Two years: I don’t take this for granted

It has been two years since I started ketamine treatment, and it is still working.  I’m currently dealing with pretty extreme job pressure/stress, and managing it better than I managed most ordinary, day-to-day tasks before ketamine. I don’t take this for granted.

I travel for an infusion every 30 days. To make the treatment last for the time in between, without dealing with the cost of off-label nuedexta or the hassle of finding a compound pharmacy to make a generic version of it, I’m currently taking dextromethorphan 30 mg (Robitussin Long-Acting CoughGels sold on Amazon) along with a little bit of Paxil (5 mg) twice each day. Paxil causes me terrible GI upset and does nothing for my depression, so the only reason I take any at all is to help extend the effects of the dextromethorphan, which in turn helps extend the effects of the ketamine.

I’m sharing these details because too many disbelieve that ketamine is a real, long-term option for living with depression. It can be. For me it is.

Going for depression treatment, not for tripping balls

I’m traveling nearly all day today to visit my doctor for a ketamine infusion, as I’ve been doing approximately every 3-5 weeks. I don’t look forward to doing this, so I tend to procrastinate on making the appointment and feel a bit anxious the night before, just as I would with an appointment for dental work or a mammogram. But I continue doing it because it has helped keep my feet on the ground (rather than in a depression hole) for most of a year, something no other previous treatments were able to accomplish. When weighed against the risk of falling back in that hole, the risks associated with this peculiar and poorly understood treatment are a reasonable trade-off in my case. If I had a less serious depression that could be reasonably managed any other way, the cost-benefit ratio would be much different and I wouldn’t be doing this.

I certainly don’t do this because I want to. The treatment sessions were interesting at first because they feel so different from anything I’ve experienced in waking life and I’m a generally curious person, but I have no desire to keep repeating them. If there were a way to get the benefits of this treatment without the hour of dissociation I would absolutely choose that. It would be so awesome if a ketamine metabolite (or something similar) could be developed as an antidepressant with the same benefits and lack of daily-life side effects as monthly IV ketamine – but with no trippy infusion, no needles, fewer risks, no traveling, lower expense, and no drug-abuse stigma. But at this point in time, empirically supported alternatives like this are not available.

Now, just in case you are one of those people who is going to try to tell me that taking much smaller doses of oral or intranasal ketamine at home on a frequent basis is a good alternative to monthly IV ketamine in a doctor’s office, I’m not going to consider that until I see some research evidence on the effectiveness and safety of this approach for treating seriously depressed human patients. At this point in time there is NOT EVEN ONE published study evaluating taking ketamine at home, and my disorder is too severe for me to voluntarily take a chance on a remedy without empirical support. Yes, there is one study to support doctor-administered intranasal ketamine, so I do have the option of traveling all day to dissociate on that every month in a different doctor’s office. But why? The IV treatment is working, and I have no good reason to switch. I’m certainly not going to switch just to avoid having random strangers label me as a self-destructive drug abuser.

The drug abuse stigma many people seem to attach to my depression treatment is hurtful and to the best of my knowledge, unsubstantiated. Yes, there will be irresponsible clinics administering IV ketamine more readily than they should and some patients will end up abusing it — but that risk also occurs with many other medications (including anxiolytics, stimulants, sleeping pills, and the currently available forms of oral/intranasal ketamine). If you are one of those people who is going to feel compelled to tell me that IV ketamine poses a uniquely unacceptable and stupid addiction/abuse risk, I’m going to need you to cite empirical sources to explain how this risk (a) is worse than with the many addictive medications patients can use unsupervised at home, and (b) outweighs the benefits of the treatment.

Some of the scary claims being made about the addiction risk of  IV ketamine treatment — in unmoderated discussion forums and in obnoxious comments that people have unsuccessfully tried to get posted on my blog — could easily be the basis for an updated ketamine-centered version of the 1936 movie Reefer Madness, with subplots that sound like paranoid conspiracy theories. Even when the people making these claims are doing it out of a desire to protect the public from harm, their Ketamine Madness story overlooks how harmful depression can be without effective treatment. It also overlooks how harmful it can be to stigmatize others for their health conditions and healthcare needs.

Stigmatizing IV ketamine is likely to prevent depressed and suicidal patients who have run out of other treatment options from getting potentially life-saving help. And if mental health professionals share these stigmatizing attitudes, they’ll be pushing some of their most desperate patients to take the underground route of seeking the medication from a sleazy clinic with inadequate psychiatric care and frightening consequences. For many of us with severe, treatment-resistant depression, IV ketamine may be the last or best available option we have while waiting for research to develop better solutions. We need doctors who are open to working with us and to helping us make safe, reasonable decisions about ketamine. We need the support of our families, friends, and other communities when we pursue treatment. Stigma is probably the last thing that we need.

Saying what goes unsaid

I’ve stopped writing because I can’t stand the sound of my voice, hate everything I say, and hate myself for saying it. I’m finding it hard to want to talk, and whenever I do I spend a lot of time afterwards regretting that I let any of this nastiness out where other people have to hear it. I’m finding it especially hard to work as a professor because so much of this job is conveying (convincingly) to students that what you have to say is interesting and valuable.

I tried not to let this happen. I’ve been through several medication changes in the last month, trying to stop it. So far that has only made things worse because one or more of these medication changes has been keeping me from sleeping.

I’m afraid that I’d lose my job if anyone knew how close to the edge I’ve felt a lot of the time. I also can’t (convincingly) argue that I wouldn’t deserve to lose my job, but I’m not even going to let my thoughts go down that path right now. My only option is to keep trying to pretend that everything is normal and that I’ve got it all under control.

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, feeling emotionally numb and really spaced out (with no clear benefits)
  • Prozac: Anxiety/tension (and 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.

It was my depression that was treatment-resistant, not me.

Several months before deciding to try ketamine infusions I had genetic testing intended to identify which treatments might be more effective for me than others. The expensive tests were only partly covered by insurance and it is still unclear to me, six months later, whether I may have to pay a balance of over a thousand dollars.

The results said that SSRIs would not be effective, and that I’d be prone to gaining a lot of weight on drugs like Abilify. Believe me, I already knew both those things!

But the genetic testing helped me quiet the self-doubts I’d internalized over years of interacting with people who see patients with treatment-resistant disorders as if we’re somehow choosing to be “difficult.” Like it was my fault that I had a seizure on Wellbutrin, that over time the MAOIs stopped working, that ECT caused so much cognitive impairment, and that so many other treatment attempts didn’t help. A few psychiatrists described my treatment-resistance in terms of “personality issues”.  Though childhood emotional abuse and prolonged illness can certainly influence one’s personality, what these doctors were saying is code for something much worse. That I’m the type of patient who frustrates them by not getting better; the type they don’t like to bother with or take seriously.

The effectiveness of the ketamine infusions, combined with the results of the genetic testing, make it perfectly clear to me that the medications I was being given didn’t work because they genuinely weren’t right for me — NOT because I chose (consciously or unconsciously) to make things difficult! The doctor who provides my infusions even reassured me that most of his patients for whom ketamine makes a big difference have complicated histories (including abuse and multiple disorders and so on). It mattered a lot to me that for once the varieties of pain I’ve lived through weren’t being seen as another strike against me.

Hopefully you don’t need to pay for genetic testing to learn this lesson: If you’ve been giving your prescribed treatments a solid chance and they’re still not working, don’t blame yourself or give up hoping for something better. None of us deserves that.

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.