Medication sickness

I’m “sick” today — not with anything contagious — but with flu-like symptoms from trying (again) to decrease my dose of Mirapex. I had tried this last month and chickened out when I started feeling so lousy, but I’m trying again now in order to be finished with these withdrawal effects before classes start. (I’m not necessarily aiming to go off of Mirapex completely, but hoping that lowering the dose might stop me from compulsively grinding my teeth all day, a problem that I’ve clearly developed as a side effect of the drug.)

As I wrote recently, I find the temporary side effects of ketamine to be minimal compared to what I’ve experienced on FDA-approved medications. So while I have my Mirapex sickness on my mind, I thought this might be a good time to describe what I have been through with some of the medications I’ve tried. After all, feeling sick is a relatively mild withdrawal effect compared to the intense self-injurious urges I experienced while withdrawing from Nardil, and remembering this may help me maintain a sense of perspective.

  • Abilify: Pronounced weight gain (and when combined with Nardil, an inability to sleep for more than 2 hours at a time even with sleeping pills).
  • Ambien: After about 10 years of taking it, I suddenly started doing odd/scary things while asleep, like trying to cook or dye my hair.
  • Effexor: Compulsive tooth grinding, chronic GI problems, tension, sleeplessness, and headaches if I was even slightly late to take my next dose. Years ago I spent several months trying to slowly taper off of Effexor, and still, the headaches I experienced were unbelievable. I was only willing to use Effexor again when my doctor promised that to go off of it, I could first switch to a related medicine not associated with such severe withdrawal. (She had me switch from Effexor to Fetzima, and then withdraw from that, and this process was fine.)
  • Emsam (the MAOI skin patch): I was allergic to something in the adhesive, so I’d get an itchy red rash under the patch that would remain several days after the patch was removed. After 6 weeks of using Emsam I had patch-shaped red rash marks pretty much everywhere.
  • Imipramine: persistently dry mouth and sleepiness (with no clear benefits)
  • Mirapex: compulsive tooth grinding, flu-like symptoms while reducing the dose
  • Nardil: For a while this medication really helped me, and having limited options I was on it for years despite seriously annoying dietary restrictions and numerous side effects. My side effects included sudden leg cramps while sleeping, micro-sleeps during the day, fainting upon standing, hands and feet losing circulation (one time resulting in a bone fracture in my foot), hospitalization for a blood-pressure spike caused by eating soy sauce, intense dreams, chronic GI problems, and trouble sleeping. The withdrawal effects were also unexpectedly severe; I experienced extremely intense urges to injure myself, intense enough that I often couldn’t resist. The timing of this was very clear: several days of self-injurious behavior started each time that I decreased my Nardil dose.
  • Navane: Unexpected lactation requiring carrying around an extra jacket.
  • Parnate: Feeling feverish and weak for about 1-2 hours after taking each dose. And intense dreams that had me frequently yelling and kicking in my sleep. I thought this drug helped so I stuck with it for several months, but the side effects never went away.
  • Paxil: Nausea, GI problems, feeling emotionally numb and really spaced out (with no clear benefits)
  • Prozac: Anxiety/tension and GI problems (with no clear benefits)
  • Wellbutrin: Trouble sleeping. And also a seizure, that happened right in the middle of giving a presentation during graduate school.

Ultimately, medications have been helpful for me — sometimes a little and sometimes a lot. But living with this stuff sure isn’t easy.

Are we getting something out of this all-encompassing trip?

I am in my late 40’s with a Ph.D. in clinical psychology, working as a relatively new college professor. Most people in my position are nearly 20 years younger than me, but that’s because along the way I lost a lot of time.

I first remember long periods of inconsolable despair at age 4.  I was prescribed antidepressants at age 8 — and this was in the 1970s, when the available antidepressants were more dangerous and it wasn’t common for people to take them, let alone talk about them. My parents threw the prescription away and also refused to let me go for counseling. I kept getting good grades, so my parents probably figured my problems must not be too serious. My father said it was just that I acted too weird, and he thought he could cure me of that with enough criticism and frequent fits of rage.

Leaving my high school friends for college was very hard. I started going to the college counseling center, and they recommended therapy several days each week. (My father said I was being selfish, wasting money paying someone to talk to me because I couldn’t make real friends.) After a period of starving myself and experimenting with faster ways of ending my life, I decided it was time to try medication, but it didn’t help me as much as I needed it to. Late at night I would sometimes try to study in public areas, because I was afraid that back in my room alone I would be unable to fight the urge to hurt myself. My college eventually decided that it didn’t want responsibility for me, and I was no longer allowed to live in the dormitories. With nowhere else safe to go, I admitted myself to the hospital. It was clear that moving back home would not be good for me, but I was not ready to live completely independently. So I was eventually discharged from the hospital to a residential program for adults with severe and persistent mental illness. From there, I resumed college classes and applied to graduate school.

Over the next 25 years I tried just about every medication and psychotherapy available. I was never really free of depression, social anxiety, OCD, and nightmares — but usually managed to get by. MAOIs and IPT both helped me through some very rough times. Then a few years ago I was offered my dream job — a tenure-track faculty position in an excellent department — and I decided to take it. My symptoms got so much worse, and I was hospitalized. Though ECT caused memory problems it did help for a while. But after that I was back to hating myself and unable to get out of bed, even while taking a ton of medication.

Ketamine treatment

Since the spring of 2015 I’ve been regularly receiving ketamine infusions (in addition to some other medications, therapy, nutritional supplements, and exercise). Within days after my first infusion it was as if a light had been switched on somewhere inside that had been always dark before. Suddenly I was able to feel at peace with myself, and do things, without paralyzing self-doubt. Ketamine treatment isn’t covered by insurance, and the effects of each infusion only last a few weeks, but since this actually works I plan to stick with it until I have other options. To stop hating myself after 40 years is not only really expensive, but priceless.

I live quite far from the nearest ketamine clinic so about once each month I travel all day to get hooked up to an IV bag, and let the medication drip into my hand while spacing out and listening to “Present tense” on repeat through headphones. The infusions are typically very peaceful and pleasant. Sometimes I feel my fingertips against the chair arm and can get fascinated by that. Or stare at my hands. Often I find that something will make me laugh, just because it is a little strange. Like when I see the leaves on the tree outside blowing, and for a split second they look like they are waving at me or waving along with the music, though I still know that they really aren’t. After an hour it feels like I’m waking up, feeling progressively more alert and less dream-like. And an hour after that I feel enough like my usual self to leave and get on a crowded train.

At my treatment session last week my doctor and I decided to try increasing the ketamine dose to see if maybe this might help the benefits last longer. This was the first time that I’ve felt more than mild psychedelic effects and it was so similar to movies about psychedelic trips that it was almost like a cliché. I thought I could see myself as a tiny dot among millions of moving and flickering dots. I could see the dots interacting with each other, and I also saw some of them disappear. I was certain that this image represented life, and that the only significance of each individual dot was what it meant to the others around it. But soon after seeing what I thought was the meaning of life, I saw my own dot disappear. I sat there stunned, believing that my little story was suddenly over.

I realize that what I experienced under the influence of ketamine last week was kind of like a dream, and no more important than a dream, but it felt so much more real and has lingered in my thoughts. All week I have found myself anxious about my mortality (which is highly unusual for me), and also grieving for the years I lost.

I wish I could tell my younger self to hold on and believe that a life worth living is possible. Not that living with my illness is easy — even now that I’ve finally found a treatment that really helps, maintaining my mental health takes a lot of work. But the difference is that now my life actually matters to me. I want to stay and make my time here count.

References:

About ketamine treatment for depression:

About IPT: https://en.wikipedia.org/wiki/Interpersonal_psychotherapy

Present tense (Pearl Jam, 1996) : https://www.youtube.com/watch?v=Tlx3GPsRD9M

Present tense (Lyrics)

Do you see the way that tree bends?
Does it inspire?
Leaning out to catch the sun’s rays
A lesson to be applied
Are you getting something out of this all-encompassing trip?

You can spend your time alone, re-digesting past regrets, oh
Or you can come to terms and realize
You’re the only one who can’t forgive yourself, oh
Makes much more sense, to live in the present tense

Have you ideas on how this life ends?
Checked your hands and studied the lines
Have you the belief that the road ahead, ascends off into the light?
Seems that needlessly it’s getting harder
To find an approach and a way to live
Are we getting something out of this all-encompassing trip?

You can spend your time alone re-digesting past regrets, oh
Or you can come to terms and realize
You’re the only one who cannot forgive yourself, oh
Makes much more sense, to live in the present tense

Let’s see tomorrow*

*There is indecipherable chanting at the end of the song, and “let’s see tomorrow” is just how I hear it.