What is treatment-resistant OCD, and can I get better? 

In medicine, a “first-line treatment” is what we call the standard therapy recommended for a specific disease or condition based on its proven safety and effectiveness in most patients. When it comes to obsessive-compulsive disorder (OCD), we’re fortunate that two such therapies exist—one that treats the symptoms of OCD, and another that also targets the condition’s root causes for long-term management. 

As a therapist who has treated countless people struggling with OCD, I can tell you that most people who undergo either of these interventions—which I’ll describe in just a moment—will see a marked reduction in symptoms, often in a few weeks or months. And many people with particularly severe symptoms of OCD benefit most from combining these two evidence-based approaches. 

A small number of people, however, will not see an improvement in their symptoms after beginning treatment. This may be because they don’t start with one of these first-line approaches, or for any number of other more complex reasons. If you’re among them, you may understandably wonder if there are any other options available that could allow you to conquer this debilitating condition.

In this article, I’ll take you through the two main evidence-based forms of OCD treatment, present some options for the few who don’t get their desired results from them, and explain how “treatment-resistance OCD” is generally treated.  

First-line treatments for OCD

Exposure and response prevention (ERP) therapy

The gold standard in OCD treatment is a specialized form of therapy that was developed specifically for OCD, called exposure and response prevention, or ERP. How this approach works is conceptually very simple. In fact, it’s right there in the name!

Working with a specially-trained therapist, you’ll actually confront the situations that trigger your OCD symptoms, starting with the easiest ones. When something triggers your fear, worry, or distress, you’ll feel an intense urge to respond with a compulsion, such as seeking reassurance, washing your hands, repeating certain phrases, or any number of other behaviors. But instead of giving in, your therapist will guide you as you sit with your discomfort, allow it to pass, and loosen OCD’s grip over your behavior.

If you have contamination OCD, for example, an exposure might involve touching your shoelaces after they’ve come undone and touched the floor. Or if you have harm OCD, you might handle a chef’s knife as an exposure. Then, you’ll sit with the uncomfortable feelings that result, rather than resorting to a compulsion for quick relief. For instance, you might wait for 10 minutes to wash your hands after tying your shoes, or leave the knife on the counter for a little while after chopping your veggies.

Over time, you’ll be able to integrate the skills you’ve learned in your sessions into your everyday life, and find that you’re no longer at the mercy of your condition, with a new sense of confidence and control in the face of uncertainty. 

What’s more, ERP can be delivered extremely effectively in a remote setting, making it one of the most accessible avenues for most people struggling with OCD. In fact, research has shown that virtual ERP can be even more effective than traditional, in-person treatment.

Medication

A decade or two after ERP was developed, it was discovered that certain medications for depression and anxiety could also be used to reduce OCD symptoms when taken in higher doses. The most common are a class of drugs called selective serotonin reuptake inhibitors (SSRIs). In some cases, though, other classes of medication are used for OCD, as well.

Some SSRIs include fluoxetine (Prozac), sertraline (Zoloft), citalopram (Celexa), escitalopram (Lexapro), paroxetine (Paxil), and fluvoxamine (Luvox). They may reduce your obsessions and compulsions by increasing levels of serotonin, a neurotransmitter, in the brain. Boosting levels can help regulate your mood, and reduce the intensity of symptoms you experience.

Studies have shown that these medications can have a similar efficacy as ERP in treating OCD. However, they stop working when you stop taking them—which means that your symptoms will most likely return if you discontinue your meds. ERP skills, on the other hand, usually lead to long-term recovery after therapy sessions are over.   

Medication can be used on its own to treat OCD, but as I mentioned, you might also benefit by combining medication with ERP. For example, it can make ERP exposures more manageable if you have more severe symptoms. 

What is “treatment resistant” OCD?

When these two first-line treatments for OCD don’t work, clinicians call it treatment-resistant, though the more accepted term now is treatment-refractory OCD. The term may sound ominous, but it doesn’t necessarily mean that your OCD absolutely can’t be treated—just that what you’ve tried isn’t providing the relief you deserve.

There are several reasons you might experience treatment-resistant OCD. Here are some common ones:

• You’re not getting the right kind of treatment. If your therapist has been using traditional “talk therapy” or other strategies to manage your OCD—aside from ERP and/or medication—it may not be effective, and in some cases might worsen your symptoms. In other words, the issue may not be you; it’s that you’re doing the wrong kind of therapy. That’s why it’s important to find a clinician with specialized training in treating OCD, so you can see if the first-line therapies help you. 
• You may not be giving treatment your all. The term treatment-resistant- or treatment-refractory OCD is often used to describe situations where, in reality, the client may not be prepared or ready to engage in treatment. Perhaps you’re not fully participating in therapy sessions, or meeting the expectations of your homework. If so, it’s important to recognize that fact, versus chalking up your OCD as treatment-resistant—or treatment-refractory. 
• Your therapist isn’t comfortable doing ERP. I should also mention that not responding to ERP can be as much a therapist problem as a patient one. Therapists may deliver the treatment less effectively due to insufficient training. That’s one of the reasons why specialized training for therapists who treat OCD should be a top concern when you’re looking for effective treatment.
• You have severe symptoms that have gone unchecked. Research shows that when the disorder goes untreated for a long period of time, you may be more likely to have true treatment resistance.
• You’ve already tried the first-line treatments and they didn’t work. Again, this is a hallmark of a case of treatment-refractory OCD. While first-line treatment options work for the large majority of people, they don’t work for everyone. If you’ve tried ERP and medication and haven’t seen the results you’re looking for, there are still options available to you.

If you’ve been told you have treatment-resistant OCD and think the issue may be the type of therapy you’ve been doing, your therapist, or your own unwillingness to work on your OCD, then addressing those issues and trying ERP and/or medication (in earnest) may be what you need to get your symptoms under control.

However, if you’ve given the first-line treatments your best shot and they haven’t worked, you may want to talk with your clinician about alternative approaches, as there are other treatment options that, while less proven, are still promising. 

Promising options for treatment-refractory OCD

Definitions for treatment-refractory OCD have been established because eligibility for advanced or second-line treatments requires a documented lack of response to first-line therapies. What are some of these second-line therapies? Let’s dive into a few alternatives that have shown some degree of promise in research.

Deep Brain Stimulation

DBS is a somewhat invasive procedure that can have notable side effects, but it’s shown promising results at treating OCD. One review of studies—which looked at 20 years worth of literature on the subject—found that half of participants had a “good and sustained response to DBS” in the long term, and 23% showed some improvements in their OCD symptoms. 

DBS involves surgically implanting electrodes into specific areas of the brain that are involved in OCD—typically regions that regulate mood and behavior, such as the ventral striatum or the subthalamic nucleus—and sending electrical impulses to the brain that modulate the abnormal neural activity associated with OCD.  

Over my long career, I’ve seen a number of therapy members who diligently adhered to ERP and pharmaceutical treatments without improvement—and in those cases, I’d often refer them for DBS. 

Notably, only a few sites perform the procedure. And all of them conduct thorough reviews of your medical history, and require several failed medication trials and at least two committed attempts at ERP before considering you for DBS.

Transcranial Magnetic Stimulation 

In the last decade, TMS has emerged as a leading alternative treatment for OCD, mainly because it carries minimal side effects or discomfort, and offers reasonably promising results. 

TMS treats OCD symptoms by using magnetic fields to stimulate nerve cells in the brain. As with DBS, it targets the specific regions associated with OCD. The magnetic pulses are thought to “switch on” these areas, which may be underactive in people with OCD. By altering the activity of these neural circuits, TMS can help alleviate symptoms for some patients.

One 2020 study looked at data collected from 22 clinical sites and found that most OCD patients benefited from deep TMS, with the onset of improvement usually occurring within 20 sessions, and a continued reduction being seen after 29 sessions. 

It’s crucial to note that while DBS and TMS have shown promising effects, they may only be short-term solutions. Typically, after multiple unsuccessful trials of ERP and pharmacological treatments, a patient might undergo TMS or DBS. Afterward, however, it’s generally recommended to resume ERP and SSRI medication, as these second-line approaches are considered catalysts for first-line treatments, rather than standalone solutions.

It’s important to remember that these alternative approaches are less accessible due to higher costs, limited availability of specialized healthcare providers, and more restrictive insurance coverage. DBS, in particular, requires a surgical procedure that often necessitates a rigorous approval process.

Getting the help you need

In the words of my colleague Jamie Feusner, MD, “There is always hope—even if other treatments haven’t worked, it’s still possible to find a plan that allows you to conquer OCD.”

If you haven’t seen the results you need from treatment, whether you’ve committed to ERP in the past or haven’t yet accessed specialized treatment, your best bet is to begin working with a licensed professional who has specialized training in OCD treatment. 

To help the OCD community access the help they need, we at NOCD have launched a directory of trained specialists that is free to use, vetted by experts, and includes providers both at NOCD as well as external specialists for a greater range of choices. Accepted insurances are listed to help you find cost-effective treatment. If you’re in need of care, find a specialist in the KnowOCD Provider Directory.

Please don’t hesitate to reach out to a qualified OCD specialist. Recovery is possible.