Please enjoy these photos of sleepy kittens while I express my frustration with my psychiatrist.
I saw my psychiatrist today for the first time since my narcolepsy type 1 diagnosis. I knew what her reaction was going to be when I told her and I should have put on my big girl pants and gotten ready for it but I went in like a fool expecting her to be sympathetic. Spoiler alert: she was TOTALLY UNPHASED. In 20+ years of working with psychiatrists, I’ve never found one I trust. I think they’re weird, pill-pushers, and I’m unclear about what they’re supposed to do besides give me my script for a highly regulated and addictive drug. For years in college I searched for a psychiatrist I could trust and every appointment was the same:
Them: “Why are you here?”
Me: “These are my symptoms…”
Them: “That sounds like ADHD / seizures / bipolar disorder / migraines / anxiety / depression / PMDD / panic attacks.”
Me: (I’ve heard all of these before and ADHD meds work the best) “Cool let’s do ADHD.
Them: “ok what type of meds do you need?”
And then I would prescribe my own meds through this esteemed psychiatrist’s prescription pad. If I was too anxious, I would decrease my dose of stimulants. If my stimulants stopped being effective at 4 pm, I would use a short acting stimulant (e.g. Ritalin, adderall) to get me through the important study hours. I knew how to titrate my Vyvanse in juice so that I could have a more or less potent dose depending on my needs for the day.
Stimulants are a super fun and convenient class of drugs to be on: they cannot be called into the pharmacy, must be picked up each month at the prescriber’s office, and require visits to the doctor every three months in order to continue the medication. Regulations differ across states so a prescription from my psychiatrist in VA cannot be filled in MA if it was written more than 7 days ago, which is how I ended up without medication for two weeks in Bahstun.
During the transition from undergrad to grad school, my pediatrician prescribed my meds and my mom would pick up and fill the scripts in Illinois and mail them to me each month. Thank you, Mom! But alas my pediatrician kicked me out of his practice at the ripe old age of 23 and there was a fire drill to find a new prescriber. (To be fair, I think he gave me 18 months or 6 years of notice, but most things in my life are fire drills which is what happens when you sleep. sleep. sleep. sleep. sleep…and don’t wake up until there’s a crisis.)
So I found a new prescriber. During our first appointment she said “Vyvanse is a long-acting medication so the afternoon dose of Ritalin is unnecessary and borderline abusive given your diagnosis.” (Emphasis added.) I know this, but I also know that Vyvanse doesn’t seem to be long-acting for me (BECAUSE NARCOLEPSY). I was persistent so she agreed to increase my dose of the long-acting meds and I got to start grad school without the regiment of meds that I had perfected over the previous 15 years. AWESOME.
I gave the increased dose of Vyvanse a try: my medicated anxiety increased, I couldn’t eat, and I felt like I was having a heart attack for the first 4 hours of every day. And then I would get in 4 hours of work before it would wear off at 4:15 pm, a 15 minute improvement over the previous dose wearing off at 4 pm . The Fantastic 4-4-4 as I call it. If this isn’t a recipe for success as a grad student I don’t know what is. Do I sound bitter? I’m a little bitter. So that’s how I’ve existed for the past 6 years which brings us to today.
What I wanted to say when I went into her office was:
You know how I tell you in each appointment that the “all-day” stimulant you prescribe me starts wearing off around 4:15 pm and I get tired and can’t focus and my eyes burn so I can’t get my work done? And my peers stay at school and work and I’m just totally asleep? And then you say “it’s an all day stimulant so you’re doing something wrong. If you’re tired set an alarm, take a nap, and then get up like a self-respecting grad student.” Remember that? Well I have FREAKIN NARCOLEPSY. Severe. Textbook. Narcolepsy. And no amount of napping is going to replace the 70,000 neurons that my body killed when it thought it was protecting me. And you totally missed it and I’m pissed and sad and scared and all of the things.
She was unphased and I suppressed my urge to kick her in the shins before stomping out of her office. My eyes started watering with sadness and anger and profound frustration. Was this really the best care available to me. I’ve tried other psychiatrists in my area and unfortunately she is indeed the best care available to me. I swallowed the lump in my throat, crossed my arms, and tersely gave her the updated details of my medications as if I were a grumpy 3-year old after throwing a tantrum:
How much Vyvanse are you taking?
I don’t take it anymore.
I take Nuvigil.
Because it’s approximately 238473849576348689240293483209482374 times better.
Oh really? Why is it better?
Well for starters it keeps me awake throughout the day and I no longer spend the first third of my waking hours having a sweaty heart attack.
That sounds like an improvement that the Nuvigil doesn’t make you as anxious and allows you to stay awake, she parroted back to me. YEAH YA THINK?!!! What else?
I started Xyrem on Monday.
How much xyrem do you take?
I take 1.25 grams twice a night.
You mean milligrams? And you take two at the beginning of the night?
No. I mean I take Xyrem. So I DRINK a diluted solution of 1.25 GRAMS of sodium oxybate with 1/4 cup water. And then I go to sleep and 4 hours later I drink the same mixture AGAIN.
I asked her if she treated other patients on Xyrem, and the resulting medicated anxiety, depression, and panic attacks that might come as I ramp up to the therapeutic dose over the next 6 months. She said “yes” and I thought “shit really? Because you just incorrectly corrected me by saying a) “milligrams” and b) “you mean you take 2 at bed time” and c) asked me which pharmacy I get my Xyrem at and that’s NOT A THING.” Xyrem is handled with all of the care of a live grenade due to the fact that it is actually GHB aka the date rape drug. Xyrem is overnighted to me from a central pharmacy every month and followed by 10 phone calls with nurses, pharmacists, reimbursement specialists, and brand ambassadors to make sure that nothing was tampered with in my shipment, that I understand the lifestyle changes that go along with my new medication, that I understand how to use it, and so that they can read paperwork at me for 30 minutes to cover their ass. And I only have this privilege because my sleep neurologist and I are enrolled in the Xyrem REMS program which is required by the FDA. So “No. I don’t pick up my Xyrem at CVS.”
This post doesn’t have a resolution. Maybe I’m a brat for being a grouchy 3 year old. In her defense, she was the 413th of 418 doctors to misdiagnose and mis-medicate my narcolepsy but we gotta do better. I’m pissed. And I’m committed to doing better. Next week I’m going to announce a project I’m working on that I need your help with.