Buffering…

I haven’t forgotten, I’ve just been writing this whole time. I may have gone a bit overboard, but I hope someone will get something out of it. It’s also for my own failing memory, to save the week’s journey so I can remember it later.

I will be putting it out in chapters, so it’s not going to be one wall of text that’s longer than the book Animal Farm. It’ll be broken into logical segments and posted probably once a day. They still might be walls of text, but at least they’ll have pictures and stopping points. 🙂

In the meantime, enjoy this picture of a room exactly like the one I enjoyed for some days..

First Ketamine Experience

In my program, your first time is with the nasal administration. They (for reasons we still have no clue about) deliver the nasal ketamine to your house. I had to sign for it, etc. It comes in a box that’s about a foot square, like a cube. It also demands that you refrigerate it immediately. So I did, but I have to say taking a square foot of space in our fridge was not convenient. Part of the reason you do the nasal version is that it’s not as intense as the other methods. So if you’re going to have a heart attack, blood pressure spike, or bad freak-out on your trip, they’ll find out with a little bit less intensity.

I’ll be getting intramuscular shots next week. I just realized I don’t know which muscle. I think it’s the arm, but it could be the butt cheek. What a pain in the ass that would be! Also, given that the injected version is more intense, I’m looking forward to see just how more intense it will be. I felt under control, but there were times where I was really disassociating. Not sure how it can get more intense than that. I’ll let you know.

They say time doesn’t move at the same speed, and they were right. Given the fact that I thought I was saying something every few (or ten) minutes, and yet the average time between comments is 28 seconds, I think it’s safe to say I was having some time issues.

You check in at the main desk, but they send you down the hall to a door with a nice big red warning on it. It opened into a mini waiting room, and the nurse then lead us to the actual room. I don’t know what I was expecting, but I had visions of having to sit in that not-so-comfortable chair next to the doctor’s desk for an hour tripping out.

As it happens, it was a large room with great big comfortable recliners in lightly separated bays. If someone was having a bad experience, everyone would hear it. Each area has a few of the things you would expect in a hospital room. The blood pressure stand, emergency button, a visitor’s chair. Wife sat in that chair and I jumped into the recliner.

The nurse gets your vitals, then you take the nasal spray. Three times in each nostril with a minute between snorts. It hurt, actually. Not so much that you would cry out in pain, but enough that you realize you’re happy not to be doing it that way every time. It was a stinging in the nose, and some would go down the back of your throat and tasted horribly bitter. Not tonic water bitter that you want to taste, not cocoa powder bitter that reminds you of chocolate. Bitter like chewing up aspirin. The nurse then pulls a curtain across the opening of the mini bay you’re in, and lets you get to tripping. So there’s some privacy, but I know I heard the nurse laugh once or twice as I was babbling away.

They take your blood pressure every 15 minutes. The cuff just stays on and inflates once in a while automatically. I usually don’t like the pressure of a cuff, but didn’t even notice it. They do this to make sure your blood pressure isn’t going high, which is a side effect that’s particularly dangerous. Mine was low going in, and even lower when testing after I started the experience. Go figure.

I’ve done my share of research, so I had read some other experiences and was super curious about how it would affect me. A neighbor had Ketamine and described his experiences. He watched a mindfulness video and was convinced it was written by him especially for him. That’s why I want to watch a movie or videos next time. I should seek out my favorite albums and see how many videos I can string together.

Being the nerd that I am, I was recording the session (on a phone with a case that makes the microphone suck) and letting it attempt to transcribe as it recorded. Due to the microphone suckage, the audio was very quiet, and hard to transcribe. I even had to go with both sides of earphones and use my military training in transcription in order to make out many of the phrases.

I was indeed tripping, but in going over the log that I recorded, I remembered everything. It’s not like ECT where you come out of it not remembering going into it. I’m hoping the log is clear enough for you. There are some text styles that show something I did, something someone else said, and comments every few lines. The transcriptions are italicized, and the log entries are bold.

Enjoy!

3:42:17 PM Testing

This is the beginning, I was setting up the voice recorder on my phone. I hadn’t really used it before, and it’s pretty limited. I can’t adjust the scale of the visualization, so when it’s working in a quiet area it’s almost impossible to see if it caught it. Also, my phone case makes the bad microphone work even more poorly. But I worked with what I had. An idea was to video it, as that’s unlimited in length, except it’s much harder to transcribe.

3:43:34 PM I know this sounds weird, but I can feel all of my clothing

I think your senses get boosted a bit. So all of the different fabrics on my skin were very pronounced. It was fun, and it was pretty cool to have that much knowledge of how my clothes feel.

3:44:22 PM <???> made my nose stop running

I had been having an incredibly frustrating day or two of allergies. At first I thought it might be COVID, and how funny that would be. After months and months of hoping to catch COVID and die, now that I’m in a much better place it would be like an Alanis Morissette song. Isn’t it ironic? Also, the <???> indicates I couldn’t make out a word or phrase. You’ll see it a bit in the rest of the transcription.

3:44:37 PM I can taste it

This is where the ketamine was running down the back of my throat. I was starting to feel the effects, but it didn’t take any of the bitterness away.

3:44:45 PM Yeah I would not be able to walk right now
3:45:20 PM {speed slowed to .7}

So the first line was so hard to transcribe, I had to turn the speed down to 7/10ths, which helped quite a bit, but it was still a trial to understand some of the lines. Mostly due to the low volume, but I thought I sounded like I was slurring and speaking more softly than usual. I left it at that speed for the rest of the transcription and it helped immensely, even though it made my voice even deeper than it already is.

3:45:33 PM The flags look like fire
3:46:10 PM <Wife asks which flags> Those banner things

There was a farmer’s market in the parking lot, and we were on the second floor. I could see the tents and the banner flags of the market, as well as the street, with cars driving by. Because the wind was fairly strong, the flags were waving quite a bit, and seemed to be flapping from the bottom to the top. So it looked a bit like a candle flickering.

It’s funny how you perceive things differently when in a different mind state. If I had tried consuming recreational drugs in college, but stopped after a month because I felt like I was stupid for a day or two after I came down, it could be like this. Once, when I was surely not under the influence of something we had taken inside peanut butter and jelly sandwiches, I might have seen someone in a tie-dyed shirt and realized why people might wear them. To me it would have looked like feathers, and it might have been quite a revelation. But of course I didn’t, so I must be making that all up.

This is what the banner flags look like. (Thank you street view!)

3:46:17 PM So I'm going to be saying things because I want to be able to describe it later

There were more thoughts in my head than usual, and many of them were bizarre. Mostly just visual twists on what I see, but there were a few times when it was more contextual and perceptive. Like the flags turning into flames, or the clouds turning into water towers.

3:46:46 PM My hands feel like they're upside down

Wife asked about this the next day. It felt like my arms were oriented correctly, but my hands were facing palms up instead of the reality, which was down. It didn’t feel bad or anything, just curious. It went away as I headed toward the peak, and lost contact with my body.

3:46:56 PM I'm kinda floaty
3:47:05 PM But very relaxed
3:47:11 PM I feel like I can breathe more than usual

This was kinda cool. I’ve done a lot of breathing exercises, like 4×4 or 4×8 or in through the nose, out through the mouth, etc. 4×4 shown below, but the concept applies to many of these methods. Sometimes I take the biggest breath I can, and slowly exhale. I did this during the experience, and it felt like I was inhaling for a very long time, due to the time distortion. But it really did feel like I was breathing in a ton of air, more than usual.

Thank you Monticello Trails
Middle School
(Home of the Timberwolves) please don’t sue me.
3:47:31 PM Yeah I would define this as tripping balls
3:47:54 PM I don't know how to describe this but everything's inside out

Like the upside down hands, this happened twice. Once on the way up to the peak, and again on the way down. I found it interesting that I had the same experiences on both ends of the time I was treated. In this case, everything being inside out was a bit like when you do the magic eye pictures, but instead of letting your eyes relax and widen the parallax, you cross them. It’s a great way to be able to guess at the image without standing there for 15 minutes trying to relax your eyes. And during that 15 minutes you stress out because you can’t do it, which just spirals into frustration. You try it here:

Hint: It’s a boat.

Anyhoo, it felt like convex things were concave. It should have been very confusing and very disorienting, but again, it was just a curious phenomenon. By the way, you can cheat at “find the differences” pictures by doing the same thing with the crossed eyes. Where there are differences will seem to be standing out a bit. Easy Peasy.

3:48:21 PM I feel like I'm at sea
3:49:18 PM I can hear my Tinnitus
3:49:34 PM Kinda want to take a drink of water but don't think I can

I have some wicked vertigo these days. Describing it like being on a ship in a wavy ocean is exactly correct. Except sometimes there are bigger waves, and I have to stop and just hold on for a few moments. It’s okay, as I like boats.

3:49:54 PM Everything is happening around me

This was a strange one. You know in movies and TV shows where they show the protagonist standing somewhere, while the world moves hyperfast around them? IT felt a bit like that, but not as fast. Maybe you could describe it like an out of body experience might feel like. Or maybe even a ghost, and the world is happening around it without seeing the ghost.

3:50:08 PM When I move my head back and forth I have vertical vertigo

Back to the vertigo. It’s possible it has something to do with all the meds I’m on that have the side effect of lowering your blood pressure. Rather, your blood pressure lags by a few seconds. So when I stand up quickly, I get lightheaded and dizzy for just a few moments, but longer than usual.

Sitting helps a ton, but in this case it seemed stronger than usual when I looked straight up. It produces the effect of feeling like you’re on an unstable deck, but instead of wobbling side to side, you’re wobbling up and down. This might be the most difficult effect to explain.

3:51:14 PM I'm not connected (to the BP monitor)
3:51:23 PM So that (blood pressure) probably registers fairly low
3:51:31 PM {wife's name} can you hear me?

She was probably mentally preparing for a lot more of this. I tend to go on sometimes, and she’s good at putting me on mute with an alert – if she hears something that might pertain to her, she automatically unmutes. And then asks me to repeat what I just said. It works. And yes, she was hearing me and acknowledged as much.

3:51:37 PM [Wife: Do you want help with the water?] That was a long time ago
3:51:45 PM I'm fine
3:51:53 PM I'm not, like, in my body
3:52:14 PM My palms are sweating. I can still feel the tremor in my right hand but I can't - no I can see the tremor in my right hand but I can't feel it
transcription:  Yeah it's my answer for it I am still feeling my trouble in my right hand but I can't

Was this the first automatic transcription? Might have been, too lazy to scroll up, but if you want to scroll up, go ahead. If I’m wrong here please send a message to donttellme@thismessagewillnotgettome.com and someone will get back to you never.

Another awesome side effect I have is the tremor. It’s worse in my right hand, which if I hold it out shakes like a cartoon character who has just seen a cartoon ghost. But not Casper the Ghost, who is the ghost of Richie Rich. Look it up. It goes from ok to worse, but the worst part is that I have it all over, just in varying degrees. Left hand much better than right, legs are subtle when I’m sitting and hold one up. Going up or down stairs, however, I can feel it in my legs, and it makes me less stable than just standing.

I had sweaty palms, and when I held my hands up to see the tremors, I could see the tremor, but couldn’t feel it. I could still feel my hand, just not the shaking.

And finally, “a long time ago” was actually two minutes. Time dilation again.

3:52:28 PM Right hand. Right is always worse than left
3:52:50 PM Cool. What color is my mood ring
3:52:58 PM What color is my mood ring? [wife: dark] It's like a yellow green or something? [wife: I'm colorblind] Oh. Great.
3:53:03 PM Oh, ok. When I had ECT I asked them to watch my ring and the nurse said it was like it was plaid. And I kinda get that now.
3:53:14 PM That stuff.
3:53:36 PM It's like the Family tartan. Like purple and yellow.

Ever since the beginning of this episode, in summer of 2019, I’ve done a lot of programs (PHP, IOT, DBT, TMS, ECT, ETC) and many of them talk about your physical state when anxious or depressed. It occurred to me that I had a mood ring sitting on my nightstand. It was just a little too small, and I discovered a plethora of different styles on Amazon. I settled on a ring that appeared black until it colored up.

It’s not the actual family tartan, but somewhat close-ish, and had the colors I saw.

It’s like any other mood ring. Not saying it doesn’t work, but it pretty much stays the same color all the time, with subtle changes. It works by body temperature. So if you’re mad in the summer sun, it should turn red. If you’re super mellow and calm in your igloo, it would be blue, etc. When I was taking ECT, I asked the nurse to watch the ring and tell me the next day what it looked like. She did, and she said it was weird. Like it was plaid.

I asked Wife what color she thought it was, and she reminded me that she was color blind and maybe not too happy I could forget something like that. I’m going to say it was the super memory eraser – ECT. *My experience is not typical, but erased parts of memory can happen.

It just seemed like a couple different colors, but in a jagged pattern, not solid. It reminded me of the family Tartan. But a bit brighter, as our colors aren’t yellow, it’s more orange with thinner lines, etc.

3:53:53 PM <deep sigh>

I don’t remember doing these but there are a few on the recording. Since the audio was so quiet I had to turn it up quite a bit, and there was all sorts of random noises. From static to something that sounded like I moved and so forth. I was also listening for any ghost voices, or EVP for the experts who watch ghost hunter tv shows. Happily? Sadly? I didn’t hear anything that sounded spooky.

3:54:02 PM Alright I'm gonna try water
3:54:13 PM I feel like one of those giant house sized marionettes that they run down the streets in France.
3:54:33 PM I know that's gonna sound insane but I can look it up later and tell you about it
Transcription:  I know that's gonna sound insane but I can look it up later and tell you about it

Royal de Luxe is a French mechanical marionette street theatre company. It’s really incredible, and the people in the red outfits with gold highlights are pulling on ropes to make various movements. I highly encourage you to search YouTube for the company because those people aren’t just pulling on ropes, they’re pulling on ropes. Jumping high to get more rope, being pulled into the air for a bit of time, and so forth. I particularly liked Sea Odyssey, where the girl above and other giants end up getting on a ship leaving Liverpool. They look like they’re in a rowboat. Seriously, go to YouTube right now. I’ll wait.

3:54:45 PM My glasses make me feel like a Picasso painting
If you search enough you could buy this for me as a memento. Last time it sold it was only $9,500…

I can normally see my glasses from the corners of my eyes, but this time it was highly asymmetrical and everything felt out of whack. I seriously felt as if I were the subject in Picasso’s “Drawing of Harold Robbins” only in color and everything is squares or circles.

Might have had a bit of Mondrian in it as well, thus the squares and colors. There were so many thoughts going through my head that these thoughts at the front of my mind mixed together. Meanwhile in the back of my mind I’m thinking that curtain looks like the scales on a white ghost version of Rainbow Fish. You know, just normal thoughts.

3:55:09 PM There was a car driving by and again now and it looked like a stormtrooper helmet. But then my eyes get all tangled and I can't really see it that well anymore

For a long time I have known about the fact that many white cars and SUVs look like a stormtrooper from the front. For some reason, every time a white car passed by on the road in front of the building, I saw them more and more as actual stormtrooper helmets. I think the first one was one of the cars that actually looks quite a bit like the helmet, and every white car after that was helped along ever so much by the image.

I would watch them go from left to right in the window, but had to turn my head to keep watching. The further to the right I turned my head the more “tangled” my vision got. Like it had turned into ropes and they were poorly braided the further I go.

3:55:56 PM My sweater [on my lap] is expanding

I had worn my favorite mustard colored cable knit sweater over a long sleeved t-shirt. I had to take it off for the blood pressure readings, so I put it in my lap with the design facing up. I figured it could be fun to see if it moved at all. And it did. At first it just looked like it was blowing up like a balloon. Later it only blew up enough to deflate, like it was breathing. I don’t remember if I saw the patterns moving like snakes, but I might have.

3:56:29 PM I wish I had tried special K before this so I could tell the difference between the street drug and the [brain working hard here] legal therapy
3:56:59 PM Did that make any sense?
3:57:11 PM There's something about the flags and the tent and the gray sky that makes me think of {local amusement park}. I think it was because we went there when it was fall.
Not the actual park, but imagine this in the autumn cold with gray skies.

We have had a local (~20 miles away) amusement park since the 70’s. I can still smell the fresh tar paths in the park. My sister and a neighbor went on the scary rollercoaster 20 times or so once. Since then there have been 8 or so new rollercoasters added, all making the original look like a kiddie ride. We went every year for a while as an agreement that if we didn’t go on the (actual dangerous) rides in the Midway at the State Fair, our parents would fork over tickets to the amusement park. And it worked! Our park was way more fun and safer than the sketchy midway. Now that I’m older I realize some of the fun of the Midway is simply not dying because you’re on a 30 year old ride that’s been taken apart and put back together every week during that time. By carnies.

What? Another aside? Sure. Was on a trip with friends and there was a county fair that we stopped by. One of the friends mentioned knowing someone who owned a bunch of amusement park games (miss the basketball hoop, don’t knock the bottles over, the giant stuffed prizes will fall apart in a week, etc.) He asked the owner about the carnies working for him and I think he asked where someone could find those scary people to hire. Turns out they were all college kids on a summer job, many of whom he knew. They let their hair grow out, wear grubby clothes and don’t shave every day. I think it’s so they look like scary carnies that you wouldn’t want to mess with. As he left the midway he recognized some of the carnies and couldn’t believe he didn’t recognize them before. So go ahead and pick a fight with a carnie, they’re probably college kids responsible enough to have summer jobs. You can probably take them in a fight. Unless they’re actually scary just-out-of-jail, carrying a knife that they would know how to puncture you with carnies. Good luck!

3:57:53 PM I feel like I could write volumes about this if I could remember.
3:58:12 PM [Wife suggests I should record it] I am.
3:58:19 PM I think I'd be okay doing it alone. [Wife asks a question] The treatment. [Wife asks a question] Nonono I mean, in here. Doing it. So in future treatments if you off somewhere on your computer..

You have to have a close family member or friend bring you and take you home. Dear Wife has been through so much with me, and is my biggest support and cheerleader. When I had ECT there was a 2 (or 3?) hour gap between my going in for the procedure and being cleared to leave. Most of that time was spent coming out of the anesthesia. So she would take her laptop and go down to the “healthier” fast food place and snack and work from there. The irony is that she worked for the hospital system in an office a block away. So she was working closer to her client than she did at work!

So I was hoping she could be released while I did my doctor approved hallucinations, so she could at least get a little work done. Here I was saying I could do the treatment all by myself, so she could work for the hour between drives.

3:59:04 PM I can still breathe bigger than I normally would but it feels more normal than last time
3:59:53 PM I'm getting a sore neck from looking out the window

My chair was parallel to the windows, so the most interesting thing to look at, outside, was to my right. And I was getting a stiff neck just for looking right. I don’t know if that’s a side effect of the treatment or my new meds, but it was the most uncomfortable part of the therapy. Worse than the nose snuffling taking the meds, since I only have to do that once.

4:00:10 PM Which doesn't make any sense because.. why would I?
4:00:18 PM I think next time I want to watch a movie.
4:00:36 PM Now my sweater is just breathing.
4:00:47 PM I'm going to forget to ask -- I'm. Going. To. Forget. To. Ask. This. Later, but can I do this with my earbuds in?

I’m thankful I said this, as it reminds me to bring my earbuds, and yes, I can wear them during the procedure. And I would have forgotten that immediately. All of those periods are (hopefully) expressing that I was talking in a stilted manner, trying to remember all the right words to say.

4:01:19 PM I kinda want one of those facemask things that court reporters have so I can just babble so nobody can hear me. It's a thing they put over their face that records their voice and I think it might do a speech to text translation. But it would be fun to have one of those.
Here we have a Lance Corporal, likely a Marine Corps Legal Services Reporter, aka MOS 4429. Semper Fi!

I was talking about a steno mask, which looks like a CPAP mask with no straps. If you don’t know what a CPAP mask is, do your own damn google search.

They use it in addition to automatic voice transcription to augment the record with things like descriptions, clarifications, etc.

4:03:10 PM My recording will only do it for ten minutes. So by this I feel like I've done 20 minutes so far, is that right?
My recording is only doing it for 10 minutes I feel like I've done 20 minutes so long ago
4:03:20 PM I'll have to figure out a better thing for next time
I want to figure out what to do better thanks for letting me
4:03:35 PM <deep sigh>
4:04:02 PM My allergies are completely clear.

Hey the transcription wasn’t completely off! It got the “spirit” of the audio. On one line only..

4:04:05 PM I don't suppose they'll let me take it home and do it every day
IIIIIIIII don't don't don't don't don't don't don't don't don't don't suppose suppose suppose suppose suppose suppose suppose suppose suppose you'll
4:04:10 PM I haven't had allergies in a really long time.
4:04:17 PM Is there a cub out here?
4:04:32 PM [clearer, faster] What do you want to do for dinner
4:04:43 PM [Wife talking] k. [Wife talking] k. [Wife talking] k. [Felt like saying k one more time so it didn't sound like I just said KKK, but I had lost count and thought I had done 4]

Ok, I have no idea what the automatic transcription is doing here. I did have bad cell reception, so it might have been retrying and getting multiple answers. Still doesn’t help much, as it only got one line out of five.

4:04:48 PM Can you see my blood pressure numbers from there? [initial reading was slightly low, procedure could make it go high] [Wife -Yes, they're low] Oh. Weird.
4:05:04 PM [nurse asking me if I'm ok] Yep. My neck is sore from looking out the window. I don't know why. [nurse: Are you feeling all the things?] Less all the things than when I peaked but yeah I'm feeling a whole lot of stuff. I feel like I'm coherent though, like you're understanding me

The nurse came in and asked if I was feeling “all the things” because that’s what the kids nowadays say. I wasn’t so much feeling emotions, as feeling tactile and visual things. Nothing audio related, either.

4:05:15 PM [Wife? question re: cars and stormtroopers] White cars do, they're white with the black windows which are the eyes
4:05:56 PM But when I was describing that, I could see them until they were about per-pen-dic-ular from me and then it would feel like my eyes got all tangled up

Again, failing to describe the cars well enough, but she’ll read this and understand.

4:06:04 PM It's a little exhausting not being here
4:06:25 PM Am I saying every word <?> time? It thinks it's transcribing but it isn't doing a very good job cuz most of the - wha? - Ok.
4:06:50 PM I want to be a writer
4:07:17 PM I feel like taking a drink is easier but it still take a confusingly long time
4:08:38 PM I tend to zone out a lot naturally and this is just exacerbating it. 
4:09:22 PM Like I've just been yammering the whole time [Wife:yep]
4:09:38 PM I was at a happy hour with {company I worked for 10 years ago}. {name} was there, {name} was there, we were talking to some people and one of them said can't you just shut the f*** up for 5 F****** minutes? And that became a company quote. And I don't think I can.

I do want to be a writer, and taking a drink of water was much easier now that I was almost inside my body. The fact that I said “exacerbating” should mean I’m coming down. And no, I can’t shut the f*** up for five f****** minutes.

4:09:49 PM <deep sigh>
4:10:59 PM I can feel my feet now but they still don't feel like mine. And my hands are upside down again.
4:11:10 PM What are you reading? [Wife: Facebook] I have been unsubscribing from things and unfollowing things a lot lately
4:11:26 PM I didn't miss the electronics when I was without them for four days. So I'm trying to maintain less use of them.
4:14:04 PM Do you think those flowers are real? [Wife: no]
Do they go flowers in real

I seriously did not miss electronics during my hospital stay. (They weren’t allowed, along with sharp things or ropes/cords.) Having come back I’ve slipped a bit back into Facebook because that’s where you get the best “25 celebrities whose left toe is bigger than their right” or “10 things you incorrectly knew the name for”. But I’ve been reading dead trees actual books, practicing y musical instrument, and spent more time in the real world than the virtual. My Animal Crossing town is likely choked with weeds and angry villagers, and my obsession for digging systems of tunnels in Terraria is no longer something I’m driven to do.

4:15:08 PM When I'm reading my book at night the light is just a little too dim I'm reading words wrong and so like the Full there on that box just reminded me that I would probably read that as Pull
4:15:42 PM Is this as boring as hanging out with a drunk person? [Wife: it's about the same] Ok. <laugh> Alright.
4:16:00 PM Once again it's nice having masks, so you can't see my mouth hanging open. No drooling though, so that's good.
4:16:56 PM That's some beautiful light coming in the window [a cloud had just passed]

Part of the electronics minimization and sleep hygiene effort is reading before going to sleep, and not even on an e-reader. I think it’s helped quite a bit. I will admit I watch fewer movies and that bums me out a bit. And I’m feeling my age in the fact that low light makes things blurry. Maybe I’ll start using a magnifying glass. And sit on the front lawn in a lawn chair. And go to buffets at 4pm. Yeah, no.

4:17:31 PM <chuckle> Now the clouds look like water towers.

To be clear, these visual distortions or concepts aren’t replacing what’s there with a zany cartoon image, they’re just making different connections. So while I interpreted the puffy clouds as the tops of ]water towers, I was still seeing them, and (albeit quieter than usual) still knew they were clouds.

4:17:44 PM <deep breath>
4:17:49 PM Everything is inside out again
4:18:25 PM Wow. I was thinking the tinnitus is still there but
real Oh
4:18:54 PM That's, uh, one of the <sigh> One of the side effects of the VNS is it can take away your tinnitus
4:19:02 PM It can also control your bowels, but, we'll hope for the best

I’m sure my Vagus Nerve Stimulator will be many long blog entries. So subscribe so you can get notified when I post something new.

4:19:18 PM [nurse asking me if I was able to stand up yet] Not quite there
4:20:57 PM That silver thing says {iowa college} on it
4:21:09 PM I got a {iowa college} newsletter and I was reading it and confused {iowa college} with {east coast college}, maybe it's the other way around. anyway I'm seeing all these things like {Daughter} should try and, {Daughter} would like that, {Daughter} <mumbles> yet it turned out to be {iowa college}. So it turned it into {Son} wouldn't do that.
4:21:16 PM [Looking at my cup] When we were little we auditioned for a local science tv show and I dunno I felt like I did well but neither my sister or i got a part but um I'll be able to remember what the name of it is at some point. One of the last things they did was gave us a cup, and they said, make up something about the cup and I so I decided a spaceship with fleas. And I dunno what the inspiration about that but apparently they didn't appreciate my imagination
Well Well but but you you might might at least least arrive arrive at at home home one laugh laugh and a a big big head which was bigger bigger then then a couple couple and and a a tiger tiger n***** n***** and and I I also also feel feel pretty pretty sure sure about about bad bad thing things currently currently late late

Daughter is at east coast college, Son is at Iowa college. Both liberal arts, but those two are experiencing college completely differently. Son was the first to go and he’s mastered the art of doing as little of the college extras as possible. Not likely he even knows the sports his college plays. Daughter is working hard to make friends, and actually participating in optional new student events, evening talks, and even attending a sporting event! (Volleyball)

I realize now I can’t really anonymize the kids show, because we’re not sure it was ever produced. I also didn’t get the part of “child movie reviewer” on a local morning show (which at one point had the most viewers in the nation – of morning shows) but I did send in a “helpful hint” and won a t-shirt and they performed it on the show! Yeah, except the idea came to me because I had to take the (very large) trash bag out to the trash cans. One day I saw a skateboard and thought I could just put the bag on that, roll it down the ever-so-slight downward pitch in our sidewalk, and voila! I’m at the trash cans. Except the happy couple hosting the show didn’t understand, and took a tiny little garbage bag, like a foot square, and tried to demonstrate it. They made an awkward bending over show of it and politely brushed it off. The fact that someone at the network selected it means someone understood what a trash bag was.

And hey, transcription? Now it’s not only getting it wrong, and repeating words, but now it’s accusing me of using possibly the most horrible word ever! I verified with the wife that I did not say it, BTW.

4:22:28 PM the transcription on this is far more confusing than anything I could say
4:23:29 PM <deep sigh>
4:23:22 PM Are my pupils dilated or anything?
I'd I'd I'd I'd I'd I'd like like like like like like people people people people people people to to to to to to die die die die die die later later later later later later this this this this this this afternoon afternoon afternoon afternoon afternoon afternoon
4:23:44 PM [Wife: no] I'm not sensitive to light so probably not.
4:23:44 PM Another ticket? [Wife: no]

Apparently I’d like people to die later this afternoon. Nope, didn’t say that either! The reference to “another ticket” is that my wife’s job used a ticketing system, like a help desk does, to send out little missions. She’s been so wonderful about taking me to appointments and things like these when I can’t drive, that it breaks my heart to see her having to work in uncomfortable exam or waiting rooms with crappy wifi.

4:24:30 PM I feel like the person at the party who hasn't had beer before and after half a beer they're like "Oh I'm so drunk!" like maybe this is all just my imagination
I'm beautiful before and after half beautiful girl
4:27:44 PM What? The transcription says I'd like people to die later this afternoon
to die later this afternoon
4:28:26 PM I didn't say that did I? [Wife: no] k
I just

I was very self conscious about the trip. Was I being obnoxious (no!)? Was I wackier than any other patient has been (no!)? Was I acting like a freshman at a kegger (no!)?

4:28:37 PM I feel like I'm slowly coming down but then I realize I can't feel my legs
4:30:02 PM Not like I'm paralyzed, but just like I'm high
4:30:11 PM I haven't felt anxious or depressed or freaking out or sad I'm mostly just curious
Bad I'm looking for Victoria

I have no idea who Victoria is! Honest! Again, not an emotional experience, just that I was watching this crazy movie as it unfurled itself.

4:30:45 PM [nurse asks if I can stand up yet] Yeah I really try though
4:31:11 PM Could you get me more water? Thank you
4:31:22 PM My sweater isn't moving as much as before but it's still doing something
4:32:35 PM Oh that's cold! Thank you.

They did indeed bring more water, and it was super cold, and that hit the proverbial spot. I felt like I was recovering slower than most people, but then I’m sure the ketamine and the meds I had on board had a little party in my brain. And it’s hard to leave a party early.

4:32:15 PM Like, coffee.
4:32:45 PM There's nothing going on with my head that would prevent me from putting on my sweater, is there?

I wasn’t sure if I had some apparatus on my head, but I didn’t. When the sweater was coming on I was looking through it channeling Linda Evangelista in George Michael’s Freedom 90! video. You should check it out, it’s awesome. The song is good too, I suppose.

4:33:30 PM <blood pressure cuff being taken off>

And that’s it. I finally was able to stand up, and Wife took me out to the car, and we headed right up to the cabin. She drove. Not sure if I slept better that night, but I slept well. No after effects that evening or the next day. My second treatment is tomorrow, and that’s the shot, so it should be a fun ride. I’m sure I’ll post about that, too. Because we all know I can’t shut the f*** up for five f****** minutes!

Oh I meant to say if anyone has any questions, issues, or advice, just drop me a note. Presumably you can do that from the ‘contact’ page?

Quick Update

I had one of the worst weeks of my life last week, but things are looking up! I’ve added to my maladies: Extreme dizziness/vertigo, muscle weakness, easily exhausted, and I’m unsteady on my feet. But even with all of that (which I’m hoping is temporary) I haven’t felt this good in a very very long time. I still have a long uphill climb, and I’ve been assured it’ll be a “two steps forward, one step back” journey, but I have some optimism now and that’s been the biggest help. One of the things I’ve really been leaning on is writing, and have many pages of journal entries that I’m going to work into epic posts here. It’s going to be a long read but hopefully informative and interesting. Stay Tuned!

Ketamine and VNS, the ugly details

Likely part 1 of many

Some logistical updates. I have a feeling this will be a regular type of post, as there are so many moving parts to the two main therapies.

Still no word on what’s between Ketamine and VNS. The notes on my visit mention the possibilities of an Emsam patch, which is an MAOI in, well, patch form.

Ketamine

So apparently BlueCross/BlueShield, who have been quite helpful and payful thus far, will not pay for Ketamine. I feel like if you had a party and refused to pay for the drugs people wouldn’t respect you. Just saying. It’s not like Brad from down the block is asking for the Ketamine, it’s an actual doctor who is going to apply it in a healthful way to try and make people not want to die.

So we’ll be paying out of pocket for the Ketamine. We may have to sell one of the cars, as it is going to cost $24 every month. I’m thinking Brad down the block can’t get it for that cheap! And no, you can’t pay $48 and get extra. Sorry.

Here’s the order of operations, not delayed by any insurance approval:

First…
I’ll get the first Nasal dose in the mail, and the care team is going to trust me not to sell it on Lake street or just snuffle it down as soon as it arrives. Which is fine, since doing either of those things would likely invalidate my discount Ketamine. And $25 doesn’t buy much these days, beyond 3 poorly-thought-out domain names or almost a lightning cable for an iPhone.

My first appointment is before the end of this month. So it’s not tomorrow but not December, I suppose. I’ll bring the nasal dose in and they’ll administer it. After that, they check vitals every 15 minutes and ask me how my trip is going. I’m leaning towards listening to Moby or the Chemical Brothers. Or Crystal Method! As long as I don’t jump out a window and start self harming with the window glass, like Helen Hunt did in the 1982 made for TV movie about the dangers of drug use, “Desperate Lives” – don’t worry, her brother Doug McKeon is there to tackle her back into the broken glass.

Yes, the one with Dr Joyce Brothers. Duh.

If that goes well I come back every Monday, Wednesday and Friday for a period of time that eludes me. I think it’s a couple weeks then down to maintenance once a week or something. Each appointment will be an hour “in the chair,” a polite way of saying show up on time. Can’t drive until the next day, or “a good night’s sleep” – so you literally have to sleep it off. Just like the old days! (I wouldn’t know, actually.) So the dear wife will have to be my chauffeur again. Not as bad as the ECT though. For some people, there are no real effects, for others it’s a bit of a disassociation. I think I already mentioned that though. They keep you around for that hour to make sure you’re good to go and not sue them for falling over later.

So it sounds like October could be a fun month for me.

VNS

The ease and cheapness of the Ketamine will be offset by the process and time frame of the VNS. I was told Livanova, the vendor, would be calling me to coordinate. They’re the makers of Symmetry™, which has been shown to significantly improve lives. (Direct quote from their web site.) I’m not really mocking them (much), as they have some great information on the site, as well as a picture of what I might start calling the “peacemaker” – because it’s like a pacemaker but brings you peace. I should maybe market that to them and see if we can get a campaign going.

Imagine two quarters next to each other

If you watch the video, fully the last third of the video is a legal text scroll — read it though, it has some fun side effects. They seem to stress that the most common side effect is infection, so yeah. Awesome!

What’s that? It all seems way too easy? Well..

Later that day…

Had a call with a representative from Livanova, the makers of Symmetry™, which has been shown to significantly improve lives. She was very nice and had a ton of information for me. Things like:

  • The device was FDA Approved in 2005
  • It’s about the size of two quarters next to each other, and as thick as two quarters
  • 7 out of 10 users significantly improve their depression (I think she meant it would get lesser, not better)
  • 4 out of 10 users have complete remission (so those odds are actually better than initially expected, though could be vendor padded.)
  • I will continue my depression meds while on the device
  • Installation is done under general anesthesia, takes about an hour, and is an outpatient procedure
  • It can take anywhere from 1-6 months to really get all of this going on, if there are no delays in insurance approval (see below)

From there, it’s just a matter of waiting. For some people it’s immediately useful, others it can take up to a year to really show benefit. But who cares, I’ll be a cyborg!

More Later that day..

I got the first email from my friendly representative at Livanova, the makers of Symmetry™, which has been shown to significantly improve lives. She sent me some bureaucracy to work on, and let me know that usually BlueCross/Blue Shield denies VNS. (sad clown noise) But they’re used to going through all levels of appeal and eventually go to external review. Approvals have not been 100%. Which will delay the timeframe, of course, but I am ?? [*] by the knowledge that it’s the vendor driving the approval. Since they get money if it’s approved, they’re the best capitalists for the job!

* Another word I couldn’t find. Not even going to come up with something funny. Deal with it.

So one is going to happen, the other not sure. And BCBS apparently isn’t in the business of making sad people not want to die. Yay money and USA and stuff. Pretty sure if I was in Denmark I would have a professional assigned to live with me and make me better 24×7, or allow for the “care team euthanasia” concept. Oh well.

Treatment Resistant Depression

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?

Treatment-resistant depression (TRD) is defined as major depressive disorder (MDD) in adults who have not responded to at least two different antidepressant treatments in the current moderate to severe depressive episode. Treatment resistance occurs commonly in up to 30% of the treated MDD patient population

— the internet

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:

Retarded/Withdrawn Catatonia: This form of catatonia is characterized by decreased response to external stimuli, immobility or inhibited movement, mutism, staring, posturing, and negativism. Patients may sit or stand in the same position for hours, may hold odd positions, and may resist movement of their extremities.

— 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:

The vagus is the tenth cranial nerve and arises from the medulla; it carries both afferent and efferent fibers. The afferent vagal fibers connect to the nucleus of the solitary tract which in turn projects connections to other locations in the central nervous system. VNS mechanisms include an anti-inflammatory effect, as well as changes in monoamines.

— actual wikipedia

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.

So to make a long story short (too late!), Ketamine in the somewhat short term, and a Cyborg implant poking the brain for the long term. Maybe more TMS or ECT between the two, just for fun.

Me

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.

Hang in there!

Three words I am growing to hate more than any other. While I understand the intent behind them, what I hear is:

  • You’re all done with me for now
  • It’s likely that what you’ve (care team) done for me left me wanting more help
  • You’re going to go on (happily) with your life for the next two weeks or month or whatever arbitrary “check back in with me” timeframe is
  • I’m going to wait and feel like this until then. The whole time.

rTMS, the last experience

That’s a wrap. I’ve completed my last round of rTMS.

I reread my first post on TMS and the first paragraph is pretty rough, but it’s also still pretty accurate. Today I nearly aced the depression inventory (not in a good way) and my tremor has blown into a full body quake at times. It’s like shivering with anxiety. The staring into space actually hurts when my eyes dry out. I do realize I just came back from a long and exhausting trip, so I’m working on self care too.

I mentioned that I got a visitors badge every day at the hospital, and I just said “TMS” and they write it and hand it to me, then I use the required hand sanitizer. Which is prodigious. I used to slowly walk the 20 feet to the door so I could rub it all in/off, but in the end I usually just opened the door handle with disinfectant still all over my hands. I figured I was helping them sanitize the door. No charge. I also mentioned that I figured they would know me on sight and write my badge without my saying “TMS” but that it would probably happen on the last day. And I kid you not. It was the last day. I’ve done the math and over the last few months I’ve had 144,000 pulses of magnetic energy tapped into my head.

tldr:
Anxiety somewhat better, depression worse.

Bit more info:

Diagnosis: (still) Major Depressive Disorder, severe, recurrent episode without psychotic features
This means it’s pretty bad since they used the words “Major” and “severe” and it keeps coming back.
But I don’t have the psychotic features, which would be delusions, hallucinations, or both.

Depression Symptoms: depressed mood, sadness, anhedonia, fatigue, feelings of worthlessness/guilt, difficulty concentrating, hopelessness and suicidal ideation

The PHQ-9 is a depression inventory and rating system. The GAD7 is the same but for anxiety. I take both before pretty much every appointment with my Psychiatrists, so I’m pretty good at them. Just meaning I know how to take them, obviously.

My score on the PHQ9 for depression went up one point between starting and ending TMS. I wonder if that messes with their outcome statistics, since I got worse not better. On the GAD7 for anxiety, I’m down 6 points, which is an ok improvement. I think that takes me from severe to moderate. Anxiety is a lot more unpredictable than depression, as it comes and goes and varies in intensity. So it’s hard to inventory well.

Highlights from the official notes in my chart:

  • He reports some noticeable improvement in anxiety, but no appreciable difference in depression
  • Presents with appropriate and depressed affect
  • He did not experience side effects with TMS
  • He may be a candidate for future ECT treatments, as he had a better depression response to that, but he also had significant side effects with the ECT treatments
  • It is possible that he may notice further improvements in depression after finishing with TMS, and if that is the case he may be a candidate for TMS treatments again in the future
  • Overall, patient has not achieved greater than 50% improvement in depressive symptoms, throughout TMS series, as indicated in rating scales (that’s the diagnostic goal, at best cut the depression in half)

I have a feeling the little improvement I got in the anxiety is about as much as I will get. I don’t really want to get more memory issues, nor do I want to put my wife through the pain and hassle of getting me to and from ECT. Though I really enjoyed the peanut butter and jelly sandwiches she would bring me in the afternoon when I finally came out of the anesthetic haze.

I am currently between programs, having done a PHP and an IOT and now I’m starting another PHP on Friday with a different organization, just to mix it up. Also going through a lengthy intake process to get into a Treatment Resistant Depression clinic, and from what I’ve seen so far they really know their stuff.

Much like COVID, what we thought would be a few weeks has strung itself out into months. It was the anxiety that put me in this hole, it’s the depression that’s holding my head under water.

This is apparently the logo for the current episode of depression. Drew it in program.

The Lost Poem

They say journaling is therapeutic, so what the heck. And I haven’t managed to offend anyone yet.

I love driving. Especially new and unknown roads. Ever since I got my license I’ve been drawn to the road, and there’s nothing like a good road trip. In high school we found a book from a local author – actually an alum of our high school – about a road trip to the badlands. To a bunch of high schoolers, their simple trip seemed like the most exotic adventure one could go on. And we went on a few of our own trips, just not as far as the badlands. Three friends and I would go out on Saturday night just driving around, letting our parents know we were just going to a fast food joint. We neglected to tell them our favorite was in Red Wing, fifty miles from home.

My daughter got the bug from me, and loves driving. She has her podcasts and caffeine to keep her going. My wife isn’t as much of a driver, but she has her own toolkit, including music and conversation. Most people like to have music or something on the radio, but I actually like the silence. When we drive to our cabin “up north” I usually do the driving while the wife naps. I can’t hear podcasts well and don’t like wearing earbuds in the car. Music is okay, but choosing the right vibe for the moment can be a hassle. So often I’ll just drive to the hum of the road. There’s a lot going on in my brain, so that’s the conversation that I listen to as I look for obscure routes and alternate roads to keep things interesting.

I have driven to the cabin probably hundreds of times now. There are three primary routes you can take, and they’re all within about 15 minutes of each other. I’ve done them all and found a few in between. My parents had driven to the cabin so often that they not only knew which roads were the most efficient down to the minute, but they could also offer a review of pretty much every Dairy Queen between home and the cabin.

They’ve built a new fast highway that cuts right through everything and knocks most of the alternate routes on their butt. Which is a bummer, because I like the lettered country roads. Fast highways mean passing and watching your speed vs watching for speed traps. It means trucks and vacationers and seeing the same vehicles for hours at a time. A good county road means decent pavement, most slow drivers will turn off sooner than later, and best of all they provide a plethora of things to see and wonder about along the way.

But it doesn’t matter if it’s a new road or an old one, I always find interesting things to see, almost constantly.

One time on the way to the cabin as the kids claimed they were bored, I rattled off the last five interesting things I had seen. A spiral staircase to nowhere, the tin man from Wizard of Oz riding a tractor, a BMX motorcycle practicing jumps, and more that I can’t remember. So even though I’ve done the route a million times, it seems like there is always something interesting and/or new to experience along the way.

I’m also an active driver, meaning when I drive that’s all I’m doing. I’m hyper alert to other cars in my blind spots, seeing what cars far away are doing and how that might impact me, my speed, etc. I’m watching for speed traps, though I don’t see that many any more, which takes much of the fun out of speeding. I don’t speed much, but mostly go with the flow of traffic 5 over the limit. I’m also watching for animals. There are deer between here and there. They’re usually grazing at the side of the road, or just crossing. Generally they dart back into the trees when they see you, but more often than you would think they dart in front of you. I haven’t hit a deer yet, and don’t want to. So I have great “deer eyes” and it not only helps stay safe, but I’ve caught a number of interesting creatures as they disappear in the woods. Deer, of course, black bears, foxes, even a cougar with babies! So many birds – Bald Eagles, hawks, sandhill cranes, blue heron, and my favorite – red winged blackbirds.

So it all adds up to the fact that driving makes me happy, calms me, and it’s a bit of a therapy all on its own.

My mental state has been able to allow me to keep driving, but there have been times (especially during ECT) where I wasn’t allowed to drive. The kids were right, the back seat is so boring! For the most part though I still get to have my mindfulness time driving down the road seeing what there is to see.

And that’s the sad part. I see so many little moments of beauty or oddity on my drives. Maybe a fox peeking over the road looking like he wanted to cross but knew it just wasn’t a good idea. Or the bear cub that sprinted for the trees and climbed five feet up the closest tree to the road – not a good hiding spot, and I was waiting for an angry Momma bear to pop out at any moment. I’ve seen crazy vehicles of all kinds, people doing all manner of activities while they drive, and roadside attractions both new and old. We don’t stop, but I notice every historical marker and think to myself that next time we should take the time to stop and learn. Or it could just be a beautiful landscape lit by the golden sun at dusk. I really love these little moments of beauty.

But with my memory issues, now I see these things, appreciate them, and try hard to remember them. But most of them these days are gone by the time I hit the next town, lost to the static in my head. It took me a while to realize it was happening, and now when I’m driving along and I see something like bison in great herds, I love the moment, but also realize right then and there that it’s fleeting. I don’t get to keep it to remember, or share with someone later down the road. And it’ll be gone before I know it. And that makes me sad.

So now when I see something fun, interesting, sad, or curious as I’m driving, I have the same sense of pleasure for having the experience, but I also grieve that moment because I know it only exists in that moment. And after it’s passed, it’s truly gone. And I hate that I now have sadness in my journeys.

It was bad enough on one of my recent trips that I started writing a poem in my head about the experience of fleeting beauty and the loss as it fades from memory. It was a great poem. I don’t write poetry, really, but I felt this captured the concept so well. Over the course of that weekend I also came up with the perfect title for the poem. I can remember exactly where I was when I lost it, too. It was as if it was dust and the rain washed it away in front of my eyes. And I’ll grieve that, too.

Forgetting a poem about forgetting.

A simple plan, foiled.

Without reason or cause, this has been one of the worst weeks of my life. Just because things have been building for a while. You want to know what depression is like? Here’s a quick (not really) sample.

We’re not a Barcalounger family. We have a beautiful old craftsman house built in 1908, so we try and keep the mood of the place by staying away from the typical. When my wife was pregnant with our first, we bought a gliding rocking chair. It’s really quite nice. It’s stained wood and beautiful textiles, and really fits in with the hardwood floors quite nicely. Honestly, that’s where the snobbery ends with us – the house is dusty and lived in, not beautiful and clean. But we’re ok with that.

Somehow I ended up in the glider. After the babies were long grown and we settled into watching TV in the living room, it was just where I sat. I never intended for it to be “my chair” but it did. There’s a little table next to it, with my essentials. A phone charging stand, a coaster that looks like a tiny pallet I got at a horrible convention in Vegas, a few other things, and the most important pieces of art I own. A snow globe with the Edmund Fitzgerald, a small rock painted with a dog’s face on one side, and “Harvey” on the other. And finally, the most important and valuable thing I own: A small ceramic dog (named Harvey) with a small heart on the bottom of the right front foot. My daughter made it and it’s exquisite. She has a real talent for ceramics, and the fact that she made it from my drawing and did so well makes my heart swell and burst with love.

There’s often a set of earbuds, a mouse, maybe a facemask and some other stuff, but that’s about it. The arms of the chair are wide and long, so perfect for either a mouse or a drink. They’re worn but not too much. The cushions are flattening with age, and the chair itself it showing it’s age. It’s over 20 years old and well used. But it’s still beautiful. While there’s no overt rule, nobody usually sits in my chair besides the cats, and while I try and share it with them, they usually vacate when I sit on them.

Before depression cost me my job, I spend COVID on video meetings in that chair, trying not to rock, but sometimes just rocking anyway so the Zoom meeting participants could get motion sickness watching my background coming and going to and fro. It was my work place, but also my happy place.

It’s a comfortable chair, and I like the gliding part. it rocks every so slightly without making my seasick. Last year we cleaned the porch well enough to really organize it nicely, and my favorite spot became a rocking chair in the corner looking out on the street. I sat there and watched families walk by during the COVID lockdown, I sat there and watched unknown creepy cars glide slowly down the street during the days after the Minneapolis uprising. I sit there still and watch the world go by while I’m in my mental health purgatory. So I like to rock, maybe that’s my age or just some sort of comforting technique.

I told you it wasn’t a quick sample.

Last night and tonight I’ve been left to my own devices as everyone else in the family lives their lives. Yesterday I watched my favorite Luc Besson French action movies and escaped to being first a female assassin (Nikita) and then a quirky old man assassin (Leon / the Professional) and didn’t do my laundry.

Tonight somehow I managed to get my laundry in (it’s still there, waiting for the dryer. Let’s lower our expectations, folks, okay?) and settled in on the couch to watch a movie or three. Another Luc Besson, but this time with Robert DeNiro in a comedy that was kinda fun but stupid and a waste of time, which was perfect. When you’re depressed, wasting time is essential. Either a bad/good movie or doing yet another “paint by numbers” on your phone, which consists of tapping a lot and not thinking — or playing a video game. (My flavor? Terraria. Except instead of playing it I dig endless tunnels in a fantasy world. Just digging. Tunnels. Obsessively.)

I ended up defaulting back to one of my favorite “depression porn” movies: Girl, Interrupted. Other faves in the category? One Flew Over The Cuckoo’s Nest, Donnie Darko, It’s Actually a Funny Story, The Bridge, What Dreams May Come (shudderingly wonderful), Silver Lining’s Playbook, Cake (Rachel was never hotter) Melancholia, Requiem for a Dream – I could go on. I’ve seen Girl Interrupted a million times, and to be honest it’s my fantasy: You go a bit crazy, get sent to a sanitorium, are paired with an astonishingly compatible roommate in an institution which takes some getting used to. You spend time coming to terms with your issues while bonding with a zany collection of folks who are crazy yet really relatable. There’s a compassionate and genius therapist who really cuts through the nonsense and helps you come to terms with your shit. And of course there’s a really obnoxious yet charismatic character who you find to be a connected soul and you learn not just about them but about your self in the process. Sadly, someone dies, but in the end everyone learns their lessons about life, and move on. In the end you knew how to heal yourself all along, and you get the bravery to start over on the “outside” and everyone wishes you well. You walk or drive into the unknown distance and the credits roll. Happy Ending. Yeah. I know it’s not like that.

Except somewhere in there the chair began to squonk. It’s actually been doing this for a few weeks now, but I just haven’t been able to do anything about it. As a result, I’ve not been rocking, and that’s kinda been bothering me.

So nobody else was home and I had a moment (just a moment mind you) of inspiration and decided it was time to end the squonk . Here’s where the really hard part starts. Forget the crippling depression, the electro shock therapy, the beaming of magnetic rays into my head, the shaking hands and the going to sleep hoping to (there is no) God that you have a mysterious brain aneurism in the night and your family is rid of you and gets the insurance money. No, much harder than that.

A trip to the garage.

I checked the utility shelf in the kitchen hoping the WD-40 was in there, but it wasn’t. I knew it wouldn’t be. So I had to find some keys and head to the garage. Fine. I took the scooter keys, reminding myself that I wasn’t riding it enough and the obligations connected. I thought about going for a ride but I’d already settled into sad for the night and didn’t have the inspiration. I thought about how I wouldn’t ride it with my friends this weekend because it would be too much effort. But maybe next weekend.

Stepping outside I wondered if any of the neighbors could see me, and if they would wonder what I was doing. I didn’t really have any reason to be going anywhere. But nobody else was around. Turns out the garage was unlocked, but no matter. The WD-40 was right where I expected it and I grabbed it, turning back to the house. It was over 90 degrees and swampy hot. This morning when I went to the hospital (per diem) for my treatments it was swampy by I still wore a hoody like some kind of emo high schooler – the universal shield.

So I’m back in the house now and I have everything I need. So I go to the glider, carefully turn it on it’s back, and look for the squeaky bits. The axles, I guess you would call them, were covered in cat hair. I don’t think this chair has every been on it’s back, much less cleaned like this. So I went to the kitchen to find something to clear the cat hair. A kebob stick would do it. Couldn’t be bothered to find the wooden ones that I could throw away, so I grabbed a metal one. This brings with it a world of issues, of course. It’ll need washing, and someone may end up asking what I was using it for. And it wasn’t very good at the task. But eventually I cleaned everything out. Time for the WD-40. Happily it wasn’t empty (had it been, it would have been par for the course) and I sprayed the rocking bits, both at the point of rocking, and the connection points. I oiled the shit out of that chair. Of course, now we have oil leaking on the floor and on the chair. So I had to go get some kleenex, try and clean the floor and the chair as much as possible., and that’s that. Throw out all the kleenex and thank (there is no, still) God the trash bag isn’t full, so I don’t have to deal with that whole nightmare guilt. Finally, turn the chair back over and put the WD-40 in the kitchen – getting back out to the garage and everything involved is way too much for one day – and coming back to the chair.

So finally I can watch TV (and even later with the family) and get back to rocking in my chair. So I hit play on the movie and relax back into the evening.

Squeak. Squeak.

Squeak.

And there you have it. With more lubricant than a Texas whore the chair still makes noise. Everything I’ve done is for naught. Exhausting and frustrating and annoying, all to change the noise of the chair from a squonk to a squeak. A simple task, maybe 15 minutes, a non-optimal outcome. But the depression brain in my head told me a whole different story, and this simple failure was about as bad as it could get. After a week of Everything, this one little failure was just enough. It didn’t put me over the edge, it just reminded me. Reminded me that no matter the effort, it’s all just effort. And none of it is worth it. But it was one of the worse fails of my life. Just because it was this week – and this week sucked.

That’s depression. Rinse, repeat, enjoy.