Saying goodbye to antidepressants:

What it's been like for me

Written for Mental Illness Awareness Week – October 7 – 14, 2018

I thought I would get back to writing my blog about living with a mental health disorder, specifically, what it’s been like to come off of antidepressants.

Part of my reasoning for undergoing all those rounds of Trans-Cranial MagneticStimulation, or TMS, was to be able to stop taking so many antidepressants. The idea was if the neurons in my brain could be stimulated and to make those feel-good chemicals (dopamine, serotonin, norepinephrine) naturally again, then I would no longer have a need to seek those chemicals from antidepressants.

Many people taking antidepressants refer to the “cocktail” of meds they take in order to live and function with their mood disorder. I have certainly had my own prescription cocktail of drugs over the past decade; everything from Buspar, Bupropion (Wellbutrin), Cymbalta, Klonopin, Abilify, Xanax, Zoloft, Lexapro, and Venlafaxine (Effexor), among others that I’ve probably forgotten. I have also had three rounds of TMS therapy – once in February 2015, again in the winter of 2016, and most recently, the winter of 2017.

I consider my TMS experiences successful because each time I did a round of treatment, I was able to either stop taking a drug, or the dosage of one of my drugs was significantly decreased. For example, after my first round of TMS in 2015, my psychiatrist reduced my Effexor from 300mg a day to 150mg. After the second round of treatment the following year, I was able to reduce the dosage of Abilify from 5mg a day to just 2 mg.

This summer was successful for me in that my mood was fairly stable. I was still sleeping during the day more than I’d like, but overall, I felt that my depression was fairly under control. I felt the normal sadness I feel with the onset of the fall season and the end of summer – my favorite time of year – but I have been through this so many times that I have come to expect it, and I now have things I can do to help ease the transition: trying to spend more time outside, getting out and moving my body a little more, making sure that I am making better food choices and cooking more meals at home, journaling, continuing talk therapy, etc.

I met with my psychiatrist again in late August. I was considering talking with him about the B-I-G question that had been on my mind for quite a while: “So doc, how about weaning me off of all of these drugs?” Now, I have several reasons for wanting to do so, some of which I’m not ready to share with the world, but one of them is that I simply want to remember who I am and what my life is like without the aid of so many psychotropic drugs. With the help of my health coach, I am working hard on replacing my “cocktail” with more natural medicine, mainly movement, stress management, sound nutrition, and a healthy sleep regimen. Now, am I successful at all of these things all the time? Of course not. But I am learning to celebrate the small wins. For right now, the important thing is that I have supports in place to help and guide me as I make this transition off of my medications.

After that visit with my doctor at summer’s end, I had a new routine. No more Abilify. No more Wellbutrin. I was told that I could stop taking those medications whenever I was ready with no withdrawal affects.

Coming off of the Effexor has been a completely different story. In late August, my doctor prescribed me 75mg/day of Effexor. This is half the dose of what I had been taking. I did not anticipate any problems. After all, I did not remember having any trouble when my daily dosage went from 300mg to 150mg. But for some reason, my mind and body were deeply affected by this most recent change.

The first 7 – 10 days of switching to 75mg of Effexor were some of the worst days I’ve had in a while. I was absolutely exhausted all the time; I spent a solid week in bed. No matter what I did, I could not get the rest I needed. My anxiety went through the roof. For the first time in a long time, I started having panic attacks. Real, terrifying panic attacks where I could not catch my breath. When mid-week rolled around and it was time to go to work for rehearsal, I just couldn’t do it. The thought of being in a room in front of twenty people for an hour and a half seemed insurmountable to me.

And then, there was the constant, unrelenting sadness of being alive.

My husband, who watched all of this unfold, urged me – begged me – to call my doctor. I was stubborn and proud and didn’t make that phone call. I felt that if I could just push through the next few days, I would be okay.

And I was.

After I resurfaced and was able to return to the realm of normal functioning, I decided to go visit my family in Indianapolis. It was my niece’s third birthday, and I had been collecting all things Peppa Pig to surprise her with on her big day. During my visit, my sister and I treated ourselves to a spa pedicure. I plunged my feet into the bubbly water and turned on the chair massager when I began to notice a searing pain in my feet. “That’s weird,” I thought. I brushed it off, but I couldn’t help but notice how painful it was when the woman began massaging my feet. And the pumice stone? Yikes - it hurt so bad! It was concerning at the time, but I was more focused on spending time and talking with my sister.

A few weeks later, I started noticing how bad my feet would hurt in the morning when I got out of bed. Those first few steps are pretty painful, and going downstairs to get the dog ready for her walk was pretty uncomfortable as well. I tried to brush it off again, but a few days later, I finally admitted to myself that the pain was getting worse. The best way I can describe it is the beginnings of neuropathy: my feet are tingly and more sensitive than usual. Sometimes, I feel shooting pains when I lay in bed at night, which makes falling asleep (and staying asleep) difficult. Sometimes, my feet even feel hot and burn. Then there are times where I don’t have feeling in my feet, especially in my toes. I was getting scared. I thought neuropathy only happened to people with diabetes, and thankfully, my numbers are pretty good right now.

So, I consulted the doctor one night – Dr. Google – and read that warm, tingly, sometimes numbing feeling in the feet can be a symptom of withdrawal from Effexor. I came across a helpful forum on the Mayo Clinic website where I read several peoples’ accounts of what it was like for them to come off of Effexor after years of taking the drug. Many of these accounts could have been mine, which was comforting.

The next day I called my psychiatrist. His advice was to stop taking the Effexor immediately and begin taking Klonopin twice a day for 10 days until the symptoms went away. I was pretty discouraged. I wasn’t sure what the doc would be able to do for me, but I was really hoping that he wouldn’t throw more pills at me, which was exactly what he did. I ended up trying other things to help relieve my symptoms: warm Epsom salts baths, aroma therapy/essential oils, walking around in my bare feet, wearing socks and comfortable, breathable shoes, over-the-counter pain medication, CBD oil, massages, etc. Nothing really worked; I still went bed and woke up with pretty significant pain.

I finally ended up going to my family doc. He examined my feet and as I winced in pain he said, “Yep, that’s some plantar faciitis; you’d better get rid of those flip flops.” He wrote me a prescription for a heavy-duty ibuprofen and sent me on my way. I drove straight to Fleet Feet, spent some serious cash on some super cushy athletic shoes and threw my flip flops in the trash (sad!) Since then I’ve tried to incorporate a lot of stretching and heat therapy into my routine. I spent a good week feeling pretty frustrated, defeated, and pissed-off. Here I am trying to get healthier and this news felt like I was taking ten steps backward. After a good bit of moping around, I began confiding in a lot of people who deal with plantar faciitis & have discovered that it can go away overtime.

The most interesting thing in all of this is what started as withdrawal symptoms ended up as a new diagnosis. I discovered that Effexor is sometimes prescribed for pain, so it was likely masking the symptoms of plantar faciitis, meaning who knows how long I’ve been walking around on bad feet – in flip flops!

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I would not change my decision to go off of my meds. It has been the right choice for me at this point in my life. Now, is this the right choice for everyone? No, of course not. Is there anything wrong with needing to take psychotropic medication? Absolutely not. Despite my love-hate relationship with my meds over the years, they helped me navigate some very dark times and helped me function, keep a job, and maintain important relationships despite living with debilitating, chronic depression. Will I need them again? Who knows; maybe. Will I stay on them for 10 years again if that happens? I hope not, but…?

I try not to dwell too much on these questions and instead spend more time getting to know myself again. It has been interesting to get back in touch with my emotions; for so long, I just felt so numb and flat – so…medicated. Now, I have been able to reclaim feelings I haven’t had in many years. Today when I was driving home, I happened look up and saw the sun shining so spectacularly through the leaves on a tree that was completely golden. I started to cry. I was filled with gratitude as I celebrated a new awareness that I have not known for so long. For so long, I missed the beauty of the fall because fall was just a gateway to the winter – a season where everything is gray, cold, and dead. But of course, things are not dead. The trees may not bloom and flower like they do in the spring and summer, but under the ground, in the cool and dark of the dirt, stuff is happening. Life is regenerating itself. Nature is taking the rest required for spring rejuvenation.

This is what being on meds and coming off of them has been like for me. I may have spent a lot of time hibernating in the cool of darkness, but there were things happening in the stillness: my mind was resting. My brain was healing.

But now, I am awake. Really awake. So awake, it almost feels manic, ironically.

Thanks be to God.

Is remission from depression possible?

The psychiatrist that I've been seeing for over two years keeps a picture in his office that looks like this:

I glance at it every time I go to see him and wonder if my brain truly resembles something like the picture on the left. It looks like the lights are turned out, as if the brain is stuck on a dimmer switch after years of enduring depressive symptoms. I can actually pin-point each little highlighted area as an avenue in my life that is relatively high-functioning despite my depression: my relationships, my work life, my creative life, and the time I spend thinking about my goals and dreams.

Not all depressed people can say that. 

I often consider what my life would be like if my brain was fully alive and on fire like the picture on the right; brightly lit up and glowing with possibilities and promises. Changes. Challenges. Growth. The stuff of personhood. The way I would live my life everyday if I could.

Then I think about how I often feel in the day-to-day: The numbness. The void of emotions. The afternoons wasted in bed. The cancelled brunches with friends. The missed meetings and appointments. The excuses that follow. The weight-gain. The constant negative monologue that has taken residence in my brain. The frustration. The "I'm not good enough's" and the "I never will be's." The debilitating guilt and shame. And the medications - so many medications!

I recently told my doctor that it feels like I experience a low-lying level of undulating depression most of the time. My medications have to be adjusted every 3 - 4 months just to keep me functioning at the level I need to fulfill my current responsibilities. If not, I'll crash and have been known to become suicidal. This can't be an optimum way to live. 

One day at my doctor's office, after complaining again that my medications just weren't cutting it, he told me about a procedure called Trans-cranial Magnetic Stimulation, or TMS. It's a relatively new procedure that has developed over the last 5 - 10 years. 

My understanding of TMS is that it is a non-invasive treatment for types of depression that do not respond well to antidepressants. It can also be used with patients who experience unbearable side effects from drug therapy. It utilizes similar technology as an MRI, hence the non-invasive classification. The patient sits in a dentist's office-type chair where a large plastic headband is placed over the head. The metal coil, which distributes magnetic pulses, is placed directly over the patient's prefrontal cortex, or the part of the brain that is thought to control one's mood along with many other things. The magnetic pulses are supposed to stimulate and eventually retrain the neurotransmitters in the brain that have forgotten how to make essential brain chemicals such as dopamine, serotonin, and norepinephrine.  The treatment is administered for about 45 minutes. As the magnetic pulses are delivered, the patient feels a repetitive tapping sensation on the head. The patient can go back to work immediately after receiving treatment. 

TMS is not ECT, or Electroconvulsive (shock) Therapy. There is no need for general anesthetic, and there is no risk of memory loss. In fact, the side effects for TMS are minimal: pain at the sight of the metal coil, headaches, and muscle twitches. Most of these are known to disappear after a week or so of treatment. Treatments have been known to last for as many as five days a week for six weeks in a row.

My doc said that about 1/3 of TMS patients experience complete remission from depression. Many are able to go off of their antidepressants entirely. Some are able to cut down to one maintenance-sized dose of medication. 

Good Lord, sign me up.

Pending my insurance's approval, there is a good chance I could begin TMS treatment in early 2016, as my doctor said I was a good candidate. Not only does medication not perform as it should for me, I've experienced several undesirable side effects along the way. It's been six long years of drug therapy. Now I'm ready for another chance. Something new, something with potential. 

TMS could be a solution for me. On the other hand, it may not. In the meantime, I will remain hopeful for the future and thankful that I have insurance that will most likely help me cover the cost of treatment.

Until then, be well, be kind, and hope on.

To our health,

h. 

A 'Saintly' Tribute

They lived not only in ages past,

there are hundreds of thousands still,

the world is bright with the joyous saints

who love to do Jesus' will.

You can meet them in school,

or in lanes, or at sea,

in church, or in trains,

or in shops, or at tea.

for the saints of God are just folk like me,

and I mean to be one, too.

-John Henry Hopkins

November 1 was All Saints' Day.  (I'm particularly aware of these things because I work in a church).  On All Saints' Day, we remember and honor the dead - all of those who have walked the earth, served in their communities, and gone before us.

*     *     *

The past few weeks have been beyond difficult.  A series of consistent and often drastic ups and downs, followed by a series of strictly down days - that's the best way I can describe it.  My doctor has already changed my medication once during this time, and he will most likely change it again before the Thanksgiving holiday.

I just want some consistency, some small measure of control, God forbid - one tiny ounce of predictability!  I'm tired of feeling agitated all the time.  I hate it when a single incident sends me into a spiral that I can't find my way out of for sometimes a period of days.

On the brighter side of things, during this most recent series of episodes, the people who are closest to me insist that I have begun to handle my depression differently than I did even six months ago.

Good news, right?

All I know is that when I am at my lowest, the idea that any of it is different (the feelings and emotions themselves or how I handle them) seems impossible.  At these moments, all I can feel is the pain and the confusion that comes from feeling like I am somewhere else - that "other" place I retreat to and never know when I'll return from.  

The hope in all of this is that with time, and with the tender care I am so fortunate to receive from others (and from myself, occasionally), I always emerge.  Sometimes the knowledge that whatever I'm feeling at the time will most assuredly not last forever is hope enough for me.  

*     *     *

With the coming and going of this year's All Saints' Day, sure, I thought about those people I don't see anymore and how they touched my life.  Then it occurred to me that there are "saints" walking among us everyday.  These are the people who graciously give of themselves to others, those who love fiercely and unreservedly:

The family who calls to check in with you when they know you're going through a bit of a rough patch.  

The group of friends who drop by in the middle of the day to sit and laugh with you when you just can't make it out of the house.

A long-lost friend from the past who messages you with words of kindness and encouragement out of the blue.

Yes, friends, there are saints among us.  I know this because I live with one of them.

*     *     *

When my husband and I first started dating, I was constantly afraid that I would push him away.  I feared one day he would wake up and decide that carrying on a relationship with me was just too much to handle.  I alluded this fear to him one night through tears, to which he said, "I can always stay with someone who is struggling..."

...because a struggle ultimately implies growth.

We live.  

We experience.  

We fail or we gain.

We learn.

We shed a skin or two.

We emerge - changed.

We set our feet out on new ground and forge ahead.

Living with depression is a constant struggle, but if I live by my own words, it also means that I am in a constant state of growth.  

It's terrifying sometimes, but I'm pretty sure it's the way to be.

My husband sees it all.  The good, the bad, the ugly, and the UGLIER.  He experiences all of it in his own way.  We often talk about what it means for him to live with and love a depressed person, and furthermore, what does it entail for the depressive to acknowledge the painful experience her partner feels at the same time she is experiencing a pain all of her own?  

This creates an awful notion; one that makes it increasingly difficult to confide in him, even though he insists that it is helpful when I do this.  Sometimes I think to myself, "Could I be more of a burden to him?"

It's understood that spouses or partners will take turns taking care of each other as life takes its own series of twists and turns.  But what happens to the relationship when one person in the partnership must intensely care for the other person over a prolonged period of time?  

I want to scream every time the word "caretaker" gets thrown around.  It peppers our (sometimes heated!) conversations as well as our sessions with our couples therapist.  I want to cry out, "I WANT TO TAKE CARE OF YOU, TOO!  REALLY, I DO!"

The hard truth is that sometimes, I can't.  I just can't, and after all of the venom and the tears and the silence of the aftermath, I have nothing left but to say, "I'm sorry.  I'm so, so sorry."

I'm sorry that I spontaneously cried into my omelette during Saturday brunch.

I'm sorry that sometimes, no matter how much you try to care for me, all I can hear is blame. 

I'm sorry that when I am cycling through my depression, I often can't make room for your pain, although I know it's there.  I do.

Most of all, I'm sorry that sometimes, I'm just not here.  

*     *     *

So the struggle continues - but so does the growth - and in the midst of it all, I give thanks for saints.  For family, for friends, and for husbands whose capacity for patience, mercy, strength, and love is the very stuff of sainthood.

To our health,

h.