Last session

Today I had my last standard session. I’ll be coming back in a week for a follow-up session but that’s the end of the normal sessions.

I’d like to say I’m much improved but if anything I feel I’ve slid backwards a bit. My memory is not great, and I find myself having to stop and work to remember the simplest things. My outlook is still pretty down.

I’m tired, bored from not working, and really itching to get back to work. Apparently I need to wait a week after the main treatments end before going back to work. My family indicates I’m not all there these days and that should get better as I get further from the main series.

What it’s actually like

Electroconvulsive therapy (ECT) is a procedure, done under general anesthesia, in which small electric currents are passed through the brain, intentionally triggering a brief seizure. ECT seems to cause changes in brain chemistry that can quickly reverse symptoms of certain mental health conditions.

Mayo Clinic

The night before, I need to refrain from taking a few key meds that can interfere with the seizure aspect. That includes one med to be stopped before 6pm the evening prior to the procedure, and another one to be stopped at 9am or earlier the day prior. Also, I need to fast from midnight onward. So it’s complicated enough that if I get confused, I need to keep track of everything on paper. I can take the rest of my meds right after I get back from the procedure, though.

Side effects can include headaches, jaw ache, muscle soreness and aching. Also, memory issues and concentration. So far it’s been temporary. Through the period in which I am having the procedures, I’m not allowed to drive , and working is not recommended. So arranging for rides to and from the hospital is a fairly large component.

When I get there, I check in with the staff. My blood pressure and oxygen levels are recorded. We go over my meds and indicate when each one was taken last. Finally, there is a discussion about how I’m doing, how my depression is doing, and a discussion about any suicidality I may have.

Once I’m checked in it’s down to waiting. They time it well enough that it’s not a long wait, but sometimes it draws on. And then I’m called into the procedure room.

Funny: I wear a hoodie and a t-shirt, usually a concert shirt. So now when I choose my outfit for the next appointment, a concert tee is usually involved.

When I enter the procedure room, there’s a quick chat with the doctor to talk about what we’re doing, how I’m doing, and other random things. Meanwhile, I’m hooked up to a blood pressure cuff, oxygen sensor, electrodes are stuck to my temples, and an IV is hooked up. I’m also offered a nice warm blanket.

When the IV is finally in, I get a metallic taste in my mouth (presumably from the saline) and they tell me I’m about to go under. A mask is offered over my mouth and they tell me to breathe deep. The room slides away and I’m out.

After it’s all over, I wake up and they get me into a wheelchair. I’m taken back out to the pre-lobby with a new warm blanket placed on me. I’m required to wait in this area for a certain amount of time before being released. I’m offered juice and a muffin (blueberry or bran – I always go blueberry) and it’s nice to finally get to eat something.

When my time is up and I’m allowed to leave, I get wheeled out to the elevator and then down to the hospital entrance. Just like in the movies/television. Happily, we live close enough to the hospital that I’m home within 15 minutes, and then it’s usually right off to bed to catch up on a previous night’s sleep if it was rough, but also to sleep off the whole experience. I’ll often get those daily meds and a bunch of water for myself at that time, too.

After my nap I usually have a pretty big lunch to make up for the fasting, and spend the rest of the afternoon lounging. Some days it’s hard to pay attention to things, other days it’s nice just to unwind.

I do this three times a week, Monday Wednesday and Friday.

Groundhog day, but for disappointments

Part of the fun of forgetting and not remembering is the occasional recollection. Like how I keep forgetting and then remembering that my psychologist, who I really connect with, is leaving her practice. So I need to find a new one. But I can’t remember what the plan for that would be, or if there even is one. I think it’s just looking up possibilities on the psychology today web site. But I’ll forget that again soon.

And then I’ll get to remember it all over again in a few hours or a day, and get to be disappointed all over again. It would be great if I was forgetting that I won the lottery or something, but as near as I can tell that’s not the case..

Screwed up and screwy

Spent the weekend feeling like I was ab0ut to jump out of my skin. Restless and having trouble remembering the simplest things. Started and gave up on two craft projects, a ship’s model and at least one knitting project.

A couple of my meds actually have anti-seizure properties – and I accidentally took them on time last night. So today’s ECT would have been thrown off by the meds and thusly got cancelled. So I feel dumb on top of dumb, and my schedule gets pushed out another day. Meanwhile, I’m still forgetting things and feeling like a space cadet.

Sometimes it’s hard to tell if it’s the depression, the treatments, or the meds making me feel good or bad or up in arms. But I’m feeling about as out of sorts as I ever have, and it’s frustrating as hell. Everybody is being super supportive though, which helps.

Catching Up

Waking up felt like waiting up for the first time. Everything seemed familiar, yet new. I had to be reminded of a few scheduling things, and there’s a general sense of “new” to everything. It’s pretty surreal.

And this anecdote from the wife about yesterday:

Coming out of bilateral ECT Wednesday, I asked if you would be up for Group in the afternoon.  You replied “Group?  What is Group?”  I said it was your therapy group led by <therapist>.  “I’m trying to picture it.  I just don’t know what it is.”  I called <therapist> to report the situation and say I didn’t think you could make it.  After hearing that, you said “I feel bad.  I think I like <therapist>, but I don’t know who she is.”

Wife

Getting Serious

Just want to start off by saying how great the staff at the hospital are – from the front desk to the folks doing the procedure. I may mention the odd electrode left over or this or that, but everyone is very professional, and personable at that.

Today’s experience was a good bilateral treatment. Immediate after effects were a fair bit of headache, some minimal dizziness, and a good bit of disorientation. Forget trying to remember what day of the week it is – the rest of my schedule is a blur. I don’t feel like I have any specific cognitive loss, and my short term memory seems to be filling nicely with new facts. But trying to remember my schedule, when and where group is, etc. proved to be much more difficult.

I’m well attended to, and after a quick ride home I went straight to bed for a long nap. That helped the headache and did manage to clear my mind a bit. It doesn’t help that it’s our first snowfall, so my world before and after this morning are two very different places. While this is an interesting experience, the intensity of Monday and the intensity of today make me wonder just how Friday is going to be! We shall see!

Day Seven: Cranking it up

After a horrible night’s sleep, I went in for my seventh treatment.

The weekend saw no improvement in the depression, so my care team and I decided to switch from unilateral to bilateral on the ECT.

From Wikipedia:

In unilateral ECT, both electrodes are placed on the same side of the patient’s head. Unilateral ECT may be used first to minimize side effects such as memory loss.

In bilateral ECT, the two electrodes are placed on opposite sides of the head. Usually bitemporal placement is used, whereby the electrodes are placed on the temples. Uncommonly bifrontal placement is used; this involves positioning the electrodes on the patient’s forehead, roughly above each eye.

Unilateral ECT is thought to cause fewer cognitive effects than bilateral treatment, but is less effective unless administered at higher doses. Most patients in the US and almost all in the UK receive bilateral ECT.

Wikipedia entry on ECT

The result was a bit more of a headache than usual, and something I wouldn’t describe as confusion, but more like ignorance. Example: When I get home I’m able to take my daily medications. When I went to my pillbox it took a moment to remember what day of the week it was. Not like I had forgotten, but just that I didn’t know. Wife says I’m a bit different today, so she’ll keeping a closer eye on me. Smart girl.

I did come home and sleep for a few hours, which helps the exhaustion but doing normal tasks takes a little more effort. Happily, I’m still able to use the TV remote. 🙂

A setback

It’s hard getting appointments with my psychologist. And a few weeks ago I set up some recurring Tuesday appointments which now conflict with the day program. So we’ve been going week to week trying to set up last minute meetings.

Got a call Friday morning offering a timeslot in the afternoon and that worked out for me, so I took it. Unfortunately, the first topic of discussion (after “how are you doing?”) was her relaying that she was leaving the practice and moving on to a new position in another state. So the therapist that I’ve best connected with is going away. I handled the news as well as could be expected, and I really do wish her the best. She’ll likely be around through December, and I’ll continue to see her through then.

But in answer to my earlier question “how are you” I’m finding that a good answer to that question is “sensitive.” I took the news fairly well, but it’s really sinking in and bringing me down. I do know that I’ll find another therapist, and maybe even one who “gets me” as well as she does. But it’s disappointing and frustrating. And has me feeling my depression fairly intensely this weekend. But I’m getting a lot of sleep and taking care of myself as well as I can. And so is my family. We had a good shopping trip to Target and then hit my favorite restaurant for a yum yum bowl. I’m safe and it’s not putting me in the worst place ever, but I’m definitely down.

Getting better?

So are you better?

everyone

Before we tackle that question, let’s look at the issues at hand when trying to do a personal depression inventory:

  • Depression as identity – Am I a depressed person or am I a person with depression? I have lived with depression for decades. Sometimes it’s once or twice a year, other times it’s the whole package all year long. Regardless, it’s been a part of my life long enough that sometimes it’s hard to know where it starts and ends.
  • I have removed pretty much every stressor in my life. A leave of absence from work, no daily commute, nothing to raise my blood pressure.
  • One of the issues I’ve identified with my psychologist is that I hold onto my depression, and I have trouble visualizing myself without depression.
  • Right now, depression is my full time job. ECT three times a week, day program three days a week, psychiatrist appointments and psychologist appointments, as well as the face-it foundation group. It’s an awful lot of time spent talking about and treating my depression.

How do you measure depression?

How are you feeling? Sad? Down? Depressed? Is it the feeling of depression or is it something more easily measured? If we look at my current PHQ9 score, that’s a 20 – severe – Warrants active treatment with psychotherapy, medications, or combination. If you want to go by the HAMD, it’s 17 points – Moderate depression. If you compared those to two months ago, you’d likely see much higher numbers back then. So technically, I’m a certain amount of better. Does that track with what we’re hoping to see?

How do you measure progress?

When talking about treatments and potential outcomes, most meds (and ECT) consider effectiveness to be a 50% lessening of the symptoms. I’ve never gotten a straight answer on whether or not that’s cumulative – in other words are two effective treatments likely to equal 100% improvement? So I guess we’re looking at those scores above to see if they’re improved by 50% or more.

So, how are you?

But to answer the question, I really don’t know. I feel that I have more “bright” days than dark, and overall my mood has certainly stabilized — a byproduct of one of my meds, to be sure. But has the depression lessened? Yes? Somewhat? I still feel it in my chest, in my bones, and in my head. But even then, what will I feel when I get out into the “real world” again? And how far do we have to go down the rabbit hole to be sure we’ve done enough? If this were a tumor, we could inspect to see that it’s all gone. If there were blood tests to be done, we would know when things were back within the “normal” range. But since it’s an emotion, a mood, a feeling, a state of mind, it’s much harder to say.

In the perspective of suicidal ideation, that’s certainly reduced – but I still have days where I would prefer not to exist. I still go to sleep at night wondering if tonight I’ll pass in my sleep and finish this adventure. But I don’t spend my sleepless hours trying to come up with a plan, if that’s any consolation. So I guess I still have a ways to go.

Day Five: Halfway there?

Tuesday was a busy day. Up early to see my psychiatrist to review my meds. Waiting to see how the ECT progresses before we change anything else.

Grabbed some coffee at the hospital and an uber home. Had enough time to practice playing music before a neighbor gave me a ride to my day program. It’s so nice to have so many people who want to help.

Wednesday’s procedure was as expected. Some jaw pain, dealt with nicely via Tylenol. It’s a little unsettling to know why I have the jaw pain – they use a bite block like this:

but the truth of the matter is that it’s still a seizure. So the little bit of pain is just a reminder of the scale of the procedure.

My care team at the ECT clinic mentioned the blog and that they liked it, and my writing. Hoping to keep up those standards.

As for the day program, a little background: It’s three days a week, in the afternoons. After a round of check-ins for everyone, there is usually a lesson on mindfulness, CBT, ACT, or some other therapy. Occasionally there is some time for art or other creative activities. I find it really useful to have group, and the lessons are always helpful.