Ketamine Preparation

          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.

Death and Despair

              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.

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