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 15 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.

Starting over

I’m starting 2017 with a new doctor, not because changing doctors was something I wanted or planned to do, but oddly enough, because of politics. Sure, when looking at ongoing treatment for a chronic illness you have to expect the unexpected — but not usually things like this!

I’ve known for a while that my (former) doctor and I didn’t have the same political opinions — but why should that matter when receiving medical treatment from a caring professional? He had an annoying tendency to talk about Trump before/after my infusions as if this was ordinary small talk, and though that bothered me, I put up with it. Then at our last appointment he started complaining (gloating?) about how many of his liberal patients had been calling him in a crisis soon after the U.S. presidential  election. I can’t swear if he actually used the word “crybaby,” since I was still feeling effects of ketamine, but I am certain that was what he meant.

I knew I couldn’t feel comfortable calling him for help after that, whether or not my depression/anxiety was directly related to election results. If I’m going to be depending on someone to help me with this illness by sticking me with needles and giving me incapacitating drugs, I need to be able to trust that they’ll behave like a caring professional.

So I started looking for another ketamine provider, and I’m lucky that new options have become available since I started this treatment nearly 2 years ago. My new doctor is still very far away from where I live, and the routine is pretty much the same.  I don’t know what this doctor thinks about Trump or liberals and hope they never tell me.

No comment

A month ago I stopped participating in discussion forums about ketamine because I was finding them too stressful.  It was disturbing to me to see desperate people asking for and receiving medical advice from random strangers on the internet — because apparently they don’t have a doctor to ask (and sometimes don’t even think they should have to have one). But I also got really tired of having to defend my treatment and how I feel about it to random strangers. The worst are the ones who know just enough about ketamine research to express their opinions using scientific jargon, and then talk down to me when I don’t accept that kind of ‘splaining as a substitute for real empirical evidence.

My recent post “Going for depression treatment, not for tripping balls” was written largely in exasperation with posts by fans of intranasal/oral ketamine, who are for some reason personally invested in hyping up alleged dangers and problems with IV ketamine. (It seems inordinately important to them to believe that their treatment is better than IV ketamine, and to distinguish themselves from IV ketamine patients by characterizing us as stupid, risk-taking drug abusers.) Even after I left the discussion forums to avoid this shit, I’m still frustrated by people trying to post comments of this nature on my blog!

Comments are welcome here, but ultimately, this is my personal blog about my own experiences, not an open discussion forum. I don’t need to give equal time on my blog to whatever concerns you may have about the treatment that is saving my life. Since I don’t work for a health insurance company, I have no interest in using my blog to promote the obviously profit-driven (rather than science-driven or patient care-driven) views these companies have about ketamine treatments. Finally, I will not post comments that make broadly scientific-sounding claims without providing any actual references to published research. Moderating open discussions responsibly is hard, too hard for me to be willing to take that on now. But I’m also not willing to let my blog become a vehicle for spreading stigma and misinformation.

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.

Ketamine for depression: Tough talk and a warning

Ketamine infusions aren’t anything like going to a spa or meditative retreat for rejuvenation, deep insights, or personal growth. They are a medical procedure for a serious illness, with many similarities to going for ECT.  I feel the need to say this because as someone who really believes in the future of this treatment I think a lot of the public hype about it is becoming dangerous.

People seem to be expecting ketamine treatment to be the definitive answer for their suffering when nothing in life really works that way.  They are waiting to experience some kind of sign during or right after their infusions, rather than understanding that all recoveries require time, effort, adjustments, and so on. But more frightening is the related tendency for people to downplay the need for psychiatric supervision while receiving this treatment. Depressed people are being tempted to seek help from anyone who can administer ketamine without seeming to realize how risky this is. Too many are relying on internet forums for crucial information and support because they lack sufficient professional care. And some of the patients doing improvisational ketamine treatments with inappropriate providers don’t seem to have exhausted other proven options, such as psychotherapy (or TMS, ECT, and so on). Taken together, these trends are very alarming.

Doctors need specific expertise to be able to provide ketamine treatment effectively and safely. They also need to be closely monitoring your mental health, overseeing all your various medications, and addressing your questions/concerns (or communicating with a mental health professional who has responsibility for these aspects of the treatment).

If your depression is severe and treatment-resistant enough to require an experimental treatment like ketamine, it is definitely serious enough that you need psychotherapy and/or another form of careful monitoring by a mental health professional. Please, the possibility of hospitalization ought to be kept in mind, at least as a back-up plan, if you are thinking you need to start this treatment. That people’s first impulse is instead to find some doctor willing to play around with giving them ketamine as part of an uncharted and incredibly expensive do-it-yourself project suggests that the hype about ketamine being a quick and easy miracle cure has gone way too far.

I understand all too well that people suffering from depression feel very desperate. And I know that some of the doctors hanging up their shingles as ketamine providers genuinely believe they are going to help these people (and not just cash in on their desperation). I am just afraid that people are going to end up getting really hurt.

Getting lost while running in circles

Dissolving into the universe to wake up disoriented and far from home is just the most outwardly visible part of the exhausting journey I’ve been taking each month. When it works, I get to just be, for a few weeks, in the world where I imagine that most people regularly reside with solidity and the possibility of stillness. But depression starts settling back in, slowly, silently, persistently. The initial signs are subtle, but before long the accumulated weight of it is unmistakable. Now things are starting to go undone and come undone; I’m disappearing into my own fog, with dread and terror piling on fast. I’ll be back on the train for another infusion soon, because maybe I can still be found and rescued again. I’m trying to hold on to that hope, despite my fear and self-recrimination about having tried to build a life on a foundation of quicksand. And I’m tired out from how far I have to go just to try to stay.

Ketamine dreaming

It will soon be year since I started treatment with ketamine. Though it may well be the miracle many of us with treatment-resistant depression had all but given up waiting for, learning to live with ketamine still takes trial-and-error and time, just as with every other medication.

After learning that with this treatment it is actually possible for me to be relatively free from depression, I learned that maintaining remission can nevertheless be difficult. Beyond the need to keep going for infusions every 3-6 weeks, I discovered the hard way that taking clonazepam regularly can prevent the infusions from having much effect. (When high stress at work had me taking clonazepam at least daily, I became increasingly depressed, and quite scared about that.) Thankfully, ketamine did start working for me again once I got off of clonazepam, but now I’m adjusting to receiving a higher dose. Whereas I found the treatment peaceful and pleasant at lower doses, I find it draining at higher doses — a lot like when you have such vivid dreams that you wake up exhausted.

One of the ways the treatment is different at higher doses is that it takes much longer to be functional again afterwards. Trying to get up, leave, and catch my train on what had become my usual schedule, I started feeling surprisingly groggy and not quite in control of myself. This made me start worrying a lot about how I may be coming across to my doctor and other people while in this strange state. I also started feeling quite hung over the next day, and I don’t know to what extent this is a physical effect of ketamine or a psychological reaction to the intensity of the whole procedure. The twelve hours of traveling, the intoxicated interactions, and the rapid, colorful, dream-like experiences during the treatment can all add up to be quite a lot for someone as introverted as I am.

It is like this: first my teeth and fingertips feel strange, and there is a sort of metallic taste. Now that I’m on a higher dose, noticing these sensations is often my last reality-based thought for the next 45-60 minutes, and the signal that I’ll soon lose the ability to do anything (such as change the song on my mp3 player). I’m certain that the music I choose to listen to makes a difference in keeping the thoughts/images relatively familiar. In fact when my mp3 player recently dropped to the floor during a treatment session, the landscape changed completely — as if everything became untied — though I didn’t even realize what had happened until after the session finished. The treatment is also oddly social (given that I’m really in a dark room alone), because I keep thinking about people I’ve known throughout my life.

And here is what most frequently goes through my mind:

  1. Being in bed staring at my hands at around age 4, thinking this is me.
  2. Everything is related to everything else, and it has all been leading up to this.
  3. Various words and names are really very weird, in ways that seem to mean something, when you really think about them.
  4. OK, that was weird. No, wait. THIS is even weirder.
  5. Infinite things within things, tunneling inward. Like trees or neural networks with branches off of branches off of branches…
  6. Being thrown or pulled far out into the universe somewhere.
  7. Oh please, could this even possibly be more of a cliché?
  8. The environment becoming increasingly dingy-looking and solid as the treatment finishes. Transparent layers fall away and I am becoming embodied.
  9. OK, I’m back now. No, wait. I’m back NOW. No, wait.

But seriously, I never expected that an effective treatment for a severe and intractable illness ought to be quick, easy, or fun; after more than 40 years of depression I was unable to imagine any way out at all. Ketamine has let me dream of what was previously only impossible.