CPTSD – Complex Post Trauma Stress Disorder

After a particular discussion with my therapist, she decided she wanted me to do a “PTSD Checklist for DSM-5 “, or PCL-5. Now, I’ve taken so many mental health inventories that I thought this would be a breeze. Check a few boxes, circle some numbers, boom boom boom I’m all done. But when I opened the inventory, it looked like any other, except for the box for text. Like an essay question. Huh. How’s that work?

From my poking around online, it sounds like the one I filled out was “with criterion.” The description above the text entry area was

Description of the specific, worst stressful experience you are
holding in mind

It goes on to say that this box can be used by a clinician and compared against the types of “qualifying event” that are known to be possible causes of PTSD.

Needless to say, that’s quite the intimidating question. Like, let’s just visit the most horrible thing that’s happened to you, write it in this online form, and pop it out into the Internet. Sure, it’s secure, but it’s still scary.

In fact, just doing that, explaining that event and how it affected me, was pretty soul crushing. Something I’ve never ever said out loud or to another person. And one of the most difficult parts was picking an experience. Which one was the very worst? I’m getting anxiety lightning just typing this up. Imagine how the essay went. From that moment on, I have been “Zombie me” as my Wife calls it. It’s the version of me that’s so focused on wanting to curl up in a corner and die that I can’t pay attention to much else. Like talking. You get words out of me, but they’re flat and I’m likely to forget what we’re talking about. I feel like a bottle has been uncorked that shouldn’t have been uncorked. Having this stuff on my mind is a bit like terror, but constant. And talking about a bit of it with my therapist has been troubling, to say the least.

Next appointment with the therapist she gave me a “solid” diagnosis of PTSD. She said PTSDC, in that it’s chronic, but I can’t find any reference to PTSDC at all. There is CPTSD (complex) which sounds a lot like me when I read up on that. Regardless, there are a bunch of things that this diagnosis brings up. I’ll start with the factual and digress into the stuff my depression brain is telling me.

  1. My treatment resistant depression may have something to do with lifetime PTSD.
  2. Addressing the PTSD is something that can be done a few different ways.
  3. Some of these treatments involve digging deep into the traumas in order to deal with them.
  4. These things have been tidily bottled up for decades, and that worked well enough (until my life broke)
  5. Oddly enough, I’ve only given my care team a quarter of what goes into my PTSD, and that’s the light stuff with few details if any. So that’s kinda crazy.
  6. In order to work on this, I’ve been told it will get worse before it gets better. Therapists don’t say things like that. They use positive wording and avoid absolutes, always be on the bright side stuff. So that was scary to hear from them. So that’s a little scary.
  7. I feel like the hole I’ve been trying to climb out of just got doubled in depth.
  8. I’m doing a bit of reliving and feeling like a horrible, bad, undeserving person that I hate.
  9. I feel like the ending of The Perfect Storm when they’ve fought the weather so hard, and finally they see a tiny hole break through. And then it disappears and they get run over by a wave the size of Cincinnati. (Oh, sorry, spoilers)
  10. My psychiatrist offered inpatient (not insisted) and we both agreed that would be counterproductive, as that’s more for safety and stabilization. And I’m too destabilized to even think of hurting myself.
  11. I feel horrible for my family. I was going to say like I’d taken a great leap backward, but this stuff is totally new and quite devastating, so I’m just sorry.

While I’m wide open on my mental health stuff, and talking or blogging about it, and wanting to help others like myself, this PTSD is technically still in it’s bottle, and behind a very high fence, and I’m never going to be sharing any of it. My wife doesn’t even know the details or depths of it.

Rambling post of a madman. but that’s where I’m at. Thanks..

Depression Imposter Syndrome

Often, when I’m standing in the shower making the most important decisions of my life (i.e. staring off into space) I have helpful thoughts, and not so helpful thoughts. Today I had a thought that comes back to me often. Maybe I don’t have depression and anxiety – maybe I’m just lazy?” My mind loves that one, and usually just runs with it. The depression is just being tired. The anxiety is just not sucking it up and dealing with the world like everyone else.

But then little thoughts start jumping in with proofs. Reasons why maybe I am actually depressed and anxious. Things like…

  • The pile of meds I take everyday
  • The enormous pile of meds that weren’t effective
  • The Psychiatrists I see on a regular basis seem to think I an afflicted
  • My personal therapist, who’s been in the deepest reaches of my mind and assures me that, yes, I have some serious issues
  • The Care team at the Treatment Resistant Depression clinic – for even seeing me
  • .. and their prescription of Ketamine
  • .. and their recommendation and assistance in fitting me with a Vagus nerve stimulator (VNS)
  • .. and their medication prescriptions working in concert with my regular Psychiatrist
  • The tremor in my hands and legs from the most effective medication I’m on
  • That VNS, which is surgically implanted in my chest and neck. It gives me a zap every five minutes for 30 seconds
  • Two rounds of Electroconvulsive therapy (ECT)
  • One round of Transcranial magnetic stimulation (TMS)
  • The feelings of failure, dread, and hopelessness
  • CBT, DBD, IOT, PHP, MAOI, and every other acronym I can think of

You know what? That list doesn’t matter. You don’t need to prove it to yourself. If you have depression, you have depression. If you have anxiety, you have anxiety. Depression imposter syndrome feels very real to me, but I look at the evidence and feel how I’m feeling, and I’m assured it is real. Which is actually depressing, but that’s a different blog post. Don’t let those little shower (or elsewhere) thoughts try to impact your disease. They’re just thoughts going through your head, getting washed down the drain as they continue on.

Life just keeps life-ing along

VNS

I’ve been incrementally turned up to 1.25, while 1.0 is the therapeutic target. Anything above that is a benefit, as long as it can be tolerated. Though I think next appointment (2 weeks) I’m going to ask to be set back to 1.0 for a bit longer. I haven’t been getting used to 1.25 as quickly as the other settings.

The sensation is actually less complicated than some of the previous. I can feel it “ramping up” and then it’s a strong feeling like an uncomfortable twisting feeling at the neck. That sensation fades over the following thirty seconds. It’s accompanied by a small choking feeling and something like heart burn, which is annoying more than anything else.

I have found myself using the magnet to temporarily disable the VNS much more often than any other time. I’ve got a loose magnet but I’ve also got one on the underside of a watch band, so it looks like a wristwatch on my right wrist. Actually, it is a wristwatch on one of the provided wrist magnets. But if I’m in public and I feel it kick in while I’m talking, I just reach up to my left shoulder as if to scratch it and the movement puts the magnet in just the right place. So subtle. My scars are so subtle now that Wife actually wondered what that redness was on my chest, until she remembered.

As for me..

I’m introducing a new section, positive news.

Positive

I had a trip to the east coast (the same one I did last year, without the following suicide attempt) which was good. I got to spend a ton of time with my daughter, we really get on well. She has a passion for road trips to match my own.

I got to see my brother and his growing family. With frozen custard!

I spent five days with my oldest sister. No plans except some day trips to various parts of New York City. The rest of the time was spent doing absolutely nothing. Some writing, a bit of playing music, and a ton of time having really good chats with my sister and her husband.

I’ve have had some freelance work contracts come through, including a new one that’s part of a series. I think I’ve made dozens of dollars this year. So not much. But it’s something, I guess.

Back to our regularly negative blog..

Logistically (therapies, schedules, DBT) things are the same for me, it feels like everything is unspooling lately. I feel I’ve broken in half after/despite the peace of my trip to the East Coast. Since then I haven’t been able to write, play music, or even take the Vespa out and wander around. While these are usually escapes for me, where I can forget myself for a bit, they no longer work. It’s like something just came and removed my ability to enjoy the last things I could.

I’ve been thinking about the “anniversary” all week. Remembering the hospital and so on. So much has happened in a year, and yet nothing feels different, except the various side effects. I reread my journal from my hospitalization and I was so upbeat on release. I had plans and schedules and an attitude. That all seems so foreign to me. I can’t remember if that was genuine or I was just saying the things I needed to say to get out of there. I do remember the day I came home Wife picked me up and it was a pretty day. Still warm like summer, but hope for sweaters was there. And we went home and sat around the table and had dinner in the fading light of the day. Just like before. And after.

It feels like everyone else seems to be getting on with their lives. Everybody knows neighbor X is a baker, neighbor Y is a salesman, and neighbor me doesn’t work because he’s got the depression. That normalization is one of the most isolating things I’ve felt yet. Somehow I keep thinking I’m the old, robust me (with some weight lost, even!) but that I’ve been temporarily hobbled by my issues. As this wears on it really feels like this is it though, how it’ll always be.

(In rereading this, that’s a lot of feels. It took about three hours for me to write this, should have been easier.)

Happy Anniversary

Today is the first anniversary of my suicide attempt. In just this past year alone I have:

  • done an inpatient stay
  • a partial hospitalization
  • an intensive outpatient program
  • started ketamine therapy
  • a full course of ECT
  • had a VNS surgically implanted
  • started DBT
  • applied for disability.
  • Spent 75+ hours in therapy
  • Spent 96+ hours in group therapy
  • Changed medications at least a dozen times

(And a huge thank you and I love you to my wife. She was by my side for all of that.)

Three years ago last week I attended my first PHP, essentially marking this major depressive episode’s official start, though it was growing for months.

I have a wide variety of feelings this weekend. Hope is not high on the list, but I suppose it counts for something that it is on the list.

It’s been a long three years.

The Pain of Progress

Forever ago I found a cable knit sweater at Target. It was mustard colored and I loved it. It fit well, and it just had a sense of comfort. I went back and over a few weeks collected as many colors as I could find. Blue, green, beige. Sad I never found a red. The off white sweater was one size larger than the others but that made it even comfier.

I wore it all winter. I wore it to work and I wore it at home. In the summer I would find the lamest excuse to wear it. When I went into the “grippy sock jail,” aka hospital it was one of the few items of my own that I had.

Wearing that sweater gives me comfort and security. It was armor and it was what I knew.

Depression, for so long, feels like that too. It still makes me want to die, but it is also familiar, something I know, and at times, something that keeps me warm.

Last week, I visited my sister, who lives in a kind of remote paradise. My daughter was living there for part of the summer, and some of my trips purpose was to help my daughter move back home. It was an amazing visit. I spent time with my daughter, but also with my sister and her wonderful family. I took walks, I sat on a porch and read, and just sat there appreciating peace. I wrote about my childhood and about canoe trips, in an actual book.

I had two days of.. Nothing. Depression and anxiety weren’t there. At the end of these days I would be so exhausted that I could feel them, but it was only as I was going to sleep.

The closer I got to home the more the anxiety grew, and the depression poked its head out. Remembering that I had nothing to be, except broken.

“Getting better” has always scared me. So this development is very overwhelming. I worry that people will see me being more alert and active, and think “Great, he’s better now!” I worry the life I awaken to will be so very different from my old life. I will have to recreate myself, learn who I am and how I live my life.

I do know that I have more energy, but that a lot of it goes to wearing my “human face” and interacting with others. Ironically, the better I look, the better I’m putting on a good show. It feels a bit like I’m just going back to the time I was depressed but able to convince others I was fine. Back into the sadness closet.

I’m not there (“Better”) yet, obviously. It’s a long road. And I’m still not sure how I feel about walking that long journey. Or even if I’m willing to.

Bottoming Out

This week has been one of the toughest. Ever.

First, the MAOI – the patch isn’t really helping, so we’re likely going to go over to the oral form, which includes the dietary limitations. This includes items with high tyramine. No, I hadn’t heard of it before either. Things included on the no fly list:

  • Aged, cured, pickled, or smoked meats (such as chorizo, sausage, corned beef, salami, and pepperoni)
  • Pickled or smoked fish
  • Some aged and matured cheese (such as cheddar, gouda, and parmesan)
  • Fermented soybean products (such as miso, tofu, soybean curd, and tempeh)
  • Fermented or pickled foods (such as sauerkraut, kimchi, caviar, pickles, and kombucha)
  • Fermented bread, like sourdough
  • Breads with aged cheeses and processed meats
  • Tap beer
  • Any food that has gone bad, or is overripe

With the exception of the last item, this is a list of some of the foods I love the most. It reads a bit like a shopping list.


I have begun ECT (electroconvulsive therapy) again. Three days a week. Monday was only at 30% and it was hard to handle for the rest of the day. Tuesday was ketamine, so I was trashed after that afternoon visit. And Wednesday was at 60% (we’ll end up at 100% eventually) and I felt every bit of it afterward. My memory went from goldfish level to rock. Thoughts that used to come to me long enough to note them or take them on are now fleeting. Leaving me with a feeling of loss, confusion, concern that it was important, and sadness. I’m confused about things I thought were second nature. I can’t remember which pocket I usually use to keep my phone. My appetite has gone completely south, nothing sounds good and more often than not tasted like cardboard once I try it. And a deep sadness has settled in, knowing I’m not at full strength and I have weeks of this to go.

The ECT process is the same as before, with the exception of the waiting. Last time they had a tiny waiting room (10 chairs?) that had to fit the patients in line, plus their family or friend helper. It was fairly loud, though part of that was the 24×7 home improvement shows. Wife hated Mondays because that’s when the new batch came in, and you could feel the anxiety rolling off of them in waves. I just remember feeling like I was with my people. Now the waiting area is down by the TMS area, and there is a nice huge waiting area with comfy couches. The old waiting room as turned into the “wake up” room where they wheel you after you’re awake but before you have any idea who, where, or what you are. And we still get mini blueberry muffins and juice. Which is nice. So the whole process is easier, more comfortable, and well done. Also, there is still the pre-procedure interview to check that you haven’t taken certain meds, take your vitals, and do a quick check in on your mental state. In the old waiting room you would do this in front of the whole crowd, including the “are you safe” questions. Now they have a proper exam room and it feels more professional.


On the mixed bag side: The external review for my VNS (vagus nerve stimulator) has finally approved it, and things are now moving. Have an appointment next week for the surgical consultation with a neurosurgeon, and it sounds like COVID hasn’t gotten in the way of operations at the University, where this will be done.

Again, the VNS has a surgery to implant a little box the size of a matchbox just below my clavicle. They’ll also attach a wire to my Vagus Nerve. After two or a few weeks of healing, I’ll go back to my doc at the treatment resistant depression clinic. He will activate the device and program it for my introduction. An example would be every five minutes the box sends a 30 second impulse to the Vagus Nerve. Forever. No immediate results, it could take weeks if I’m lucky, but more likely months or a year to see benefit. So the VNS update is good news but intimidating and scary.


After much discussion, we have moved the consultation with the Mayo clinic out a month. Not sure if I mentioned it before, but I wanted a different perspective, with their unique patient engagement. Also, my grandfather was a (chief) neurosurgeon there, and my mother was Nurse Ratched the head nurse of the locked psych ware there in the 50’s. (I’m sure she was very nice and not sadistic.) But given the way ECT has done a number on me this week we’re going to wait until I’m a bit more lucid.

It’s a turmoil of therapies and appointments right now. If we keep it up, it’s going to suck. If we stop it’ll suck and I won’t have a method for improvement. But it’s hard nonetheless, and Wife and I are both feeling the strain.


I know the ECT will stabilize, and everything is going as planned. But yesterday I began questioning whether I was actually going to survive this major depressive episode. And that I’m not in control at all. Those are unsettling thoughts. (Yes, I’m safe, and I’m well supported)