In the end the original ketamine clinic wrung their hands of
me and referred me to the more intense location at Toronto Western Hospital. I'm pretty used to doctors giving me up and sending me to someone else at this point. After I advocated for a pill prescription to replace the infusions they
discussed my case and decided against trying pills. I was told they had very
little experience with the pills specifically so I hope it wasn’t just
reluctance to give a young man with an invisible disability pills that could be
sold on the street or abused. Instead they were willing to refer me to a place
that does higher-dosed IV infusions and had prescribed pills in the past
(rarely.)
Before I could begin the infusions I
needed to jump through some hoops to confirm that they should, in theory, be
safe for me. The most important obstacle was my heart. We aren’t particularly
worried about me having the life-threatening Vascular Ehlers Danlos Syndrome
but that doesn’t mean I’m not at risk for severe heart issues. My crazy pill
dosages can interact with my body’s already present vulnerabilities to cause
serious problems. Quetiapine in particular, my highest dosed medication, can
interfere with the heart’s QT-intervals. My cardiologist brother told me: “QT
interval prolongation is concerning for possible sudden cardiac death. But so
long as your ECG is monitored and caution is taken with any other QT prolonging
agents, it can be OK.”
I am part of many different
chronic pain and EDS groups online, mostly via Facebook and Reddit. Whenever my
Quetiapine dosage would come up in a discussion a dozen people would pounce on
me, emphatically insisting that my death is inevitable at that dose. I get
that they think they’re saving a life by yelling at me but if they think they
know better than my many doctors then they’re misguided. My main sleep doctor
who writes these crazy prescriptions is certain that I simply don’t absorb the
meds properly which would explain why in subsequent QT interval tests my heart
was fine. I’ve been taking these dosages for many years and am not dead yet or even
had any heart issues aside from pulmonary effusions and chest pain easily
attributed to meds and costochondritis inflammation.
In these groups I also found out
that many EDSers have also had a weird occurrence that had been bothering me.
It only happens at night when I’m trying to sleep. I’d often be lying down and
get what feels like a sudden full body electric shock. All my muscles would
contract for half a second as if I had been struck by very mild lightning. It’s
almost like a surge that is most powerful running along my spine. My fellow
EDSers all seem to think it’s related to their medication. It certainly seems
possible. Below is an example of dozens of similar messages I’d been getting.
At
that point almost every day for the past year had been noticeably worse than
the previous one. I kept being unable to sleep for longer and longer periods and
so we kept raising my sleeping pill dosages to compensate. This made my chronic
brain fog even worse and some of the side effects were becoming unbearable. I would
be unwillingly awake for up to 33 hours at a time even with copious amounts of
sleeping pills. Then I’d sleep up to 18 hours to compensate. This made
functioning entirely impossible. I can only be productive for the first 12
hours on a “good” day (which were becoming rarer and rarer) and then I get
exhausted and all I want to do is sleep. We’re all aware that chronic sleep
deprivation inevitably leads to viral sickness. Unfortunately for me, I didn’t
simply have to deal with my pain and illness symptoms at the time same time.
Being sick actually makes my leg pain worse. That’d make me take even longer to
fall asleep than I already was which of course just made me sicker and
prevented me from healing. As a result, towards the last weeks leading up to
the infusions, I was sick 90% of the time.
I
think this makes it easy to see why my course load dropped each semester as
this trend progressed. By the end of the 2017-2018 semester I could barely
handle taking one course, and I only managed that because it was an online
course. Going to lectures regularly with that level of insomnia and sweat
allergy would be almost literally impossible. At the very least I’d wish you good
luck with absorbing any of the information. Faced with the likely possibility
of having to drop out of university entirely, my mood suffered along with my
physical health. My attempts to nap were often thwarted because I still had the
weird symptom of my eyes twitching uncontrollably whenever I close them. It
seems solely sleeping pills can make them temporarily stop and taking pills
before a nap is a bad idea. Even after
getting a rare good sleep in, it would be difficult to stay positive when you
know you are getting less and less of those every week.
It’s
hard enough to stay positive when you have only a tiny amount of energy for several
hours after waking up. Now picture trying to stay positive when you’ve been forcibly
awake for 32 hours, you’re sick like a dog, you aren’t thinking clearly from
too many sleeping pills, and you’re still
lying in bed awake for hours. It’s pretty easy to start losing your fucking
mind by that point. In 2017 this happened once a month. In early 2018 it
progressed to once a week. In mid-2018 it started happening every day. The
longer I was awake, the worse the pain got. The longer I was sick, the more I
started thinking about how much easier being dead would be. I was plagued with
guilt for those who loved me having to see me this way but also knew another
suicide attempt would be even more horrible for everyone I care about.
After month after month of this with no relief
in sight (the original ketamine infusions were useless and they wouldn’t let me
try pills) I moved on to pondering alternative suicide methods. This was not
because I was imminently going to try something. It was actually a sort of
comfort mechanism to have “a way out” nestled in my mind. I never started
making actual plans for it again, but I knew if I ever did decide to move
forward that pills were an unacceptable option. It’s not fair to betray the
doctors who tried to help me function by giving me the pills I’d requested in
that way. That’s exactly what I did in 2010/11 when I was 15 but I’m obviously
a different person now with a stricter moral code. During this period I’d
usually cry until finally falling asleep. While lying awake in bed I’d keep
telling myself that amputating my legs is a better last resort than suicide.
In
my research online I saw that lots of people with Complex Regional Pain Syndrome
have done amputation with great success. I even found someone with EDS who amputated
their foot which worked amazingly well for them. If I ever got to that point I
could start with up to the knee to make sure it removes the pain (phantom pain
would be awful.) Every night this cycle would repeat and then I’d
wake up from a sleep-in and cease all suicidal ideation. It’s like I said, you
need sleep to stay sane. I told my family if ketamine didn’t work I’d seek out
a psychologist (which has never been helpful in the past) not because I think
it’d work but because I didn’t know what else I could possibly do to prevent
harming myself.
The ketamine infusion hadn’t been booked yet
by this point so we simultaneously pursued other avenues. My sleep doctor
decided to send me to an anesthetist-turned cannabis doctor colleague who was
apparently willing to at least consider prescribing ketamine pills. Perhaps
there was some sort of miscommunication because when I arrived the doctor
proclaimed that she thinks all forms of ketamine are dangerous, especially for
people with EDS. She said it may help at first but that you crash when it wears
off. It will cause withdrawal and is unpredictable, unlike cannabis. Furthermore,
it can mess with both your adrenaline and your heart. She mused that my unique
biology could make me tolerate it well like all my other insanely dosed meds
but that we can’t know for sure. Instead, she wanted me to double down on THC
and CBD in several forms.
In my
mind the main reason I went to see her was for a potential ketamine pill
prescription so I was devastated when she told me this. I’d have to keep being patient
and continue pursuing the infusion route at Toronto Western Hospital. My dad
and I agreed that if the new cannabis doctor’s special strains don’t help
enough then we’d go for ketamine anyway out of desperation. It certainly beats
opting for amputation or even suicide.
She
replaced my old cannabis prescriptions but the real change was her encouraging me
to vape THC and use CBD oil throughout the day. My original cannabis doctor was
very conservative and was worried about weed interfering with brain development
for young people like myself. I really wanted to avoid being high throughout
the day but was told CBD can help remove the high without stopping pain relief.
I told her I’d try it out, though I was frustrated because I wanted there to be
more focus on fixing my insomnia. I can mostly handle my daytime pain if I just
get a half-decent night’s sleep. She also thought that my annoying and embarrassing
tendency to forget what I was talking about mid-conversation was as a result of
my other many meds, not the weed like I had assumed.
I
was told to use a phone app to track my use of the different strains I’d been
prescribed because suddenly I went from having access to one high quality strain
to half a dozen. Interestingly, this doctor was spiritual and would experiment
their prescriptions on themselves so her knowledge was unparalleled. She initially
wanted me to lower my quetiapine dose while starting the new marijuana but when
I shed tears while explaining how unlivable my insomnia had gotten she quickly
changed her mind and decided I should just switch weed strains for now. Even
after all that she still agreed with me that I was miserable, not depressed.
