Tag: vns device

Beta Testing Empatica’s Embrace “Seizure Monitoring” Watch

embraceboxI was lucky enough to never have to take home economics in high school. I don’t really know what was taught in those classes, but I’ve read enough books and have watched enough television to know that there was a possibility that I would have been saddled with an egg, flour sack or an electronic doll for a week to practice being an unwed teen mother.

And I would have failed horribly.

I began beta-testing Empatica’s Embrace seizure alert watch at the end of February and since then have gotten lots of response, questions and comments from other Empatica funders, those with seizure disorders and otherwise, trying to figure out how I got this sweet gig and how they can get a hold of one of these babies themselves. First of all, let me explain what beta-testing is and why you shouldn’t be jealous of me.

Being a beta tester has been more of a commitment than I realized that it would be, but I have been absolutely committed to my uncompensated position. Why? Because the better they are able to make this product, the closer they can get to get it recognized as a medical device and not just as a wearable technology. As I am writing this, they have just begun the clinical testing to begin the approval process to have this device recognized by neurologists and medical institutions all while the beta-testers like myself are fumbling through the clunky beta software and giving feedback when applicable.

I have adjusted my lifestyle to accommodate being tethered to a Bluetooth-dependent watch, but it hasn’t been a completely terrible experience!

IMG_0961

Being codependent and sending texts without being cognizant of it!

This is basically a “protoype” or kind of like a “dress rehearsal” so to speak. It’s not yet ready to be available on the market, but the company needs live testing with people who have the disorders in which they are trying to assist and monitor so they can improve the software. Because it’s not a finished model, it doesn’t have the battery capacity of a normal wearable and generally needs to be charged twice a day. I was definitely warned about this when I began the testing process, but it has still taken a little adjustment to get used to the charging cycle, and have killed it on numerous occasions.

I was told that because it’s a test model, I am not allowed to change out the thick, gray elastic strap the watch came with, which loosens with wear so I am constantly cinching it back up. If it is too tight, the diodes rub my skin until raw and peeling. Also, the elastic strap is a silvery gray, porous elastic material. IT might as well be white and velcro as it was begging to become filthy from the day I took it out of the box.

Empatica hasn’t pushed the finished app and I don’t even use the “teaser app” that they released on their blog for people that are waiting for their watches to arrive this summer/fall. I am using a special “beta app” which doesn’t allow me to see any of my own biofeedback. There’s a blurb about the “Empatica Mate” on their website, and that’s what I’m most excited about being able to use once I receive the finished model. This allows the wearer to see how their stress levels fluctuate throughout the day depending on their activities “like commuting by car vs. bike, meeting with your boss vs. a friend, and physical activity.” The final version of the watch will allow the wearer to customize a gentle vibration when their stress level is rising, for instance. I don’t get any of that.

What I have is constant vibrations when I get too far from my cellphone. The watch, like, I assume all wearables, is connected to your smart phone by Bluetooth and you need to have internet access for it to work. I don’t generally carry around my phone with me all the time. This has been a learning curve for me. However, I have made a positive discovery:

deskbuzz

So there’s that. My loss of items has been greatly reduced since I have been wearing this watch over the past six weeks. The Bluetooth range on this model is. . . not so great. Not that Bluetooth has more than a 60 – 100 ft radius anyway. I find that the watch can’t see through skin or walls, so if I’m in the next room the quality of signal decreases dramatically or if I have my wrist tucked under my arm or am sleeping on top of my wrist, I can lose signal just from having body on top of the watch.

A lot of things can set the seizure alert off. And I have the patience and good nature to mark down which ones are false alarms and which ones aren’t. I’ve had to stop in the middle of working with my clients in the middle of workshops due to flailing my hands too grandiosely to excuse myself and text Brad quickly, “Not a seizure” due to an alert going off.

On my birthday, we went mountain biking and the watch sent Brad and called him 17 times with alert messages due to the off-road vibration simulating monoclonal seizures. If my breathing is slightly labored, for instance if I am somewhat agitated or have been running for a short period of time, I’ve had false positives reported. I have even had a false-positive sent when I had secretly gone to 7-11 to get a slurpee one hot afternoon during a long break from work while I was standing in the store tapping the air bubbles out of the frozen confection. So, the device is still a work in progress.

I’ve never been a person to have my cellphone on me at all times. Usually when I’m at work my phone stays on my desk or in my bag unless I need to check it.

Because I’m a damn good employee.

Damn it.

However, over the last several weeks, I have been finding that if I leave my office, even to go to the restroom which is right across the hall, I will go “out of range” which is only slightly annoying as if I’m out of range for too long, the watch will go into “Error” status which won’t auto-restart when I come back in range, unlike the “out of range” status. When I’m in “Error” status, I have to manually go onto my phone and turn the app off and on again and get the watch to reset.

Like I said, not a big deal, but just annoying.

The only feature that is usable by me on this beta watch is the actual “watch” feature. It’s very futuristic with a single white light illuminating the hour and a slowly pulsing blue light showing the minute. Even a co-worker, whom is color-blind was able to read it once I explained the hour vs minute feature.

You may be asking, does it work? Despite my jokes and tales of false positives, I was on vacation a couple weeks ago, walking down a sidewalk on a street in a city I was unfamiliar with, hungry, dizzy and disoriented – next thing I knew, I was being held in Brad’s arm as he was holding my VNS magnet to my hand to help me “swipe” myself for the umpteenth time.

My watch called Brad and notified him that I was going into an partial or absence seizure and was no longer keeping up with him during our walk. He was able to immediately turn around and retrieve my magnet from my ankle to assist me and after a few minutes of postical phase, I was able to continue on!

Am I thrilled?

Yeah. A little.




1 Year Cyborgversary!

As many of my readers are aware, and many of my friends (if you’re local and read this blog); I find an excuse to celebrate just about anything. This is one of the better reasons. The day I became more than human – when I got my battery pack and brain wires, of course! You can peruse through the entire year’s journey by checking out this subpage.

Just in time for the holidays, I have a new sticker for you! Based on some pretty aggro Portland street graffiti that I did not have any part in, but did write 2 articles based upon. You can view them here and here. There is also a BikePortland article about it here.

Now you can buy a sticker that says what you’re thinking from me!!

fu

I’d write more, but this video pretty much says it all. A lot has changed in the past year. I went from working part-time and having two jobs to having one awesome full-time job. I got a kitten last December. Been having an awesome 2014. Check out the video!

1 Year Video – Complete with Running Commentary!




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.




First Ride of the Year & Seizures

I rode my bike for the first time on Sunday since mid-October.

Say what?

Yeah. Really.

freakfall

Original Photo ©Dropout Bike Club

Back in October there was this little event called Freak Bike Fall, complete with freak bike alley cross racing. It was a gorgeous warm day and I dragged myself out of the house, hauled my aching bones onto the tall bike and pedaled my body over to hang out with a bunch of crazy bikers from the Dropout Bike Club and friends. I rode a bit over 18 miles that day and assisted in marshaling the cross race. Pedaling as fast as my little high-heeled feet could get me back to my boyfriend’s work before he closed shop as I was having a little too much fun and lost track of time.

Then it got too cold.

And I had surgery.

And it was rainy.

And cold.

Which brings us to Sunday. 45 degree Sunday. Deceptively blue skied and gorgeous Sunday. I was determined to ride my bike, garshdamnit!

I was concerned about how my VNS device was going to respond to my riding, as a diligent over-worrier and researcher the information stated that it can with strenuous exercise breathing could get restricted during the device intervals. Having been a couch potato for the last 4 months, literally eating potato chips, this was a very real threat. So, I dug through the First Aid kit, found the bandage tape and adhered one of my magnets to my device on my chest.

Why tape the magnet to the device? Because holding a magnet to the device for longer than a few seconds will, instead of activating it, will temporarily turn it off. This will not effect the function of the device, nor seizure prevention.

It was cold and my legs ached. And what I did learn is that I traded the every 5 minute inconvenience of the device going off with the continual inconvenience of my face mask hindering my breathing by the very essence of it being, well a face mask.

I got to work alright, and when I took the magnet off, I learned that the cold rawness of your throat that you get while riding combined with the activation of the device brought on by removing the magnet is really not that fun a feeling. So, if/when I turn off the magnet again, I am going to totally wait until my core temp warms up until I remove the magnet.

I met with my brand new epileptologist the next day. He is very thorough and combined with his use of the word, “optimized,” of which he wants to make me – and his desire testing including a newer ‘sleep deprived EEG’ – and if my schedule will allow it in the future, come into the hospital for a week for an epilepsy lab. That includes taking me off all of my meds and just let the seizures happen. I jokingly asked him if they could run me through rigorous stress testing during that time, because I wasn’t that confident coming into a hospital for a week-long vacation was going to cause me to have seizures. I explained to him my definition of the epileptic “Three S’s.” (Not to be confused with the LDS When Not to Wear Your Temple Garment “Three S’s”: Sports, Sex & Swimming.) Mine are the triggers to seizures: stress, substances, or sleep. My new doctor like my simple explanation so much that he said that he was going to steal it.

Patent Pending. Patent Pending. Copyright. Patent Pending. 

He understood what I was saying and said that after I do the EEG he would check out the results and maybe if coming in for a week wouldn’t work that an ambulatory EEG would be a better idea.

Because wearing an awesome hat of wires for a week wouldn’t stick out like a store thumb. At that point, I would rather go to the hospital. 

Anyway, after we tuned up my VNS device to 1.0 mA he mentioned that if I wanted to hang out until after his next appointment he could give me another boost. I would have loved that, but I had to rush off to work.

And then Tuesday happened. I can’t talk much about Tuesday. Or Wednesday really. I know some seizures happened.

Sigh.

I went to work on Tuesday. I remember that. I had a couple meetings that day, and thank goodness I took notes and did a bunch of stuff where I have footnotes of that stuff, because it’s not there in my brain. I don’t really remember work. I don’t remember Wednesday as well. I slept off and on all day, so there’s that. But I know that I did some stuff because there’s little records of me doing that. But I remember waking up on the couch a little after 8pm.

And that brings us to the end of the week and today. So, it’s a progress. And it’s still a learning one.




Day Sixteen – VNS Device – Getting Turned On

Yesterday I went to the neurologist and got my vagus nerve stimulator activated! This process is still a work in process. I will have to continue to go back for probably several months to get the device’s dosage adjusted and hopefully eventually my medication as well.

The doctor warned that it would be very anti-climatic and true to her word, it was. However, as anti-climatic as it was, it is a life changing experience for me, so amazingly exciting. As I stated several times in the video, this device will mean less medication; faster recovery time. Where taking recovery medication will put me out for an entire day, using this device can give me a postical state of much shorter periods. Maybe even just a couple minutes.

That’s freaking unreal. 

The doctor went on to talking about how maybe I will be able to drive regularly in the future. I didn’t have the heart to tell her that wasn’t a huge priority of mine, but it’s the thought that counts, right?

With winter here and my Raynaud’s now in full-blown purple toes, back pain flaring up, this kind of medical visit was amazing. Check out the video to hear me activate the magnets and talk all sorts of random shit.

So I don’t mind if getting turned on yesterday was anti-climatic. It’s what it means to me that matters.




Day Seven – VNS Post Op – Healing Progress – Featuring an Annoying Kitty

Thursday was Thanksgiving here in the US. Basically that means that this whole week has been “that kind of week” because it takes you so freaking long to prepare for the damn thing. Defrosting things for days, curing, baking, roasting, drying. . . I don’t know. The only thing I made from scratch was cranberry sauce and mashed potatoes.

Also, it was just my boyfriend and I.

We stayed at home and napped all day.

I freaking deserved it.

It’s now been a week since I’ve had surgery. Time has really flown. Even though this has been my week off work, I actually have been working shifts at my 2nd job, so instead of healing, I’ve been slinging bar.

Plus I had a dentist appointment this week and had my face all numbed up traumatic style on Monday and then went to the ear doctor on Tuesday. Basically ENT doctor told me “tough cookies” regarding my tinnitus. Since my hearing is within normal range, basically there’s not much they can do unless there’s something physically wrong with my ears like a broken whatcha-ma-concha or fluid filling it. Basically because it could be a side effect of my meds or whatever, meh. There are five things they usually they usually try: antiepileptics, anti-anxiety, anti-depressants (two out of three of my meds are those types, so. . . )  – more meds to counteract meds! Hah! Then there’s a special hearing aid that does nothing but attempt to filter out the tinnitus. Then there’s just not being in quiet places. Listening to music (or white noise at night, which I can’t because electronic sounds give me migraines = seizures), etc. That’s annoying because I get sensory overload if I have too much sound. . . so. . . sigh. Tough cookies.

But anyways. It’s been a week and I have had this VNS device inside my body! Even though I did a ton of research about it before getting it and yet I am so thankful for my vascular surgeon, his skills, and the advancements in the techniques, etc.

My lead wire is put very low on the vagal nerve, near the nook in the throat. The doctor said that they started putting them there because it eliminates the scratchy irritation you get during the stimulation mode. He told me to let him know if I noticed any discomfort. I don’t know what that means.

Are they going to cut my throat open and readjust it!?

Not only that, but they put the scar right along the collarbone so when it heals it will just be a wrinkle. Same with the generator’s scar – an armpit crinkle. Beautiful. When I left the hospital they were both dry and I had no bandages. I’ve never had a major surgery with absolutely no bandages before. Bizarre. Reading about other VNS implants within the last two years, they leave with big padded gauze and staples.

Staples!!

Some of my favorite videos to watch were of a lady who is just a couple years older than me, has a similar diagnosis (her’s is uncontrolled juvenile myoclonic epilepsy), a similar body frame structure – I learned a lot from her seven videos chronicling the first few weeks of having a VNS device. The thing is that they were from just less than a year ago and she went home bundled up like a car accident. I was surprised that I didn’t have at least one of those clear covers over the incisions, but my summary said I could start showering the next day.

Good to go.

I am thankful for an easy recovery.

And no staples.

Also for my family and my kitties and all that.

Mostly no staples, though.

Here is a progress video. It’s actually filmed in my bedroom. (Bam chicka ba-wow) I found out that the #1 way to get my eight month kitty to give me loves, since he usually ignores me, is to film a video in the bedroom. He purred and made biscuits. He was all over that. His name is Moulton – after Alex Moulton, the frame builder/bike company.

(The video’s kind of jostly. I blame Moulton.)




Day 1 – VNS Post Op – Pain & Swag

Sometimes during the summer you get shotgun postings from me. That’s because there’s exciting things in my life going on. Well, there’s something exciting going on right now. That’s why I can’t hold to a regular schedule. Today’s a twofer! Complete with video. Don’t get used to video blogs.

Are they called vlogs?

Today’s an exciting day for me. The day after my surgery I am heading down to Cranksgiving to help run the show. This will prove to be exciting and exhausting enough as is. However, not only is this bike rally and food drive going to be super fun, we’re giving back to Outside In, which helps at risk and homeless youth as well as the fact that I am setting up a jacket barrel for Transition Projects for warm clothing donations for homeless adults. If that wasn’t enough I am leaving the event in a hurry to get to work by 4pm. Not my non-profit job, but the one I haven’t mentioned. A couple weeks ago I started bartending at an indoor bike park. They’re having a huge event this weekend as well!

Here’s the Facebook event page for Cranksgiving that I am at right now!

Here’s the event info for Helltrack. Today and tomorrow!

Here’s a 15 minute explanation of my aches and pains, etc.