Despite being pretty certain my life wasn’t in immediate danger
physical, I was still very concerned about any vulnerability in relation to the
upcoming infusions. Luckily the EDS clinic had already referred me to an EDS
specialist cardiologist at Hamilton General Hospital. Since this was before
ketamine, my sleep was at its worst. I was unable to make the one hour drive to
Hamilton myself so I asked friends if anyone was available to take me with a
payment of $100 for their time. Someone did so and it was certainly nice to
have that company. The doctor did an Electrocardiogram and an Echocardiogram
which were clear and showed that my heart’s QT interval was fine for the time
being. Even so, EDS is still a big risk factor so he I needed to see him again
once a year. I’d still get dizzy when standing up but he told me I don’t have
Postural Orthostatic Tachycardia Syndrome. I do have something very similar
which is also associated with EDS. What this all meant is that from a
cardiology perspective I was cleared for the upcoming ketamine infusions. I was
glad I could tell all the online masses that my QT interval is fine so they can
please shut up.
Physically I was deemed as relatively safe for ketamine. Now I had to
prove that the new medication wouldn’t be liable to drive me insane (with
ketamine it happens more often than you might think.) There was a pain psychologist
that works in the pain clinic who examined all potential infusion patients for
mental instabilities. They try to determine if you’re likely to try to sell the
pills on the street, abuse them, or be driven insane by them. There was a bit
of a catch-22 for me there. They don’t want to give ketamine to someone who’s
suicidal, but the worsening pain and lack of treatment in being denied the
ketamine is exactly what would make me suicidal. I was quickly cleared from a
mental perspective as well. This was well
before I started the infusions when I was awake for insanely long but not quite
33 hours, so my mood wasn’t so bad. This was a bit fortuitous because I was
able to tell the psychologist I wasn’t suicidal without lying (I still simply didn’t
lie.) As per my honesty, I of course told her of my 2011 suicide attempts while
worrying that they would disqualify me from getting a ketamine prescription.
The important thing is that I wasn’t having strong suicidal thoughts; which was
true… at the time. My decent mood quickly changed in the month leading up to
ketamine as everything kept getting even worse than it already was.
One
day the head of the only EDS clinic in Canada messaged me saying he wanted to
see me specifically. It was mostly out of curiosity after hearing how uniquely
severe my symptoms are. When I confirmed my ridiculous dosages he was incredulous.
It led to him telling me I was a medical marvel, even among all the people he’s
seen with this rare disease. The dosages were simply unprecedented and it
shouldn’t have been physically possible for me to wake up within a day of
taking them let alone experience such soul destroying insomnia.
His
interest didn’t stop there, after he physically examined me he said my hypermobility
was especially severe and that the extreme deformity of my skin cells (seen
through biopsy) just adds to the medical marvel proclamation. He told me that
among his countless EDS patients he’s seen no one remotely comparable to me. It
makes me really wonder if there’s anyone else in the world that has comparable
symptoms (particularly the need for massive doses) and severity. If there are,
I certainly hope they live in a place that has socialized healthcare with
supportive families and friends.
Like
most of the doctors I’ve seen lately he pushed for me increasing my cannabis
dose to help reduce my other pills. I supposed I could take more oil but
couldn’t do much else to vape more at night. It’s hard for me to overstate to
these doctors how powerful my vaporizer is (the Herbalizer). Sure I only use
half a gram of weed per night but my vaporizer is so powerful it makes that
small amount last over an hour. I’ve been told it’s still the most powerful in
the world. Vaping for more than an hour at night isn’t very realistic.
During
his examination he told me my body, especially my shoulders, were incredibly
unstable. He was confused that my knees didn’t look so bad even though the back
of my knee is usually my most painful area. He didn’t find much that could
adequately explain my leg pain and would have thought my pain would be worse in
my upper body instead of legs based on the examination. This lends credence to
the theory that much of EDS pain is a result of micro-tears in the joints; it’s
not really something you can see with the naked eye.
He
agreed with me that my pain doesn’t present as neurological and warmed me that
ketamine is mostly effective for neurological pain. He also apologized to me,
saying the clinic wasn’t well set up when I first went there immediately after
it opened. They just gave me several referrals instead of helping at the clinic
itself. None of the referrals were even true EDS specialists, just assorted
doctors who are aware EDS exists. He sent me to that actual EDS specialist
cardiologist and said if he could ever help me with anything I should let him
know. At the time there was not much point to a follow up appointment.
The
sweat allergy was turning into something even more painful than my legs. I had
to resort to walking around my house in boxers carrying a mini fan with me
everywhere. To help with this we started looking into getting a personalized
air conditioner for my room. I had wondered if my pills were involved in this
but knew even if they were there wasn’t much I could do about it because my
insomnia had never been worse too. Imagine having the stark choice of choosing
between extreme insomnia or an extreme allergy to your own sweat. Look at the
picture below; each read dot feels like a severely painful wasp sting. My dad would
be forced to helplessly watch me writhe in pain. I’d be having a conversation
with him and then would suddenly need to strip and hurry outside where it was
cooler. I took the allergy pills but they take time to kick in so that was one
of the most painful 15 minutes of my life. My allergist wondered if it could be
caused by my sweat pores being
blocked so he got me an appointment to get a
diagnostic skin biopsy.
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