Welcome to Lydy Land III (TMI Re My Brain)

[lydy]

I admit, I'd totally been hoping that ECT would be the magic pill. I'm tired of all the time trying to figure out if I'm unhappy or being lazy. Also, I'm tired all the time of being unhappy, or being on the verge of being unhappy, or just coming out of being unhappy. Having no sense of shame, and having been born without modesty, I've been polling friends for information on ECT, if they know anyone who's had it, what they think about it, etc. I was at porphyria's baby shower last Saturday. One of her friends is a pediatric neurologist, who I know slightly and like more than that. When she heard me asking about ECT, she asked me if I had ever heard about VNS. Nope.

VNS stands for Vagus Nerve Stimulator. It's this queer thing rather like a pacemaker only different. They cut a little hole in your chest, and another in your neck, and wrap a wire around your left vagus nerve. The power supply fits into the incision in the chest. I think the wire is inserted in the other incision, wrapped around the nerve, and attached to the power supply. I'm not real clear on the whole geographical thing. It stimulates the nerve every so often, which in turn stimulates both the parasympathetic and limbic systems, and if I knew what those were, I'd be a wiser person today. They affect things that help control your mood and your neurotransmitters and for all I know your psychic presence on Alpha Centauri. One of the things they do very, very, very well is they control seizures. The other thing it has spectacular success with is depression. The device has been FDA approved for both uses since something like 1985. Safe as houses. Well understood, at least, as well as anything involving the brain can said to be well understood. Incredibly non-invasive. The pediatric neurologist I was talking to was excited about it. Entranced with it. It had committed miracles as far as she was concerned. She was so enthused that she unconsciously reached out and rested her hand on the place where the power generator would go and said, "Call. Let me write down the name of the nurse I work with. She's great."

I poked around the web site which was, of course, VNS for dummies. That's ok, I was a dummy. Some nice stuff, some useful stuff, some stuff I wouldn't bother telling a two year old. One of the most interesting things is that, although it is an adjunctive therapy like ECT, it may allow the doctor to wean the patient off drugs, or at least reduce the amount of drugs the patient is on, over time.

To my knowledge, no one has ever found any relationship between bi-polar and epilepsy or any other seizure disorders. However, most of the bi-polar disorder drugs were originally developed as seizure drugs. Now, let's have a review. The VNS is effective on depression and class? class? Let's not see the same hands all the time. Yes, you at the back. Epilepsy! Most mood levelers are also classes of anti-seizure drugs also known as anti-epileptic drugs. Very good.

I did call, on Monday. The nurse's name was Ellen Smith, and she was fun and smart. She referred me to her case manager, and I said that I would call her case manager on Tuesday. Tuesday -- I remember Tuesday, now. I didn't sleep through it, I only thought I did. I actually went to Pat's and did some work. I couldn't call because I was working. I don't remember when I went to bed. Wednesday I slept. Possibly because I was afraid to deal with the VNS. I don't know why I do things anymore. Thursday, I slept. Same song, second verse.
Friday, I got up. Very late. I forced myself to make the call. The nurse was discouraging, in that anyone who has graduated from nursing school really ought to be able to explain the limbic system better than, "Well, we did have this back in nursing school, but I really don't think I could explain it to you now..." She will, however, send me many DVDs and pieces of literature on pretty, shiny pieces of paper, and talk to my psychiatrist, and talk to my insurance company, SCREECH.

"What state do you live in?"

"Minnesota."

"Minnesota insurance companies don't approve VNS for depression. They only pay for it for epilepsy." Double heart beat. Sudden perky voice of despair, "We'll instantly appeal it, of course. We'll go with you as far as you want to go in the appeals process."

"You've done this in Minnesota before."

"Several times."

"Ever won?"

"Um, no."

"Right."

"What's rack rate on the procedure?"

"Huh?"

"What does it cost, start to end, out of pocket? Assume I have a rich uncle who just died."

"Oh," she said in an even more perkily apologetic voice than before. "Well, including everything, the device, the surgery, the follow-up, it'd be $25,000."

"Twenty-five thousand dollars?" I started to cry.

"Yes. I'm sorry."

Ok. It was looking like the magic pill. Two magic pills, one of which looks poison and one of which is a mirage all in a week is a bit much. I don't think that it entirely explains why I slept for two and a half days and have been crying for two, though. I think my new-ish anti-depressant isn't working.

I mean, I called up my mother and cried at her for a half an hour, and when she suggested I go home for a while, I actually considered it. I'm still considering it.


Meanwhile, anyone who hasn't heard Jonathan Coultan's Re Your Brain should go and listen to it right now. It is way funnier than Code Monkey and if I had any energy, I'd go find the URL, but I'm sure you can manage just fine.

Comments

[shalanna.livejournal.com]

PLEASE don't consider shock therapy/electroconvulsive therapy!! It turned my mother into . . . well, it changed her personality for the worse. This also happened to my husband's neighbor's mom (who had it for alcoholism, but it just made her worse and more snappish and nasty,) They gave it to my mother to wean her off the doctor-prescribed amphetamines that she had taken for almost 15 years. This was in 1968 when she had it, and also had insulin shock therapy. (!!!) As soon as my dad's insurance ran out, they pronounced her "cured" (after six weeks) and with some group therapy, they sent her home. It made her peevish and snappish all the time, plus took away all her ability to do math and her knowledge of much of English grammar. Gradually some of her vocabulary came back and she remembered SOME of the stuff she'd forgotten (it makes you massively forget recent events and "school" knowledge), but this is now almost 40 years later and she has never had the intellectual capability that she had before. I've seen two completely different personalities. When hubby found out about this (it was always a Deep Dark Secret--remember when Thomas Eagleton was revealed to have been a patient who'd had ECT, and they removed him from the Presidential ticket and made it a scandal?), he yelped, "That's why she's LIKE that! She's just like our neighbor . . . they did that to her, and changed her personality the same way." And they're still both visited regularly by the Black Dog. SO this is not a good option. I don't care if they tell you "it's different now." Bah.

The vagus stimulator sounds MUCH more promising. I think I'd go with the insurance people and let them appeal! Or maybe you could go to a charity or a church and see if some organization will sponsor you for the device. What's the harm in letting them appeal? You could be the first to be approved. $25K is not that much; my cousins have all had the lap band and/or gastric bypass, and that cost WAY more than this, and isn't reversible (lap band is supposed to be, but if they took that off, my cousin would fatten up, she is convinced, so she never will reverse it!) Whereas this nerve stimulator could be turned off if you didn't want it later. Good luck with this, and I'll keep you on our prayer list.

[lydy.livejournal.com]

Were they giving her the insulin shock therapy at the same time? (I can't actually think of words vile enough to describe insulin shock therapy.) I ought to look into acupuncture, but I don't believe in actupuncture, which makes it more difficult.

The difference between the vagus nerve stimulator and the lap band is that obesity is the new hot disease. Moreover, it makes hundreds of thousands of dollars for the surgeons and hospitals. Having recently worked in the Department of Surgery at the University of Minnesota, I actually know some real numbers and some real bariatric surgeons. At the time, bariatric surgery was the fastest growing area in the department. It was totally raking in the bucks. There's a complicated relationship between the cost of a surgery and whether or not it's covered by an insurance company partly impacted by what the federal government will cover through Medicare, Medicaid, and whatall ever else it is that they do. Since the government is incredibly het up about fat people, getting a lap band covered by insurance is easy-peasy.

Depression coverage is largely driven by drug companies recouping their R&D money by selling drugs at spectacularly high costs. (Last time I calculated it, my drugs w/no insurance were running about $1500 per month.) The government does cover depression, but it doesn't really have any particular dogs in that fight, unlike obesity.

My guess is that a VNS just isn't very profitable. Let's face it, $25,000 is basically peanuts for a serious medical procedure. Compare it to a Roux-n-y (complicated lap band) which will run, um, I dunno, quarter of a million? On a Roux-n-y, it's probably worth the insurance company's time and energy to dicker. Mostly everybody charges between 40% and 60% more than the insurance company is going to pay because the insurance company and they have a service agreement to provide services at a lower "cost."

What that means, to me, is that my psychiatrist charges my insurance company $190 for a 15 min. med check up. If I'm between insurance companies and I'm "self pay", she charges me $70, because what she actually gets from the insurance company after the house discount is applied is something like $85 dollars.

So, I dunno, maybe I could dicker it down. Or not. Or, I don't know. At the moment, I'm too tired to think about it, you know.

I do know that if you are between insurance companies and find yourself paying out of pocket, ask if you can pay what they'd get if you were insured, not what they'd charge if you were insured.

[sraun]

A whole lot of not great news. Good luck with whatever comes next, and I hope things get better.

[kalmn.livejournal.com]

boy, that sucks a lot. a lot a lot. i think crying for two days and sleeping for two and a half seems like a perfectly reasonable response, although probably the new antidepressant does want to be looked at.

i wish i had a magic brain-fixing wand.

[lydy.livejournal.com]

i wish i had a magic brain-fixing wand.

You know, you could get a lot of money for that thing.

[jiawen]

Wow, that sucks. It's always something, isn't it? Why does mental health have to be some kind of zero-sum game? Grrr.

Moving back for a while seems like a good idea. How long would it need to be?

[lydy.livejournal.com]

Explaining about my mother and me would take a lot of time. Let's just say that it was nine years after I moved out of the house before we were on speaking terms again.

It is a sign of great sensitivity and maturity on her part that she assured me that I would not be required to attend family worship or go to church on Sundays.

Calling my mom up and crying for a half an hour was, to say the least, extremely unusual. It might be smart to run away to another place for a week or two. I'm unconvinced that my mother's house in small town Iowa is really ideal. On the other hand, I'm very touched by the offer. It's a weird sort of feeling. Being comforted by one's mommy is one of those things that not many of us grow out of. But having difficulty remaining in the same house with your mother for more than a couple of hours makes things complicated, too.

Besides, I'm not sure mental health is zero-sum. I'm thinking it's negative sum.

[marykaykare.livejournal.com]

I'd offer to let you run away to our house, but I've just spent 3 weeks in Arizona for the sun so I don't stay in bed half the day and read compulsively the other half.

MKK

[marsgov.livejournal.com]

A dear friend of mine has one of these implanted, and it has not proved to be a magic device. And she paid for it out of pocket, because either the insurance companies just don't want to or because they classify it as an experimental device.

I believe she may be willing to speak to you about it. She's a physician who is used to explaining things.

As for ECT, it has a undeservedly bad reputation from the bad old days.

[papersky.livejournal.com]

*hug*

Don't move back home!

Also, don't have ECT if you can possibly help it. It sort of works, but it seems to have an incidental side-effect of burning out the creativity bit. Poison is probably the best way of seeing it.

Acupuncture would definitely be worth trying -- I didn't believe in it until it worked. But that was for pain, I have no idea if it works for depression. Google around and find someone trained in China, and don't pay more than $60 a session. $60 is worth risking, and that's what I've always paid for acupuncture in Britain and here. It worked after my concussion when Western Medicine was all "keep taking the tylenol".

What states insurance companies do pay for it? Are any of them places you could get work-with-coverage for a few months?

Or, what are we saying, $25,000? Healthcare costs less if you spread the costs out. So that's $500 each for fifty people, or $250 each from a hundred. This is a rough year financially for us because we just bought the apartment, but rysmiel and I could spare $500, though maybe not until next month. But come on, everybody! Turn out your pockets! Pledge drive!

[cakmpls.livejournal.com]

I agree that the money could be raised. This is fandom, after all. Such things are not unheard of.

[lydy.livejournal.com]

At the moment, my problem is more along the lines of feeling like an ass between four or five bales of hay.

[marsgov.livejournal.com]

Actually I'd like to expand on my previous comments. ECT provides safe and effective treatment, according to the last time my sources (my spouse) and I discussed the topic. It doesn't work for everyone. I can ask if you like, and of course the Mayo Clinic has an excellent web site.

The VNS takes some fine-tuning to get to work properly, and actually I thought that it was wired into the skull somehow -- I will ask my friend. She does have a tendency to speak a little breathlessly when the simulator gives her a jolt, and perhaps look a little abstracted. She seems to be happy with what she has, and it works better than other meds she's tried.

Contact me if you'd like me to pursue this...

[redbird]

Any treatment will work better if the patient believes in it, but acupuncture might be worth trying anyway. The point at which I started thinking "hm, that isn't just placebo effect" was when a basically sensible friend told me that acupuncture was benefiting his cat, who I'm sure hadn't been reading about how wonderful it would be for him, and wouldn't have understood explanations from my friend or the vet.

I haven't had acupuncture myself, though.

Also, one more vote for not going to stay with your mother; at best, it would swap in a different kind of unhappiness.

[dd-b.livejournal.com]

The point where I started thinking there was clearly something to some bits of acupuncture was when I read an article from Harvard about using it for anesthesia for an appendectomy. There are enough different bits that I'm still pretty open on any other single application.

[nancymcc.livejournal.com]

I'm not sure why I'm another voice suggesting you try accupuncture, because I've never used it or believed in it either. I think it's because it's (a) inexpensive -- at least on a relative scale, (b) unlikely to have nasty side effects, and (c) known to work for some who didn't believe. After all, you've pointed out that the "success" of various drugs can't be adequately explained (although I prefer western medicine admitting they don't know the mechanism vs. eastern medicine offering a full explanation that seems bogus to my western-trained mind).

I'm impressed that you are pursuing options. Please cut yourself some slack for a bit of panic, in the short term. Courage is pushing onward in the face of fear. And you don't have to exhibit courage every moment in something like this. You are very courageous!

Also, I echo your awareness that brain disfunction can look a lot like laziness from the outside. Buy truly lazy people -- or moments -- aren't miserable (when I think about it, I've experienced the difference between a panicked "I can't!" and and a shrugging "why bother?")

[bibliofile.livejournal.com]

I too was under the impression that ECT used to be a lot cruder than it once was. Memory loss remains a side effect, unfortunately, but it really works for some people. Now.

I've heard of VNS, but I don't know anyone who has tried it.

Experimentally, some folks are checking out TMS (transcranial magnetic stimulation), which AFAICT is holding an electromagnetic ping-pong paddle to one's head. A trial was just starting up at Rush a couple of years ago. You (Lydy) know about the NIH's trials page, right?

If you want to run away someplace, you could always stay here. Of course, the housekeeping tradition is . . interesting . . by fannish standards, and not good if you're allergic to cat dander. I totally understand the impulse to run away for a time; I'll bet there are other places you could go, too.

p.s. -- acupuncture alternatives

[bibliofile.livejournal.com]

If needles squick you, you might try shiatsu. It follows the same principles of Chinese medicine, but it uses fingers on the pressure points instead of needles.

Re: p.s. -- acupuncture alternatives

[mom23cats.livejournal.com]

I have seen great things with shiatsu at school. It might be worth checking into. I know I have seen shown some points I use with the kids when I see a manic cycle coming on and it helps it not be so intense,if I can get them to actually sit and let me at their feet.

wish I had great words of wisdom....

[minnehaha.livejournal.com]

I'm sorry. And good luck with the various alternatives.

B

[marykaykare.livejournal.com]

'm tired of all the time trying to figure out if I'm unhappy or being lazy. Also, I'm tired all the time of being unhappy, or being on the verge of being unhappy, or just coming out of being unhappy.

As you know Bob, I can hear you loud and clear. I can add another fun one. When we had to euthanize one of the cats I got tired of wondering/be afraid if my mourning would send me into an unrecoverable downward spiral.

It all sucks and I'm so sorry.

MKK

[minnehaha.livejournal.com]

Nice of your mom, but if you cannot say with certainty that going to your mom's house is the best thing for you, then I don't think it's the best thing for you.

Sue Magee is an extraordinarily good shaitsu person, in my experience, although my experience is limited to just her. I was amazed by how helpful her ministrations were. She can recommend an acupuncturist, too.

I like the fund-raiser idea.

K.

[joel-rosenberg.livejournal.com]

I've got nothing useful to suggest -- I'm a little skeptical about ECT and very, very skeptical about the witchhunting and hysteria around it -- other than, say, let's go out and do coffee something this week, maybe? I doubt that a little caffeine and company would do any harm, even if it's my company.

As to acupuncture, why not? At worst -- given ordinary sterility procedure for the needles -- it's a placebo, and the only thing wrong with using a placebo is substituting it for something that there's reason to believe might work in another sense. (My own guess is that, in many cases, it stimulates endorphin production, and that's not a bad thing for feeling better.)

[laurel]

Oh, hell. Just read this whole saga. I've been fairly non-functional and not reading much in the way of email and a little more of LJ but sporadically (going days without the net! It's crazy!).

Oh for the magic device or pill or *something*. It really really sucks to get your hopes even a little bit up for a possible solution or at least something to make things better and then have it not work out.

Sympathies, big time. Folks have speculated that I might be bipolar, but so far I've just done the anti-depressant roulette thinking I don't want to try yet another series of meds (but fearing I may have to). I did just get a prescription for a lamp for SAD and I hope that maybe something as simple as light will help a little. Every bit helps, right?

I fucking hate mental illness.

If you ever want to get together and be non-functional, I'd be up for that. Maybe. You know how it is. In theory I'm up for it, in practice I'd have to find the right moment if you know what I mean. I've not been getting out much (to say the least).

I'm beginning to wonder if the latest drug I'm on might be responsible for my flipping words around and parts of words around, I should go do some reading on that. Your post that mentioned aphasia made me think of that, so thanks!