TMS Didn’t Work for Me: The Grief of Failed Depression Treatment and What to Do Next

0
6


My transcranial magnetic stimulation (TMS) for depression isn’t working. After 24 (of 30) sessions, I have no meaningful improvement. This speaks to the treatment resistance of my depression. If you’re reading this piece because you’ve had a failed depression treatment, this guide names the grief of nonresponse and gives you a clear 72-hour plan plus what to ask your clinician about next. You didn’t fail the treatment; the treatment failed you. Here’s what that means, what to do now, and why “no” today doesn’t mean “never.”

Quick Links

Like many people with chronic depression, I was desperate for a treatment — any treatment — to work. I’ve tried everything you can imagine during my bipolar treatment, including innumerable medication cocktails, vagus nerve stimulation (VNS), electroconvulsive therapy (ECT), and many types of psychotherapy. Medication treatment fails, VNS treatment fail, ECT treatment fail, psychotherapy treatment fails — I’ve had them all. (In case you’re wondering, I’ve had a few attempts at alternative nonsense, too, but those, not surprisingly, also failed.) So when I say I’m treatment-resistant, I mean it more than most.

This most recent attempt is a round of theta-burst TMS. The research behind the treatment is solid, and its success rate is high. It was all so terribly promising. But here I sit, with the treatment almost complete, without response. And I can tell you that when a treatment fails, it’s soul-destroying.

Why Failed Treatment Hurts (and Why That Grief Is Normal)

So many treatments have failed me that you’d think I’d be used to it by now. I’m the most experienced failer ever. But no matter how much it has happened, and no matter how I warn myself that it’s likely to happen again, it hurts every, single, time.

When a mental illness treatment fails, it’s such a devastating loss. You lose time, energy, money, and the future you were desperately hoping for. In my case, I was hoping to enjoy this Christmas for the first time in years. I was hoping against hope that I would be free of anhedonia, for at least a little while. Life feels so entirely pointless when you don’t experience pleasure.

And so, after yet another treatment failure, there is grief — huge, unfortunate, painful grief. I can tell you this is normal. The pain after a failed treatment makes life feel worse than it was before you started treatment. It’s a double-whammy and so unfair. Not only did you not get better, but you actually got worse.

You Didn’t Fail the Treatment, the Treatment Failed You

It’s common parlance to say that a patient failed treatment X or Y. But the more accurate way of stating it is that treatment X or Y failed the patient. Because while treatment failure feels personal and like it’s your fault, it isn’t. You are left with the horrible responsibility of dealing with treatment failure, but the fact that it failed was not because you did anything wrong. Treatment can fail the best of us. It’s not you.

What Treatment-Resistant Really Means

I’ve written about treatment resistance before because it’s something that so many people face at some point in their mental illness treatment journey. For all the details, see this post.

In short:

  • There is no definitive definition of treatment-resistant depression.
  • The most used definition, however, is: “inadequate response to a minimum of two antidepressants despite adequacy of the treatment trial and adherence to treatment.”
  • It’s estimated that 30% of people with depression meet the above definition.

That means that almost one in three people is staring down a treatment-resistant label.

Why You Might Be Treatment Resistant

Now, in saying that, it’s also noted that many people are just “pseudo-resistant.” In other words, they appear to be treatment resistant because of the number of treatment trials on their file, but really, those trials were not completed in a way that was sufficient to determine response or nonresponse.

In other words, if you stop taking medication too soon, or if you don’t get an adequate dose, or if you don’t take it as directed, it’s not really a sufficient treatment trial. Some of this can be the fault of the doctor — they may give up on a trial before they should — but some of this can be the fault of the patient. Many, many patients are not treatment compliant (or treatment adherent, if you like). It’s estimated that more than half of patients with depression have problems with adherence. Depression itself increases nonadherence, as does increased symptom severity.

A patient’s nonadherence might be because of stigma around mental illness or the treatment, low expectations, a negative attitude, side effects, negativity from those around them, the complexity of the medication regimen, or just plain roadblocks to taking medication, like transportation or cost/insurance issues.

No matter what, though, if you haven’t had proper medication trials, you don’t know if you’re really treatment resistant or not.

Coping with Mental Illness Treatment Failure

If you’re experiencing treatment failure, try not to jump to despair, and do remember you’re not alone. There are more options out there, even for someone like me who has experienced far more failures than successes. If your doctor is telling you that you’re out of options, what they’re really saying is that they have no better ideas (and you need to get yourself a better doctor).

A 72-Hour Plan

Now is the time to take care of yourself. It’s completely normal to be crushed by treatment failure. You get your hopes up, even if you didn’t want to, and when they’re dashed, the pain is very real. The initial moments after treatment failure require special considerations.

Try to do these things:

  • Make sure you are safe. Do not let the failure of something out of your control make things even worse for you. Enlist crisis resources if you need help. Now is the time to reach out.
  • Talk to someone about your treatment. Have a heart-to-heart with a loved one or see your therapist as soon as possible. Be open and honest about how you’re feeling. Handling your disappointment head-on will help you. Suppressing it or hiding from it won’t.
  • Get some sleep. Rest makes everything a little easier, and conversely, a lack of sleep makes everything seem a little more bleak. Make sure your sleep hygiene is on track.
  • Maintain your routine with healthy food, exercise, sunlight, and seeing loved ones. This structure will help support you while things are going wrong.
  • Celebrate your little wins and what’s still going right. Even when you have a major treatment failure, it doesn’t mean that every aspect of life is a disaster. Congratulate yourself for cooking a meal, make plans with a friend, and find something to look forward to.
  • Do not make big decisions. Your elevated emotional state will cause you to make mistakes, and this can make your situation even worse. Now is not the time to sell everything you own for a backpacking trip in South America. Now is not the time to see a divorce attorney. Now is the time to hold the line while things settle.
  • Do something nice for yourself. You need kindness and compassion right now. Show that to yourself just like you would for a friend.

The first 72 hours might be difficult, but that level of difficulty doesn’t last forever. Get through it so you can make some new, beneficial treatment decisions.

Next-Line Treatment Options to Talk About with Your Doctor

As I said, no treatment is the be-all and end-all. That just doesn’t exist in psychiatry. While you’re still breathing, there are more things to try.

Here are some considerations to talk about with your doctor.

  1. Reconsider the basics. Is your diagnosis correct? Do you have a comorbid disorder that is complicating things? Do you have any additional underlying health issues that might be contributing to the problem? Have you done a sleep study? Have you had a complete medical workup to look for things outside your brain? If you’re missing iron, for example, that can impact everything from mood to energy to cognition to headaches. It’s shocking how often these basic steps are missed, and even if they weren’t missed initially, they may be worth revisiting.
  2. Consider lifestyle choices that might be affecting treatment. For example, if you are using non-prescribed substances or are drinking, this might be defeating every treatment you try. Be open with your doctor about lifestyle choices and concerns. Your doctor can’t help you if they don’t know about the issue. Remember, they work for you, and it is not their job to judge you.
  3. Try augmenting your existing treatment. There are many ways to increase the impact of existing treatments. These include adding a different kind of medication or therapy. For example, optimizing your thyroid is known to sometimes help those with depression even when their thyroid starts out in the normal range.
  4. Discuss another treatment modality. This can mean a few things, but basically, if you’ve only ever tried medication, then you’re missing out on many other important options. Various types of psychotherapy should always be considered when dealing with treatment resistance, as should neuromodulation techniques like TMS and ECT.
  5. Look at the whole picture. You are not just your symptoms nor your medications; you have a full life of factors with which to contend, so zoom out and look at things from a 10,000-foot view. For example, are you experiencing major life stressors? Are you going through life changes? What is your diet like? Are you exercising? What is going on around you that could be affecting your mental health?

And do not rule out getting additional outside advice. Get a referral to a more specialized doctor (someone who just treats those with bipolar, for example) or a specialized clinic. These people and places can see things that your average doctor misses because your doctor is handling so many different kinds of cases.

Acceptance Skills That Help Without Giving Up

There is a type of psychotherapy known as acceptance and commitment therapy (ACT). This type of therapy is proven to help those with bipolar disorder. One aspect of ACT is accepting thoughts and feelings without trying to alter them. This reduces the distress and struggle one can experience when fighting against their emotions constantly. This does not mean, however, that the goal isn’t to improve one’s psychological state. As with all therapies, improvement in quality of life is the goal.

I think we can use a similar mindset when looking at treatment failures. We can accept the failure as best we can, without banging our heads against the wall trying to make it work after we know it won’t, and then use our energy to find other options. I think it’s the acceptance of the failure that will give us the spark and impetus we need to move forward to something potentially more successful.

Moving Past the Grief of Treatment Failure

I could go on about the five stages of grief and how you may need to experience certain stages, like anger and denial, before acceptance is possible, but let’s skip that. Let’s just say that acceptance is a process, but that you can get through it. (To learn more about acceptance, see here.)

Instead, let’s focus on actions you can take to help in moving forward.

  1. Try helping others. Sometimes helping others who are struggling helps us feel better about our own struggle. This might be in the mental health sphere or elsewhere. Just make sure you have the internal resources to help others and yourself.
  2. Talk to peers. Isolation in treatment failure can make everything feel worse. Talking to others who have experienced the failure of an important treatment and have come out the other side can offer hope and possibly techniques that can help.
  3. Get creative. People with bipolar disorder may not be more intelligent than others, but in many estimations, we are more creative. If this is you (and it’s not everyone), use your creativity to express what you’re going through.
  4. Research options. Believe me when I tell you this isn’t the end. You’ll find information on these in places like my book’s appendix, this article on treatment resistance, and this technical guide (hard to understand).
  5. Make a plan. I always feel better when I have a plan for moving forward. The plan can be something you have worked out with a professional or a list of questions to ask a professional; it depends on where you are in the process. Any plan is better than none and will help you feel more in control.

And, of course, talking to your professionals is also critical. A therapist can be integral in helping you move past a treatment failure.

FAQ: When TMS (or Any Depression Treatment) Doesn’t Work

Q1. What does it mean if my TMS isn’t working after 20–30 sessions?

This is called nonresponse. Your symptoms haven’t improved enough to count as a clinical response. Nonresponse today doesn’t predict nonresponse forever; it’s a data point for next steps.

Q2. Does a failed treatment mean I have “treatment-resistant depression?”

It doesn’t automatically mean that. Treatment-resistant depression is usually defined as inadequate improvement after at least two adequate antidepressant trials; any particular treatment nonresponse may contribute to that picture, but doesn’t define it on its own.

Q3. What is “pseudo-resistance?”

This is when past trials look like failures but weren’t truly adequate (wrong dose, too short, stopped early, poor adherence, or confounding conditions). The right trials can move you past this.

Q4. What next-line options are worth discussing?

Re-check the basics (diagnosis, medical contributors, sleep disorders), optimize or augment current treatments, consider psychotherapy fit, and, if appropriate, review neuromodulation approaches with a specialist.

Q5. Is it my fault treatment failed?

It absolutely isn’t your fault. The treatment failed you, not the other way around. Your job is to now use this information to guide your next move.

Q6. How do I cope with the grief of treatment failure?

Name the loss, protect yourself with routine and support, avoid big decisions, and consider acceptance-based skills (e.g., ACT) to reduce struggle while you plan next steps.

Q7. What can loved ones do that actually helps?

Offer practical support (meals, rides, chores), use non-fixing language (“I’m here”), and help with logistics like scheduling follow-ups. Advice-dumping need not apply.

When Treatment Doesn’t Work: Grieve, Regroup, Plan

If a depression treatment didn’t work for you — like I’m now experiencing — that’s devastating, but it’s also information. Nonresponse is data, not a verdict. Grieve the loss, then use that data to move forward. Start with the 72-hour plan in this piece to steady sleep, safety, and support. Next, ask your doctor focused questions about diagnosis, adequacy of trials, augmentation, psychotherapy fit, and other neuromodulation options. Remember: a failed depression treatment does not make you a failed person, and treatment-resistant depression doesn’t mean “nothing will ever help;” it means your path needs adjusting. Like I said, a “no,” today is not “never.”

If you’re able, share what helped you in the comments; your voice can shorten someone else’s lonely road. And if you’re not safe right now, pause everything and reach out to local crisis services or dial 988 in the U.S. and Canada.