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.)

VNS: A vein in the neck?

I forgot to add this to the last post, but it’s a bit of an update on my neck scar from the VNS. Both scars are fading nicely, and the chest scar is really getting light. My neck is a little bit redder, but I’m guessing that’s from collars and everything else that abuses it. Assuming it’ll come along eventually.

I do find that driving long distances the seatbelt hits my chest device square on, and the belt also runs right along the neck scar. They’re not so much as tender anymore, but over a couple hours it starts to be uncomfortable. So I’m resorted to either adjusting position, which is not easy, or not using the strap. It ends up feeling like the old days, when all you had was a lap belt and mom smoked in the car.

Some of my inner electronics

What’s interesting though is that you can see and feel some of the electronics. The connector is a small bit of wire which is wrapped around the Vagus nerve. It’s then doubled back upon itself and run to the device implanted just below my collarbone. The nerve connection is a little lump at this point and not only can you see it (not a zit) but you can feel it. Which is a little odd feeling.

There is something called Twiddler’s Syndrome, which is when a patient fiddles with their implant (pacemakers have this issue also) enough that the fiddling causes something to not work right anymore. It could be a lead coming off, a wire wearing through something, etc. So I’m being careful not to mess with it much. It’s a pretty rare syndrome, but my anxiety is quite aware and mindful of the issue.

You can also see the wire leading from the connection to the device. That one is a bit more subtle, but there regardless. At rest you really don’t see it at all.

As far as the scar is concerned, I don’t think about it much anymore. It’s the beginning of summer, which means t-shirts instead of collars and sweaters, so it’s out in the open. I don’t think people notice it much, and if they do they’re not saying anything. Because it’s not scary looking like in the beginning, I don’t try to hide it or anything. Although if someone asks and the timing it right, I’m going to say I got it in a knife fight. And you should see the other guy!

VNS: A pain in the neck?

VNS, a few weeks on, and a bit more turned on

Saw my psychiatrist at the Treatment Resistant Depression clinic and he turned my VNS up from .25 to .5 — and this time I can feel it.

I want to mention here that everyone’s experience with a VNS can be different, and any negatives I mention here are how I’m feeling it. It’s not how you’re necessarily going to feel it.

The device fires every five minutes for thirty seconds. When you get it turned up, the side effects might be more pronounced, but ideally you get used to it. In my case, we took a long roadtrip a couple days after we turned it up, and I felt it every single time while I was driving. In normal daily routine, I felt it a lot in the first week or so. That constant prodding didn’t help my anxiety and by the end of those early days I was exhausted. Now, a few weeks along I don’t feel it every time. Often I’ll feel it a little bit, but it’s subtle. But I still feel it a good bit of the time. Depends on how distracted I am. When it’s quiet I feel it pretty much every time still, but it’s less “annoying” than it’s been. So I’m confident I’ll have backgrounded it by the time we turn it up again in a couple weeks.

That said, I have had to use my magnet a bit. A reed switch in the chest part is activated by the magnet, which tells the device to chill out for a minute. After which it starts up again. The roadtrip was for a family event, and I got to see many of my siblings and their families. My wife’s family fills time by talking logistics about whatever they’re going to do next. Or already did. My family fills time with stories. Stories about interesting things we’ve learned, or experiences we’ve had, or most often about our family growing up. So rather than wait 30 seconds if the device was firing (and lose my turn in a discussion), I needed to use the magnet every five minutes at times. Other times I just kept my trap shut and my memory issues erased whatever thought I was going to share, problem solved.

The sensations listed below make it feel like I’m talking right after getting the wind knocked out of me. Not as bad as that obviously, but makes me not want to talk at those moments. One of the concerns was that it would alter my voice (robot voice) but so far I still sound mostly the same. Just a bit softer and a bit like I’m out of breath.

My five C’s, The Sensations

Pool Cue

When it fires, it feels a bit like someone is gently but definitely poking me in the neck with a pool cue. Not sharp, but solid and specific.

Cough

Occasionally I’ll have a cough like when you have a frog in your throat or it’s just a little dry. Doesn’t last long, usually right at the beginning, and it doesn’t persist. It’s like an on off switch. So if I’m having that little cough and I use the magnet to temporarily stop it, the cough stops immediately.

Choke

Imagine having two throats. Your normal one, and another little one on the left side that’s just like a miniature throat. Well when the fob fires, it feels like the little throat is being choked. Still breathe just fine, can eat, etc. But that phantom throat is being squeezed. Hard one to describe.

Cardiac

I haven’t tracked it perfectly, but I have a feeling that I can feel the fob before it fires, with what feels a bit like chest pain, but nothing heart attacky. During the firing I can absolutely feel some chest pain discomfort or compression. But again, more annoying than harmful.

Clamp/compressed

Finally, imagine having a clamp placed on your chest. One side of the clamp is over your left lung in the front, and the other end of the clamp is on your back. And it’s tightened gently but while you’ve breathed out a good lungful of air. So when you try to take a breath it feels like a very small person is standing on your chest. You can still breathe, but taking a full, deep breath is a bit of a challenge.

Mental

So far I don’t know that I’ve seen any improvement. But again, 1-12 months to see any payback. But the constant reminder that we’ve resorted to implanting a tiny little shock machine in my chest can be a little depressing. Rather, fuel for the depression fire.

It’s hard to tell what kind of progress I’m making or how I’m improving. Is it the season, the meds, the ketamine, the DBT (more on that next post), the support of my family, the VNS, the ever changing biology of my body, etc. So I can’t speak to effectiveness just yet, sorry.

Next post: I’ve started a DBT program.