Disintegrating Trust

    Anyone who has read my most recent blog post about dealing with almost unprecedented levels of insomnia (link below if you haven’t) knows I like to inject both silly and morbid humour in my blog, the trauma and indignant anger I continue to attempt to deal with when thinking about what happened to me in August 2021 may preclude similar levels of comedy here. I had no warnings and therefore no chance to avoid the catastrophe that I am now finally ready to describe. Although it took months to fully process what happened to me, the other significant issue is that since and as a result of the aforementioned disaster, I have usually not been sleeping well enough to write this blog at a quality that I find acceptable. Sleep Blog Link

    It was a perfect storm of a flawed medical system that allows unconventional patients slip through the cracks, the PTSD I deal with that will clearly never fully heal, and even just plain old bad luck. I was working with the inadequate medical information I was given, and this was hardly the first time that problem has become truly dangerous. My longtime readers may recall my brief 2015 blog post about being afflicted with Serotonin Syndrome; an extremely unpleasant and life threatening medication interaction that if ignored will cause you terrible pain, literally drive you insane due to serotonin overdose in the brain, and then can ultimately kill you. You can read that very short blog post here

    I had to figure out what was going on myself as just a teenager because I had no warning about that interaction potentially happening when there are too many doctors prescribing serotonin medications at the same time with and no communication with each other. You’d think they would have learned their lesson after nearly killing me, but they clearly didn’t given that the same thing happened 2 years later with a different medication combination. My point is that I’ve had to be my own advocate from the very beginning for my own safety. If I didn’t memorize my medication names and dosages while constantly monitoring changes in my physical symptoms and mental state, I could have died due to the mistakes of my many doctors. That concept brings me back to August, where events conspired to cause life changing repercussions that have yet to be solved.

    It began with unexplained nausea. My appetite was low, and so I assumed I was getting sick. It quickly became clear that that was not the issue, so we then theorized that us raising my Dayvigo medication dose from 10mg to 15mg was causing the side effects. Confusingly, even when I lowered the dose the nausea rapidly worsened over a 3 week period to the point where it was far too severe to be explained by a small dosage change. For the past 7 years I had a tried and true method for alleviating any significant on and off nausea: my cannabis prescription. It is pretty common knowledge that cannabis is a safe and effective treatment for nausea. After all, that is why it’s frequently prescribed to chemotherapy patients. If only I had been adequately warned that in extremely rare circumstances this is a misconception… If I had been cautioned appropriately the following events could have been avoided. And if I have learned anything in my life it is that my body gets a kick out of being the rare exception to many general rules.

    Treating my nausea with even more cannabis than I already typically used was one of the biggest mistakes I have ever made in my entire life and a key component of the aforementioned “perfect storm.” Another factor was my PTSD that developed from not being believed for the first 4 years after my chronic illness truly manifested in 2009. The reality of invisible illness is it takes a lot of convincing for people to even consider believing you’re sick to the extent that you claim. To avoid dealing with any accusations of laziness I have pushed myself incredibly hard to achieve some ambitious goals despite frequent and unpredictable medical crises. Frankly, as the August events have proven, it has always been too hard. Graduating from university and attending law school were sensible goals when working under the false assumption that my health would improve over time with new treatments rather than drastically worsen because of complications with those very same treatments I relied on.

    If I had set realistic goals for myself and didn’t hate myself for every setback, I would have cancelled the August ketamine infusion appointment because of the worsening nausea. I didn’t, because I was desperate. Desperate to have a successful imminent Fall university semester. Desperate to at least temporarily improve my insomnia well enough to go on dates in between semesters with the seemingly understanding girls I was having pleasant chats with on dating apps. I felt pressed for time; I needed the infusion before the September semester began. To make matters worse, my random and uncontrollable sleep schedule unluckily did not sync up with the infusion appointment. I was so determined to have this infusion I spent three days painstakingly shifting my sleep schedule by not using any of my sleeping and pain medications even after I had been awake 36+ hours. Without those meds, I would only sleep for a maximum of 3 hours despite the indescribable exhaustion, all because of my terrible chronic pain (and a possible circadian rhythm disorder we’re still investigating). After such measly naps I would wake up and stay horribly uncomfortably awake for 8 more hours and repeat this process until my schedule shifted enough to be awake for my infusion appointment. Of course there was terrible withdrawal due to going cold turkey with my massive doses of over a dozen medications to top it all off, not to mention the worsening unexplained nausea.

    I fell victim to the sunken cost fallacy. The practical desperation of harming my ambitious goals, the mental PTSD, the fact that I didn’t want to cancel and therefore make my 3 days of incredible suffering pointless… and most of all, the lack of any warning from my doctors that what happened next could ever occur in the first place! I did succeed in shifting my sleep schedule, though in hindsight I wish I hadn’t. My dad drove me to the 7 am appointment at the ketamine clinic, and while in the car I complained about my nausea and said “I don’t feel 100%, but I can’t cancel this infusion. I just can’t.” I wish my nausea was even worse so I wouldn’t have even dared to leave the house. It was most certainly significant, but by this point I had plenty worse in the past (cold turkey morphine withdrawal for instance). It simply wasn’t enough to give up on taking my usual 3 courses throughout the upcoming semester. Until it was.

Minutes before disaster 

The ketamine infusion began as it always had, and you can read about my first blog post describing them here

    By this time my infusion doses were massive due to my body’s trouble with metabolizing virtually all medications, and that was part of the problem and will be discussed later. Those close to me knew how desperate I was for this long overdue treatment so I sent them the above picture with the caption: “Gobbled the pre-infusion sedatives like candy, see you on the other side!” This demonstrated that despite my extreme exhaustion, I went into the procedure with good humour and hope and it didn’t take much for the sedatives to knock me out this time. That was the biggest problem of all. Even under completely normal circumstances, half the time such high ketamine doses will make you vomit, usually after you arrive back home and move around again. The exhaustion from needing to shift my sleep schedule meant that the administered sedatives were highly effective. The ketamine infusion exacerbated whatever was causing my chronic and worsening nausea which caused me to experience incredibly violent, painful and also extremely dangerous bouts of vomiting, given that I was unconscious.

    Dying due to choking on my own vomit was a very real possibility, especially since this was taking place at a small clinic, not a hospital. All four nurses at the clinic became fully focused on preventing my death. This was not normal vomiting that you get when you drink too much at a party; it was an extremely severe case of hyperemesis that I had never experienced before or even knew existed. Although I have no memory of it, I was told that I was screaming and thrashing in my bed while throwing up on everything and everyone around me, like something out of a horror movie. The nurses could only try to restrain me enough not to hurt both myself and them. By the time I woke up the imminent danger had passed although my intense vomiting certainly hadn’t, and the nurses were not pleased.

    We were still under the assumption that the ketamine itself was the primary causal issue. One nurse even said “Mitch can you throw up more quietly? You’re disturbing the other patients.” Then the doctor arrived and threatened to permanently kick me out the clinic due to the danger I had been in. By the time I got home the vomiting and resulting abdominal pain had only worsened. Worse yet, my 3 days of suffering were not just pointless but counterproductive, given that my decision to push myself too hard and not cancel the infusion may result in me getting permanently kicked out of the only clinic willing to give me the high doses of intravenous ketamine I need to function. My plans for the next semester and dating apps were in tatters. I wanted to succeed with those endeavors so badly that my actions to make them work ensured their failure. It was simultaneously one of the most physically and emotionally painful days of my entire 26 year life. I had only an hour to contemplate my catastrophic mistakes because instead of improving as I recovered from the large ketamine dose I continually got worse and by this point we still had no explanation for the nausea that started off so mildly weeks ago.

    To convey my mental and physical state by the time I returned home from the infusion I will copy/paste the update I sent to friends and family back in the middle of this:

    “I am shell shocked. The infusion didn’t work, I was too nauseous from whatever has been destroying me these past 2 weeks even though they only got up to a half dose of ketamine. The experience was so bad for me and the team of nurses working on me that they threatened to discharge me back to a downtown hospital (my previous lower dosed infusion location.) I assured them it wouldn’t happen again and we’ll do another infusion only after I’ve dealt with whatever is making me nauseous. This was one of the worst experiences of my life, even if you don’t count the last few days leading up to it. I should be angry or sad. I’m just numb. Complete mental and physical shock. I haven’t eaten or drank anything since midnight and I’m still puking huge amounts of bile even though they kept telling me about the insane amount of anti-nausea medications they were giving me. I was in so much discomfort I was thrashing on the bed with several nurses all trying to manage me like something out of a horror movie. I threw up over all of them, loudly, violently. They were so rattled that, like I said, the doctor threatened to kick me out back to the downtown hospital infusion clinic. Which would be terrible, this clinic is 10 minutes away from home and I have to be there at 7 am. The hospital one is [50 minutes away] downtown. I assured them this one won’t happen again, we’re going to follow up soon and then I’m going to find out the fucking cause of this fucking 2 week incessant nausea and excise it from my life so I can go get another infusion. The 4 dates I had planned for once I got through this infusion? Fuck that, they’ll still be there when I’m recovered or they won’t. Step one is stopping to take the increased dose of that new sleeping pill. This almost seems too severe for that to be the cause, but I’ll stop it anyway and if nothing happens I go see my doctor and get this sorted. This is the consequence of trying too hard for too long, I bit off more than I could chew. It doesn’t matter what physical discomforts I can overcome mentally if I have to fight my body every step of the way. For now, I’m done. I need a break. I need to heal. So much suffering and all I accomplished was almost getting kicked out of the clinic. Still need another infusion… Ah, numbness is receding. Here comes the emotional breakdown. Pointless extreme suffering is not something I can handle.” Imagine pushing yourself to endure some of the worst suffering of your life to get a treatment you need to catch up with school and graduate like your able-bodied friends, and somehow all you accomplish is having the clinic threaten to kick you out because you could have died under their supervision.

    I still have a 14 second video of that emotional breakdown, and it’s been quite the dilemma on if I should include the video in this blog post. I asked a couple family members to weigh in and they said I probably shouldn’t because even some of my closest friends couldn’t bring themselves to watch and see me more distraught than they had ever seen with their own eyes before. I can at least articulate what I said in the video in which I broke down in tears: “It’s not fair. It’s not fair. I tried so hard to make this [infusion appointment] happen, and it blew up in my face!”

    My friends and family were of course extremely concerned about me given my messages and the video. I began to regain my composure enough to frequently reply with dark humour throughout my assurances I wasn’t suicidal again. If I can retain at least a morbid sense of humour, it’s a good indication that I’m very upset but not actively suicidal. I told them “Don’t worry, even if I wanted to kill myself [right now] I’d just throw up my pills five seconds after taking them. And I wouldn’t use pills again anyway; it’s not fair to the doctors who prescribe them.” By this point the doctors in my family were all in agreement it was well past time to go to the emergency room. My dad drove me over while I was in contact with the other two doctor relatives to speculate at a diagnosis to explain what was happening. There was no shortage of suggestions: Appendicitis, cholecystitis, small bowel obstruction, pancreatitis, severe gastroparesis, or complications from my many previous hernias. None of these were correct and due to my condition continuing to worsen rather than improve, I had to stay at the hospital overnight without any answers.

    Due to being unable to eat or drink for so long and unabated vomiting continuously draining my fluids I was extremely dehydrated by the time I arrived at the hospital which would have become dangerous without the continuous IV fluids I received there. Tests showed I had an elevated white cell count due to the unsurprisingly high level of stress I was under. A normal white blood cell count is between 4,500 to 11,000 while my count was 27,000! The anti-nausea medications I was given weren’t helping in the slightest. A negative CT-scan meant I had no intestinal blockage but the scan did show that my lungs were very irritated so we got a Covid test that was also negative.

    We later realized my lungs were abnormal because the persistent vomiting meant some of it was getting into my lungs! My dad stayed with me until midnight and even as a doctor himself he was incredulous that my body was still finding things to throw up given, by that point, I had eaten nothing for 24 hours. I was filling the container they gave me full of bile at an alarming rate for the majority of my hospital stay. No exaggeration, I’d say I threw up 90 times over the span of a few days. A decent sleep was out of the question both because of the pain and because if I took my usual dosages I would either throw up the medication or be too sedated to see the doctor the next morning. Not to mention there wasn’t space to give me a real room; I had to stay in the emergency room with tons of loud beeping machines next-door to an elderly patient with dementia who wouldn’t stop screaming “Someone help me! Please help me!” for hours at a time. The staff all ignored her because there was nothing she really needed help with, she was just scared and confused.

    It wasn’t until the next morning that I received a diagnosis that was equally astounding and infuriating to explain the last 2 weeks of hell. In the past, I have frequently described how I credit the THC medical marijuana prescription I received in 2014 for getting my life relatively back on track. The instant the prescription reached an effective dose to help increase my sleep quality I rapidly went from a seemingly hopeless high school dropout, to an honour roll graduate and high achieving student at the University of Guelph. Anyone close to me that was skeptical about the notion of giving a 19 year old dropout easy access to weed threw their concerns out the window when they saw my life positively change to such an incredible degree. Sure, maybe it caused memory issues to use it every night so my pain level could be reduced enough to sleep, but that didn’t stop me from working hard enough to achieve a near 86 GPA. We were told it’s not ideal to prescribe daily cannabis use for someone under 25 since the brain is still developing. Unfortunately, it was either that or accept the damage caused by ridiculous levels of chronic sleep deprivation, more dangerous medications, and even the higher risk of suicide. In general, however, we viewed it as perfectly safe because that’s what both general public knowledge and the specialists we relied on led us to believe. And yet the day after checking into the emergency room I was given a conclusive diagnosis of Cannabis Hyperemesis Syndrome (CHS), which goes to show how wrong we were. Link to info on this rare complication here

    The truth was out; it was my frequent cannabis use that was causing my nausea the whole time! I was using even more cannabis than I normally did to treat the nausea the cannabis was causing! I had zero issues from my cannabis prescription aside from perhaps memory loss for 7 years. Now suddenly it was shutting down my digestive system! Only daily use for many years can lead to this, and even so it’s incredibly rare to occur at all and rarer still to be so severe. Typical anti-nausea meds do not help with this syndrome but they gave them to me anyway along with potassium pills because excessive vomiting also caused my levels to be alarmingly low. This condition is very under-researched and so we had no idea if I could ever use cannabis again which I was utterly dependent on to sleep well enough to function in any capacity. Why did none of my countless doctors, two of whom were cannabis specialists, ever warn me that this can potentially happen from long term daily cannabis use? I understand that it’s impractical to warn every patient about all the extremely unlikely side effects/interactions occurring, so I put more blame on the system than the doctors themselves. Let’s use the cannabis issue as an example. When a doctor prescribes it to be used every day for potentially the rest of the patient’s life, the pamphlet they give to their patient, containing basic info should include an online link to a page that describes the potential rare complications from long term cannabis use. That way if the rare dangerous scenarios do occur, the patient won’t make it even worse and will temporarily cease using cannabis when nauseous instead of using more. 

    More frustration came from how not long after I was informed that another reason the infusion was such a disaster is that I had no tolerance built up to ketamine by August. My original ketamine specialist who referred me to this newer clinic had told me I need to minimize my ketamine usage or else in the long term it can result in permanent brain damage. This of course greatly concerned me, so when he said to stop using my ketamine nasal spray medication I did so with great difficulty in the middle of a tough semester. I was allowed to get infusions once every 3 months, but to minimize my ketamine intake I waited 5 months. The unfortunate consequence is that I had no tolerance to ketamine left by the time of the August infusion, which the newer ketamine specialist said (unhelpfully after the fact) was yet another reason why the high-dosed infusion was such a disaster. Talk about conflicting information! One doctor said to minimize ketamine as much as possible, while the other says I need to have some in my system for the infusions to be accepted by my body. Why is it such a common theme for me not to be given the crucial medical information I need to prevent myself from either dying or losing all of my functioning again? It gets even worse, because, despite these occurrences not being mostly my fault (I do share some blame for not cancelling the infusion out of an abundance of caution when feeling nauseous) and that it was obvious this nightmare scenario wouldn’t happen again, they did in fact permanently kick me out of the ketamine clinic! They said given the significant risk of death during that fateful infusion I need to get my infusions done at a hospital rather than a clinic for my own safety. There are several problems with this.

    Firstly, the hospitals are 50 minutes away from where I live and I need to arrive there at 7 am. With my extremely unpredictable and uncontrollable sleep schedule issues, pulling this off is a nightmare. Additionally, only this specific clinic was willing to give me the ketamine doses I need for any true benefit from the infusion. I had plenty of infusions at that high dose in the same clinic that proceeded perfectly smoothly; there were several onetime events all peaking at the same time to ruin the most recent infusion. And most important of all, that hospital isn’t doing infusions anymore during the pandemic because of numerous Covid outbreaks at the hospital anyway! The doctors in my family tried to convince the doctor running the ketamine clinic that kicking me out does not make sense. We even had the ketamine psychotherapist that works in the clinic (they find therapy sessions are more effective when done simultaneously with an infusion) argue my case but it was all to no avail. The decision to ban me forever was final and handled in such a terrible way too.

    After my CHS diagnosis explained what primarily went wrong with the infusion, I was assured that they understood this multi-faceted scenario would not be repeated and so they would call me in a few days to book my next appointment. As such, when they did call, I was excited to answer and hear when I could get another shot at my badly needed infusion. Instead, they said I’m not allowed back. To add insult to injury, the doctor who made this decision didn’t even call me himself to break the news. He assigned one of his staff members who had no involvement with banning me to pass on the message. They did not bother to explain to me why I was initially given false assurances that I could continue treatments at the clinic.

    Amidst perhaps the worst physical medical crisis of my life, this news was a massive psychological burden. I had now perhaps permanently lost access to my two most important medications, cannabis and ketamine. I was left with no choice but to put university on hold indefinitely when I had only 9 courses left to graduate after 6 years of struggle. Without those treatments I couldn’t sleep well enough to concentrate on a simple recreational book, let alone a university course textbook. It’s now five months later and I have still yet to come close to my previous level of functioning. It’s hard not to feel like I wasted the past 6 years since beginning my classes. Managing a chronic illness that limits mobility while away at university isn’t exactly easy. Although I’m awake 36 hours every day it’s not like I can work productively for even a majority of those hours, not to mention then sleeping for 20 hours each night. Under such conditions, getting high grades with 3 courses each semester is hardly a cakewalk. My only imminent hope is that the efforts to diagnose and treat the circadian rhythm disorder discussed in my last blog post titled “Dreaming of Sleep” works out, which is still a very big ‘if’ as we wait for my various obscure sleep test results.

    To recap, I used cannabis to treat nausea caused by cannabis because no one warned me about this when it was prescribed to me in 2014 or anytime in the 7 years after. I got conflicting information about how to safely use ketamine from my other doctors. We don’t know who gave me incorrect or misleading advice, but it could have gotten me killed during the infusion. Yet their response was to ban me from the clinic forever for no good reason given the implausibility of the unique dangerous scenario reoccurring, while handling this decision in the worst possible manner, thus crushing my hopes of finishing the last of my university courses anytime soon or maybe ever. My trust in those meant to care for me has now been dealt a grievous blow, hence the “Disintegrating Trust” title of this post. When I first entered the emergency room, I was wallowing in total despair which if you know my history wasn’t the first time, but by the time I left I was trying to manage the worst righteous rage I had ever experienced in my entire life. The drastic shift in emotions and how I dealt with them will be explored in the next blog post!