Does this type of mental health professional exist?

October 5, 2021 2:19 PM

I have pretty severe mental illness that so far has not responded to any of the normal types of treatment. I'm functional, but miserable, and this is lifelong--started when I was 20, I'm now 47. My diagnoses are grief disorder, CPTSD, and schizoid.

I cannot get any type of mental health treatment person to actually try to find something that can help me. I've spent literally decades with therapists and it never helps; therapists themselves say it's unlikely to help. I've seen multiple psychiatrists and they've prescribed medications and combinations of medications but it's never helped. My issue is that all of these people--therapists and psychiatrists--just seem to want to do the same things we know aren't effective for me. Like, when therapy isn't helping they just shrug. When medications aren't helping they don't change them or try anything else. I've tried changing therapists and psychiatrists and the cycle just starts again with no one actually caring if I feel better or if what they are doing is working. I always tell them it's not working, so it's not that I'm not advocating for myself. I think part of the problem is that my behavior is mostly ok--I have a job, live independently, etc.--I just feel horrible.

What I'm wanting would be some type of medical professional whose job it is to actually figure out what would help me. They would know various types of treatment, including new things like TMS or ketamine, and they would evaluate the person and recommend treatment based on evidence that it would help. (I'm not wanting TMS or ketamine, those are just examples.) They might even recommend therapy to some people, but not to me, because we've tried that already. I feel like psychiatrists should be able to do this, but in actual practice they don't--with psychiatrists I just go around and around with them prescribing drugs that don't help. Does this person exist?

posted by Violet Hour to Health & Fitness (27 answers total)

Have you done trauma-specific, somatic treatments such as EMDR? It has been found to work with trauma in some cases when talk therapy does not. You can also check out "The Body Keeps the Score" for more info about treatment for trauma- I think the person you are looking for may be a researcher /pioneer such as the author of that book, or a book called "No Bad Parts". I don't think this type of professional exists per se but I think some people in the mental health field who are scholar and pioneers sometimes do groundbreaking research that is holistic in nature.

Beyond that, I think that unfortunately there's no fool-proof, fail-proof treatment in mental health (and I say that as a therapist, albeit a new one). There are multitudes of approaches and theories (and unpredictable factors) and what works well for one person may not work for another. The relationship between therapist and client is a top factor as well.

Having said that, I'd recommend looking into something like EMDR or brainspotting, or other treatments that are somantic, for trauma, and not talk-therapy focused. (apologies if you have tried those already!)
posted by bearette at 3:53 PM on October 5, 2021 [3 favorites]

I know this isn’t what you are asking but have you tried EMDR? It is science based and produces actual quantifiable results. Talk therapy is fine, but EMDR was a godsend.
posted by katypickle at 3:55 PM on October 5, 2021 [2 favorites]

Response by poster: I have tried EMDR, yes, and it did nothing.
posted by Violet Hour at 4:03 PM on October 5, 2021

Newer treatments that show promise include ketamine, not easy to find, expensive, not always covered by insurance.
Read this today(nyt, paywalled, your library likely has access)
Transcranial Magnetic stimulation
I have heard positive results from EMDR.

When I have gotten the best care and investigation of difficult health issues, I had a Primary Care doc who listened, fought whit insurance companies, and investigated/ researched. That's a hard doctor to find; current US medical care makes it harder and harder.
posted by theora55 at 4:06 PM on October 5, 2021

What I'm wanting would be some type of medical professional whose job it is to actually figure out what would help me.

So you're looking for the Dr. House of mental health, basically? Someone who would approach your situation as though there were infinite diagnostic possibilities and be willing to apply more or less any conceivable treatment indefinitely.

I agree with theora55 that this is less a TYPE of mental health professional and more a matter of finding the needle-in-a-haystack MHP who is 1) sufficiently passionate/compassionate 2) sufficiently unconstrained by their insurance/practice and 3) somehow actually accessible and affordable.

What is your willingness here, would you travel for this treatment? Move permanently? Perhaps one thing to investigate would be inpatient units at large research-type institutions? Whatever the Mayo Clinic of Psychology is (heck for all I know the Mayo Clinic itself)? Inpatient treatment can be traumatic in itself so I don't recommend it lightly, but if you're not in active psychiatric crisis you are in a better position to evaluate and find a promising fit.
posted by We put our faith in Blast Hardcheese at 4:19 PM on October 5, 2021 [4 favorites]

(The title that comes to my mind is something like Philosophical Neuropsychiatrist which doesn't exist but maybe some neuropsych practitioner out there wants to take on an experimental case????)
posted by We put our faith in Blast Hardcheese at 4:23 PM on October 5, 2021

I think you are more likely to get somewhere by researching possible treatments on your own, deciding which ones you want to try in what order, and working backwards to find a potential prescriber/treating physician for that treatment. this is not something you should have to do and it may not be something you feel qualified to do, but it is not something doctors are usually willing to do - it's you or nobody. New technologies & new drugs often have consumer-facing web pages with lists of 'their' doctors who have partnership deals to evangelize for & prescribe their new Thing. this strikes me as extremely sketchy but it's a resource to use. & for something like ketamine, you might try pain clinics as well as psychiatrists.

this is itself a hard and a stressful process, and a burden that should not be yours if you're not a medical professional yourself -- what if you guess wrong about what might help you, and it instead harms you? what if you have to be a little dishonest to get the response you need? but the alternative is to keep going to one more psychiatrist after another, for more years & years, patiently letting them run through their decision trees & trial you on all the things you've tried before, just in the hope that they'll eventually get to something new. this can work; you can get lucky. but if you recommit to being a good (passive) patient, you can't control the process or the speed of the process, and that in itself is depressing and anxiety-provoking.

also look into clinical trials of new treatments if you're anywhere near somewhere suitable.
posted by queenofbithynia at 5:13 PM on October 5, 2021 [6 favorites]

I agree you are not looking for a profession as much as a person. One option might be to look into the peer-reviewed journals focusing on mental wellness and following the work of authors who intrgue you and see if they are doing any clinical work.

You may also find the cultural component of the mental health industry to be stifling you. You mentioned grief disorder, which follows from the North American idea that grief is a short six stage process you go through and then return to "normal". Other cultures believe in different expressions of grief; the same is true of schizoid disorders. I am familiar with the research in India of how the treatment is different to the North American style. Of course, pyschadelic drugs are once again popular options, and I have been reading today about modalities of therapy using tabletop gaming and videogames successfully in the treatment of some mental health disorders

In addition, mental health professionals are one aspect of wellness; I hope you are able to access other supports such as a non-judgemental community, good friends, healthy meals, art, and movement activities.
posted by saucysault at 5:47 PM on October 5, 2021 [4 favorites]

You’re looking for a concierge doctor. They can be extremely pricey and seldom take insurance directly, but that means they don’t have insurance companies breathing down their necks. They also often have much smaller practices and can afford to take the time to really consider problems.

If you can afford it, start shopping off the insurance menu.
posted by Tell Me No Lies at 5:54 PM on October 5, 2021 [10 favorites]

Have you worked with someone who has specialized in dissociative disorders? I ask because there is no known medication to treat disassociative disorders (there is a spectrum of disassociative disorders, it is not just DID) and might be a reason why you aren't seeing symptom alleviation. There is nothing to indicate from this post that you might have one other than you reported CPTSD, and in general people with disassociative disorders have experienced trauma. Anyway, they tend to be underdiagosed imho, so might be something to think about.

It might help to write out specifically what you are trying to change, (reduce flashbacks, feel more connected to your body, require less sleep, feel real in the world, etc etc to get recommendations from people about specific modalities here if you would like).

I had persistent "symptoms of trauma and depression" that were straight up hypothyroid that went untreated for far too long, so make sure you are medically okay too. I wasn't. as soon as my thyroid was treated I was able to discontinue a bunch of mental health medication.

You might get lucky and find someone who will review your history and suggest treatment approaches with you, but I certantly have never met a mental health professional who did.
posted by AlexiaSky at 5:57 PM on October 5, 2021 [5 favorites]

In theory, this type of situation — treating difficult cases that have not responded to other treatment — is something that the Mayo Clinic specializes in, and they have a Psychology and Psychaiatry department. Mayo Clinic in general is very highly regarded but I don’t know the reputation of their mental health care in particular.
posted by mekily at 6:54 PM on October 5, 2021 [3 favorites]

I'm sorry you're dealing with this, not only the mental health difficulties but also the difficulties with getting proper care from our health system. This may not be an option for you depending on where you live and what your financial/insurance circumstances are, but you may have better luck finding a practitioner who is up-to-date on the latest research on treatment methods and is willing to explore nonstandard options with you if you go to a psychiatrist or therapist practicing at a major research hospital. This could be a hospital associated with the medical school at a research university near you, or a specialist research hospital like the Mayo Clinic or Massachusetts General.
posted by biogeo at 7:42 PM on October 5, 2021 [1 favorite]

There are psychiatrists who specialize in "treatment-resistant (insert diagnosis here)" - i.e., people in exactly your position, who have tried the standard treatments and not seen results. If you haven't tried it before, it may be worth using "treatment-resistant" as a keyword search when evaluating specialists.
posted by waffleriot at 8:03 PM on October 5, 2021 [3 favorites]

Two weird paths to try for finding your needle in a haystack doctor - quite a few neurologists and pain doctors seem to be interested in and somewhat good at thinking of new brain things to try. Both the therapies you mention can fall under their specialties. If you are near a research hospital, that may be a good place to hook up with them.
posted by Bottlecap at 9:41 PM on October 5, 2021 [2 favorites]

If time and money were no object, I would recommend starting off with a residential type treatment at a major hospital. Maybe even somewhere like Mclean Hospital. (Mclean is part of the network with MGH/Brigham, so in addition to being one of the top psycho hospitals, it's tied to some of the top major hospitals in the US.)

One of the most helpful things about doing residential treatment at a top facility is that they will help refer you to and connect you with more resources both for during and after you stay.

On a more practical level, it sounds less like you are looking for a particular specialty and more for a particular person. You may unfortunately just have to do your own research and then find a doctor who is willing to work with you on the ideas you've found.

Another thing to explore is whether there are any somatic illnesses that could be contributing to this. There's a lot of research that shows how trauma, especially prolonged trauma that causes CPTSD, can contribute to somatic illnesses. I was actually really surprised to discovered how some of my physical problems (asthma, immune problems, a few others) were contributing to my ongoing stress and anxiety.

This is where going to a concierge doctor would probably be helpful. But you'd still have to do the research to find a good one.

Lastly, I know reddit can be a complete cess pool, but there are some health and mental health related reddits I've visited which have been surprisingly good. That can be a good place to find out about some treatment options and maybe even specific treatment providers.

I know none of this is easy, especially when you aren't feeling well. But also, you are ultimately the one who knows your body and mind best and what has worked and not worked. You'll also always be the person most invested in finding a way to feel better.

I know from personal experience how miserable and demoralizing it can be when you try med after med and therapy after therapy and doctor after doctor and none of it helps. Good luck! I really hope you're able to find what you're looking for.
posted by litera scripta manet at 4:39 AM on October 6, 2021

Have you worked with any psychiatrists associated with a research hospital or university? If they're involved in doing research themselves and/or training residents then they can be more flexible and creative in their thinking about treatments and diagnoses. My friend was only properly diagnosed when they went to a university-affiliated clinic where the practitioners were residents overseen by professors. But the residents by necessity were deep in the most recent research and going to seminars and more engaged than the average psychiatrist who is used to rubber-stamping their pet treatment plan, so it was a resident who figured out what was going on and the proper medication.
posted by Anonymous at 5:43 AM on October 6, 2021

This will sound counter-intuitive, but I had the best luck at receiving treatment that actually worked from a relatively newer psychiatrist, ie one who had just finished his residency and opened a private practice. The newer generation of pdocs will have been trained more thoroughly in innovative techniques, versus the older generation who come at it from a "let's try every SSRI and see if it works."

My doctor offered DNA testing to help figure out what meds might work best with your body, though I didn't myself utilize this service.

Wishing you the best; I could have written this question, be kind to yourself and know that there is a way out.
posted by nancynickerson at 6:09 AM on October 6, 2021

If you (by chance) are willing to travel to Cincinnati, my former psychiatrist Marcia Kaplan is a specialist in treatment-resistant depression and is very aggressive in trying new drugs and drug combinations. In other words, she won't abandon you after the first round doesn't work.

It is difficult to find the right words, but my experience in mental health has been you get what you pay for. If you have resources to go for private pay, as some have alluded to above, you may find the kind of person you want.
posted by 8603 at 7:17 AM on October 6, 2021 [5 favorites]

The kind of help you need is not sanctioned by conventional medicine. It's more psychoactive plant medicine. All the rest, from my very long, drawn out experience with this - is utter BS and created to divert away from the root cause which can run the gamut from spiritual to nutritional. A comprehensive approach is vital - body - mind - spirit. Without it - it's hopping around on one foot, 2 hands tied behind your back, in the desert without water and left to your own devices.
posted by watercarrier at 7:36 AM on October 6, 2021 [1 favorite]

We put our faith in Blast Hardcheese: What is your willingness here, would you travel for this treatment?

If you are willing to do this, then there are two options worth considering:

The Austen Riggs Center: located in rural, western MA, it's a very comprehensive treatment setting, with intensity of treatment services going from outpatient day programs up to residential and inpatient programs. They also utilize a therapeutic community model. The programs are generally focused on treating those who've had severe and life-long, treatment-refractory mental illness.

The Menninger Clinic: located in Houston, TX, and offers comparable services to Austen Riggs. I know a bit less about them, but they seem to have less emphasis on a therapeutic community model. Here too the focus is on treating those with severe and life-long treatment-refractory disorders.

The biggest (and I do not underemphasize this) downside for these places are cost: depending on the particular program, Austen Riggs will cost between $420 to $1,700 per day; Menninger clocks in at a comparable $490 to $2,080 per day. Of course they accept insurance, but the issue will usually and sadly be whether insurance will accept covering any part of the cost for a patient. They both offer financial assistance, but I couldn't say what this actually looks like/how accessible it is in practice.

I know a few more places that aren't quite as broadly comprehensive but may address some of your concerns - feel free to memail me if you'd like to follow up.
posted by obliterati at 10:09 AM on October 6, 2021 [3 favorites]

Response by poster: Anything residential or invasive is contraindicated for someone with schizoid (and also extremely terrifying and triggering for us); the literal definition of schizoid is that we don’t benefit from (and are actually harmed by) interpersonal things like that. I realize people are trying to help, but this isn’t treatment-resistant depression. This is why I wasn’t asking what treatment to try; I was asking how to actually get appropriate treatment.
posted by Violet Hour at 10:48 AM on October 6, 2021 [1 favorite]

Not meaning to back-and-forth, but I would recommend Dr. Kaplan for other forms of treatment-resistant mental illness, too, not just depression. She definitely falls into the you get what you pay for category.
posted by 8603 at 12:35 PM on October 6, 2021

I've seen multiple psychiatrists and they've prescribed medications and combinations of medications but it's never helped. [...] What I'm wanting would be some type of medical professional whose job it is to actually figure out what would help me. They would know various types of treatment, including new things like TMS or ketamine, and they would evaluate the person and recommend treatment based on evidence that it would help.

Strongly seconding the research/university hospital (for doctors using those newer approaches) and DNA drug metabolism testing (to best customize your treatment) answers.
posted by Iris Gambol at 12:40 PM on October 6, 2021

There is no evidence that genetic screening for mental health medications works. Many insurance companies do not even pay for it as a result. You're better off spending the money elsewhere.
posted by Anonymous at 1:18 PM on October 6, 2021

That's not so, schroedinger. For psychiatric medications, CYP2D6 and CYP2C19 enzymes are clinically relevant (2021).
Testing helped me; insurance did pay for it, because I'd had no therapeutic benefit from any antidepressant, and had experienced multiple ADRs. The testing was ordered through my local university research hospital.
posted by Iris Gambol at 1:59 PM on October 6, 2021

You could consider booking an online consultation with Janae Elisabeth, aka Trauma Geek. It's $100 for a 45-minute one-on-one call. Janae can point you to lots of resources on dealing with the trauma part of your question. Good luck!
posted by danceswithlight at 4:02 PM on October 6, 2021 [1 favorite]

Iris Gambol, the article you posted is a meta-analysis attempting to estimate how widespread variant CYP2D6 and CYP2C19 activity was in the world. It is not backing up the clinical relevance of those enzymes--indeed, it is interesting that the author uses that sentence in the abstract given that the first author of that paper was also the first author of a 2021 paper wherein the authors concluded "Dose adjustment to the CYP2D6 phenotype according to international guidelines in patients on long-term antipsychotic treatment showed no beneficial effect.".
posted by Anonymous at 4:27 PM on October 6, 2021