Are You Really Treatment Resistant?
In psychiatric practice, providers often hear the same concern: “I’ve tried everything, but nothing works.” The patient giving this history could have any mental health condition, but the story is, unfortunately, the same: They put in many years of hard work without much relief.
After years of clinical practice and teaching medication use to psychiatric residents at Yale, I have heard this story too many times. Often, people will receive the label of “treatment resistant” without a thorough history review, and, as a result, they can lose hope of getting better.
I’d like to share how I evaluate patients concerned with this label — an approach I recommend to anyone who considers themselves treatment resistant.
Let’s assume for this discussion that you, your clinician and your past clinicians all agree on your diagnosis. At this point, you may be caught in a spiral of trying newer and more uncommon medications — and you may be stuck in an unfortunate “try this-try that” mentality.
What you need in this situation is an extensive review of your history using:
- Information that you provide
- Past treatment records
- Pharmacy records
- A co-reporter (a loved one who can provide an additional perspective)
Some clinicians may be concerned about the use of a co-reporter, as they wish to protect the confidential nature of their relationship with you. But I’ve found that most people are happy for a spouse, friend or another family member to be part of the team.
Whatever you tell your clinician remains protected and confidential, but someone close to you will have a perspective that neither you nor your clinician will have, and this can be invaluable. They may know, for instance, that on a certain medication you seemed like yourself again, or that you were interested in your hobby. It is easy for you (who has experienced many shades of good and bad) or a clinician (who sees you only once a week or less) to miss this vital information.
As the information becomes available, your clinician can put together a timeline of your history with special attention to questions such as:
- When did symptoms occur? Were they different at different times?
- What treatments have you tried? (i.e., therapy styles, different therapists, etc.)
- What medications have you tried? What doses and for how long did you take them?
- Did you feel better? If so, in what way? Were all symptoms gone, or just some?
- Were there side effects? If so, did they last? Were they intolerable or dangerous? Were attempts made to control them?
- While on medication, were doses increased? Did you have partial responses that were abandoned because they were inadequate?
- Was augmentation (a second medication) added to any existing medication regimen? If so, what happened? (all the same questions about effects and side effects apply)
Why all this detail? For one, this detailed history of what has happened to you, in one place, is very valuable. You can refer to this document at any time to guide your treatment. It costs less than a CT scan for a clinician to put this together, yet it gives more information about treatments than any test we have.
Seeing What Options Are Left
What we are really looking for in this review are holes in your treatment — things that are missing in the care you received. I can say from experience that most cases have significant holes that could mean a patient is not necessarily treatment resistant.
Holes come in the following forms:
- Medicines you have not tried
- Dose increases you have not tried
- Drug levels your clinician did not check
- Partial responses or adequate doses that your clinician did not augment
With a second drug:
- Side effects that your clinician did not manage
- Partial responses that your clinician did not push to improve the result
Part of this history may be due to the availability of the clinician. If there was no available contact outside of appointments (that is, no on-call care), they will most likely miss any chances for “hole-fixing.” Often, this is a missed opportunity to make dose adjustments for side effects or inadequate dosing. As a result, a patient will stop a medication due to a side effect or lack of improvement, when either of these could have been taken care of with a phone call.
It may be worth searching for a clinician who is willing to make time outside of scheduled appointments for phone calls when needed.
I will also mention that during the weeks of this work, you may still not feel well. If safe and appropriate, it is a good idea to treat for anxiety and sleep during this waiting period. This can often be done quickly and has been shown to not only help the patient feel better, but protect against suicide attempts. Make sure to discuss this with your clinician if they do not bring it up.
Creating A Treatment Plan
This work can be tedious. But after a few sessions, you can create a plan that is based on your responses to treatments with reputable studies and experience to back it up. Past treatments do not need to be seen as total failures. Each one tells the clinician something about how your brain works and builds the future of treatment for you.
This process of gathering information out of any treatment should continue as long as you receive mental health treatment. It is these details that inform your clinician about what will help you the most.
Mark D. Rego, M.D., is a psychiatrist with 30 years of experience. He spent 25 years in practice and has written a book, “Frontal Fatigue. The Impact of Modern Life and Technology on Mental Illness,” to be published in October 2021. You can learn more about his work at his website.