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.
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.)
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.
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!
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
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.
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.
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.
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.
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.
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.
(Gonna start with a quick apology for not writing in a while. My writing machine is not working well these days. Also, I’m just out of a Ketamine appointment so if there are misspellings or things that don’t make sense, I will refund the money you spent reading my posts..)
A million years ago, give or take a million years, my psychiatrist at the University of Minnesota Treatment Resistant Depression clinic mentioned a VNS. A VNS is a vagal nerve stimulator, and I think I’ve covered enough of it in the blog that I might not have to explain again. The tl;dr is that it’s a little thing the size of a car key fob, and then implant it in my chest. For me, just on the left, an inch or so down from the collarbone. It’s also a wire that goes from the fob to my Vagus nerve. It’s a special (expensive) wire, and it wraps around the nerve so the fob can give 30 seconds of an electrical impulse every five minutes. Scar on chest, scar on neck, but they’re not so bad.
To prepare for the surgery I was given a nice list of things to do. Now, I’ve never had surgery before so I’m assuming this is typical. I had to buy expensive pre=surgery soap, and after a complete shower, had to apply said soap to myself and then wait a minute before rinsing it off. You know how sometimes you’re in the shower and you have to get out for a second or go to the other end of the bathtub for something, and you’re totally soaked, but in open air? Yeah, that was pretty much the deal, except I was covered in an eerily non-sticky or bubbly soap.
That night, I had to fast from 8pm on, skip my meds, and take that first shower. The next morning, rinse and repeat – literally. The one thing the two showers had in common was the fact that they were both in the dark. I was due at the hospital at 5:45 or something, so I had to get up at 4:30 to get ready. Waking up that early isn’t so bad when you haven’t really slept the night before, though. At least we know my evening meds are helping me sleep. When I get to take them.
One thing I did know about surgery is that there’s an awful lot of sitting around the house while you’re recovering. So I made a trip to the grocery and stocked up on comfort food and snacks. I still have a lot of them. Eating hasn’t really been something I’ve been doing very well lately. I make a good show of it, though. It’s not as bad as in this video, but I think about Cassie a lot:
Day of procedure we got up at zero dark thirty and made out way to the University. The ramp we parked in didn’t have great access to the hospital, so we got to wander around in the light drizzle. But when we got to the right place, it was an instant intake machine. Go here, get checked in, go here and get your wristband, wait here and someone will take you to your room. Very little waiting and the only time I got grumpy is when the lady at the second checkpoint called me by my last name. I’m surname deficient, so it happens a lot. But it pisses me off every time it does.
I was taken back to my “little room” – three walls and curtain. Comfy though. Bed, chair, nineteen computers, etc. I was given the requisite gown to put on, but it was easy to do and covered me from every angle. No cold butt and back. I met everyone on the care team, from resident to anesthetist to neurosurgeon himself. Answered a million questions, some of them the same. And gave my birthday about 20 times. That’s not unusual though. I was given a plastic bin to put my personal effects in, it was efficient and handy.
One of the things that came up in my many interviews was that I am a normal, boring, uncomplicated patient. None of the comorbidities that could complicate things, no history of many different maladies. But I hoped that would make everything go so much smoother. I had lost hope that my surgical team would screw up and I’d die on the table, but I’m working on that with my therapist. When the anesthetist came in to put my IV in, he had quite a bit of trouble finding a good vein. When the chief anesthetist came in to ask some more of the same questions, he said that I was the most anesthetized patient he’d met. And he was old, with gray beard and everything, so he’d seen a ton of patients. Given the face that I had dozens of ECT sessions, and each one they put me under, I’d say yeah, I have some experience there. In the end they did have to get the lasers out to find a vein.
I was finally ready and got on the bed, ready to stare at a variety of ceilings. We headed down a couple hallways and into the surgical theater. I don’t know what I was expecting, but it was quite light, spacious, and had an impressive display of devices and `s. I was in there for maybe 30 seconds before they said they were going to put me under. No mention of potential pain. In the ECT sessions, they’d say they were putting me under and that I might feel some heat/pain in my arm. And sometimes I would. But not for this serious surgery. In fact they said it and I woke up after the procedure. Really bummed, as one of my favorite parts of anesthesia is when your eyes roll back and you feel a flipping kind of feeling before going out.
While I was out, they made an incision in my chest and placed the key fob of despair in my chest. Then they made an incision in my neck, sorted out my Vagus nerve and prepared to attach the wire. The post procedure notes said I had a “very large Vagus nerve.” So I’ve got that going for me. Somehow they missed a vain, it was hiding behind the very large nerve. So there was a tiny bit of bleeding and they found it and fixed it. Wire from neck to chest and then they turned on the device, so make sure it’s working. And it did. So they turned it off. More about that later.
When I woke up back in my little room, I was a little groggy, but not that bad. Within a minute or two I felt really clear. I could see the chest incision at least, and it was gnarly. All red and swollen and covered in surface glue. Once the glue wears off and the incision chills out a bit, it eventually fades into a scar that you don’t notice anymore. We’ll see about the scar on the neck though.
Turns out there were actually dissolving stitches inside me and the incision was glued shut and covered in the protective surface glue. Felt like rubber cement. The wounds hurt as much as you would expect, but honestly not that much. I mean, the first couple days they hurt like I’d been cut open and poked and prodded. But at no point was I curled up on the floor screaming and moaning at the pain.
That was just me though. My curtain was open, so I could see the nurses station and a couple other “little rooms” in the unit. They brought a man in who was moaning and groaning and deep-sighing so much it was a little alarming. He calmed down eventually but never stopped wanting to get up out of bed and go somewhere. In stark contrast, there was another older gentleman who was in the bed, but sitting up a bit. He had a dedicated nurse, so I assumed something might be wrong or complicated. A bit later when I was able to hear him better, it turns out he was talking recipes with the nurse. Go figure.
They wanted me out of bed and into the Immensely Comfortable Hospital Patient Chair as soon as I could, to help clear any remaining fog. But I was wide awake. They let me get dressed and then the wife came in. We had a chatty nurse for discharge and at some point I asked if, after I healed, I would be able to play the piano. I admit it was about as dry a delivery as they come. But she said only if I could play before. So joke defeated, but that’s ok. I regretted not asking the doctors and such. I may be devastatingly depressed, but I can throw bad jokes out any time.
Here’s a picture of me in the chair. I figure the mask anonymizes it enough, and I really don’t care if it doesn’t. So that works out.
Sent home with antibiotics and opioid medication. I asked the wife to be incharge of the Oxy. The last time I’d had some on an autumn evening on the porch didn’t work out quite like I wanted/expected. I did sleep a ton, but within a day or two I was up and able to go downstairs (slowly) and do something besides lay in bed.
So what’s happened since?
First, the scars. Healing nicely, glue came off after a week or so, which helped. All of the drawing they did near my incisions had been sealed in with the glue, so just getting those to go away also helped. I think I’m more than a month out and they look so much better. Just little pink lines and some persistent swelling on the neck scar, but that’s going down bit by bit. Right after I got out and the scars were pretty gnarly, I would wear a winter scarf (it was still snowing, after all) so I wouldn’t scare small children or put anyone off their dinner.
After two weeks we went to my psychiatrist at the treatment resistant depression clinic. I keep specifying that because I have enough psychiatrists in my life that I need to clarify these things. Anyway, he’s a really good doctor, nice guy, and is an exact clone of Stephen Mangan.
He handed me a wand – like a giant tv remote with a big circle bit at the end. I held the circle bit over the fob of despair in my chest, and he activated it. He started at .25ma and I’ll go back to him every couple weeks to get it turned up to .5, then .75 and finally 1ma. I couldn’t feel anything while he was firing it, so he turned it up to .5 for a moment to let me feel that stimulation. Ideally I’ll just get used to it as it happens. It felt like someone was standing on my chest. But not in a bad way. It also felt like there was some electiricity being zapped into my neck, but just a tiny bit. It also had a sensation that is extremely hard to describe. Like there was a collection of (like 8) stiff wires and they were all not so much as painful, but felt. Like I said, hard to describe. But no voice modulation, didn’t sound like a robot or like I was talking into a fan. There are, as usual, a long list of possible side effects, but that was the one I was most concerned about.
For those times when I feel it firing and it’s problematic, I have some rare earth magnets that I can place over the fob location in my chest, and a reed switch is pulled which prevents the device from firing. So if my speech is affected at some point and I need to give a speech or record something, I can turn it off for those times. Carrying the magnet 24×7 is recommended, but this device is also used to epileptics to control siezures. With theirs they can activate it so it fires at will, or
BTW, that psychiatrist is an apparent clone of Stephen Mangan, sans accent: (also, I don’t think he’s a cad like the character.)
Going in and out of stores is fine, Target didn’t beep at me as I entered or left. I do wonder how the TSA will deal with the little electronic device I’m carrying.
I also wonder when it’s firing. It’s 30 seconds every five minutes. There are 1440 minutes in a day. Divide that by five since it’s only happening every five minutes – that gives 288 times a day that it fires. Multiply by 30 for the duration, and you get 8640 seconds. Divide that by 60 for a number of minutes and I get 144. Divide again by 60 to see how many hours that is, and I get 2.4 — so for two and a half hours every day I’m getting these shocks. But I can’t feel them, so that’s ok I guess.
While I would love it if I had an app to go with it, I understand the battery life would suck, and I’d need an operation every month to recharge. As it stands, the device can last up to four years on the single charge it has.
First, the MAOI – the patch isn’t really helping, so we’re likely going to go over to the oral form, which includes the dietary limitations. This includes items with high tyramine. No, I hadn’t heard of it before either. Things included on the no fly list:
Aged, cured, pickled, or smoked meats (such as chorizo, sausage, corned beef, salami, and pepperoni)
Pickled or smoked fish
Some aged and matured cheese (such as cheddar, gouda, and parmesan)
Fermented soybean products (such as miso, tofu, soybean curd, and tempeh)
Fermented or pickled foods (such as sauerkraut, kimchi, caviar, pickles, and kombucha)
Fermented bread, like sourdough
Breads with aged cheeses and processed meats
Any food that has gone bad, or is overripe
With the exception of the last item, this is a list of some of the foods I love the most. It reads a bit like a shopping list.
I have begun ECT (electroconvulsive therapy) again. Three days a week. Monday was only at 30% and it was hard to handle for the rest of the day. Tuesday was ketamine, so I was trashed after that afternoon visit. And Wednesday was at 60% (we’ll end up at 100% eventually) and I felt every bit of it afterward. My memory went from goldfish level to rock. Thoughts that used to come to me long enough to note them or take them on are now fleeting. Leaving me with a feeling of loss, confusion, concern that it was important, and sadness. I’m confused about things I thought were second nature. I can’t remember which pocket I usually use to keep my phone. My appetite has gone completely south, nothing sounds good and more often than not tasted like cardboard once I try it. And a deep sadness has settled in, knowing I’m not at full strength and I have weeks of this to go.
The ECT process is the same as before, with the exception of the waiting. Last time they had a tiny waiting room (10 chairs?) that had to fit the patients in line, plus their family or friend helper. It was fairly loud, though part of that was the 24×7 home improvement shows. Wife hated Mondays because that’s when the new batch came in, and you could feel the anxiety rolling off of them in waves. I just remember feeling like I was with my people. Now the waiting area is down by the TMS area, and there is a nice huge waiting area with comfy couches. The old waiting room as turned into the “wake up” room where they wheel you after you’re awake but before you have any idea who, where, or what you are. And we still get mini blueberry muffins and juice. Which is nice. So the whole process is easier, more comfortable, and well done. Also, there is still the pre-procedure interview to check that you haven’t taken certain meds, take your vitals, and do a quick check in on your mental state. In the old waiting room you would do this in front of the whole crowd, including the “are you safe” questions. Now they have a proper exam room and it feels more professional.
On the mixed bag side: The external review for my VNS (vagus nerve stimulator) has finally approved it, and things are now moving. Have an appointment next week for the surgical consultation with a neurosurgeon, and it sounds like COVID hasn’t gotten in the way of operations at the University, where this will be done.
Again, the VNS has a surgery to implant a little box the size of a matchbox just below my clavicle. They’ll also attach a wire to my Vagus Nerve. After two or a few weeks of healing, I’ll go back to my doc at the treatment resistant depression clinic. He will activate the device and program it for my introduction. An example would be every five minutes the box sends a 30 second impulse to the Vagus Nerve. Forever. No immediate results, it could take weeks if I’m lucky, but more likely months or a year to see benefit. So the VNS update is good news but intimidating and scary.
After much discussion, we have moved the consultation with the Mayo clinic out a month. Not sure if I mentioned it before, but I wanted a different perspective, with their unique patient engagement. Also, my grandfather was a (chief) neurosurgeon there, and my mother was Nurse Ratched the head nurse of the locked psych ware there in the 50’s. (I’m sure she was very nice and not sadistic.) But given the way ECT has done a number on me this week we’re going to wait until I’m a bit more lucid.
It’s a turmoil of therapies and appointments right now. If we keep it up, it’s going to suck. If we stop it’ll suck and I won’t have a method for improvement. But it’s hard nonetheless, and Wife and I are both feeling the strain.
I know the ECT will stabilize, and everything is going as planned. But yesterday I began questioning whether I was actually going to survive this major depressive episode. And that I’m not in control at all. Those are unsettling thoughts. (Yes, I’m safe, and I’m well supported)