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.”
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!
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.
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.
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. 🙂
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.
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.
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.
New nurse – or is it old nurse and new nurse was last week? Waiting room crowded, like standing room only by mid morning. But we were seated so there you have it. Same routine, lots of waiting, bad TV shows in the lobby.
No signs of the depression changing, but we’re going to go another week before we turn the power up. Had a headache and general “icky” feeling all day after treatment. Even with a midday nap. Slept poorly last night. Feeling like this paragraph is backwards.
Dizziness, headache, a little jaw soreness, and general anxiety made the day pass slowly. But got to practice music and play some video games.
Wife and I went to see our son this last weekend and it was a nice break, albeit tiring. Everything I do takes twice as much effort for some reason. But it was good to spend time with him and meet some of his friends at college. He’s doing really well and we’re proud.
Long day tomorrow so resting for the remainder of my evening. Daylight savings time is messing with my pacing for the bedtime marathon.
So that’s three treatments complete, one week down. Time for a personal inventory, I guess. I don’t feel that much differently. I am still a little hopeful, but have been feeling the depression all week as well.
The staff at my hospital are great. They take the time to explain everything, carry out they procedures with my comfort in mind, and laugh at my jokes. The laughing is the true test.
We’ve been managing the logistics fairly well, though still dialing in the timing of appointments. After going early and having to wait a long time, we adjusted to going later – but still ended up waiting a while. So back to early it is. Not driving is a bummer, but it’s also nice to be able to look around while riding to and from places, and to be able to critique whomever is driving. 🙂
Physically I’m not really in any pain. Sometimes a headache, but really the only painful part is getting the IV.
So overall I’d say things are going pretty well, with no obvious changes in mood. Wife might argue that I’m a bit brighter than usual. But still feeling the funk.
Update: I just remembered, the nurse said the mood ring went all rainbow colored last time! Multicolored and changing!
Apparently I published the draft of this post five hours ago. Oops.
Today after the procedure, my jaw ached for a little while. Doc says I keep having really good seizures, and I’m guessing this and the calves are a side effect.
My legs are a little loose for a few hours afterward. Not completely unsteady, but not so sure on my feet that I’d want to play basketball. Ok, yes, it’s actually more true that I would rather never play basketball, but it was the best thing I could think of.
I will never be able to spell seizure without spell-check
The above makes more sense now that I’ve googled what the procedure looks like. I found a British clinic doing it and even though there is muscle relaxant, the patient really was seizing, physically. In a controlled environment, and attended to properly, of course. It was fascinating, but if you don’t want to be able to picture me having a fit, don’t google it.
Also, I’ve got random IV holes on the left and right hands. That’s the worst part, getting stuck for the IV. But they’re pretty darn good at it and it’s as painless as possible. I can “smell” the saline when it starts flowing into my veins, which is really odd, but lets me know they’re almost done with the ouch part.
The lobby was showing “Kelly and Ryan” and “The View” on the TV, and to be honest that’s more anxiety causing than the thought of a medically induced seizure.
Wife and I are off to see the Son down south at college. May even get to meet the new girlfriend – no pressure! He’s going to get a body crushing hug, as the last time I saw him I wasn’t sure I’d ever see him again. That sucked.
It will be a good weekend away in the more tropical climes, sipping drinks on the beach – just what we need. Ok, so no drinks or beach — just cornfields. But lovely to see the boy again. We even sprung for the one motel in town, as opposed to staying in the large cities nearby for less money.
One of the things I’ve learned in the day program is the concept of GLAD. It’s the idea that you every once in awhile or at the end or beginning of a day go through the acronym GLAD and say:
one thing you’re grateful for
one thing you’ve learned
one thing you’ve achieved and
one thing that has delighted you.
the family and I have started doing this at dinner and it’s a great way to spark conversation about your day and to find out how everybody is doing. Of course it’s a great way to express your gratitude which is a very important part of working with depression and anxiety.
So today I am:
Grateful for a warm home on a chilly day.
I have learned a little bit more in my practicing music.
I have achieved getting up at a decent hour and being productive in the morning.
And I have delighted in some Captain crunch cereal.
Ok that last one might be a stretch but it was pretty good. so when you have a moment go to the acronym think about what you’re glad about and see if that helps.