Dangerous ketamine clinics

The clinics we need to worry about aren’t necessarily dirty back-room operations. They have nice-looking websites, use all the right buzzwords, and offer convenient services in comfortable offices at reasonable prices.

Consider the following quotes from a website advertising a new clinic:

The (clinic name) offers exciting and cutting-edge IV infusions for the treatment of Depression, Bipolar Disorder…. administered by .…a highly experienced ….anesthesia provider that holds a national board certification in anesthesia by the NBCRNA.

Currently we do not require a referral for most cases of unipolar or non-rapid cycling bipolar depression…..We are Now Accepting Appointments. We welcome same day appointments, call us today to schedule…. Introducing our NEW Membership pricing option. Buy a membership for $(price) per month and receive discounted infusions…. If you are currently suffering from suicidal thoughts, please contact your local crisis center or call 911.

When the provider from this clinic advertised their services on a ketamine-related message board, I replied with the following question:

Please explain how a clinic can claim to ‘treat’ psychiatric disorders without requiring that their patients be properly diagnosed and monitored by a qualified mental health professional. I mean, if your patients are self-medicating a condition they self-diagnosed, how is that different from recreational drug use? And if your patients really have serious psychiatric disorders, wouldn’t they actually need mental health services, and not just whatever you’re offering?

I’m not saying this just to be obnoxious — I would really like to understand the logic behind a clinic like this. And I’d also like you to understand my serious reservations about it as a patient who is doing well receiving ketamine for severe, treatment-resistant depression.

I want the treatment that saved my life, and the lives of so many others, to be given safely and taken seriously. I don’t want psychiatrists to continue to refuse to work with patients who are benefiting from this treatment. I want the treatment to someday be covered by insurance, and I want people to stop acting as if patients like us are just taking stupid risks to get high. For these reasons I am concerned that clinics like yours are hurting people like us.

The provider quickly answered:

We understand your concern….Here, we do not diagnose mental illnesses and we make that very clear to all of our patients. We require that every mental health patient is diagnosed by and remains under the care of a mental health professional. In fact, we mandate that they provide us with the name, address and phone number of their mental health provider.

…we aim to offer an ancillary ketamine infusion service that most mental health providers support but are not willing to provide themselves. We are able to confidently administer a GENERAL ANESTHETIC in any setting and we are trained to manage any and all possible serious life threatening complications including acute tachycardia, severe hypertension, cardiac dysrhythmias and loss of patient airway… 

I answered:

I completely understand that mental health professionals rarely administer ketamine themselves (for good reasons) and think it is great that specialists are stepping up to provide ketamine to psychiatric patients on a consultant basis.

But given that this treatment is for patients at high risk for suicide, psychosis, mania, and other dangerous/severe symptoms, I do have an issue with advertising same-day service with no referrals required, even if you do ask for an address/phone number. There is a difference:

– A referral indicates that a mental health professional who has thoroughly evaluated the patient agrees that ketamine is appropriate for their diagnosis and treatment history, knows the patient will be receiving ketamine, and is on board to monitor the patient’s mental health and coordinate their care throughout this process.

– An address and phone number indicates that the patient has a mental health professional’s address and phone number.

The provider replied:

Thank you for your response. I would like to respond to your comments above which are based on assumptions and not on our current policies or procedures. Let me clarify, at (clinic name) we only treat uncomplicated unipolar and depressive phase of bipolar disorders without referral. We do NOT treat patients that are actively suicidal nor do we treat any patients without referral if we feel we may be putting them at risk of further mental health complications. We perform mania, psychosis and suicidal ideation screenings on all patients prior to Ketamine therapy. These type of screenings do not require mental health certifications or degrees to conduct. Patient safety is our priority and we are extremely confident that our current policies and procedures that are in place ensure the safety and continuity of care for all of our patients.

I was speechless. But here’s what goes unsaid:

No, I’ve thoroughly read your website and what you’ve said right here about your policies and procedures.  My concerns aren’t just “based on assumptions.”

 You said: “Currently we do not require a referral for most cases of unipolar or non-rapid cycling bipolar depression,” which implies that you consider “most cases” of unipolar or bipolar depression to be “uncomplicated.” But patients with these disorders ARE at high risk for mental health complications by definition. Just because someone denies manic, psychotic and suicidal symptoms before their infusion doesn’t mean they won’t encounter these or other serious mental health symptoms before or after they leave your office. And why would someone with truly “uncomplicated” depression require an experimental treatment like ketamine infusions anyway?

That you are “extremely confident” making complex clinical decisions based on a few screening questions shows a profound lack of judgment. Mental health screening questions are just tools, and how much training is required to use them depends on what you’re using them for.  People don’t need specialized training to use a knife as a tool for spreading butter, but they sure better have that training if they want to use that tool to perform brain surgery! While you say you will not treat patients if you “feel” you may be putting them at risk, you are making this decision with neither the necessary patient assessment data nor the necessary expertise to able to use your feelings as a gauge of mental health risk.

A clinic like this is a tragedy waiting to happen.

Battle

Chris Cornell’s death hit many of us quite hard, and one of the things I keep hearing is that it was especially hard because he was someone who had beaten his demons. I saw very similar comments when the toxicology report recently came out about Carrie Fisher’s death.

There is no denying that it is hard. Mental illness is really hard. But that so many people consider relapses and suicide risk shockingly unexpected outcomes of mental illness suggests a profound misunderstanding of what it means to battle it.

Despite what movies might have led you to believe, mental illnesses like depression and substance use disorders don’t have a single cause — and treatment rarely is a matter of exorcising particular demons (or memories). Even psychologists who believe that there is something to be gained from reaching into and airing out a traumatic past believe that this process requires repeated, painful efforts over a long period of time, and that success in this process is rarely complete or permanent.

Rather than derive information about surviving mental illness from movies attempting to depict therapeutic treatment, consider the horror genre.  When it seems as if the evil creature has been killed, but it comes back alive after you’ve breathed a sigh of relief, that is what battling mental illness is like. When you’ve discovered that the threats are coming from inside the house, from a place or person you trust, that is what battling a mental illness is like.  And we’re often talking about recurring battles over a lifetime, in which the enemy might lay low, call a truce, and fraternize with our side for a time. We need to celebrate each battle that is won without prematurely assuming that the war has come to a happy end. Labeling someone as a “success story” might make it more difficult for them to ask you to be there at their side, ready to continue the fight, when the enemy silently regains enough strength to attack again, as it often does.

And just because we’ve won the battle doesn’t mean we’ve won the war.

 

Afraid that I may lose access to treatment

The psychiatrist who oversees my care, prescribes my medications, and referred me for ketamine treatment, is closing her practice. Finding a replacement, however, is proving to be extremely difficult.

Most clinics and doctors that I can get to from the rural area where I live have a waiting list of months to years, or have stopped taking new patients all together. Worse, even when a clinic or a doctor in private practice is willing to schedule an initial appointment, they refuse to work with me once they find out that I am going for monthly ketamine infusions. So far:

a) Many just said they won’t provide me services  — without offering me any explanations, alternatives, or resources in case my treatment needs were urgent. Both irresponsible and cruel, individuals responding this way to someone who is trying to access treatment by a psychiatrist should not be working in the mental health field.

b) Others have apologetically said that they don’t feel that they have enough knowledge/experience with ketamine treatment to effectively work with me. It really is time that these psychiatrists start learning about the treatment and rethinking whether refusal to work with ketamine patients is really in the best interest of these patients as they seem to assume. After all, what level of expertise with ketamine are they thinking they need to have? These doctors probably already have plenty of patients receiving chemotherapy and other specialized medical treatments — and though they aren’t experts in the specifics of those treatments, they monitor their patient’s mental status and consult with his/her other doctors as necessary to coordinate care. Why should ketamine patients be any different? Of course it would be advantageous if all my healthcare providers could have advanced training and experience with all my disorders and treatments, but I’m in no position to hold out for unrealistic ideals. Isn’t a psychiatrist who lacks expertise with ketamine still better for me than being left without a psychiatrist?!! Because seriously, living where I do, those may be my only realistic options.

c) One psychiatrist that I spoke with said that by receiving monthly ketamine treatments from a specialist while having my psychiatric care and medications overseen by someone else I am inappropriately splitting my treatment and seeking drugs from too many doctors at once. This doctor really needs some basic education about ketamine treatment. First, it is entirely standard for ketamine infusions to be provided by a specialist who is not the patient’s primary psychiatrist. Few psychiatrists administer ECT themselves either – they refer their patients to a team of specialists to provide the electric shocks and anesthetic drugs, but they don’t accuse their ECT patients of inappropriately splitting their treatment by pursuing this arrangement. Second, ketamine treatments for depression are not illegal, they are simply off-label. If a psychiatrist is comfortable prescribing other treatments off-label, they really ought to ask themselves why they are so unusually judgmental about this one, and keep that personal bias in check when talking to patients.

Finally, I wish all of these individuals could understand that I have provided informed consent to receive this off-label treatment. If any psychiatrist is afraid to work with me because they think I might sue them for letting me exercise my right to receive a potentially life-saving experimental treatment, I’d say: Let me sign a waiver. I’m not asking you to give me ketamine infusions, just to allow me to receive them under my own volition. The risks are mine, and the decision to take those risks should be mine. For me and other patients like me, the risks of not having this effective treatment are worse.

I need to have a psychiatrist. And unfortunately, both my difficulty finding one and my fears that this will soon prevent me from continuing ketamine treatment are really starting to take a toll on me.

—————-

Update: I finally found a psychiatrist willing to see me — several hours away from where I live and with a limited schedule that will require me to miss work for appointments. But I’m very relieved to have found one!

Automated/fake encouragement can be worse than saying nothing

I used to belong to an on-line writing group, where people were supposed to post their daily progress and give feedback on others’ posts. Though the whole point was to increase accountability, community, and support, what I often received was the opposite of that. I’d get messages saying “You rock!” and other empty crap on days when I hadn’t accomplished anything at all.

On the internet I’ve been seeing random messages like “You are loved!” pop up as if this is supposed to help an otherwise hopeless/suicidal person feel better, but for me, this is like putting salt in a wound of loneliness. If “love” is just computer-generated sap expressed by someone/something who doesn’t even know me, then what the fuck would make it worth living for?

Showing up, listening, being real – these things can really matter and help. But empty expressions of praise and love are the opposite of caring, and only make a mockery of what accountability, community, and support even mean.

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.

What does “be positive” mean to you?

Some folks may innocently say “be positive” as a general synonym for “do beneficial things.” But in Western culture, “be positive” has come to have specific implications, including:

  • fake it until you make it
  • look confident at all times, even if this means never trying to learn anything new
  • don’t be angry/unhappy because it might put someone off
  • your inability to consistently visualize a positive outcome might prevent it from happening
  • you deserve unhappiness if you aren’t able to think it away
  • and so on.

I’ve come think that “be positive” is actually a code word for something quite ugly, when you look at what it is doing to young people these days. Everyone has negative feelings and negative experiences. Pressure to pretend that this isn’t true (i.e., that we can have it all if we play the part well enough) is only making people extremely fragile and intolerant.

Truly “being positive” begins with allowing yourself to feel negatively, without needing to hide it or beat yourself up for it. And allowing others in your life to do the same.

Negative emotions are part of existence and resistance too

Some anonymous advice for resistance* that is making the rounds on the internet says: “No more helpless/hopeless talk,” with an insistence on “positivity” that sounds like it is being marketed by the self-help industry.

Expressing helplessness or hopelessness doesn’t make someone a bad person, or bad for the resistance.  It just means they are human, and understandably having negative feelings about very negative circumstances.

It is really not helpful to judge people for their feelings, suggest that they ought to judge themselves for their feelings, or suggest that they need to keep quiet about having such feelings.  Helplessness and hopelessness aren’t things people can just turn off or ‘snap out of’. The worst we can do for someone who is feeling that way is shame them into believing they have to do it alone, in silence.

We don’t need to look/be “positive” while we resist, any more than we need to have nice-looking makeup. If wearing makeup personally helps YOU feel more ready to face the world and get stuff done, then by all means, go for it. But don’t pretend that wearing makeup is a proven effective strategy or a moral imperative for the rest of us!

No, I’m obviously not suggesting that we should strive to say helpless/hopeless things to each other all the time. But clearly you realize that having a totally helpless/hopeless world and a world that judges and forbids all helpless/hopeless talk are not our only two choices?

If someone expresses helplessness/hopelessness to you, whether about the news or something personal, you can help them cope with these feelings by understanding and acknowledging them. (If you also want to suggest ways the person could change to feel better — like focusing on small concrete actions or taking breaks to focus on pleasant activities and relationships – great. But keep in mind that people rarely welcome being told what to do unless the advice is coming from a place of compassion.) Of course if a friend’s helpless/hopeless talk is really too much for you, you need to set limits to protect yourself from that. But if you can, first tell your friend that you’re concerned about the frequency of their helpless/hopeless talk, and maybe bring up the possibility of seeking professional help.

We’re all in this together — even those of us who sometimes feel helpless/hopeless, or angry, or fearful, or otherwise not so “positive”.  Don’t let silly self-help crap decide for you what thoughts/feelings are welcome and acceptable during a national crisis.

*Note that the version of the anonymous advice that I read yesterday had an additional (12th) line saying that we have to be “positive” and not angry/fearful. For the record, I thought the other 10-11 points on the list were good suggestions.