An FAQ on TMS and other acronyms

Two years ago, I told you about my experience with TMS, Transcranial Magnetic Stimulation. I told you how it pulled me out of depression like nothing I’d ever experienced before. How I relapsed, but I was waiting on insurance to approve another round.

Since then, a lot has changed.

In the Fall of 2016, I started a steady pattern of TMS that lasted a little over a year. We tried lots of different patterns, protocols, treatments. My doctor has been incredible, generous, patient, and kind. The technicians at my treatment center have been next level wonderful to me.

And last January, while I wasn’t feeling as fantastic as I did after my first round, we decided to give TMS a break and see how I’d do.

I stabilized. I’ve been steady for months. (Knock on wood, pray we don’t jinx anything.) I stumble a lot, but I keep picking back up. And I firmly believe it’s because of this last year’s work.

I reference TMS ALL the time, and wanted to answer a lot of questions people might have. And even if you don’t, here’s some answers anyway.

sitting pretty getting Thetaburst TMS on the MagVenture machine

sitting pretty getting Thetaburst TMS on the MagVenture machine

What is TMS?

TMS is a type of therapy for treatment resistant depression. It sends magnetic pulses to parts of the brain that control your mood.

As my treatment center, Greenbrook TMS, explains it:

TMS Therapy works by delivering magnetic pulses to specific areas of the brain involved in mood regulation – areas known to be underactive in those diagnosed with MDD. The magnetic pulses stimulate brain cells, thereby improving the brain’s ability to regulate mood.

Does it hurt?

Kind of. Really, it’s more annoying than painful.

It feels like a woodpecker is tapping at your head and trying to get through your skull to get to your brain. It’s frustrating. It sounds weird. But you get to watch TV, so that’s a plus.

The first few sessions leave you a little sore and uncomfortable, but Advil will fix it right up.

I can’t stress enough though how fast you get used to it. At first, I swore up, right, down, left that I’d never be able to withstand that awful machine. By Week Two, I was taking naps during treatment.

What are the side effects?

Scalp discomfort, headache, neck pain.

The only noticeable thing that happens to me during treatment is twitching of the face and hands. I’m an abnormally twitchy patient (any twitching can usually be alleviated by repositioning the magnet, but my TMS techs and I gave up a long time ago because no matter what, I just twitch.)

There is a small risk of seizure with TMS, but those who administer it are trained in how to respond.

So, is this ECT (electroconvulsive therapy)?

Absolutely not.

ECT uses electrical currents to induce seizures and “restart” your brain or reverse a lot of symptoms of depression. TMS sends magnetic pulses to your brain to stimulate different parts of your brain associated with mood.

They’re VERY different. ECT requires anesthesia and must be done in a hospital under the care of a team of doctors. TMS can be done in doctors’ offices by trained technicians. (Although your initial appointment where measurements for “motor thresholds” are taken are done by doctors.)

You are awake the entire time you have TMS and have full control of your faculties.

Does it work?

For me, yeeeeeeep. And for a lot of people, yeeeeeeep.

How long do you have to get treatment for?

The standard course of treatment is 5 days a week for 6 weeks, and then a few extra visits to taper off and for maintenance.

Your doctor will decide on what “protocol” to give you. I’ve had many protocols… the most standard is probably a 40 minute treatment on one side of the head. You might get a second treatment on the other side for 20 minutes. I’ve had one protocol called “Thetaburst” on a machine called the MagVenture that only lasted about 7 minutes.

It totally depends on the machine, the doctor, and what you’re being treated for—anxiety, depression, both, etc.

Do you have to stop taking your anti-depressants or stop going to therapy?

Nope! I’m still on several of the same medications I was on when I started TMS in January of 2016. Follow the advice of your TMS psychiatrist and your regular psychiatrist and communicate with them.

The most important part of TMS is that you have an aftercare plan. Continue seeing a regular psychiatrist and therapist when you leave, to continue good mental health practices, and the second you notice something is wrong, get right back in to see your TMS physician.

Didn’t you have this and then relapse a bunch?

Yes. And then I went back to TMS.

And it worked again.

When I first started TMS, I was told I had a 70% chance of relapse given my medical predispositions, but a 90% chance of TMS working again. I did it anyway, because honestly, those odds are still pretty good.

I know everyone is looking for the magic thing that works once and works for good, but that might not exist given the nature of what we’re treating. I was watching 60 Minutes, and a psychiatrist, Dr. Charlie Welch, explained it perfectly: “the nature of depression is that it is usually a relapsing illness.”

It’s true. I have relapsed more times than I can count with this illness throughout my life, which is why now that I’ve found the treatment that alleviates pain the best, I’m not letting go.

A lot of medications don’t work on me. It’s always very “guess and check.” But TMS is much more consistent. It keeps working, just like how Cognitive Behavioral Therapy has been steady with me, it just needed something else to boost it.

But how can you say it worked? How do you know it worked? How can it be working if you keep relapsing?

When I relapse, I go into a state where I physically and emotionally cannot function in the world. I withdraw. I stay in my room out of fear, not enjoyment. I don’t engage with my family, my dogs, my friends. I don’t respond to texts, tweets, posts, anything—because just holding myself together and just breathing is too much.

There are varying degrees of relapse for me, but the worst is when I feel too scared to talk to my parents. I know I need help the most when I’m the most afraid to ask for it.

When I’m good, when therapy, medication, everything works? I’m not necessarily jumping off the walls happy (although sometimes I’m laughing hysterically at my own jokes)—but I’m in and a part of the world. I’m running errands. I’m driving myself places. I’m making plans. I’m responding to texts (or forgetting to because I’m actually busy.) I’m doing laundry and making dinner or getting Orange Chicken at Panda Express. I’m procrastinating something and binge watching ER because it’s FUN, not because it’s my only coping mechanism.

When I go from hibernation to living, and living for extended periods of time, that’s how I know TMS is working.

What are the requirements to get TMS?

I can’t speak for all treatment centers and insurance companies, but I had to verify that I’d undergone Cognitive Behavioral Therapy, had tried at least four different medications in the past (try 25+), and my psychiatrist wrote a referral for me.

People with metallic objects in their heads are ineligible for TMS.

And the most important question…

Why do you keep writing about TMS, a depression treatment, on your blog about dysautonomia?

When I was 21, I was supposed to get ECT.

It took me months to come to that decision. It was one of the scariest and hardest decisions I ever made.

When my psychiatrist first told me he wanted me to have ECT, I started hyperventilating, crying and nearly ran out of his office. (I was instantaneously reciting Sylvia Plath while scenes from One Flew Over the Cuckoo’s Nest played in my head. NOT PLEASANT.) My doctor calmed me down, explained what modern day ECT is like, WOW we’ve made progress, and told me he really believed this could change my life for the better.

I spent an entire summer talking with my family and my therapist about the decision—I learned how safe it was, but I also learned the risks, and I finally decided I was ready. That I was going to have it, I was going to get better and finally beat depression.

And then my cardiologist who treats my POTS told me in no uncertain terms I was not to undergo ECT. That he would not be signing off on it. That while it’s incredibly safe for the average person, it was too risky with my POTS. We needed to find something else.

I went back to my psychiatrist. I was broken. I had been so ready for this huge step, and now it was whisked away. For over half of my life, I had tried everything to fix my depression, and now my last option, ECT, had been taken from me.

That’s when we started talking about TMS. It had never been in the picture before because it wasn’t covered by our insurance at the time and the out of pocket cost was $15,000.

At the time of that initial conversation, I was stable. We did everything we could to sustain it, and it lasted about a year. And that’s when we turned to the insurance company, got TMS approved (by the grace of God), and started the process in January of 2016, when I was 23 years old.

Long story short:

Many psychiatrists believe ECT is the most effective way to help patients with severe treatment resistant depression. But for many patients who also suffer from dysautonomia, it’s just not an option.

But TMS *is.*

And it’s a really, really, really good one.

*

Sources


How to cure your depression with magnets

Depression seems like it should be so easy to cure.

  • Go to therapy.
  • Maybe take anti-depressants.
  • Exercise, eat well and hydrate.
  • Think happy thoughts and avoid things that make you miserable.

Boom! Depression cured. It’s so simple.

Except it’s not that simple. It’s never that simple. Because depression is a monster.

I followed this routine for 12 years with occasional periods of success. Those periods were marked by success in school, new friendships, personal projects and laughter.

But overall, I had a lot of falls in my mental health. Over and over again.

Each time I would stumble and fall, my therapist, psychiatrist and I would consult and we’d create a new plan of attack. How can we approach this depression differently? What makes this situation different? What have we learned in the past that we can use now?

But by the time I entered my 20s, I was exhausted with picking myself up after these falls. Not only was I picking myself up, I was picking up over a decade of emotional baggage that I couldn’t shed no matter what I tried.

We considered different intensive treatment options over the years that ended up not working out for a myriad of different reasons. But in the fall of 2015, my psychiatrist proposed something new.

Transcranial Magnetic Stimulation. TMS.

He pitched it as a funky magnetic device they’d put on my head, my scalp would feel tingly, and afterwards my depression would be gone. It’d take a bunch of sessions but my depression would just go away after a while. Minimal to no side effects. The only catch was that my insurance might not cover it and it cost $15,000 out of pocket.

To which my psychiatrist added with a dejected look on his face, “I really wish you had $15,000 laying around somewhere.” (Don’t we all?)

We nervously sent in a request to our insurance and went around to my doctors to see what they thought.

As we learned more about TMS it seemed like the perfect procedure for me. It got my cardiologist’s approval—he wasn’t worried about any interference with my dysautonomia. My psychiatrist was excited about it, he couldn’t wait to see how effective it was. And my therapist loved how hopeful I was. She liked the science of it, she liked the promise of it, she liked my enthusiasm about it.

It took a few weeks to get insurance approval. I met all of their requirements:

  • I had tried Cognitive Behavioral Therapy.
  • I had tried four or more different psychiatric medications (there were specific rules about what types of medications they were, but I think I was on four anti-depressants at the time I submitted my request. I was more in the 25+ range of medications.)
  • My psychiatrist believed I would benefit from TMS.
  • The psychiatrist at the TMS practice believed I was a great candidate after reviewing my records and meeting with me.

The day I was approved by insurance, I cried so many tears of joy: this was happening. This was promising. This could be life changing. We’d start right after the new year.

*

TMS is the most bizarre medical procedure I’ve ever had.

  • tms-chair

    this creepy chair will make you not depressed!

    You go into a room and get into a very interesting looking chair.

  • They put a weird paper crown around your temple that velcros into the machine to hold your head in place. (I always thought it would be a really good base for a flower crown and considered taking some extras home and using it as such.) You put ear plugs in.
  • They raise the chair up and lean you back.
  • They put your head in place and align you with weird protractor looking tools that are attached to the chair.
  • They bring down the coil/magnet and place it against your head.
  • They bring down the counter pressure place it against the opposite side of your head to hold you in place and to make sure your neck doesn’t hurt from the weight of the magnet.
  • They turn on the machine.
  • It feels like a woodpecker is trying to get through your skull into your brain at first, then you get used to it. But nothing is touching your skull. It’s just magnetic pulses. It’s uncomfortable but not painful.
  • For my depression treatments, it’s five seconds of tapping followed by 25 seconds of peace (repeat for about 40 minutes) on my left side of the head. For my anxiety treatments, it’s a constant tapping on my right side of the head. (Of course, everything will vary by patient, by doctor, by machine, by facility.)
this machine doesn't lend itself to taking good selfies, believe me, I tried.

this machine doesn’t lend itself to taking good selfies, believe me, I tried.

Half way into my treatments, I met with my TMS psychiatrist and we decided to add in a second treatment (called bilateral treatments) every day for anxiety, because my symptoms of depression were getting better but my symptoms of anxiety were not. So every day, I had 40 minutes of !dundundundundundundundundun! followed by a break and repeat on the left side of my head and 40 minutes of a slow, !tap, tap, tap, tap! on the right side of my head.

(Above is a recording of a TMS treatment on the left side. It sounds like a machine gun, but it’s all magnetic pulses. No pain, just strange tapping feelings.)

(Above is my hand during one of my bilateral treatments on my right side for anxiety. My hands twitched a highly abnormal amount.)

I got to watch TV or listen to music during my treatments. I became friends with all of the technicians who would check in on me, ask me how I was, check to see that I wasn’t feeling too paralyzed while strapped into the chair and the machine.

I had almost all of my appointments (36 of them!) at the same time every day and fell into a comfortable routine. I’d watch reruns of Saturday Night Live on Vh1 and had a habit of laughing a little too hard during Weekend Update and would occasionally disrupt my placement in the machine—the machine would recognize that my head was no longer in the right place, sound an alarm, and the technicians would come back in, fix the positioning, and watch the rest of the segment with me because clearly, it was hilarious and worth watching.

*

TMS lifted the depression.

I started getting up a little earlier. I started making plans and schedules. I thought about things I wanted to do and took the steps to do them.

I was approaching problems exactly the way my therapist and I would practice in therapy. The negative voice that lived in my head was spending less time there. And when I was anxious, I had more energy to remedy the anxiety.

These positive steps started happening only two weeks into the six weeks of treatment. By the end of treatment, I felt better than ever. I felt like I was learning to walk on new legs—still nervous about this new life in recovery from depression, a little apprehensive about what post-depression life would be like, but ready.

At my final appointment, my psychiatrist in charge of my TMS gave me a few statistics to keep in mind.

  • Due to the severity of my depression and how long I’d been living with it, I had a 70% chance of relapsing.
  • But because of how successful TMS had been, I had a 90% chance of it working again if I got a second round of treatment.

I took those numbers to heart, repeating that 90% statistic every time I got nervous about relapse. I was high risk, but it was almost definite that I could get back to that amazing state of recovery again. We now knew what my brain required to get out of depression: it was TMS.

*

A month after TMS, (this March) I relapsed.

I was devastated. I was embarrassed, because it was so soon. I felt ashamed that it happened so quickly, as though it were somehow my fault. (I have since worked things out in therapy: obviously, it’s not my fault.)

I met with all of my doctors and we agreed that I should get back into TMS. Everyone agreed that TMS gave me relief like I’d never felt in 13 years and the severity of my depression just needs more intensive treatment. I needed a second round of treatment.

We sent the request into my insurance company and are currently in a battle with the appeals process because they deem it “medically unnecessary.” My insurance company is the only thing getting in the way of me and a cure for depression—because like most families, mine does not have $15,000 laying around to pay for this treatment. We use our money for things like food. And shelter. And paying for medical insurance that later screws us over.

I’m going to hold on to hope that the appeal will work out because I want to live life free of depression for longer than weeks at a time. I have an idea what I can be beyond my depression and it’s pretty great. I want to be be that productive, be that worry free, feel that light and think that clearly. I know that I deserve that. And somehow, it’s magnetic pulses on my brain that can give me that.

*

If you have any questions about TMS, please feel free to reach out, I’m happy to talk about my experience with it. And if you have any science based questions, hit up these resources:

More information about TMS