So I guess it’s official. I have treatment resistant depression (TRD). Today I finished the third and final intake to the MHealth/Fairview Treatment Resistant Depression Clinic. More about that later in the post. You’ve never known me to take the direct or short route, why start now?
Last Friday I started another Partial Hospitalization Program (PHP) with a different organization. My previous care team referred me to it, as well as the TRD clinic. I’m not saying they gave up on me, but I did finish my almost complete consumption of their full menu. (PHP, IOT, ECT, TMS, CBT, etc.)
We scheduled it as a “just in case” because I was finishing my intensive outpatient therapy (IOT) and then going on a 10 day trip that was both fun and (happy) sad and stressful. I wasn’t doing very well before the trip but knew I could rally for it, and not going would have been far worse for me. That said, about halfway through I broke completely and became my sister’s most boring houseguest. Eternally grateful and thankful to her for the Zen-like spa feel of her home and hospitality.
I forgot the word “hospitality” and thought I’d try and work through it. Ended up zoning out and staring at a tree for a couple minutes wondering if catatonia involves “not being there” or if it was just zoning out. This happens to me a dozen or more times each day. Being tired doesn’t help. It’s only for a few minutes or even seconds, but sometimes I lose 10 minutes. According to Wikipedia:
So yeah, just zoning out I guess. But it isn’t any less frustrating to be stuck with no movement when your brain is still going.
It was good we had the “just in case” plan in place, as I’ve leaned into the depression with a fervor since coming home.
It’s a bit different than the other PHPs I’ve done. There is a great deal more education on mindfulness, yoga, setting boundaries — whatever it is, they’re going to cover it. Also, I suspect I’ve caught another suburban therapy. I did DBT a while back and it was in the actual suburbs and I didn’t click with any of the people there or leading the group. My time spent with the hospital five minutes from home, in the city, has been great though. Just the right mix of extreme and/or kooky patients, tough-as-nails-but-still-quite-nice facilitators, and just a few tissue-bearing therapists. This PHP, however, the people are really nice, but so far none of them come close to the dumpster fire that my problems are looking like. Also, the facilitators could all be nuns for the way they speak in calming tones and use extremely generic examples when talking about therapies. (“If your friend borrowed money from you, and didn’t pay you back, the next time they ask to borrow money what might you set? Anyone? Anyone? Boundaries. So if you said no, you would be setting a good boundary.”)
But underneath it all I can sense that they know what they’re doing. My check-in yesterday was rather dour, so the not-nun-in-charge gave me a call to see how I was doing. It was a very pleasant call (for her) but I knew she was calling for a safety check, as during the conversation she asked all the right questions and coaxed all the right answers out of me. They’ve also made it clear, like any good PHP would, that if you’re late for (virtual) group, they’re going to politely call your [*] person-who-gets-alarming-and-or-bad-news-from-the-care-team. If that person isn’t reachable, they’ll call the second person on that list, with a bit more seriousness. And finally, if they can’t get that other person, they call 911 and send the police to your house. So they can make sure you’re not dead. I guess that means they can just break into your house. Bummer. I only know all of this because in my last IOT someone had that happen to them accidentally and we were all able to laugh about it later, but none of us were ever late for group from then on.
[*] zoned again looking for the word, can’t find it, going with a joke instead.
So I’m in this PHP for three weeks and then Lord knows what. I am a professional depressive at this point, so it’ll have to be something. Or of course I could get better, but see post title for my optimism. I know I need to have a good attitude and give effort and work and try, etc. But those abilities are not home right now, if you’d like to leave a message, please hang up and try again much, much later.
Treatment Resistant Depression Clinic Intake
I was going to just use TRD from the first spelling out of the phrase Treatment Resistant Depression, but it didn’t make for a great subheading, so I typed it out. Oddly enough it takes just as long to type and is just as awkward as when I say it out loud. Not only do I have to remember the words, but say them in the right order. That takes at least 30% of my CPU, so everything gets all herky-jerky for a moment.
I was referred by my Psychiatrist, whom I love and trust almost completely. She thought the UofM could maybe hook me up with some next-level stuff, including studies that have better access to new meds and treatments than she has. She’ll still be my primary, but the TRD clinic will guide changes to my meds as needed. It’s actually a nice plan, and makes me feel more comfortable with any future med changes.
Because they need to know everything they can about me, I decided right away that I was going completely filter-less. Depression gives you masks to wear to hide how you’re feeling, and it gives you all sorts of tricks to make it look like you’re a normal human being. Most care team members are too smart for that, so you can’t use those. But you can use filters. This would be omitting information, answering vaguely enough to not be a lie but maybe not be the truth, implying things you know they will infer wrong, and of course just flat out lying at times. I use them very carefully, though. I do want my care team to help me, but it’s all about content, context, and audience. If I’m talking to my regular (GP) doctor, I may sugar coat things just a little bit because some of the information I could give her would cause her to potentially overreact strongly in some cases. Consider suicidal ideation(SI). Passive SI is just wishing you weren’t here. Like you don’t want to die, you just don’t want to feel like you do now. Or maybe even thinking through what suicide would entail and cause. But no plan, no intent. (That’s the phrase I use when I took the PHQ-9 and I get 26 out of 27 points in my weekly TMS check-ins. It’s the magical (legally required?) phrase that lets me off the hook for answering question number nine with a “3 – nearly every day”) So there would be times where my GP isn’t used to certain attitudes and would make notes that use the phrase “extremely high risk.” (True story!)
The intake process has three steps:
(1) Social Worker
Video call with a nice lady who essentially just started from zero and went through my whole history. She had my medical records and had studied them, but wanted to get her own full picture. Given the nature of the questions she asked, and how she asked them I really do think she spent some time reading the many notes in my chart. I’ve read them and it took a long time, and I didn’t even have to absorb the information. She asked questions here and there, and the questions were clear, specific, and showed her level of knowledge not just of me, but what I’ve been through. I could feel the questions sliding past me as I’ve heard some of them a million times. Ope, there goes the question to rule out schizophrenia. And there’s the OCD tip-off. Ooh, that’s a new way to screen for bipolar!
She was brutally frank with me and I was brutally frank with her. I did get a proper shocked expression and further questioning on one question, which both scared and satisfied me. I get callous enough about all of this stuff, and I deal with it so much, that sometimes I say things and forget how awful they are. And to shock this woman who had clearly been around the block a great many times, was a surprise. Aside: When I first went looking for psychiatrists, I found a great one. In my intake with her (many years ago now) she actually misted up and needed a tissue. That didn’t seem like something she did very often. As it happens she had to refer me on, as she had a conflict of interest. But she was so nice. I also have grown so accustomed to this I know when I’ll get a PHQ-9 and a GAD or just a PHQ-9. Sometimes I have to remind them. Also, I like to count the number of hand sanitizer dispensers there are in the waiting room. It’s usually a single digit, but I’m waiting for the 10 pump office!
We took the whole hour to go over everything, and I don’t even think I had any “Oh I forgot to mention that” moments afterward. It gave me hope that they really knew what they were doing.
(2) Med review
Video call with a psychiatrist with a focus on pharmacology and also holistic healing. We were going to go from my first meds in 2001 all the way up to today on the med history, and we actually went further back than that, come to think of it. Now, I have memory issues. You know that. So I was wondering how I was going to be at all helpful given the fact that she has my chart and probably knows more about my med history than I do today. She had a “funny” name that I couldn’t quite figure the origin culture, but it was very clear to me very quickly that she was German. (And I remembered the first name from German class in high school!) Accent and everything. And you know what? I realized I wanted the detail and precision of someone from Germany analyzing my meds. So that was really cool. I go into any intake hoping that the person isn’t mean or gruff or dismissive. And they absolutely rarely are. (I’m looking at you, my first GP who had a habit of scoffing at my ailments.) She was very direct and to the point. In fact, she chastised me for things like any alcohol consumption, or not practicing good sleep hygiene. And I not only felt guilty, but wanted to change my ways to garner her approval! We walked past her office today but she wasn’t in it. Felt like going past my Honors English teachers classroom the day after I failed to turn in an important paper.
We discussed things as well as I could remember, and she guided me through the history nicely. It was once again both scary and fascinating to recount the number of meds I’ve been on that didn’t do a darn thing. Except a few which separately and combined made me a sleepy zombie, gave me my salt-shaker efficiency tremor, a bunch of side effects I don’t even want to talk about, the one that helped me gain 20 pounds in a month, and the one lately that I don’t mind — which has an appetite suppressant. Those 20 pounds are long gone, and I feel that’s just a bit of Pharma Karma.
By the time we were done, I felt a bit chastised but had the same ring of hope as from the first call. They really might know what they’re talking about!
(2.5) Let’s talk about the present
Monday was one of my worst days yet. Only to be unseated by Tuesday. So today the depression and anxiety thought they would continue the party, and both pitched in to help. My tremor was going full earthquake in hand(s) and legs (when I go down stairs I feel it, it doesn’t help going down stairs, BTW). Anxiety really stepped up and I had the full body shivering like I was cold – hadn’t had that since March, so a real throwback. And because I was going out into public, I needed to shower. I think I’ve explained how onerous that is. Depression wasn’t letting Anxiety run the party, so I had that going on in the background. Hard to get out of bed. Also, I had an early 8:45 call (for a professional depressive that’s early) with the PHPs Psychiatrist. Part of a partial hospitalization is regular and frequent med reviews and changes. I was worried she was going to offer another med on top of the layers of history I already had not working for me, so I was stressed out about that too. Someone at some point in the intake had mentioned the possibility of a mood stabilizer. And I was ready with a great argument about how I only had one mood and it didn’t need stabilizing. But it turned out to be more of a meet and greet and status update and check-in. She was very nice, and seemed competent. So I was your basic ball of nerves on top of hopelessness. An annoying cocktail to say the least.
(3) Psychiatrist, aka Real doctor (this was today)
I was meeting with the first male care team member I’d had in at least more than a decade. I remembered my past experiences with men who shrink heads, and started to get a little nervous. On top of the day’s feelings. Again: Dismissive? Condescending? Gruff? (I forgot to worry about “too young”) While I was working on that nervousness I heard a familiar yet unidentified sound. It was like a series of clicks, then nothing for a bit, then more. Yeah, turns out I was sitting next to a TMS room, and that was someone getting their left lobe magnetized. I will always remember that pattern.
After the nurse did my blood pressure and vitals, as she was leaving I thanked her for not asking how I was, as that’s another phrase I’m learning to hate. I always want to say “Do you want OK, or do you want the detailed list of problems?” She laughed and said she’d try to remember that.
As it happens, my psychiatrist is Dr. Guillaume Secretan (played by Stephen Mangen) from the hit BBC comedy, Green Wing. In the show he’s a bit cavalier, but a stunning doctor behind that mask of humor he always uses. Ok, mine wasn’t like that, but he looked like him! And while he was younger than me, he wasn’t that young, and I got a sense of professional competence from him.
We had the usual Q&A, and he admitted to (actually) studying my history, but just wanted to know how I was doing, “what brought you here today” and what did I expect to get out of the program. He was asking very specific questions that sounded like screening questions, but were very different than the usual phrasings. Which was kinda cool. I’ve been through enough and read enough online (I’m an expert because I read an article on Facebook) that I usually know what they’re talking about when they start to explain things. A couple times he said “but you probably already know this” and he was right. It was a classy touch. He knows his patients have been in the business for some time now.
I mentioned being filter-less with him, and even dropped a “no pressure, but you’re my last hope” on him and he handled it well. We talked for a good while about how I was feeling, how I felt about it, the depth of different issues, etc. Popping in with (again) very insightful questions that made me feel heard and understood. All on track to be 3/3 on the intake hope score. I talked more openly with him than anyone yet. I know that’s a tough phrase to hear for some of you, but everyone up until him got a mask or a filter. Everyone. It was a good conversation and I’m not going into detail. But it felt like a conversation about my malady, not one sided or the usual situation where I explain everything knowing full well I’ll have to explain some of it again next time. He was taking good notes.
And then we got to solutions. I didn’t think I was going to go in and get a magic pill that would cure me in an hour. So much for 3/3 on the intake hope score. Given my regular care team’s response to the request, I didn’t think he would go for “euthanasia by my care team” since they couldn’t fix me. Nor was he open to a medically induced coma until I was better, so I could skip the hard part. I know we talked about me wanting to detox off all my meds and start over, but don’t remember his response. I don’t know if it was an option as either in or outpatient, but he didn’t laugh at that one.
As we talked about options I have to admit I slowly began to check out a bit. It was that realization of how much I have in front of me yet, and I wasn’t handling that well.
The first thing he offered was ECT, but said he understood my reluctance due to the memory and cognition thing. He said if my response had been all gung ho and positive about it he would have made that the recommendation. It’s still on the table. The next thing he mentioned was a longer term solution, Vagus nerve stimulation. (VNS from now on) This involves the placement of a doohickey under the skin and a wire leading to the Vagus nerve near/in/under(?) the brain. I had read about it, but not much as it’s pretty new and really on the extreme end of therapies. It’s a simple concept:
It’s got one of the coolest possible side effects – “trouble talking” – which I think my wife might enjoy. Also, no spelling checker is comfortable with the word Vagus.
The last word is really the only one that I knew, and that I knew was important. It’s the brain process that Monoamine oxidase inhibitors (MAOIs) address. We had also talked about MAOIs, which is a whole class of drug I’ve never tried, mostly because they’re really old and some of them verge on barbaric. From what I know, VNS does what those drugs do, but much, much, MUCH more thoroughly.
Here is a ridiculously cool page about VNS with pictures and stuff.
Downside to VNS is that the process for approval, then intake, consultations with the neurosurgeon who does the procedure, and getting one booked can take a Very Long Time. So that’s a great long term strategy, but I reiterated that a year was too long. Also, it can take up to a year to actually start working. So that’s 2023 or so. If it works. Efficacy is 40-50%.
He had some short term options already queued up in the interim. The one we settled on was Ketamine. Whenever I tell someone (Facebook experts like me) that I have depression the response is usually “Oh! You should try Ketamine!” — like you can just go buy some and bang! you’re cured. I know it’s in the news a lot, and everyone seems to have a friend of a relative who had it and it was totally like night and day (every therapy has a testimonial that says that from someone, which I’m sure is true, but never for me..) Also, there are different variations, some FDA approved and some not. There’s IV administration or muscle injection or nasal spray. So many different factors and insurance unknowns that it’s not really “one” therapy that anyone can use. In fact part of the reason I was referred to the TRD clinic was because they had the best access to it, with studies and such, since they’re a university affiliated team.
Many people know about Ketamine as a drug of choice back in the rave days to today. It’s a highly controlled substance, so even if you get the nasal spray, they’re going to be doing the spraying in your nasal. Professionally, it induces dissociative anesthesia, a trance-like state providing pain relief, sedation, and amnesia. I’m already planning the playlist for the administration sessions. It’s not always a trip for everyone, but just in case, they keep you around after they administer it. Not sure if they have a proper rave chill out room, or what. I’m a little excited to let my doctor get me high.
Again, Ketamine needs insurance jockeying, appointment availability, etc. So while it’s a quick fix, it’s not tomorrow or next week. Hang in there.
Oh and of course, both VNS and Ketamine come with the “we don’t really know how it works, or why it works, but hey! It seems to!” Most therapies are not to get rid of depression, but to get it to a state in which you can live with it, and maybe go into remission but don’t hold your breath. It’s usually something like “for 50% of the people who try it, they get up to 40% reduction in depressive symptoms.” In that example, that’s a 50/50 chance you’ll feel less than half better. Science. What they’re looking to do is to hopefully pull me back from a 26/27 severe depression score to something more manageable like a 15/27, which is “moderately severe depression.” Just typing that made me 2% more depressed.
During the hour, he had been looking at his phone on the sly (I think we both knew it wasn’t very sly) and I started to get worried he was looking to get a status on the guys in white jackets – you know, the ones with the big net and a straightjacket — because clearly he was thinking I needed to be put away where all the silverware is plastic sporks and you have to turn it in at the end of the meal, also known as “the grippy sock hotel” because that’s all you can wear on your feet. But apparently he was just checking to see if the Jaguar dealer had this years model in for him yet or something.
When we wrapped up I told him about my
lovehate for Hang In There, and he looked me straight in the eyes and deadpanned. “Well, then, hang in there.” That right there made me like him all the more. He walked me out and I was sure he was about to lead me by grabbing my arm until the white jackets appeared and put me in the loony wagon. Seriously, I spend a lot of time holding my breath about that after talking to people. But they weren’t there, and I didn’t have a copay, so I just wandered out. It was a lot to take in.
I sat in my car in the parking lot for a very long time just thinking. For some reason it felt like I’d been given the news that I had a terminal disease. I know that’s a bit melodramatic, but it’s how I felt. It’s a special kind of sadness reserved for those times when there just isn’t an easy answer.
And then I went and had a Whopper, because trying to start an eating disorder makes you hungry.