Tag: TMS

A view of green trees and shrubs on a mountainside

TMS, Seroquel, and Sudden Relief

Genevieve2 Comments

Initially, my extended TMS course didn’t seem to have much of an effect on me, except perhaps to kick my insomnia into a higher gear. After much thought and discussion, I decided to stop TMS suddenly rather than taper my appointments.

Getting TMS treatments every day had begun to feel pointless. We’d tried several adjustments and protocols, remeasured my motor threshold, and extended my treatments beyond the planned schedule, but none of it made me feel any different.

At this point, I’ve tried what feels like an exhaustive list of medications. Combine that with my lengthy treatment with ketamine infusions, years of therapy, and now TMS, and I can’t help but see a hopeless picture. I know I’m not out of options, but the pattern leads me to conclude that any further effort to get better will result in the same outcome: more depression.

However, I know that’s a logical fallacy. Just because many treatments didn’t work does not mean that the next one won’t work. It’s hard to grasp that when you’re deep in depression, though. I left the TMS clinic feeling hopeless. It’s indescribably discouraging to try treatment after treatment, clinging to a tiny scrap of hope that just gets smaller and smaller as you go.

I sometimes feel as though I’m trapped inside myself, carried along by my depressed body like a prisoner. I’m in here — I’m just unable to break through the impenetrable walls around me no matter how hard I try. At other times, I feel as though depression has eroded my mind, letting the essence of me wash away. The “me” I am when I am not depressed seems to be gone. The movement stops, the lights go out, and I wait in internal darkness for some motivation to stir in my mind. The little scrap of hope flutters somewhere out of reach.

The second version is how I felt when I stopped TMS.

Ending TMS meant that I needed to consider my next steps. ECT is one option, and I’m interested in doing a consultation, but the thought of actually starting that process is daunting. I had increased my dose of Emsam, the MAOI I take, and figured I would wait a little while before doing anything. In the meantime, I wanted to get a handle on my insomnia.

Sleep Meds

I did not sleep more than five or six hours a night in the last two months, so that’s been a barrier to my mental health, too.

Temazepam

Increasing my usual sleep medication helped but then plateaued, so eventually, I decided to try Temazepam. I was a little nervous about taking it because I don’t like feeling impaired, especially if I’m uncertain of how it will feel. But alas, I was tired. I read the medication info sheet front to back because that’s the kind of person I am, took the pill, and prepared for a blissful night of uninterrupted sleep.

Yeah, right. It was one of the most unpleasant nights I’ve ever had. I was unbelievably restless – not just my legs but my whole self. I didn’t stop moving for hours. I was too hot, so I moved downstairs to the couch, but then I could feel my heart beating, and the sound of my breathing was grating in my ears. Sometime around 4 AM, I fell asleep, only for the sun to come up two hours later.

Some people (but not many) have paradoxical reactions to benzodiazepines. I now know that Temazepam is not for me. It was a learning experience.

Seroquel

One category of medications that I had not tried before now is the atypical antipsychotic class. Seroquel is a drug in this category. It’s used as an off-label treatment for depression, and it is also sometimes prescribed for insomnia due to its sedating effects.

I decided to switch from Trazodone to Seroquel, and overall, it’s been a positive change. I started with too high of a dose and had an unpleasant day afterward, but I quickly adjusted. As long as I give myself enough time to sleep it off, I no longer feel sluggish and half-asleep when I start my day.

I’ve managed to increase my sleep to six or seven hours a night. Although it’s not an enormous difference in terms of hours, I feel like the quality of my sleep is better. I no longer wake up during the night, and I feel slightly more rested overall.

It probably helps that I reduced my lithium dose a little and don’t wake up feeling like a dried-out sponge several times a night. I keep my ridiculous 64-oz. water bottle by my bed for easy middle-of-the-night hydration. My psychiatric np finally told me so many times to drink more water that I stepped up my efforts and bought it. It’s so big that it’s basically an insulated bucket with a lid, and I love it. I don’t have to deal with the extra step of refilling a glass or smaller bottle frequently. It’s a silly reason to not drink water, but when I don’t care about myself enough to keep up with hygiene or eating, refilling a glass of water is surprisingly challenging.

Restarting TMS

But, I digress. After a few days of no TMS, I found myself feeling – impossibly – worse than before. Whether that was because TMS was helping in small ways or I was simply despondent after giving up on another treatment, I still don’t know. I decided to pick up with TMS where I left off.

The timing makes it difficult to determine which factor caused what result, but after restarting TMS, sticking with the increased Emsam dose, and adding Seroquel, I suddenly felt dramatically better for a few days. I found myself walking Stella with a decidedly peppy step instead of my usual brick-like feet. I suddenly wanted to go places and do things, which is the complete opposite of how I felt before. I actually felt like I could feel the dopamine I had missed so much. I felt happy about nothing in particular.

A closeup of a black dog with pointy ears panting while sitting in the forest.

I always marvel at how impossible it is for me to imagine how it feels to be less depressed. I know it sounds odd, but every time I get some relief from my symptoms, I find that the sun feels warmer, the breeze feels more refreshing, and colors seem more vibrant. I feel like I’ve been released from a state of deadened perception and pushed into a shockingly bright, intense world.

Despite experiencing such improvement before, I’m always taken aback to realize that I could not grasp how distant I felt while depressed. The memory of what improvement feels like disappears when depression returns, and the only way to understand it again is to experience it.

A closeup of the center of a yellow flower outside

The Current State of Affairs

I don’t currently feel as amazing as I did for that brief time, but I do think that I’ve maintained some improvement. I still feel considerably more energetic, and although my mood has embarked on a journey of hills and valleys, it’s nice that there are still hills.

I’m not sure where this will leave me. I’m planning to do three more TMS treatments and then stop. I don’t feel nearly as desperate as I did when I stopped TMS the first time, but I am concerned that some symptoms seem to have worsened slightly since my sudden improvement.

Part of me thinks that now would be a good time to look into eventually making more treatment changes, whether that’s ECT or something else, since I’m still relatively motivated. The other part of me thinks that I should just focus on adding habits and activities to my life that could help me hold on to the improvement, and see where that takes me. I guess I have some decisions to make.

Illustration of a brain outline with colorful shapes connected by lines depicting neural network

TMS Update

Genevieve2 Comments

I’ve been getting TMS treatments for the last several weeks. So far, it has not been helpful for me, and it seems to have worsened my insomnia. I’m extending my treatment past the planned-for 36 sessions in case I’m just a late responder, but I’m struggling to be optimistic.

I mentioned in my first post about what TMS is like that I’m doing the 10 Hz protocol. Seeing no improvement after a few weeks of treatment, we added a priming protocol called intermittent theta-burst stimulation (iTBS) to my usual treatment. This means that the coil is placed in the same spot as it normally is for me, and pulses are delivered at a different frequency and pattern for 2 minutes prior to my usual treatment.

The idea (as much as I understand it) is that the priming pulses enhance my neurons’ response to rTMS, either by preparing postsynaptic neurons to fire by affecting voltage-gated ion channels or lowering the activation threshold at which a signal can be passed on to the next neuron.

It feels very different; the 10 Hz pulses feel like a woodpecker drilling into my head, but the priming pulses (which are delivered at a lower intensity than the regular pulses) remind me of how those springy door stops fly back and forth when you pull them to the side and let go. In the beginning, it feels more like having a rubber band snapped on my head many times per second than being pecked by a woodpecker. As it increases in intensity, it loses some of its sting and becomes more similar to the dull-but-concentrated knocking that rTMS creates.

Overall, I find that iTBS feels more robotic than rTMS, probably because the pulses are delivered in multiple bursts per second. I think the rhythm of it seems less natural than a single burst pattern. Unfortunately, I haven’t noticed much difference with the priming protocol in place.

Next, we added a right-sided protocol. Treating both sides of the head may or may not improve TMS outcomes, but we figured why not try it if the left side alone wasn’t working? The pulses are delivered in the same place as they are in my usual left-sided treatments but on the other side of my head. It’s slow – only 1 Hz, meaning there is one pulse per second. The treatment goes for 15 minutes.

It reminds me of a metronome, and it can become mesmerizing if the conversation in the room stops. There is a light on the TV across from the chair that blinks at a rate slightly slower than the TMS pulses, which is somewhat maddening. Why would TV manufacturers not ensure that their lights blink exactly once per second? Couldn’t they have foreseen that a minuscule proportion of their products’ users would be in precisely my situation? Big oversight on their part not to consider this incredibly niche but potentially loyal corner of the market.

It’s interesting how accustomed I’ve gotten to the treatments on the left side of my head. Adding the right-sided treatment was surprisingly uncomfortable, even at a much lower intensity than my left-sided treatments. Just like with my usual treatments, we increase the intensity of the right-sided pulses within a certain range each time, so it starts out easy and becomes more uncomfortable as we go. That said, it’s gotten less painful with each appointment, and I can always opt to stay at a lower intensity if it’s too much.

I’m still feeling discouraged, but I decided to do some extra treatments to make sure I’m giving it as much of a chance to work as possible. I am, however, concerned about how I’ll feel if I have to accept that it didn’t work for me. Around 30% of people don’t respond to rTMS, which is slightly comforting. At least I can be pretty sure it’s not something I did wrong.

An outstretched hand holding an outline illustration of a brain against a grey background

What My Initial TMS Appointment Was Like

Genevieve3 Comments

I recently started TMS for treatment-resistant depression. My first appointment was an interesting process. Regular visits are fairly straightforward, but there are a lot of steps to complete in a first TMS appointment that set you up for the rest of your treatment. Here’s how mine went.

I arrived at the clinic at my appointment time and went into a room containing a large machine with a digital readout connected to a tube with a peculiar-looking black attachment at the end. The room looks rather like what you’d expect if a therapist with a special interest in neurology suddenly switched fields and became a dentist. There’s a painting with uplifting words and two matching prints of the human brain on the walls, a mechanical reclining chair complete with a little paper bib over the pillow, and a desk with a computer and monitor. The walls are a relaxing shade of dark teal, and there’s a TV mounted at eye-level across from the chair.

TMS Mapping

The psychiatrist and two technicians were present, and they began by explaining what would happen. The first portion of the appointment would be dedicated to “mapping.” First, they would place a white cap on my head and take lots of measurements that would be used to mark the location of a couple parts of my brain. Then, I was to sit with my right forearm resting on a pillow on my lap while they held the magnetic coil (the black attachment at the end of the tube) up to the left side of my head and delivered pulses of varying intensity into my motor cortex.

Cortex sensorimoteur1.jpg: Pancratderivative work: Iamozy, CC BY-SA 3.0 https://creativecommons.org/licenses/by-sa/3.0, via Wikimedia Commons

The purpose of this part of the process is to determine the lowest intensity that causes the patient’s thumb to twitch involuntarily. That intensity is known as the motor threshold. Mapping allows providers to tailor the patient’s treatment to specific parameters – the exact spot where the coil should be placed and the intensity of magnetic pulses that is most effective for that person.

What Does the Mapping Process Feel Like?

I found this part of my initial TMS appointment to be fascinating and a bit intimidating. As someone who hates being the center of attention, having three (very nice) people hovering over me, touching the cap, and stretching a tape measure over and around my head was uncomfortable. You only do it once, though, so that cap is now used for all of my treatments.

Determining my motor threshold was the fascinating part. I sat with my elbow bent and my forearm on my lap, oriented with my palm slightly up so that my thumb was visible and unhindered. The team placed sticky electrodes on and around my thumb and connected them to a machine next to me. I was asked to relax my arm as much as possible. The coil was held in contact with the cap. It produced a clicking sound and a small tap on the side of my head when pulses were administered. As they worked, the psychiatrist and technicians watched my thumb for movement and checked the readout on the machine for spikes in electrical activity.

Although it was bizarre to feel my hand moving without my conscious direction, nothing about the process was painful. It’s like when you develop a temporary eyelid twitch; it’s maybe a little disconcerting, but that’s about it. Subsequent pulses became less intense and had mixed results. A slightly different spot on my head would cause all of my fingers or even my wrist to move. Eventually, we landed on my motor threshold, and the electrodes were removed from my thumb.

The First TMS Treatment

At this point, I think I put earplugs in, but I might have done that earlier. Once I was tilted back in the chair, the pillow was adjusted, and someone held the sides of it up by my face. The air in the pillow was then vacuumed out, leaving a stiff, shell-like nest for my head to rest in. It feels a bit weird, but it helps keep your head still.

The coil was then attached to a mount connected to the chair. The mount is a mobile arm that allows the coil to be positioned on the patient’s head. Positioning the coil is a delicate business, so the techs did a lot of adjusting, locking it into place, and walking in front of me to look intently at my head from different angles before walking back and adjusting it some more.

There is a paucity of royalty-free TMS images online, and this is one of the only ones that show anything resembling the position of the coil. This image cracks me up. Is it the inexplicable lack of a shirt? Is it the arms held out to the sides? The coil descending from the heavens on a pole? I don’t know, but I love it.

(MistyHora at the English Wikipedia, CC BY-SA 3.0 http://creativecommons.org/licenses/by-sa/3.0/, via Wikimedia Commons)

What is “Intensity” in TMS Treatment?

We started at an intensity below that of my motor threshold. Intensity is measured in terms of relative percentages. When mapping, intensity is expressed as a percentage of the total output the particular brand of TMS machine you’re using is capable of producing. The motor threshold exists at some level of intensity, which means that it is also expressed as a percentage. For instance, mine is 32% of the TMS machine’s total power.

As the appointments progress, the intensity of the treatments increases. The easiest way to think of this part is to consider the treatment intensity as a percentage of the motor threshold. So, my motor threshold of 32 is the new 100%, and each treatment is set to an intensity that’s described in relation to my motor threshold. We started at 60% of my motor threshold (19 or so on the machine) and bumped it up a few times during that treatment, reaching about 70% by the time it was over.

What Does TMS Feel Like?

I knew that there would be a series of sounds and accompanying taps on my head, followed by a period of a few seconds of nothing, then more taps, and that would repeat. My insurance will cover the “10 Hz” protocol (10 Hz refers to the frequency of magnetic pulses), which follows a 75-repetition pattern of four seconds of pulses (known as trains) and 11 seconds between trains. A frequency of 10 Hz means that there are 10 pulses per second (and 40 pulses per train). 40 pulses times 75 repetitions equals 3,000 pulses per treatment. Each treatment under this protocol lasts 18 minutes and 26 seconds.

Initially, the “taps” didn’t feel much like taps at all. It was like drops of cold water were falling from a great height into a small hole in my head. The sensation would spread out from the center, although it remained restricted to a very small area. When each train ended, so did the sensations.

Every few minutes, someone would ask me if they could turn the intensity up a notch. As the intensity went up, the pulses felt more like tapping. I found it uncomfortable but not painful at that level.

A woodpecker makes for a good analogy when describing how it feels. At lower intensities, it’s like a small bird — maybe a downy woodpecker — that’s persistently curious about the acoustic properties of your skull. The higher intensities I’ve reached in subsequent appointments have replaced the little woodpecker with a much larger one, like a northern flicker.

Downy woodpecker
(Joshua J. Cotton on Unsplash)
Northern flicker
(US Dept. of State)

Speaking as someone who has been licked on the forehead by a flicker and had one land on the top of their head (I worked at a wildlife rehab center), I can say that, like a TMS machine, they make a lot of noise and have incredible persistence. Thankfully, unlike flickers, TMS machines do not scream, and you can stop them whenever you want.

The machine is pretty loud — both the beeps it emits and the clicking pulses — but the earplugs help muffle the sound. The coil is heavy, and I was very aware of it resting on the side of my head. It did help me remember to stay still, though. Talking was a bit challenging, as I’m used to relying on nodding and shaking my head to supplement my conversational skills. I felt rather stunted without it, but we muddled through.

After that, my first TMS appointment was over. I had been a little apprehensive about it, but it turned out just fine. In fact, it was reassuring to know what it felt like and what I could expect going forward. Sometimes, the best way to handle uncertainty is just to jump in and get started.

a black and white illustration of a woman standing in front of a window in a dark room at night

Shifting My Depression Treatment from Ketamine to TMS

Genevieve3 Comments

Unfortunately, ketamine is not helping me much anymore. The infusion before last gave me a small boost, and I remember feeling good for about five days following my appointment. Some of the other benefits I get from ketamine, including improved appetite, fewer thoughts about self-harm and suicide, and more energy, still seemed to extend for a week or so post-infusion. On the whole, though, I wasn’t feeling encouraged.

My most recent ketamine infusion came just a few days before I started transcranial magnetic stimulation (TMS) treatments. I have almost no memory of that infusion. The day after the infusion did seem better, and I had the sense that things around me seemed a bit brighter or more colorful. I hate to say it, but aside from that mild improvement on that particular day, I don’t think the infusion did much of anything for me.

So, I’ve decided to stop getting ketamine infusions for the foreseeable future. It’s unclear why they stopped helping me, so I’m not opposed to keeping the option of restarting them in my back pocket. Right now, though, I don’t think that continuing them is providing much, if any, benefit to me.

Lithium and My Poor Kidneys

I’m disappointed that I’ve come to this conclusion about ketamine, but I’m also in a slightly delicate spot, and something needs to change.

Image by chenspec on Pixabay

I increased my lithium dose in March because my mental health was deteriorating. Lithium is probably the medication that I have the most conflicted relationship with. Taking such a high dose is effective at reducing my suicidal thoughts, but it’s not ideal for my poor kidneys. And when my kidneys can’t keep up, my lithium levels begin to inch toward toxic.

My lithium level as of a few weeks ago was slightly above the upper limit of “therapeutic.” It’s back in range now because I’ve been working on doing that human thing where you drink water, but I’d still rather not take this dose of lithium for very long.

Deciding to Try TMS

It’s the combination of ketamine’s waning efficacy and lithium’s waxing toxicity that led me to TMS. I’m not in a good place, and I need a different solution. TMS is mostly covered by my insurance, there’s a clinic I like close to where I live, and the downsides of trying it are very few.

Initially, I considered continuing ketamine while doing TMS, as one could receive both treatments concurrently. I’ve opted to do TMS alone because ketamine is not offering me relief and no longer seems worth the expense. However, it’s possible that ketamine is helping me more than I realize, and stopping infusions might worsen my depression. I’ll just have to see how it goes.

I also considered ECT because of how severe my depression was before I increased my lithium dose, but I think it makes sense to try TMS first.

I’ve done a few TMS treatments so far, and they were strange and interesting experiences, but I think I’ll save my descriptions for another post.

Setting Ketamine Infusions Aside

It makes me rather sad to think that this part of my life is over. I’ll miss the wonderful people at my ketamine clinic, and I’ll miss writing about my experiences there. I’m glad I documented my ketamine dreams, which I will remember with equal measures bemusement and fascination.

I’m also upset that I’ve “failed” yet another treatment. It’s a discouraging development that leads me down well-worn paths of self-criticism and frustration.

That said, I’m incredibly grateful for the improvements I gained from ketamine. There was a while there where it was really turning my life around. I started volunteering, I was happier, I felt excited about life, and then the pandemic hit, and a series of stressors undid all the positive progress I’d made. (My therapist would remind me that not all of my progress was lost. That’s just my brain lying to me again.)

Although I won’t be getting infusions, I would love to keep up with the research and continue sharing information about ketamine. I would especially like to see what data exists on the long-term efficacy of ketamine and whether my experience of it is represented in the literature. A quick search shows tons of studies published in 2021 and 2022, so there’s certainly new information out there. My brain power is lacking, though, so I’ll have to save that for another time as well.

Photo by Brad Christian on Unsplash (@y_barron)

I still believe that it’s important to raise awareness of ketamine treatment for depression and reduce the stigma associated with it. It may not be working for me right now, but it’s still a valuable option that people with treatment-resistant depression should be aware of.

So, I’ll leave the door open for further posts in The Ketamine Chronicles. I still want the series to be a resource for people who are considering IV ketamine infusions and find first-person accounts helpful or reassuring. I hope I’ve accomplished that to some degree in this phase of the series. If you’ve been reading for a while or just started, thank you for clicking and scrolling and reading about my bizarre, profound, and nonsensical ketamine dreams.

roadsigns-pointing-different-directions-at-golden-hour

Considering My Next Mental Health Treatment

GenevieveLeave a comment

I have an appointment coming up with my psychiatric nurse practitioner, and that means my thoughts frequently settle on the effectiveness of my mental health treatment. By now, I’m familiar with the questions she’ll likely ask me, but somehow the answers never come easily. Determining how I feel is not something I’m very good at, although I’ve gotten better at it. This time, I’ll attempt to describe the seemingly endless plateau of “meh” on which my mood currently resides. I have occasional dips into the dark chasm of “really bad,” but for the most part, things are ok. But as I decided after I was released from the hospital, I’m not settling for “ok” this time. I want to feel great, exuberant, joyful, even- happy. Happy would be good.

At this point, it seems like I’m running out of viable mental health treatment options that come in pill form. I was told I was a candidate for and encouraged to try Electroconvulsive Therapy (ECT) while in the hospital (a treatment that has changed immensely since it first began). My mother’s worried googling turned up IV ketamine as a promising treatment that my psych NP also encouraged. I knew people in my partial hospitalization program that moved on to do Transcranial Magnetic Stimulation (TMS). These are all safe treatments that, if they work, can change your life for the better. So, why am I so resistant to the idea?

I think it comes down to acceptance. When I first became depressed, it took me a long time to get to a place where I felt comfortable taking antidepressants. I clung to (and sometimes still do) the idea that if I just tried harder, all my problems would be solved. This is because, like many of us, I’m way too hard on myself. But it’s also because it was scary to fully accept that I have an illness that can’t be overcome through sheer force of will; a fact that my biochemical imbalance predetermines. On one hand, taking responsibility for your mental health is an important part of managing it. On the other, there’s an element of frightening imposition that comes with accepting that the very fact of your diagnosis is out of your control. I carry my depression around with me- not by choice or through lack of effort, but because its complex tangle of symptoms, neurological effects, and genetic alterations are not things I can leave behind.

Despite coming to terms with the apparent chronic nature of my depressive episodes and the fact that right now, I need antidepressants, I see this next step in mental health treatment options as Phase Two of my personal acceptance hurdle. It was tough to accept that I needed antidepressants, and now it’s tough to accept that I may benefit from another level of psychiatric treatment. I like to mull things over for a very long time, so until or if I decide to make that leap, I’m just considering it.