What it’s like to treat a mental illness

This morning I rolled over at 7:40am — just about my normal natural wake-up time these days — but with a strange feeling that there was no way I could get out of bed. I felt nailed down. I couldn’t open my eyes. My dreams had been extremely detailed and lucid, about infiltrating a coworking space in Corfu where they were extremely tight-fisted with the amenities as I wasn’t a member, but a guest, and my parents had to basically parachute in to save me. 

“Hm,” I wondered to myself. “I wonder what could have caused these strange dreams?”

Perhaps a glass of wine at the comedy show we went to? Perhaps the cold and allergy medicine I’ve been taking the past few days? 

I woke up an hour and a half later with the realization that I was dreaming so lucidly because I had forgotten to take my antidepressant medication the night before.

What tipped me off was that I woke up to an orgasm.

This may sound funny or sexy or fun for some of you. But I can assure you, it’s actually terrifying. This kind of orgasm is caused completely by chemicals in my brain over which I have no control. There is nothing I can do to cause them or stop them intentionally. They are not tied to physical attraction or stimulation and they feel icky and weird and scary. 

I’d felt them before in the years I had been taking Effexor in New York City, if I missed a train or stayed at a beau’s place, I’d wake up with these, maybe on a friend’s couch, and it was never anything less than terrifying.

The travails of taking medications for your sanity

I was speaking with a friend the other day about the medications we take for our mental illnesses. I’ve known her for years but hadn’t discovered she was diagnosed as bipolar until this summer. She has a steady, full-time job that she’s doing extremely well at. She’s meticulous about not revealing her diagnosis to anyone who doesn’t need to know, or whom she doesn’t trust more than 100%. This means she didn’t disclose the illness to her most recent employer when she started, even though it was listed as a “disability” on her intake forms. This is a risk she chose to take because this is her life, her privacy is important, and she doesn’t want to be treated differently at work for a disability that is for all intents and purposes completely invisible, when managed properly. On the other hand, should she be fired for something like what I went through today, she’ll have little legal recourse to claim discrimination. 

I have the luxury of working for myself. I don’t have to worry that I’ll be fired for my diagnosis, or the pills I’m taking, or if I miss a pill and have to take a day off. It’s possible that a client may balk at my openness here, and that’s fine: we shouldn’t be working together if this bothers you, because I think it’s important. I’m in a very privileged position in spite of my disability.  I’m happy to write about it, because I think people don’t necessarily understand what it’s like to not only be diagnosed with an illness of the brain, but what it’s like to try and treat it. 

I see friends post memes on social media about what it’s like to be depressed. Here are the chemicals that are in your brain when you’re depressed, one meme read out. Here’s what it feels like to be depressed, in a longform poem, or maybe an entry on Elephant Journal about how hard it is to just keep living. Here are the differences between high-functioning depression and other disorders.

I have myself posted articles about what it’s like to be depressed, and how subtle it can be, or infuriating, or defeating. 

But I’d like to talk about what it’s like to be treating your mental illness, because sometimes that seems almost harder than having the illness to begin with.

The cost of finding the right treatment

“It cost me $300 to see my psychiatric nurse practitioner for the first visit,” I told my friend during our chat about our medical travails. “And then $150 for each follow up appointment, each month.”

My insurance does not cover these appointments. I tried to find an in-network psychiatrist or prescribing professional, but the only doctors that my insurance listed as in-network were available for inpatient appointments only. Meaning, I needed to be hospitalized before I could find a prescribing psychiatrist.

I would have simply had my GP prescribe the meds for me; in fact, she did for the first year. But we reached the limits of her knowledge. She ran out of ideas because it wasn’t her specialty.

All I wanted was a drug that allowed me to get out of bed and work. That was it. I didn’t even want something with fewer sexual side effects or that wouldn’t irritate my ulcer. I would live with nausea, suicidal ideation, dizziness, mania, whatever. I just wanted a drug that eased the depression and didn’t make me feel like I needed to sleep 16 hours a day. 

The NP that I go to was recommended by my therapist and nutritionist in my eating disorder treatment plan (also not covered by insurance; also $300 a month split between the two of them). She’s wonderful. She listens. She has ideas. 

She prescribed Viibryd for me, which is a new medication and doesn’t have a generic. Allergan, the pharmaceutical company that produces it, provides prescribing professionals with starter packs to help their patients out in the beginning, and varying amounts of monetary support to help patients be able to afford the medication. 

I started on a step-up starter pack (meaning I took a low dose for a week and then upped to the next level). I also had a coupon to get a free month of Viibryd from my pharmacy. After that, I was armed with a coupon that would discount the cost of the monthly refill by $325 as long as I still had commercial insurance (which doesn’t cover Viibryd, but often has negotiated lower rates). After all of these items were applied to my prescription by the pharmacist in the correct order (and saying the magic words, I’m sure), I was told that I would pay $155/month for Viibryd going forward.

That was a lot. I had a crisis of faith. 

“But,” my fiance said, “if it was cancer medication, we wouldn’t think twice. You need this. It’s the first drug that’s worked. We’ll find a way to afford it.”

When I returned to fill my prescription this month, the price had jumped to $455, even after all the coupons and insurance were applied. This was a bridge too far. I’m already in debt from how much I’ve had to spend finding the doctors to help me. I could not justify the expense. 

I asked my NP for help. 

“We should switch to Zoloft,” she said. We had discussed this. Zoloft was the first pill I was prescribed when I was 20 years old. I don’t remember what the side effects were, except that I was jumpy for the first few days. I do remember that I switched from Zoloft to Wellbutrin a few years later, because of the sexual side effects. And that Wellbutrin hurt my stomach, even before I’d been diagnosed with a stomach ulcer.

“Alright,” I agreed. “However, I’m leaving for Albuquerque in two weeks and I’m getting married in three. I absolutely do not want to be coming off of or starting anew on a psychotropic medication during my wedding. I have 18 days left of the medication and 21 days until my wedding, and 26 days until I’ll be back in Austin.”

So she gave me two more starter packs to get through the time until I can safely return and start tapering off.

This was not something I wanted to spend eight hours figuring out on a weekend, I can assure you. I am relieved to think that I’ll be going on a med that only costs $15 through my insurance per month. I’m not relieved to wonder what side effects I’ll have. 

Try it with six medications and a prescriber in another state

My friend who was diagnosed with bipolar years ago has an even more complicated medication story. 

She has been taking the same six medications to keep her sane and functioning for several years. Unfortunately, she has not been able to find a diagnosing physician since she moved to Texas. She is paying completely out of pocket to have her previous physician in another state write her a prescription each month. It costs $350 to see him via telemedicine (all out of pocket). However, he cannot prescribe medications to be filled in Texas; she has to have a trusted friend fill the prescriptions at her old pharmacy and mail them here. To make matters more interesting, these are controlled substances, and she can’t fill them sooner than a few days before her previous prescription runs out. 

Luckily, some of the prescriptions are generic, so she pays less for them. But there are still six of them. She has a high-paying job, but most of her paycheck goes to student loans and healthcare. Her entire life circles around the availability of these prescriptions, when she can fill them, how she can pay for them, and remembering to take them.

The missed dose

The consequences of missing a dose are more dire than you might expect. If you miss a birth control pill, you take it as soon as you remember. You might be a bit more careful for a week than you would otherwise. You aren’t immediately pregnant. If you miss a dose of an antibiotic, you take it as soon as you remember and go back to the regular dosing schedule. The plague doesn’t take over your body and murder you immediately.

If you miss a dose of a psychotropic medication, you are worthless for an entire day, or more. 

Here are the symptoms of abruptly stopping that I experienced this morning:

  • Hallucinations, both visual and aural
  • Extreme sleepiness, to the point of being unable to wake up
  • Lethargy
  • Dizziness and vertigo
  • Nausea
  • Mania
  • Inability to conjure words or concentrate
  • Feeling like I’m stuffed in cotton
  • Sexual side effects (see above)
  • Low mood
  • Flatline feeling
  • Suicidal ideation
  • Tremors
  • Lucid dreams
  • Sleep paralysis
  • Restlessness
  • Heart palpitations
  • Sweating
  • Dry mouth
  • Dry eye
  • Headaches
  • Muscle aches
  • Constipation or diarrhea or both
  • Prickly skin sensation

This is from missing a single dose by about 8 hours. If I continue to miss the dosage, I’ll have brain zaps, flu-like symptoms, uncontrollable crying, and more. (I took the pill as soon as I figured it out. It took an hour to kick in. My stomach is on fire. My head hurts. I am wrapped in cotton and completely useless.)

I absolutely cannot work in this situation. I know that any work I produce for a client would be horrible. And so I end up losing an entire day, or maybe more.  

Missing a dose is not a common occurrence. There were extenuating circumstances that led to it last night: I have been taking cold and allergy medicine that’s thrown off my usual routine; I had put my medications in a drawer so the cleaning ladies could dust and I didn’t have the visual cue I normally have before going to bed; I’ve been a little preoccupied with wedding planning; we went and saw a show with friends last night. 

At the same time, I have been coming off of or starting up on meds so often in the past year, and these symptoms happen every time. New meds wreak as much havoc as tapering off old ones. I have not been myself for more than a year, and that’s on top of the depression that was already making my life weird.

And I’m one of the lucky ones, with supportive colleagues, friends, and family members, and enough flexibility to sleep through a day or two without losing my job. 

So consider, I think, the consequences of not just admitting you have a mental illness, but trying to treat it. Imagine having to wrestle not just with your brain telling you everything is wrong, but a complicated world of insurance payments and begging to get the drugs that you know work for you in a timely manner that won’t destroy your entire world. 

This rambling piece of junk writing was brought to you by missing a dose of Viibryd, once.

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