Since November I’ve been weaning off Effexor 75mg. I’m just milligrams away from being medication free and wanted to share some thoughts about the experience.
After posting my last blog about embarking on coming off anti-depressants, I was overwhelmed with emails from people sharing their stories – whether first or second-hand experience. I was enriched and warmed by the response, the support and the bravery of people’s openness. Thank you for your brave contributions. It showed me we are not alone. There are so many people out there who battle through mental illness, or are close to someone with a mental illness. It’s far more common than we realise. It was vulnerable opening up about coming off my medication, and I feared the consequences. But to my wonderful surprise, with vulnerability and openness came connection (as Brene Brown says in her TED Talk). It opens communication, support, connection to our human experience. I thank everyone who has supported me through this part of the journey, the messages, checking up on me, boldly sharing experiences. It’s made it all the more doable. And now, only weeks away from going med free, I’m more excited than ever.
It’s been an interesting journey. A challenging journey, but also a rewarding one. I ponder the topic while I’m splitting pills each morning…
Brief recap: I went on anti-depressants in 2011. I had been sinking into a depression of sleeping, binge eating, disconnection, lethargy and perhaps an existential crisis. Alongside therapy, the doctor put me on Effexor. It helped kick me in the right direction and after a year I felt ready to come off them. But when I tried weaning down over a couple of months from 75mg to 37.5mg a day, then down to one pill every 48 hours, I found myself riddled with withdrawals, suicidal one day, fine the next, straining my relationships and career, till I relapsed and the doctor advised I go back on the medication. I have been on the meds 4 years.
Last November I decided to come off the medication and under medical supervision began decreasing. It’s always a question of when… when is the right time? When you’re feeling good… is it you? Or is it the meds? And when you’re feeling good do you really wanna jeopardise that by messing with what’s working, messing with the meds? And how do you cope with ordinary day-to-day stresses… as well as reducing meds? Living in a better environment, new friends, new love, and a new understanding of myself and the tools to handle life, I figured now was a good a time as any to come off the meds, and the doc okayed this.
This time I’ve done it a little differently. I decreased a LOT SLOWER, exchanging one 75mg pill for a 37.5mg pill each week (ie. Week 1: 7 x 75mg, Week2: 6 x 75mg + 1 x 37.5mg, Week 3: 5 x 75mg + 2 x 37.5mg … and so on…). Depending on what was happening in my life, I slowed this process down furthermore – ie. Live album recording, new relationship, needing a break from withdrawals.
But the next decrease was more challenging…
The thing is… drug companies don’t make any dose lower than 37.5mg of Effexor, yet there’s a label on the packaging that says “Do not stop taking this medication abruptly” as withdrawals would be almost unbearable with a high chance of relapse. So how does one do it safely and effectively?
I’m quite disappointed drug companies don’t provide safer/smaller doses and information to help people come off the medication. I suppose, in my now sceptical opinion, it’s to stop people coming off so they can make more money from people, and ultimately it’s not financially viable for them to manufacture lower dosages. It’s got me thinking about how these drugs are marketed to us and to doctors. Doctors/pharmacists seem quite uninformed and unsure about how these drugs will affect us when we’re on them, how to cope with withdrawals and side effects, and how to successfully and smoothly come off these pills, yet these medications are handed out like candy. It’s scary to think we know so little about medication, the brain, and how they interact. My weaning off attempts have been nothing more than trial and error.
This time, I was advised to split pills. I split 37.5mg in half. But when I began reducing by the same method/rate: Week 9: 7 x 37.75mg, Week10: 6 x 37.5mg + 1 x 18.25mg, Week11: 5 x 37.5mg + 2 x 18.25mg… I couldn’t handle it. I found myself on the roadside throwing up after a gig, throwing up at night, headaches, restlessness, spasms at night, irritability, crying. It seemed that when I introduced the smaller dose one day and remained on the current dose the rest of the week, my body was going “WTF!” It never really got the chance to get USED to the next level cos the process was perhaps too slow and disjointed. I took 6 weeks off reducing the meds, staying on 37.5mg/day as my body desperately cried out for relief from withdrawals. From there, I split pills to create a 1/3 dose (25mg) and went straight on that, one third every day, rather than introducing it slowly/disjointedly. A couple weeks later I went straight down to 18.25mg. Now I’ve begun counting beads within the capsules and am down to 13.5mg. It seems going straight onto a lesser level is the way to go, none of this alternate dosages for alternate days business. I now wonder if the process could have been smoother had I started splitting pills between the jump from 75mg to 37.5mg
It’s somewhat nerdy, but I’ve been graphing my progress over the months. This graph below shows my daily mood (red) 1-10 with 10 being the happiest of moods. The blue shows the daily dosage of Effexor with 1 representing my original dosage of 75mg and 0 representing nil (with everything in between). I’ve found a mild correlation between the dosage change and mood. When I remained on the same dose for 6 weeks my mood was far more stable. When I introduced a lesser dose, the following day was often lower with multiple side effects. The changing of meds certainly threw things around. But over the months I’ve begun to realise the complexity of our wellbeing with the interplay of exercise, social interaction, career, period, PMT, falling in love, trauma/stress, diet, vitamins, and perhaps a psychological expectation or anxiety of what might happen, that perhaps overall this graph doesn’t show much at all other than a human living life….
It’s certainly been a rollercoaster of a ride. I’ve had periods of tearfulness where I cry at beautiful things, cry at nothing, cry at stressful things, cry cos I’m scared, cry cos I’m happy. I’ve had nausea, vomiting, severe headaches, neck and shoulder pain. I lined my house with notes of encouragement and reminders to call friends if ever I had thoughts of suicide… but thankfully I haven’t had them at all. I’ve had times where I feel like I can’t handle the smallest of challenges, or the mere sniffling of some inconsiderate person in the library.
But I’ve learned just to ride them, just to feel them, ride the wave, go through it, it won’t last forever. I’ve also had feelings of elation, happiness, being in love, enjoying TASTE and TOUCH far more than ever before. My partner is a psychologist, but beyond that she’s a nurturing, empathetic woman, and I recall climbing up Mt Buffalo and stopping to have a cry. She held me and told me I’m doing really well. Those mere words empowered me and created a safe place for me to just weep till I no longer needed to weep. She says perhaps coming off the meds is like lifting a blanket that has numbed my feelings, both good and bad. And that perhaps now I am forced to face feelings I didn’t face 4 years ago, forced to FEEL feelings I didn’t let myself feel 4 years ago.
We have this perception that happiness is something we can obtain, something to aim for and possess, living happily ever after. But in fact that’s not what being a human is about. Being a human is about feeling. Experiencing the fullness of what it is to be human. FEELING sadness. FEELING happiness. FEELING anger, frustration, irritation, fear, loneliness, joy, boredom, ups, downs. FEELING it. Acknowledging it, moving through it, understanding it won’t always be this way.
One thing is for sure: I was on 75mg Effexor. I’m now on 13.5mg Effexor. And I feel great! I feel alive. And I am so determined to be medication free. It leaves me with a lot of questions about my mental health and medication. Medication certainly has its place, and there’s often the argument that mental illness requires life long medication just like asthma or diabetes. For some, medication is vital for quality of life and to go without would make existence nearly impossible. For others it can be a kick in the right direction, a little extra help while getting back on track. Other times, I think pills are handed out like candy with a trial-and-error approach to finding the right medication/brand/solution/dosage for that individual – so many people can experience worse symptoms than before they were on the meds. There are so many grey areas, so many uncertainties in our understanding, so many questions.
For me, I question… Did I ever really need medication? Was the doctor looking for a quick fix that was ultimately just a blanket for the human experience? Could my mental health issues have been helped some other way, with some other combination of things, more exercise, therapy, diet, yoga? Did I come to rely on meds, fearing coming off them? Do drug companies enhance fear of coming off them with the endless list of withdrawals so you remain on their product? Or did meds give me the necessary leg up 4 years ago and guide me in the right direction? Was I not ready to come off 3 years ago, or was the method of coming off an unrealistically drastic method suggested by drug companies to set you up for inevitable relapse? Is my success now because I am READY now, or because I listened to my body during the process of weaning off, and tailored the reduction to suit the rate at which I was comfortable decreasing the medication?
We all have our different experiences, and I feel for those who have also been battling anxiety, depression and other mental health issues as we battle trial and error with drugs, side effects, quality of life, stigmas and more. I’m by no means qualified to be handing out advice on this, but I just wanted to voice my experiences in the hope that it might open communication and help us feel connected as humans.
As I plough strong towards the finish line, I say thank you so kindly for your support, for checking in on me during these 5 months. Huge thanks to my friends and family, especially my loving partner for riding the wave with me and being a rock when I could not, for your words of wisdom, your grace, letting me be who I am, feel what I feel. And thanks to Sal for your DAILY picture messages of encouragement over the last 150 days (dedication!).
Love to know your thoughts and experiences if you’d like to share them.