No, I’m not dying. Not anymore than most of us are.
However, I do have to recalibrate my goals, professional interests and how I spend my time. Click through for a post largely about me, what I deal with on a daily basis and how it’s affecting my future.
- Introduction - About Me Pre-Adult
- About Me as an Adult
- Illness Part 1 - The first episode
- Illness Part 2 - Diagnosis
- Illness Part 3 - The surprise?
- Illness Part 4 - Worse symptoms, and I’m still stupid.
- Illness Part 5 - Panic.
- Illness Part 6 - Fibromyalgia? Nah?
- Stupid Insurance Companies
- Bonus Pain - Migraines
- What does it all mean though?!
- Beta Testing
- Support Me!
Introduction - About Me Pre-Adult
I started playing drums when I was about 6. My cousin had a drumset, and I spent my summers and afternoons at my aunt’s house. I loved watching him play, and playing myself. It was the highlight of my day. I used to drum on anything. I loved playing piano at any opportunity, and I had piano lessons from an early age.
Of course… I hated piano lessons because that nice old lady was awful at dealing with children in a manner that didn’t seem scary or intimidating. Regardless I would always gravitate to the nearest instrument and practice whenever, however I could.
When I was around 11, I got my first serious instrument: a trombone. I played it in band, played at home. Played after soccer practice. Played on the playground. I played up through high school in orchestra and in marching band.
Sometime in between there I procured my first electric bass. It is a Squire II P-bass, red. After a couple years of obsessive playing (and I mean 8-20 hours a day.) I decided to do the cool Jaco thing. I went out on my porch with some sandpaper, some pliers and some epoxy. I ripped out every fret very crudely, filled in the holes with woodfiller, coated the fretboard with epoxy and sanded it down.
I played that bass constantly in school, to the point where I was brought on to play electric bass in marching band. I would use a long chord attached to an amp, or I would stand slightly off field and play. It was actually pretty neat. I’d usually play tuba or trombone lines and try to add a slightly bluesy feel (lots of b5s and dominant 7s for no good reason).
I also had my beloved Fender 5-string Jazz Bass (black) that I played in Jazz Band. We toured all over the city and parts of the state playing. I did that for 4 years.
Concurrently I played in a rock band with some friends. I used the same 5-string Jazz bass, except I’d re-string it with a low b-string for rock, and then restring it again with a high C when playing in the jazz band.
Again, concurrently I became serious about drums again. I played on the drum line for away games (where I couldn’t play bass, and depending on the availability of our flakey trombonist). I would always try to learn every song in the rock band I played. I had my own set at home where I’d work on metal tracks with a friend.
It was 100% music, with some Sega in there ;)
About Me as an Adult
I met my wife when she was a sophmore in high school. We originally met at a football game, where she was a dancer and I was playing electric bass in marching band. We didn’t know it at the time though…
Randomly one day I was browsing AIM Chat in its very early days looking to start a fight. I found someone with a profile proclaiming how they were Vegan and Straight Edge, so naturally this was a great target! I messaged here, made fun of her for a while, and uh… well, very happily we’re married now.
Entering College I knew exactly what I wanted to do: Music. I immediately started working on a dual degree paths for Double Bass and Percussion, studying education/theory and jazz performance.
WHAT A DISASTER. I hated school. They were all stuffy and only cared about music created 300 year ago. The jazz program was even worse somehow, with really snooty professors that had strong, but clashing opinions about what “real jazz” was. Nothing about it was enjoyable. I often skipped instruction and classes because I disliked it so much.
After college I basically just totally gave up music for a bit. Some occasional bands here and there. I worked with 2 major DAW companies at the time doing support and sales. If you’ve been in online software scene for a while, you probably know which two those are. I became enamoured with music technology, but I was being burned out by musicians and music culture.
Eventually I just totally gave up on music for a period of time. I became regional manager of a pizza chain. Then I started a sport kite manufacturing company called “Air Oeuvre” (lots of videos on youtube of my products and me flying). Then I started working at a local grocer doing random overnight work (it paid fairly well).
Then… things went sour.
Illness Part 1 - The first episode
In 2009 one night I got up to pee. On the way back to bed I fainted and smashed my face in to the ground pretty hard. This is called ‘micturnal syncope’, passing out after urination.
I didn’t want to go to the hospital but my wife called my father and brother. They came over, saw me all bloody and disoriented and convinced me to go to the hospital.
At the hospital they didn’t take me very seriously at first. They were treating me as if I was a drunk that just passed out and hit his head. I was asked if I had been drinking about a dozen times. Eventually a doctor came and wanted to check my orthostatic blood pressure, which is blood pressure before and after standing. If I recall correctly my mother suggested that a large male nurse come by just in case I pass out…
Boy, did I pass out. Just straight out. It was the third time that night in a short period of time. I recall waking up thinking I was at Bee Gees concert. It was surreal.
Eventually I was discharged after a CT and some tests to check for stroke and blood clots. I was told to see my primary care and a neurologist.
Illness Part 2 - Diagnosis
I saw plenty of doctors. Multiple Neurologists, Endocrinologists, Cardiologists, everything-ologists.
Finally I ended up at a doctor that decided to do a Tilt-Table Test. I failed spectacularly. I didn’t just pass out, but my heart stopped.
Cool. NEAT. Ugh.
After some further testing it was determined that I have Pure Autonomic Failure. Which was a surprisingly good explanation for my increasing fatigue, fainting, history of panic attacks and low blood pressure.
They also found evidence of a previous brain hemorrhage that had somehow not killed me and gone unnoticed (perhaps from the day I smashed my face?).
Given the increasing severity of the situation over the following ~18 months this was enough to basically disallow me from doing any physical work entirely until I was able to figure out appropriate treatment.
Illness Part 3 - The surprise?
Having been under the care of so many doctors, I learned that having very strong urges to sleep throughout the day was not normal. I’d been doing that since I was a teenager. I would constantly take naps. 3-4 of them a day, anywhere, anytime. I just became so tired that I had to nap.
My sleeping patterns had always been erratic. I rarely could sleep all in one night.
I also did an MSLT test. The results were somewhat inconclusive…
Why were they inconclusive? Because like an idiot, I drank a bunch of caffeine after I woke up from the sleep study! Even weirder was that the caffeine was supplied by the hospital. Why would they let you drink that before such a test? It does affect people with sleep disorders.
About a year later I had another sleep study, and this time I didn’t do anything stupid, but the results came in: I have Narcolepsy.
By some strange fate, I have 2 diseases that cause you to end up unconscious. Super neato! :(
Finding treatment was, and has been very difficult. Many stimulants increase the likelihood of orthostatic hypotension. Modafinil works well, but my insurance hates paying for it, and the necessary dose is very expensive for me, even if I purchase it from India.
Around this time I thought it’d be a great idea to join a band and play out. I joined 2 the guitarist from the rock band in school, and someone from drama class.
We played all over, including a live radio show on NPR (which I won’t name).
Clearly not a good idea. I had to exit the band when I had some serious health issues 100s of miles away from home. I didn’t want to go to the hospital, but I did want to leave the venue and acquire medication for myself. The rub was that we hadn’t been paid yet.
I literally offered to pay my bandmates to leave, and they didn’t want to. I’m not mad at them for that in the slightest. I may have done the same thing if I were them even.
I understand that they could not experience the medical issues I was having (bradycardia and low BP), but it became clear to me that I couldn’t carry on in that capacity.
Illness Part 4 - Worse symptoms, and I’m still stupid.
I think it was about in 2014? Maybe it was 2015. Thanksgiving night I ate a pizza that my brother made. I remember it very clearly, it was an awesome pizza. We watched some Top Gear.
I went to sit in the living room with my family and I felt this sharp pain in my chest and I started sweating. My throat started to close up. I felt like I needed to vomit or defecate and run. I told my mother (and wife who was nearby) calmly that I needed to go to the hospital.
So we did that.
Once again, this is partially my stupidity. During all those tests previously I had an allergy test that indicated a number of allergies. One of them was Dairy. Specifically a reaction to Casein. I have eaten dairy my whole life, and I never thought it. The doctor said that if I wasn’t having a reaction that it was ok to continue eating it.
Prior to that thanksgiving I was trying a diet (I forget which) that necessitated not having much, if any Dairy. The sudden influx of a very cheesy pizza caused me to have a reaction, and subsequently a severe Panic Attack.
I’ve had panic attacks in the past, and I knew that the PAF could cause Panic Disorder, but I didn’t take it very seriously.
The dairy reaction was a major trigger somehow.
Illness Part 5 - Panic.
For the next 6 months I would have a severe panic attack when I’d eat. I lost a significant amount of weight. I was 168lb/76kg, and I’m just under 2m tall. I was a stick.
I wrote a post about a device I’d tried to use to deal with Panic. I tried a lot of things. I still don’t have a solution in 2018. I have difficulty being in a motor vehicle or going to stores. Being in a room with musicians is hit or miss. Some things increase the likelihood of a panic attack, bu I’ll randomly have a panic attack at any time.
I would like to make it clear though: I have Panic Disorder.
I do not have Social Anxiety.
I do not have Generalized Anxiety Disorder
There is a pretty big difference, and it gets rather annoying to be told various forms of “chill out”. Panic disorder doesn’t work that way. It’s quite different from Generalized Anxiety Disorder and Social Anxiety. There’s almost no conscious component to it in some cases, like mine.
When I’m having a panic attack I can talk normally. I can reason fairly well. I can even hide it fairly well from strangers. However I still experience the deep chest pain, have dizzy spells, depersonalization (I feel like I’m watching myself exist), feel like I can’t breathe and have a general sense that something is very, very wrong. I can maintain rational control of myself, but hot damn does it feel really bad and it is completely exhausting to expend that much mental effort to convince your own brain that your body is wrong about what’s going on.
It’s very unlikely that I’ll find a sufficient treatment for this, given that it’s largely part of the autonomic nervous system failure. Sometimes my body just decides that needs to give me a big rush of adrenaline and then everything goes haywire.
Illness Part 6 - Fibromyalgia? Nah?
Pain is part of PAF. Low blood pressure and poor autonomic response causes all sorts of issues with muscles and nerve response.
For the last 2 years I’ve been experiencing significant shooting pains around my body. Sometimes they can last for a day or more.
Multiple doctors of mine say that I have Fibromyalgia, which is a way of saying “We don’t know what it is, but here’s a name for you!”. Despite that, I do experience symptoms very similar, so it’s hard for me to discount the diagnosis.
I think it’s just the natural course of PAF, but the classification of Fibromyalgia appears to be more targeted specifically for the pain experience. I can accept that Fibromyalgia is a real thing, since there’s plenty of research on it, but the broadness of the symptoms and lack of a gold standard diagnostic makes me skeptical still.
The net result though is that over the last 2 years I’ve been dealing with increased pain, and it’s to the point of overwhelming my ability to rationalize it away as something that’s not serious. There’s only so many times that you can get deep chest pain, or having your left arm go totally numb. Eventually it gets to you, and you get too stressed out to function.
I have found treatment that helps with this somewhat. I’m still working on this.
Stupid Insurance Companies
Over the last few years I’ve had to change medication regimens that were working fairly well.
Our insurance changes their formulary (list of drugs that they cover) each year. Often requiring me to change medications.
Currently I have no treatment for narcolepsy. I have been offered a heart medication that would assist with the fainting, and possibly panic, but that’s not covered currently either.
There’s 2 other treatments I could attempt, but it’d require changes of other medications which I have no alternatives for due to health insurance.
2018 has been the worst year so far for this. My current medication regimen is the least optimal that it’s ever been. That makes things a lot more difficult.
Bonus Pain - Migraines
Bouts of low blood pressure can cause migraines, which I have to deal with semi-frequently.
I’ve become somewhat adept at dealing with these, and avoiding causes of them.
Migraines suck, but I’m fairly lucky that I know the cause of mine. I can use certain strategies to lessen the length of the migraine and sometimes the severity of it.
Thankfully I have ways to deal with them. I’m glad I’m not in the group of people that have migraines which they have no control over and very little effective treatment.
What does it all mean though?!
Well, I’ve been in denial. Despite my issues I try to act like I’m fine.
I try to take care of all of the house chores. I love cleaning so I try to do all of it in the house. I try to do most of the cooking. I spend most of my day mixing/editing/recording to earn income. I push myself harder than I think the average person does.
It’s to the point where I have realized I have to stop. I’ve had to turn down work because I’m incapable of standing at my desk. I’ve sent out projects that I’m not totally happy with because I had to work through multiple random severe panic attacks. I’ve reduced my face to face interaction with people because I am clearly struggling with things (for instance, I can’t bend over to lift something or I will faint). Carrying equipment is difficult for me.
Taking narco-naps and missing calls or consult appointments sucks. I HATE it. I can not tolerate being late to anything, let alone missing an appointment.
To be honest with myself, I can’t do it anymore. I need to find another type of work to do. Maybe sampling. Maybe editing work. Maybe finding another support job with a company and work remotely. I don’t know.
But what I can’t do is continue to try and work in a traditional studio capacity.
So that’s it. I’m done hurting myself and embarrassing myself.
This isn’t a rash decision or snap decision. I’ve been dealing with this for a while as you’ve read. It’s that I’ve finally realized that I’m accelerating the negatives of my life situation and not allowing myself to fully experience the positive things that I can experience.
I’m going to throw this in here: I love testing software. It’s probably my favorite thing to do.
I currently work with a number of companies, and I will continue to do so. Analyzing software for errant behaviour is a coping mechanism I use when I have a panic attack at times. Having to logically work through a serious of defined behaviours works well.
Of course I do this when I’m feeling great too.
I also enjoy writing detailed reports and preparing demonstrations. I know it’s weird, but I enjoy it.
So it’s likely that over the next few months I’ll look to involve myself in more software testing, or attempt to find a remote position for this purpose.
Until then, I have no income except for this blog.
This won’t affect my website at all. I’ll continue writing, reviewing, working in my workshop and doing everything the same as always.
What it will affect is the context of some of my reviews, which I think will be a good thing. I won’t be constrained to working in a recording studio environment. I will have time to be more experimental and address non-traditional workflows more in depth.
I’m sharing this because this is my website, and writing this out helps me organize my thoughts a bit. It also lets my readers know what’s happening when they see future articles that reference different uses of software or how I do things.
If you have any questions or suggestions, comments are open with no registration required. My email is
audiolabs via google’s ubiquitous email service.
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