7 Months Later – VNS Device Surgery
Well, it’s been a long road (I say, as if I’ve reached the end of it, but really, I’m like 2 blocks into a journey) – as of May 23, 2014 I have had my vagal nerve stimulator implanted for 7 months! That’s right. I became a cyborg on November 23, 2013. You can read about it here. Complete with video!
The reason why I don’t talk about my specific medication is because I am not a doctor or a health care professional. Everyone has specific needs and diagnoses. While I totally encourage research when your doctor talks to you about a new option, your body and individual cocktail is going to react differently than mine. Positive and negative side effects or reactions are based on your own personal chemistry, allergies, diet, exercise, sleep and more. I don’t want you becoming biased (if even unconsciously) due to something that happened to me. I DO recommend that you check out the community forums at Epilepsy.com if you want to ask or read about specific medications and numerous other sites.
Now onto the good stuff.
My most recent tune-up was on the 2nd of June, a couple weeks ago – which reminds me that I need to get some blood work done this week to check my new levels for my antiepileptic meds. At that point we lowered my meds again. We’ve been lowering my main antiepileptics for about 2 months now very slowly. I still have my “emergency pills” in case my VNS device fails or I need additional support. These generally are a quick acting anticonvulsants. However, I have been maxxed out on my main meds for a long time. Like, concerningly maxxed out. To toxic levels. So, in 2 months I have gone down 20% for my nightly dosage and 40% of my morning dosage! My neurologists have told me that I will probably always have to take meds, but this is substantial!
So what about my VNS device? Again, same as medication, people’s devices are set to what is therapeutic to them. This may be higher or lower than what mine is at. I am going to provide you with my settings only because I have a lot of engineer friends and it’s pretty cool information! If you’re reading this and have a much lower setting or a much higher setting, remember that there are other factors – medication, body size, seizure frequency, tolerance, etc.
Output current: 2.5mA / 20Hz / PW 250 microsec
Impedance value 3050 ohms
Magnet current: 2.75mA
*NOTE: For some reason this video filmed mirrored, which is apparently a common issue with my laptop. I didn’t have a program that would do this simple flipping task. I realized that it probably only annoys me. My sleeve tattoo is on my left arm and the device is implanted on the left side.
At around 4:10 in the video, you mention 250 milliamps.
The guys in Houston didn’t ask me to design a chip to fry your brain, so that must be 250 microamps instead.
Anyhow, what makes you feel that you want to put that magnet on top of that demipulse gadget?
Curious …
The Demiurge.
Thanks for catching that! I was actually all sorts of incorrect regarding that sort of measurement. What I was referring to was the pulse width modulation – a completely different measurement entirely! We cranked it down from 500 to 250 because it was too pinchy. I have myoclonic episodes so sometimes it’s pretty obvious, like when I have an arm flaily, twitch. Or I am kind of spacey, staring off for a second, or losing my thought. It’s much more difficult to predict since my seizures are generalized and I understand that the device is more helpful with focal seizures (or so I have read in studies)
Sometimes I think it’s helpful as well with anxiety or panic attacks. This might be psychosomatic and if anything, it just might give me a second to change my situation and refocus – but that stimulation of that vagal nerve brings it right back to focus, so you know. . . can’t hurt. (At least my neuro says it’s ok to do!)
As per turning off my device – when I am engaging in strenuous activities like bike riding or a big public speaking event or singing I might turn it off. However, lately it hasn’t been bugging me as much as it used to. My body has been getting used to it – kind of like when you play an instrument and you get finger callouses. Occasionally I get a little vibratey in my voice. But that’s often just normal hoarseness and reminds me to drink more water!
Disclaimer: I’m not a medical doctor, just an electrician
(in fact, I am THE electrician in https://youtu.be/GmIG5_4upL0?t=4m48s ),
and I am WAY more comfortable in an environment like Critical Tits
than in anything resembling a US corporate environment
(unfortunately, Burning Man is kind of jumping the shark and becoming silicon valley style corporate, too).
Anyhow. if I have to contribute something like
REPORT ON MATERIAL GIVEN TO COMMISSIONER
RICHARD P. FEYNMAN ON MARCH WA-WA,* 1986.
[R. P. Feynman, “What do YOU care what other people thnk?, chapter “Fantastic Figures”],
but not about exploding space shuttles … but instead, let’s assume that …
Houston has a problem what would be the best way to have your body tell that little can under your armpit directly that it’s a good idea to suck some valuable charge out of the battery and zap your vagus nerve with it,
without you having to bother with swiping a magnet.
So, in the spirit of “You just ASK them?”
[ http://scilib.narod.ru/Physics/Feynman/SYJ/en/Joking.htm#TOC_id2528450 ]
I’m asking you, if, say, I would put two electrodes, as shown in https://flic.kr/p/iXPTEM ,
right onto your scars, what kind of hint could I get to tell that demipulse thingy to zep your vagus nerve?
You mention “myoclonic episodes” …
Actually, what would an external box recording from such electrodes would have to look like so you could comfortably wear it without being bothered with it too much?
Looking at http://worldwide.espacenet.com/publicationDetails/originalDocument?FT=D&date=20081118&DB=worldwide.espacenet.com&locale=en_EP&CC=US&NR=7454245B2&KC=B2&ND=4
helps a bit, but only so much …
Regards,
The Demiurge.
by the way, one of the possible indicatons of VNS therapy is depression, I have been told.
So it’s not particularly suprising that it should have a real effect on anxiety or panic attacks.
– The Demiurge
I have been exp anxiety & panic attacks way before my vns was installed. It has helped my depression!