1.0

1.0

On Tuesday I got turned up to 1.0.

1.0 what, I’m not sure exactly, but I’m at a therapeutic “dose” now.  We are going to stay here for a month and see what happens.

When she turned it up this time I started coughing.  When the VNS turns on, it feels like someone pressing on my voice box, and the pressure felt like it increased quite a bit.  I can feel it down my neck into my chest now, as if someone is pressing there, too.  It’s uncomfortable and a little painful, but I expect that to get better over time.

I have found that exercising with it can be difficult.  Before I got it turned up to 1, I was doing fine when I just walked, but had trouble breathing when I jogged (without using the magnet).  Now I have to work harder to breathe even when I’m trying to walk (or even when I try to talk, even at a normal volume), and I feel like I’m suffocating if I try to jog while it’s going.  I keep thinking my lungs will get stronger if I just keep pushing myself, but I’m definitely going to start taking my magnet when I work out, and use it if I’m trying to jog.

The Missing Magnet

I lost a magnet already.  I had put it on my purse strap with velcro to get it home after work on a Wednesday, but completely forgot about it until the following Tuesday.  When I went to check my purse strap, it was gone.  It wasn’t anyplace else I looked, either, and of course the Cyberonics website was of no help whatsoever.  Not knowing who else to call, I called the guy at Cyberonics who helped set up my surgery, and lo and behold, he said it would be no problem to get out another set of magnets to my doctor.

This is what a cow magnet looks like.

So then that night I found my magnet.  *facepalm*

I kind of wanted some extra ones anyways.  Especially when your livelihood depends on your ability to speak clearly, and when your VNS is impairing that ability, you want to make sure you have magnets on hand so you can do your job.

I have read that you can use cow magnets, too, but of course Cyberonics says you should only use their magnets.  Since the Cyberonics magnets are easy to attach to velcro, I’m sticking with them for now.

But it’s helping already.  Now I notice that I’m bored.  Suddenly I’m not feeling so overwhelmed; suddenly I’m feeling like DOING things with other people (a miracle in and of itself, believe me), and my friends are all in different places in their lives than me, so I don’t have anybody to hang out with, really.  My friends are dealing with unhappy marriages and young kids and trying to get pregnant (those are all different people); I’d really just kill for a date with someone I was actually attracted to.

I wish the friend I mentioned in the last post lived closer.  Especially because I’m attracted to him.  Of course, his life is complicated, too, with divorce and children and guilt over how the divorce will affect the children.

Turned Up and Some Answers

Getting the unit turned up wasn’t bad at all; in fact, it was a lot less uncomfortable than getting it turned on and going up a notch right away (to .50). I’m at .75 now, and I go back next week to go up to 1. Then we’re going to stay there for a little bit and see if I’m eventually able to go down a bit on my meds.

My scars look really good. Surgical superglue rocks! The one on my neck is less noticeable than the one on my chest, and I can make it disappear with makeup. Usually I don’t bother, and eventually I think it will disappear.

I know some answers to the questions I asked earlier in the blog. The way they get the wires up into your neck is they use a t-shaped instrument that creates a tunnel for them to run the wires through. Then they can pick them up again at your neck and wrap them around the vagus nerve.

Also, the stimulator unit doesn’t shift under my skin — at least not back and forth. If I lie on my side with my shoulder under me, it does push the side up and out. Not uncomfortable, though.

It also doesn’t feel heavy anymore, I guess I’ve gotten used to it.

I’m also getting better at wearing the magnet to turn the VNS off when I need to. I can tuck it under a black tank top and not have it be too obvious, though it’s just touching the side of the stimulator, so I can still feel it go off, just not as strong. If I really want to hide it, the trick is to wear a button-down shirt. And if I wear one with a pattern on it, you don’t notice any bump at all. I’m sure if you hug me, you can still feel it, because the magnet is like half an inch thick, but I guess if someone’s hugging me, they think I’m ok.

The best ways I’ve found to use my magnets: One is to wear it on a strap on my right wrist. I put the magnet on the inside of my wrist so I just look like I’m scratching my shoulder when I turn it off. I do this when I won’t have to talk a lot but I know I want to be able to turn it off. Better than keeping it turned off. I want it working!

The second thing is just a little velcro strap that goes around my bra strap, much shorter than the one for my wrist. I found this great all-in-one velcro that has the hook and loop all in one side. I’ll have to look up what it was so I can post here. It’s great stuff.

The best part is that I seem to be feeling a little better. I don’t notice that my mood has changed so much as my ability to do things without feeling quite so overwhelmed. Normally the vacation I went on would have been really hard to do, and I would have ended up feeling like I was enduring it rather than enjoying it, but I had SO much fun. And then this last weekend I saw an old friend, and I was able to spend time with him without feeling overwhelmed, too. Especially so soon after my vacation, that’s a big deal for me.

I’m trying to understand exactly how this thing works, and I found some research that says, “evidence from neuroimaging and other studies suggests that VNS therapy acts via innervation of the nucleus tractus solitarius, with secondary projections to limbic and cortical structures that are involved in mood regulation, including brainstem regions that contain serotonergic (raphe nucleus) and noradrenergic (locus ceruleus) perikarya that project to the forebrain. Mechanisms that mediate the beneficial effects of VNS therapy for treatment-resistant depression remain obscure.”

I have a vague understanding of what they’re saying, but I want to understand it well enough to explain it to you, so I’m going to need to read some more!

Getting Used to the Stimulation

The stimulator has been on for a week today, and it has finally stopped twinging (hurting a bit) when it comes on. In fact, I’m mostly aware of the sensation of pressure against my throat, or obviously if I’m talking my voice changes.

I’m learning to pitch my voice lower when it starts up, which has the effect of making me sound a lot sexier than an adolescent boy whose voice is changing. I guess anything’s an improvement.

I asked my psychiatrist how long it normally takes to get this thing up to therapeutic levels, and she said about two months.

I’m a little scared about going up to the next level. Obviously you really do get used to the stimulation, but I can’t help but worry a little bit — what if I don’t when the signal is stronger?

I get turned up next week.

In the meantime, I am going on a little vacation. I’m staying with a bunch of people who don’t know about my VNS, but I kind of figure they will before our time is up. I’m going to wear my magnet on a wristband I rigged up that I like better than the one they gave me with the magnets, but I don’t see how people could not notice that you’re lifting your arm and touching your chest with your wrist every few minutes…right after your voice gets a little weird, in fact…

I hope they’re cool about it and don’t give me that TMI look like my class did. I hate that psychological problems get strange, uncomfortable looks that medical illnesses never would. I would much rather people took the information in stride and asked questions if they had them. Some of my friends have touched it to see how it feels under my skin, and I like that a lot better than discomfort.

Vagus Nerve Stimulation – Getting Turned On

Yesterday the stimulator was turned on.

When I got to the doctor’s office, a rep from Cyberonics was also there. Since he helped to arrange the surgery for me, I knew who he was.

The doctor gave me a “wand” to put over the stimulator. It’s flat and blue on one side, with lights to indicate whether the handheld computer attached to the other end is communicating with the stimulator. The part that actually touches your skin is a flat circle that fits right over the stimulator.

I was really, really hoping I wouldn’t be able to feel the unit go on, but I did, like a flutter in my throat. That was tolerable, so they turned it up to the next level. When it went on, it was like a mild shock, the way it feels when you touch a metal doorknob and you’re not grounded. Then it would settle into more of a feeling of pressure against my throat.

The doctor and the rep assured me that I would get used to this and be less aware of it over the next two to three days. And it has gotten better, more just the feeling of pressure against my voice box. I’m tired tonight, so when it first comes on I have the sensation of a sore throat, but it goes away quickly and I just have the pressure left.

I sound raspy when it goes on, huskier and uneven; to some extent I can modulate my voice to make it sound more normal.

I teach, and I (bravely? foolishly?) decided to try to teach with the vocal changes, to see if I could push through them. But you need to speak loudly, and boy, was it obvious something was wrong. I sounded like I was going to burst into tears or something. I had to explain that I had this implant that made one of my vocal cords vibrate. They just looked at me. TMI, I guess.

So I used the magnet every time it started to go off and I was talking. That thing is a handful, so it was fairly obvious what I was doing. If you took it off the clip, it would be smaller, but I was just sort of making do. When you touch the magnet to the stimulator, it flips off, and when you move the magnet away, it stays off until the next time it’s supposed to go on. Then it goes on normally.

I’m going to have to figure out how to tuck the magnet without the clip or the wristband under my bra strap to keep it in place. I may try sewing velcro into a bra and putting a bit of velcro on the back of the magnet to see if that would work. I also thought about just looping the velcro around the magnet and my bra strap so I don’t have to stick anything on the magnet. Either way, guess I’m going to buy some velcro.

It would be even easier to use sports tape, but 1) that seems like it would irritate the skin if you used it much and 2) it’s summer and I’m not sure how well it would hold if I sweat. The magnet is heavy.

I see the doctor again in 2 weeks, because they have to work you up to therapeutic levels. I’ll talk to her about my voice, because it’s pretty obvious even when I’m just talking normally. Honestly, it’s given me another OMG what have I done? feeling after trying to teach with it. I feel a bit like a freak.

It’s hard not to start thinking about things like going on dates, and how it might come off if my voice keeps changing. So then I’d need to use the magnet. But the implant isn’t directly under my bra strap (just the scar), so it’s not like I can wear a tank top and surreptitiously hide the magnet against it. So then I start to think, I‘m going to have to change my whole freaking wardrobe…

This whole depression deal isn’t fair in the first place, and here’s one more thing I’m going to have to do to manage it and try to look like a “normal” person.

*deep breath*

Try to see the problems as challenges, and not let myself get down.

The doctor assured me that they can manage side effects, so I’m going to try to set the freakish feelings aside and hope this can be managed a bit better than it is now. And, like my family keeps reminding me, if it works, it will be worth it.

Ow – Days 3, 4, and 5

I developed a neck spasm on the side I had the surgery, and it was so painful I finally called the doctor. They asked me if my pain was intermittant or constant. They were thinking that perhaps the implant had accidentally turned itself on and was causing the pain. Since it was constant, though, the final call was that it was indeed a muscle spasm.

It’s pretty bad when you don’t need the prescription pain medication because someone cut two holes in your body, but because of the muscle spasm your neck develops in protest.

So I’ve been using the heating pad, and they gave me permission to take ibuprofen. Since the Percoset keeps me awake, I’ve been trying to do that instead. After two days of that treatment, I’m doing better.

The surgical cuts themselves look pretty good after 5 days. I think I mentioned that they used surgical superglue instead of stitches, and it’s starting to peel at the edges. I just trim it. I’ve been wearing scarves to cover up the mark in my neck, which is actually worse than the one below my shoulder. I also have a couple of extremely dark bruises beside the incision — I’m not sure exactly what they did during surgery to cause those.

I am noticing that I wear out more quickly than I’d like, but I guess it’s pretty traumatic to the body to undergo that, especially since I was so sick afterward.

I still haven’t gotten the scoop on when they’re going to turn it on. The doctor’s office has to schedule it, and the woman in charge of that accidentally scheduled it before I had the surgery. Imagine my surprise when I got a call from the turn-it-on-doctor telling my I’d missed my appointment to have something that hadn’t yet been implanted turned on.

The doctor’s office was supposed to reschedule and let me know when, and since I haven’t heard from them I called to remind them.

VNS Days 1 – 3

Day 1:

Surgery first thing. Had to wait for-EVER once we got there. Told to get there at 6:45, apparently the surgery itself wasn’t scheduled until 8. Paperwork took a grand total of 3 minutes.

They put me in a bed in a smock, footies, and a little blue cap. Everyone kept asking me if I smoked, drank, had taken out any piercings, etc. I was ready to ask the next person who asked me if they were asking because we were going to have a party.

Everyone was really nice, and they wheeled me into the OR, which had these 3 ginormous lights. I couldn’t see very well because I’d taken my glasses off. So they attached my IV and the room started scrolling toward the ceiling. I thought about asking if they’d given me something. Then one of the nurses asked me if I could tell they’d given me something. I told her yes, and that was the last thing I remembered until I woke up.

I was wobbly, but got to go home shortly. Slept a lot of the afternoon, but as whatever they’d pre-medicated me with wore off, a began to have a terrible reaction to the general anesthesia. Dry heaves are the worst.

And then I saw the implant.

Guys, it looked like someone had implanted a cupcake. It was huge, and all I could think was WHAT HAVE I DONE??!! I was going to be a freak with this huge lump on the left side of my chest. You could even see the leads going up into my neck. Forget the scars, who cared about the scars…who was even going to notice the scars with this massive soup-can-lid sized lump?

I mean, I teach, and people stare at me for hours at a time. And I like wearing tank tops. My mom said, maybe I just wouldn’t be able to wear as many tank tops, and I thought, Like hell. But then I started thinking about meeting guys. If I met a guy I was interested in, would he be repelled by this nasty huge lump I had? I would be. I started to feel like a freak.

Day 2

Got some medicine to stop the puking.

Was allowed to peel off the gauze. I now have two 2″-incisions, one horizontal on the front of my neck, one vertical just to the right of my left arm….well, that one’s probably more like 3″. There are no stitches, they used surgical superglue, so I won’t have scars from the needle. It actually looks pretty good, considering.

And…thank GOD…the swelling has gone down a bit over the implant so it’s not like I have an Alien trying to bust through.

It’s right under the skin, and I can feel it, a hard disc a couple of inches across. And yes, I can still see the lead going up toward my neck. I really hope there’s still swelling to go down.

Day 3

Checked my phone and go on my computer and am a little upset to have missed some important work stuff on Friday. I expected to be back on the computer by Thursday afternoon after the surgery, and obviously I was trying to turn inside out thanks to the general. So Friday came and went and I missed things that day, too. So now I’ve been doing catchup and a little damage control.

I’m sore, but I haven’t wanted to take any of the painkiller they gave me, because it can make you kind of nauseated. That’s all I need right now. So I’ve just been taking Tylenol, the only other thing I’m allowed to take.

I find myself favoring my left arm, and the implant feels heavy, especially if I lean forward, even though I know it isn’t. I guess it’s just the fact that something is in there that I’m not used to, right underneath this big vertical wound.

I’m trying to figure out what it’s going to be like to have this thing in there when it doesn’t hurt around it. I mean, if I have an itch, will I just scratch like normal, or will I have to be careful I don’t shift the thing under my skin?

I also keep wondering how they got it over there. Did they have to slide a scalpel back and forth under there to disconnect the skin from the muscle or what? Gross, but inquiring minds…well, maybe I don’t really want to know….

VNS and Me

The first, and most obvious question, is — What is VNS?

VNS stands for Vagal Nerve Stimulation. The Vagus nerve runs down from the brain stem and affects all those important internal organs — heart, lungs, etc. According to Wikipedia, “Vagus nerve stimulation (VNS) is an adjunctive treatment for certain types of intractable epilepsy and clinical depression. VNS uses a stimulator that sends electric impulses to the left vagus nerve in the neck via a lead implanted under the skin.”

So that brings us to this blog.

I’m getting the VNS implant in two days for chronic and recurrent depression, and I intend to chronicle my experience with it here.

But let me bring you up to speed with a little info on me. I’ve had problems with depression since I was 11. It was kind of like being the unwitting victim of a landslide. One minute I was struggling through adolescence like any other kid, the next I was buried under a few tons of sharp and painful rocks, wondering what the hell hit me.

In the 25 years since, I’ve taken every psychological test, done all kinds of therapy, and taken damn near every medication on the market.

The problem is, a med will work for a little while and then stop, leaving me back where I started. I seem to have that problem every year to two years. Right now I’m taking a cocktail of meds that makes even the pharmacists raise their eyebrows (and you know they see everything). We had to just keep adding things until I was functional again. I was in bad shape this time around…bad enough that I was ready to try anything. (It only occurs to me after I wrote that that “I was suicidal” might have more impact on the reader. I don’t even see “I was suicidal” as shocking anymore. Suicidal is a given when I get bad. I can’t stand to be conscious when I get bad, so I “self-medicate” with sleep, sleeping 16-20 hours a day, easily. Not so good for the career.)

Anyhow, here’s my cocktail.

Effexor — 225 mg
Abilify — 4 mg
Lexapro — 20 mg
Trazodone — 100 mg
Synthroid — 100 mcg
Cytomel — 25 mcg
Lamictal — 100 mg
Deplin — 7.5 mg

Those are just the drugs for the depression. And I’m still having trouble.

I’ve also taken

Prozac
Zoloft
Celexa
Wellbutrin
Cymbalta

and a handful of old-standby antidepressants called tricyclics and MAOIs.

I’m kind of nervous about having this thing implanted. I mean, in some ways it feels really counterintuitive to me. I want my depression taken out, so we’re putting something in? But I guess that’s how medication works, too. You put it in the body.

On the other hand, if it could mean never having to sleep just to stay alive again, freaking wire me up!

Oh, one more thing I should add in this first entry. Insurance has refused to pay for it. They don’t care that I’ve wrestled most of my life with this disease, this monster, this demon; their refusal letter is practically a rebuke. And they are cheerfully sure to add that they don’t care if you have a life-threatening illness for which this is the only treatment — they’re not paying, dammit. But hey, have a nice day.