better on their own. This was widely reported in the UK in particular. However, new research has found that patients treated with either paroxetine or citalopram (the SSRI’s used in the study) report a larger reduction in depressed mood than those given placebo regardless of if they report adverse events or not.

In the last few weeks I have had a number of people close to me ask if I have ever thought about doing it “the natural way” by going off anti-depressants altogether. Believe me… no one has thought about this more than I have. Not only because I am big on making changes and taking steps in my life towards better health and wellbeing, rather than taking a pill, but also because the journey of anti-depressants has not been easy. It adds another layer of symptoms and possibility for things to go wrong, and nobody wants that. Basically, the studies show that anti-depressants work. They may not work perfectly, and the effectiveness of the drugs vary from patient to patient, but this is an illness that we cannot even cure with medications, let alone cure via any proven “natural alternative”, the stakes are simply too high to take the risk. As Brown states in the article:

“Few people want to take SSRIs for the hell of it; and since there’s absolutely no “high” associated with them, there’s little incentive to carry on if they’re not actually helping you function. And depression is an emergency.”

I do vehemently believe that, once diagnosed with mental illness, our life choices matter. They will no doubt affect the outcome and our ability to survive.  As they do all of us – mental illness or not. However, mental illness is still so widely misunderstood, or not understood at all in some respects, that anything that has been proven to help is important. I can choose to live well, make good choices, ensure I have a nutritious diet and exercise in my day to day life, regularly see a psychologist, practice behavioural therapy to manage the known triggers for my illness…. but I cannot manage my anxiety in full without medication. Because there are still, 3 years on, aspects of my illness that are unknown to me – triggers that are unknown.

The problems that I have faced with mental illness have all related directly to how little society understands about the illness and its treatments. This is bigger than just choosing to go natural or not, because the known treatments still have many flaws. I recently updated my previous post ‘Always in the ‘Back’ of my mind’ with a link to a national survey on mental health in Australia, which could help scientist fill in the gaps of with vital information about symptoms, causes and treatments for mental illness.

caityleidoscope If you have been, or are being, treated for anxiety or depression, and are living in Australia, I urge you to register to participate in a major study on the genetics of depression.  The Australian Genetics of Depression Study, which is the Australian arm of an international study created to understand the genetics of depression, is recruiting Australian adults – aged 18 and above who have been treated for clinical depression.

This study is a big deal for people like me. Based on using DNA to compare with symptoms, experiences and medical treatments, the more we come to understand about the illness and how it relates to each individual, the better off we will all be in finding manageable alternatives in medications. Perhaps we may even know more about preventing the illness before it is able to develop in those genetically prone to it.

So, if you are being, or have ever been, treated for mental illness, and live in Australia, I sincerely hope that you will join the study. It is becoming an epidemic that will affect generations to come at a greater rate than it affects our society now if we do not act.

If you would like to find out more about the study, you can listen to the great podcast by Lynn Malcom of Radio National’s “All in the Mind” program:

The genetics of depression

Or visit the website for the study here.

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Taking ‘Back’ Wellbeing

This being my first post, it will probably a long one, but the most important as hopefully it explains what inspired me to start it in the first place. Aside from my lame enjoyment of a good pun, I have named this blog ‘Taking ‘Back’ Wellbeing’ as it is about just that – how I choose to take back my  health and wellbeing in every day life, despite the challenges I have faced.

I’ve come to understand that my story is unique for a number of reasons. Not many people have had two spinal surgeries, and even less have had two by the time they’re thirty. I’ve also come to realise recently that my condition is pretty rare to health professionals, as many of the practitioners and specialists I see are used to seeing patients in their 60-80’s with injuries like mine. I was once told by a surgeon that if he didn’t know me, he would’ve thought the MRI of my spine belonged to an overweight removalist in his 40’s. I’ve come to know this man in his 40’s quite well over the years when my body is complaining and I find myself lying on my back in pain. This guy – who I’ve fondly named Eugene – with his mullet and a good sense of humour – has become my alter ego.

Thanks to Eugene’s “she’ll be right, mate” approach, I have managed to pursue a healthy and active lifestyle, despite my injuries. Following my first surgery, in 2013 I took up cycling to increase my aerobic fitness. Within a year Eugene ended up with a cycling coach, training 6 days per week for the development squad of an elite women’s road cycling race team. Prior to my first surgery, I’d never identified myself as someone with any kind of sporting ability. I played sports socially and was usually the class clown in dance class, netball or soccer. When I was 7 my mum signed me up to the school netball team. They assigned me wing defence (perhaps due to my excessively long arms), and I stood on the court counting the number of red cars passing… that is how interested I was in sports. Nobody threw the ball to me and I never really tried to catch it. Until one day when Miss Centre threw the ball with gusto directly at my head – to this day I still believe it was intentional. I wouldn’t play netball for many years after that.

First summit of Mt.Hotham with BOSS Racing Team in 2014. This was a huge achievement for me (and Eugene) after the first surgery.

But here I was, Eugene, a 28-year-old woman who others referred to as an “athlete”. I had overcome all odds to become a ‘Sporty Spice’, and for me this was a big deal. I love cycling for everything that it has shown me. Through cycling I experienced empowerment, self-discipline, self-love and respect, the feeling of setting a tough goal for myself and the rush you get when you achieve it. These were things that I had only loosely experienced in the past.  In recent years the skills I’ve learned through cycling have transferred into my injury rehab and management practices, and are what I consider to be the essential ingredient to managing an injury like mine, so that I can live an active and fulfilled life. I accept that there are some things I should not do if I want my spine to last the test of time, but I refuse to let my injury and my pain dictate my life, my pursuits and my experiences.

I am writing this propped up in a bed at my mother’s house on extended leave from work without much of a social life, recovering from my second spinal surgery in 5 years. This is the second time in my life that I have had to tap out of everything from work, social life, relationship, dreams, plans, travel – you name it. For now, everything is on hold. This is the second time in my life that everything in my day is about pain, sleeping, eating and recovering. Because that is all my body can handle.

At the finish line of the 2014 ACT Hill Climbing Championships after winning a silver medal in the Elite Women’s Classification 

More so than last time around, this surgery has been a really tough pill to swallow. I haven’t ridden my bike for almost a year now due to the chronic pain, let alone compete or train like I was. Cycling was half of my social life, and for the last year this has also been taken away from me. I’ve been forced out of doing the things I love – it bites the big one. They say that writing down your experience is a great way to help you heal, and I really feel like I need that this time around. So  after much encouragement from friends, this blog is my journal of healing. And maybe, someone reading this will take something from my journey that helps them with theirs.

‘Back’ to the beginning…

This all began seven years ago, in 2009 when I was involved in a car accident. I was t-boned on the drivers’ side, right between the front and back door. The impact lifted my seat out of place and my pelvis went with it.  My car was thrown to the opposite side of the road, in a 180-degree spin. I remember having my hair tied in a bun and the force of the impact caused my hair to come untied, throwing my hair-tie out the open window and onto the road. I remember this really surprising me, given how difficult it is to remove a hair-tie without using hands. I always think of this when I am trying to explain the severity of the impact.

I walked away from the accident feeling fine. I was a waitress at the time, working three labour intensive jobs and in my last year of study at uni. At first I noticed a tightness in my left calf and just thought I was overdoing it. But the tightness gradually intensified into stabbing pains behind my knee. After about eight months, the pain was so intense that I had been forced to resign from all three of my jobs.

Because of my young age – I was 23 years old at the time – doctors and specialists seemed to dismiss what could actually be the problem. At this point in my life, I wasn’t Eugene. Like most people, I knew nothing about my body or anatomy, and still passed off my car accident was no big deal, which probably didn’t help with diagnosing the problem.

It took 14 months to discover the injury in my leg was due to significantly bulged discs in my L5/S1 and L4/5 vertebrae. The discs were crushing my sciatic nerve to the left side, so much so, that by this stage I had lost the feeling in my left foot, and the back of my left leg from the calf up to the buttock. I could have held a flaming cigarette lighter on my skin and I would not have felt a thing.

 

Graduation day in November 2010. It hurt like hell to wear high heals with a spine injury, but I was determined to be just like everyone else.

I saw a number of Canberra surgeons and they all found that removing the L5/S1 disc completely and fusing the spine together was the only possible solution. They also advised against having this procedure, telling me that I was better off with the quality of life that I had – in my early 20’s, unable to work, unable to drive a car, unable to socialise, let alone have a relationship, start my career or travel the world.

I knew that this quality of life wasn’t for me. I didn’t want to spend the rest of my life in pain and unable to work, but I didn’t know who to turn to. I felt like I had taken my health for granted and now I would never have the chance to make up for it, and for this I felt ashamed. I was so desperate not to accept that this was my fate, that I made a deal with myself: “If I ever make it out of this mess, I will never take my health for granted again.”

“if I ever make it out of this mess, I will never take my health for granted again.”

As someone who had little experience dealing with the medical world, it took me a really long time to realise that, at the end of the day, a surgeon or doctor or anyone could give me advice, but any decision was ultimately my own. I sought second, third and fourth opinions until I came across a surgeon, Dr Ashish Diwan at St. George Private Hospital, Sydney.  Dr Diwan suggested operating without fusing my spine, with a procedure called a microdiscectomy.

I had a microdiscectomy in February 2011, almost exactly 2 years after the car accident.  The surgeon shaved off the part of the disc that was on the nerve, relieving the compression, and leaving the remainder of the disc intact. The remaining disc is obviously smaller and will struggle over time to take the weight of the vertebrae above it, but the aim of the procedure is leave as much of the natural anatomy as possible.

Releasing the pressure off the nerve meant that after 12 months, the nerve roots that had deteriorated causing the numbness in my left leg begun to grow back again. It started as pins and needles in my toes and calf, and after about a year I had full feeling and was able to press start on my life again.

The delay caused by consultations with surgeons meant that, by the time I found Dr Diwan I had lost complete control of several major muscles in my left leg. I still struggle to recruit these muscles to this day.

As a result of an undiagnosed genetic predisposition, the first surgery also resulted in deep vein thrombosis (DVT) in my right leg. This meant that I had to undergo months of treatment and spend longer immobile in bed. The DVT drew my recovery out from 8 weeks to 6 months.

I went through some of the darkest times of my life pushing through the  rehabilitation to return to normal life again. Injury, pain and rehabilitation is a burden. A constant daily struggle with your body and your mind – how to ignore pain, embrace pain and how to stop it. It’s a constant process of self-care in every minute of the day. None of it was easy. Add the symptoms of pain relief medication to that, and it was a tough three years.

A few hours after Surgery two in October 2016. I’m learning to revel in the silver linings of these difficult situation. There is always a positive if you are willing to look deep enough.

Whenever my body has forced me to ‘press pause’ on my life, like this very moment as I recovery from surgery number two, I find myself reflecting. Thinking about how this all started, what could’ve been if I didn’t have a back injury, reminding myself what I have and how lucky I am, and what’s next. Each time I come to the same conclusion – the car accident challenged me in ways that I could never have imagined. It forced me to grow up before I was ready.

It was one of the worst, but absolutely certainly one of the best things that has ever happened to me. It has molded me into the person I am and I have no regrets about it at all.