Most people who know me fairly well would probably agree that I’m an open book. I’m quick to jump into personal conversations with nearly anyone, because I really can’t stand surface level chitchat. This also might be why (although decidedly an extrovert) I don’t love to be in huge, public groups where I’m expected to partake in quick, distracted, often meaningless exchanges with people who probably don’t genuinely want to be talking any more than I do… but I digress.
As a musician & artist, I feel the innate urge to share my thoughts, feelings & experiences more than some, and typically don’t struggle to do that. My Instagram is full of random pictures from my day-to-day life, sporting“clever” captions with the mundane musings of a twenty something, and “witty” hashtags that seek to gain attention from the millions of others just like myself, in a vain attempt to elbow out a space for ourselves in a digital world that simultaneously seems to be getting smaller and more expansive every day.
All of this sharing, this “open book” of a lifestyle, and yet, it occurs to me that I haven’t been completely honest or transparent. I’m doing anyone who “follows” me such a disservice by allowing them to believe that what I post on social media equates to my life. That’s why I’m writing…
Today as I was walking my sweet dog, living in the moment, enjoying the beautiful day and feeling so grateful for all that I’m blessed with, it occurred to me that I’m finally beginning to feel like myself again after what has been a pretty terrible season for me. Don't get me wrong - I have an amazing family & friends, a boyfriend who loves and supports me, and a lifestyle that I’ve chosen to lead, doing exactly what I want to do. And yet. I have been battling what is easily one of the worst seasons of clinical depression in my life to date. Bet you couldn’t find that on my Instagram.
I will preface the next part of the story with this: Please don’t think this is my attempt to glorify my own struggle. My purpose in sharing this deeply personal journey is quite the opposite; to shine a light on the fact that so many (almost 20% of Americans, actually) are struggling through mental illness right now too. So many people that you know are currently living in their own versions of hell that nobody else can even perceive from the outside. And by the way, mine isn’t over. It may never truly be, but the best I can do is to share what I’ve been through and what I’ve learned so far as I continue to fight for my own happiness, and hopefully, spread some awareness.
I told you all I was an open book, so instead of being selfish with something that may help you or someone else, here goes nothing…
My parents described me as a “serious” child… calculating, deep thinking and concerned. Make no mistake, I had a really fantastic childhood, had lots of fun, let loose and played & laughed with the best of them, but deep down I don’t believe I was ever completely care-free. I had severe panic attacks when my parents would leave me to go out of town (I wouldn’t eat, I was terrified that their plane would crash and they wouldn’t come back, etc.) and I worried and worried about so many things, when a child with her health and security shouldn’t be worrying about much at all.
This plus probably more that I can’t remember, all led to my first few therapy sessions early on with a guy whose laugh haunted me (and does to this day…) and my poor parents trying to do what they could to “get their Emma back.”
Eventually, I grew out of the severe anxiety phase, and leveled off for the most part during my preteen and early teenage years. I definitely still maintained the serious side of my nature, but found an outlet in the form of plenty of newfound passions that I developed throughout that period. I had lots of energy to channel into horseback riding, soccer, softball, tennis, singing, dancing, theater, lacrosse, cross country… you name it, I’ve done it. (and if you do follow me on social media, you’ll notice that a few of those stuck ;) )
Without getting into too much detail about every “season” of depression I’ve gone through, I’ll say there were a few in high school, then college, and even post-college that definitely presented me with some dark days. Calling my mom to cry would always lead to the same broken-record plea: “Emma, you need to schedule and appointment with a therapist- I’m just not equipped to help with what you’re going through as much as I wish I was.” I think I resented that I couldn’t help myself as much as I did admitting that I needed to see a doctor. This went on for years- me denying myself the help that could’ve changed my entire outlook in those difficult times. A large part of denial stemmed from the fear that if I did admit something was wrong, it was weak, and not normal. I wanted to be “strong” and deal with it alone. I didn’t want anyone else to know I was going through something that was so realistically out of my control.
However at 23, I finally had matured to the point of accepting my lifelong on-and-off struggle, and accepting that I could gracefully seek to help myself. I was going through a pretty bad depression phase, and was paralyzed in trying to make the decision to quit my current job in search or something more fulfilling. I consulted a psychiatrist briefly, was prescribed my first “anti-anxiety/anti-depressant” and finally felt empowered to make a series of decisions to move forward with my life. After moving back to Greensboro a few months later and settling into the comfortable routine of going out with friends and picking up another corporate 9-5 job, I decided on my own to go off the medication, because after all, I didn’t feel depressed anymore.
Fast forward to 25- (fall of 2015). It had been about one year since fully quitting my corporate job in the pursuit of making & performing music full-time. I was so happy to be doing what I loved, living life on my own terms, and dating the best guy in the world. But steadily, without notice or invitation, in crept the foreboding signs of an all-too-familiar dark cloud. Having been through seasonal depression (or “Seasonal Affective Disorder”) so many times in the past, I knew it was coming on (strong), and not wanting it to have any grip on my otherwise happy life, I decided to be proactive this time. I sought out a new psychiatrist in Greensboro that would take my insurance, and promptly made an appointment. I was wary at first that only the PA, not the actual psychiatrist, could see me, but didn't think much of it, and after a too-brief interview on my history of mental health, was somewhat hastily prescribed the generic form of Cymbalta. I was out the door, prescription in hand, and took my first dose that same day. I was going to kick depressions ass this time.
In retrospect, I should’ve listened to my gut a bit more regarding that initial appointment. I didn’t leave feeling totally ensured he had been thorough enough in getting to know me as a patient or my history and causes of my particular anxiety/depression. As you might imagine, there are many kinds of anti-anxiety, anti-depressant drugs with different classifications, uses, side effects and withdrawal symptoms. Every patient is different – it can take multiple rounds of trial and error for a doctor and patient to find a drug that will be the best fit long-term. I suppose that because I had no adverse side effects (except for a little excessive yawning in the beginning, go figure) with my first drug, I would be good to go on the Cymbalta. This wasn’t really the case.
I did my research at home, read up on Cymbalta’s side effects and horror stories (there are always those “extreme” cases that seem unlikely, but I thought I should educate myself nonetheless). However, I pretty much immediately could tell I was going to have a handful of these adverse reactions to the medicine. I figured I’d fight through it though, because it probably still beat being depressed. For reference, some of the things I was going through at first included: excessive yawning (again), lethargy, lack of appetite, sleep deprivation, extremely vivid and frequent nightmares, occasional blurred vision, memory loss, and a generally constant feeling of being in a “fog.” I chalked most of it up to letting it settle into my system and continued to take 60mg/day- what I later learned is no small dose.
It wasn't until I started training for my second marathon with my boyfriend, Tyler, that I realized some side effects were more scary and intense than others. One Sunday, about 30 minutes after we finished our 14-mile training run, I suddenly felt overwhelmingly nauseous. I ran to the bathroom and thought I was going to be sick. I suddenly started seeing spots and got to the floor so at least if I passed out I wouldn't fall. I then did get sick, and didn’t feel any better, so I made my way to the bed to lie down until the feeling passed. For the next hour, I was in a terrible cold sweat, my hands tingling, insides hurting badly and terrified that I didn’t know why. After I recovered, I didn’t quite realize the root cause. I thought maybe just general dehydration, so the next week I made sure I was ultra-hydrated for my long run. To no avail- I had another episode. More research… maybe not enough sodium? Another long run, another episode. Finally after my 16-mile run, and yet another day spent in bed, I had to give in to my body and give up training. It wasn’t really until Tyler suggested it that I thought maybe the medication was behind it.
Brief medical note- I have Bradycardia, a condition that basically says my resting heart rate comfortably sits below 60, and once last summer, a heart monitor revealed that it reached the low 30’s while I was sleeping (yikes?). When I did some of my own research on Cymbalta, I read somewhere that it had been prescribed in some cases for Tachycardia, the exact opposite of my condition. Needless to say, I finally deduced that recovery after running, combined with my medicine, was causing me to have dramatic drops in heart rate and blood pressure, resulting in these physical episodes. After discussing this and the other side effects with my GP (not the original psychiatrist) we agreed I needed to taper off of this medicine immediately.
This is unfortunately not quite where the story ends. I noticed there was a lot of information out there on what the FDA affectionately named “Cymbalta Discontinuation Syndrome” and ways that desperate sufferers were experimenting with to taper off. My doctor suggested taking half my dose of mg’s of the drug every day for a week, then trying that same dose (30mg) every other day for a few weeks and seeing how I did. Again, maybe naïve to the reality of it, I believed I wouldn’t have these awful withdrawal symptoms I read about.
Wrong again. If it wasn’t the constant headache, jitteriness, “brain zaps” (when you experience the feeling of a literal electric volt running through your body/head), exhaustion, forgetfulness and continued sleep deprivation & nightmares, it was the terrible depressive mood swings.
In all of the times I’ve been depressed, I’ve never experienced the like of the episodes I had in Cymbalta withdrawal. With little warning and hardly a trigger, sudden, terrible feelings of incompetence, hopelessness, and dare I say nearly suicidal thoughts would come over me. I was inconsolable. The worst of this only happened two or three times, but it was enough to scare the daylights out of me- I’d never felt such extreme bouts of emotion before.
More research on my own. It’s not recommended to take it every other day because of the inconsistent amount in and out of your system. It’s practically taboo (in the world of co-suffers’ and secret Facebook support groups I’ve found) to go “cold turkey”- it’s actually referred to as completely dangerous and even reckless. I discovered the method most suggested for coming down off of this drug was the “bead” method. You literally open the capsule, count the number of beads, and methodically, strategically decrease your own milligrams according to the number you’re tapering to, until you can come all the way off.
This brings us to today. Right now, I’m on 10mg daily of Cymbalta, (down from my original 60) which I now know is about 62 beads in a capsule, which I count out every morning over coffee. I’m finally not feeling much in the way of dramatic symptoms or withdrawals, but I am told that when I completely go off I will feel them again for a few weeks. Here’s to hoping they’re not as bad.
I struggled with whether or not to include all of the weird and extreme details of my experience with this drug, which for me, was awful, but ultimately decided that a) if someone else has experienced this or is currently, now they know they aren’t alone and b) to reiterate the realities in the struggle of someone dealing with mental illness. I am not the only one who has had to come down off of a medication that didn’t work for them, and I probably didn't even have it as bad as some. I also don’t want to imply that medication to treat these illnesses is a negative. Sometimes I think it’s the only way, and for some, Cymbalta may be the answer, who knows. I simply want to share everything I’ve been through for whoever it may help, and whatever benefit may come of it- good, bad and ugly.
I’m certainly not the first to say it, but I will anyway: it is imperative that we as a society make a concerted effort to lift the stigma of mental disease. The reality is that lives are lost every day to mental illnesses more treatable than cancer or heart disease. In fact, suicide is within the top 10 leading causes of death in the US (CDC.gov). People are tortured from within on a daily basis and feel like they can’t tell anyone or are scared to seek help. Even those who are trying to fight it with medicine and therapy are in many cases STILL obscured from their friends and family by a veil of shame and fear. Cancer patients and their families meet in support groups and hold fundraisers and speak on TV and fight brave battles in the public eye with oceans of emotional and financial support for their journey, but those of us who struggle with mental illness are crippled in fear, isolation and misunderstanding. Why aren’t we as a society in the 21st century doing better to solve this? Why are those of us (one in five Americans) suffering not holding hands and at least supporting each other?
That in essence, is my purpose for this post. I want to extend my hand to those of you who might need it. I want you to feel empowered to seek help for yourself. I urge you to ask for that help, and I implore the friends and family of those affected to make yourselves anchors of support, love and encouragement. I’m so lucky and so blessed with the support I have, but I don’t for one instant take it for granted, knowing how much effort and time it has taken to get to my own personal place of acceptance for this journey. It’s still not easy, and I have bad days, but I continue onward and upward in understanding and grace for myself and for my demons.
It goes without saying, but I’ll give you a gentle reminder anyway- treat everyone you meet with kindness, empathy and love; you never know what’s going on just below the surface.
Thank you for reading & happy spring,