Brain Tickles Masterpost
Someone asked so now there is one. Only kind of a FAQ but it's easier to format this information as a series of questions.
Q: What's this brain tickles/brain implant thing you keep posting about?
A: I'm a cyborg science experiment. The less cool way to say this is that I'm a patient in a clinical trial testing a new application of deep brain stimulation. I have a pacemaker for my brain, basically. The device isn't new but the use is.
Q: What's the device like?
A: It's a couple of depth leads attached to a small box set into my skull, everything underneath the skin. It monitors my brain activity in one side of my amygdala, and when it detects a certain concerning biomarker (pattern of brain activity), it zaps my left ventral capsule in response.
You can check out the actual manuals for the device here, which include a step-by-step for neurosurgeons. I think that's pretty cool.
Q: So you don't have epilepsy. What disease are they studying this for?
A: I have treatment-resistant major depression. The study guys think this is probably a different disease altogether from what you can treat with medication, due to how it behaves, and also, because it won't respond to anything short of direct neurostimulation (like TMS or ECT, which will get a response but not ultimately work).
Besides making me not life-ruiningly miserable for literally no reason all the time, the stimulation makes major improvements to my otherwise pretty shaky cognition and memory, gives me the energy to perform basic tasks, and seems to fix a lot of autonomic stuff like insomnia and digestive issues as well.
Q: Does that mean they know what causes depression?
A: They know several different parts of the brain that you can tickle to treat otherwise intractable depression. Brains are awfully individually variant, and you can't reasonably guess which site is going to do it for a given person.
Q: What's the root cause, then?
A: No idea! If they have a guess, they're not telling me, and I'll find out when they publish.
Q: How did they figure out which part of your brain to tickle and which to monitor?
A: They gave me an SEEG and stimulated a bunch of likely areas to see what happened. After that, they spent a few months going through the literal terabytes of data recorded.
Q: How much did the surgery suck?
A: The SEEG was less bad than any root canals I'd had up to that point, although I've had less shitty ones since. The worst part was that I was considered a fall risk and needed to call a nurse whenever I had to pee.
The actual device implantation was worse to recover from than a root canal, but still sucked less than my totally easy, uncomplicated, textbook wisdom tooth removal. I spent two and a half days napping on-and-off, I took a lot of tylenol, and I couldn't sleep on that side of my head for a couple weeks. That's about it.
In advance, they told me there was about a 1% chance of infection and a 2-3% chance of bleeding. Neither thing happened. Yay! Compared to the odds of complications from other types of surgery, that's pretty great.
Q: Can you feel your brain getting zapped?
A: Normally, no. I can feel when it turns on in the morning because I pretty quickly start to feel more alert and less shitty, but the standard zaps aren't strong enough for me to feel physically. If they were to crank up the amperage some, I could feel that, and it'd be extremely distracting.
Q: What does that feel like?
A: At lower levels, if I can just barely feel it, it's kind of like a little anxiety thrill or tickle of anticipation down in the core of my chest, and my palms prickle. At higher levels, like they used during the SEEG, it's more like a rush of electric energy and heat that wells up in my core and spreads out into my limbs, and I have to wiggle them around to "shake it off" or it's too much to handle.
I felt some other, different things from other sites that they didn't end up going with. There was one that made my eyes unfocus unevenly and made me feel weird and lightheaded in a way I can only describe synesthetically (swell, rubber, gum, balloon, pink-red), and gave me the sense that something Bad would happen if they kept pushing that button. There was one that just made one or both of my hands start buzzing for some reason.
Neurostim that you can feel is incredibly distracting. It's not like inputs from outside that your brain can evaluate and filter. You can't ignore it any more than you could ignore having a seizure. There was one setting we tried that made me feel kind of like I had an intangible "itch" somewhere inside my right shoulder and my right leg, and every time it fired, it derailed my thoughts so badly that I couldn't even focus on a simple phone game. Something more intense is going to knock you on your ass.
Once in a long while (once every five months or so, maybe?), I have dreams where I experience a different, half-remembered version of that electric energy feeling, even though the device doesn't stimulate me at night. Actually, it's been happening ever since the SEEG. I think my brain just learned and filed away a new type of sensation.
Q: If I got my brain tickled in the same place, would I feel that?
A: Almost certainly not. I can't guess at what you'd feel, but as mentioned, brains are really individually variant. It's pretty much different for everyone. You might feel something I don't even have a frame of reference for.
It also depends on the exact way you're being stimulated. The same site can either make me feel better or make me cry uncontrollably, depending solely on how long the electrical pulses are.
Q: How many amps are they hitting you with?
A: They can't tell me (yet) in case it placebos me in some way. I know it's less than 3 mA (because I can feel 3 mA) and probably more than 1. 6 mA is the strongest they've ever given me, which is a brick-to-the-face biofeedback high.
Q: How do they know if it's working and not a placebo effect?
A: You report twice-daily on your symptoms throughout the whole thing. There's a phase where they occasionally change the type of stimulation or turn it off entirely for several weeks. They don't tell you when they change anything.
Personally, it's consistently obvious to me within about ~20 minutes when they change something -- they've commented on how consistent my responses are and how quickly I see differences. I can even tell when they turn it off during visits to do recordings. I've heard that's not true of all the patients, though.
Q: What's this piss signal thing you mention?
A: At one point, the stimulation started giving me bladder spasms, so every time it fired I felt like I had to pee. They had to find a new setting that didn't do that. They didn't change anything at the time, so we don't know exactly what caused it. Possibly the electrode drifted a very, very tiny amount, or possibly my brain just built an annoying new connection that allowed this to happen.
The study guys reached out to some other experts they know about it, though, and determined that could happen if my hypothalamus was getting some stimulation by accident -- entirely possible, since it's pretty close to the electrode.
Q: Do you recharge it or get the battery replaced or what?
A: I have to get the entire battery pack/computer part of the device replaced every, probably, six to twelve years when the battery starts to run down. It detaches from the leads, so they won't have to redo the part that involves threading wires into my brain every time.
Q: Aren't you worried about your brain getting hacked?
A: Well, my implant doesn't have wifi or anything. Literally anything can be hacked somehow, but I'll worry about that when I get into a sworn blood feud with an engineer.
Q: Aren't you worried about handing over part of your body to a corporation?
A: The alternative is being in hell at all times forever. I too would like to have an open-source brain implant that's easy to replace though.
Q: Aren't you worried about never being able to get an MRI again?
A: I actually can get an MRI, as long as the MRI scanner puts out a basic-bitch amount of teslas and my implant is switched into MRI mode. I'm not totally sure how that works, but it puts a strain on the battery, so I'm guessing it's generating its own little field. My implant isn't ferrous, so the worry is less "yanking wires around" and more "tissue heating".
Q: Aren't you worried about your body rejecting it?
A: No, medical implants are made of materials like titanium and silicone that the body doesn't care about (unless you have a titanium allergy). I'm really not sure where the pop-culture idea of cybernetic rejection came from. I'm guessing it's writers not understanding why organ transplants reject and thinking it works the same way. Or something about how steel implants can sometimes start to corrode and irritate tissue.
Q: Aren't you worried about this being used to mind control everyone?
A: In my case, mind control is sort of the point.
But also, not really. I mean, you're talking about each individual person getting multiple MRIs, a ~$40,000 implant, three brain surgeries (two of which bookend a multi-week hospital stay), and requiring like a year's worth of fine-tuning from a team of specialized professionals. And it all requires so much precision that if you cut corners on any of this, you're not going to get the results you want.
The cost, time, and effort involved to implant people at scale would be fucking insane. Even if all the tech involved became cheap, you'd still have the problem where you need to pay a competent neurosurgeon for the SEEG and the actual device implantation, and a team of competent neurologists to spend at minimum several months gathering and analyzing data on how each person's brain works, because the individualization of the brain means you can't plug-and-play this shit. And each group -- let's be generous and say it takes only five such specialized professionals -- would be able to do this to about two people a year.
Maybe that will change the day we develop some means of simply scanning people's brains to map how they work in detail, at which point we'll basically have solved neurology.
Usually whenever there's a tumblr post going around about brain implants, someone freaks out about a hypothetical of, like, Amazon installing pleasure buttons in their workers to keep them compliant. That would involve spending minimum a hundred thousand dollars (but probably much more) on surgery, hardware, and calibration per disposable worker, and then if you fire them or they get a brain infection or something, you just lose that money. And if you cheap out, it doesn't work and you lose the money. And then the result, if it works, is that you get a button that makes them worse at their jobs when you press it.
A large corporation bent on technological enslavement to save a few pennies would literally get better results from slapping $30 shock collars on everyone.
Q: Does the study pay you?
A: I get the medical care for free. And $10 every other week to cover transportation costs.
