The Aftermath of Ketamine

    Before I left the hospital following the infusions they set up an appointment with their pain psychologist to take place ASAP. I thought this meant I’d be following up with the lady I had seen to mentally clear me before the infusions took place. It made sense that they’d want to check up on me to make sure the mind-bending effects of the ketamine hadn’t driven me crazy. When I arrived I met an entirely new person who they also referred to as a “pain psychologist,” but the reality was quite different. She explained that she actually doesn’t deal with mental health at all. Her purpose is to advise me in figuring out how to make the most out of functioning in my new and improved situation. So, in actuality, she’s more like a pain counselor. I see the merit in this profession but did not at all view it as something I could really make use of. After 9 years of trying to cope with constant pain I’ve figured out my own limits with constant optimization improvements. I don’t need a professional’s help in this regard, maybe if I could have seen someone similar in the year or two after my pain started it could have been helpful, but no longer.

                I explained all of this to her in the span of about 5 minutes. She then told me that in that case we don’t really have much to discuss and so I went on my way. All of this pissed me off quite a bit. Keep in mind this is at Toronto Western Hospital, it takes up an entire day for me to get there from my house and back again. Luckily my mom was heading to work at Queen’s Park so I just got a ride with her. I would have been even angrier if I expended my leg pain threshold on navigating the subway for no good reason. Why didn’t they just call me and ask if I was interested in pain counselling so I didn’t have to go all the way downtown to have a pointless 5 minute conversation? Plus, they really should call her a pain counselor, not a pain psychologist. I’ve never heard of a psychologist with zero focus on mental health.

      The counselor was present when I next went to the hospital to see the ketamine doctor again as follow-up to the infusions. My primary doctor, the sleep specialist that had managed my prescriptions for many years, was extremely excited to hear I finally was able to reduce my dosages by half across the board. He shared my concerns that I would relapse if the ketamine was stopped and so messaged the ketamine doctor to help advocate for a refill for the long term. My dad cancelled work that afternoon so he could come with me. We discussed strategy because in our minds the main goal was to convince the doctor to extend the ketamine pill prescription to the long term.

               We were unsuccessful, but for good reason. The doctor explained that there have been studies on rats who were given ketamine long term. They ended up developing cognitive and memory issues, and this hasn’t yet been repeated with humans. What we found out was that he expects me to retain much of the ketamine benefits, even after stopping the pills. Part of the reason for this is that the ketamine was meant to reset my overcharged nervous system. For most people the infusions are enough and for others the pills are enough but there are very few instances of neither working in the long term. This was good to hear but I was still nervous that the doctor was underestimating the severity of my medication absorption issues since he had only met me once before and was not an EDS specialist.

             For a long time my leg pain would get worse when I needed to go to the bathroom which made me suspect there was compression on a sacral nerve. That problem disappeared with the ketamine which is best at treating neurological pain. I do think my nerve issues were reset with the infusions but EDS mainly causes issues with your muscles and joints. This means that over time my legs will keep re-injuring themselves, which will eventually again overcharge my nerves. This why my friends with EDS are having the exact same ketamine experiences as I did. The pain is gone during the infusions but quickly comes back because of our chronically damaged bodies.

    The counselor sat in on the appointment with the ketamine doctor so I again explained to her that I’ve worked with psychologists before and they’d play the soothing sounds of waves on a beach and told me to imagine myself on that beach. I would do so but it didn’t help in any way because I was just on a beach in horrible pain. The counselor then suggested trying hypnosis. I hadn’t tried that before so was willing to give it a shot while at the same time throwing the counselor/doctor a bone. We actually did a session then and there. She played soothing sounds while talking to me in that stereotypical monotone hypnosis voice. It did make me pretty relaxed but had no effect on my pain. She gave me a YouTube video so I could try it myself before bed that night and I did so.

            This time it went badly, first of all my ongoing issue of involuntary eye twitching (when they are closed) was an impediment since it was particularly worse that initial afternoon. The other issue was that the whole point of this was to help me sleep at night. When I’m finally getting exhausted enough to sleep through the pain I need constant distraction from how shitty I feel; so I typically read a book while vaping. When I can’t read anymore I try to go to bed. When trying hypnosis with my eyes heavily twitching all I can focus on is that and the pain made worse from fatigue. It’s quite counterproductive when you’re attempting to sleep. I promised the doctor I’d try a couple more sessions on the condition we did it online instead of in-person at the downtown hospital. I’ll do that and do all I can to make it work but have not had a great start.

The ketamine doctor wanted me to start stopping the ketamine pills one month after I last saw him. I decided to stop the pills now because if everything starts turning to shit again I wanted to know that ASAP so we could start dealing with it before the next university semester starts in September. As of writing this I have been taking the ketamine pills on and off for weeks. It's hard to gauge their effectiveness but things didn’t immediately fully relapse with the reduced dose. Unfortunately they certainly weren’t as good as those first few days after getting home from the infusions. (I think the infusions did have more of an effect than I realized, which continues to wear off.) Instead of my sleep problems being 10/10 horrible like a couple of months ago they’re now just 9/10. The ridiculous sleep pattern issues are still present. Every time I let myself sleep-in to function my sleep clock still gets immediately destroyed, just to a lesser extent.

On a Sunday I had a driving lesson so I slept in for 12 hours, going to bed at 11 pm and waking up at noon. Then on Monday, as a consequence of sleeping in, I couldn’t fall asleep until 6 am. This means my clock moved 7 hours later just from not setting an alarm for a single day. The next day it got even worse and I fell asleep at 9 am, forcing myself up at 3 pm to fix the clock in time for my appointment. 3 pm was still too late so the next night I only let myself get 4 hours of sleep, waking up at 2:30 am. This allowed me to get to the appointment but today I have another driving lesson so to make up the sleep debt I slept almost 13 and a half hours which means tomorrow the sleep cycle will be completely ruined yet again and will take days to re-fix.

This pattern just repeats over and over and it's going to make taking non-online courses at Guelph very difficult because to absorb the info in lectures I need to sleep-in while still waking up on time for the class. If I have at least one class every day of the week then weekends become my only opportunity for reset days. If I'm setting alarms every weekday to get to the lectures on time then I'll often be too tired to actually learn anything. My sleep doctor says we need to find an EDS pain specialist because there won't be any more improvement until the pain is truly helped long term. To that end, he thinks we should redouble our efforts to see the EDS/sleep/pain specialist in Washington DC. I’ve been on his wait-list for 3 years and he’s still not accepting new patients. He’s also quite expensive but if he has new ideas they’re without a doubt worth trying. I also need to find an EDS specialist who knows a lot about quetiapine so I can ask about what to do in a worst case scenario. We need to know if the effects of long-term ketamine are scarier than the effects of long term quetiapine overdose and sleep deprivation. We may need to look out of the country more. The UK is famous for its top of the line EDS specialists. If only travelling was easier for me…

I have no idea if it was related to ketamine in anyway but I did experience something new that’s very scary for first-timers: sleep paralysis. For myself and many other people this is often tied into nightmares. My medications prevent me from dreaming but maybe this occurred due to the lower dose… or maybe just the ketamine itself. I don’t think I was fully asleep by that point, it kind of reminded me of the sensation I got during the infusions where I was half asleep having strange nightmarish dreams. I think I was having a nightmare and somehow half waking up from it kept me paralyzed as if I was still sleeping.

 I only remembered the tail end of the dream. It was something about the government not wanting me to find out about a secret newly developed medication. Whenever I tried to think about the secret I’d hear an incredibly high pitched screech that made me think they had a device on me that screamed at and immobilized me whenever I disobeyed. I could only vainly try to shout for help until it passed and I fully woke up. I didn’t really understand what had happened and so was pretty terrified but now that I’ve heard about it from others I think I’ll be fine if it happens again. When it happens for the first time your mind naturally begins to wonder if the paralysis will every go away.

While all this was going on I got a message from Student Accessibility Services (SAS) at Guelph University, inviting me to come at the end of the summer to be on a panel to help incoming disabled students adjust to university life. I would be giving advice and answering any questions they may have. SAS have been a huge help to me so I’m very happy to return the favour. I messaged the friends I made from the chronic pain support group about it and both are interested in joining me on the panel. Worst case scenario, if I don’t sleep well enough to drive to Guelph I’ll be Skyping in to the event.

I have enough uncontrollable medical issues, but on occasion I unintentionally create more for myself. One example stemmed from my daily use of Q-tips for ear cleaning. Whenever I go for a week or two without doing these my ears get blocked and have to be annoyingly rinsed out. You pretty much need to be standing to effectively do that so I put extra effort into avoiding that situation.  I’ve done this for as long as I can remember with no issues, but I suppose it was only a matter of time until carelessness created problems. The only reason this became an issue now was actually my ketamine infusions. Showering with the IV block still in was difficult and so I didn’t bring Q-tips with me downtown. This meant I went quite awhile without cleaning my ears and, like I mentioned, both my ears got blocked.

 In my efforts to unblock them after I got home I pushed the cotton swab too far and it hit my eardrum. I suddenly couldn’t hear anything out of that ear, and it caused bursts of pain every few seconds. There was an extremely loud constant buzzing noise. I was very worried I had ruptured my eardrum. When that does happen immediate medical attention is important to prevent permanent hearing loss. My dad looked inside my ear and it was so blocked he couldn’t see the eardrum. Even after my parents helped me rinse the ears with dissolving oil and water syringes I couldn’t hear anything at all out of that ear but my dad did see the eardrum a bit and didn’t see obvious damage. We needed to be sure as well as fix my hearing so off to the doctor I went.

The first order of business was cleaning the ear. First the doctor tried scraping it out, which wasn’t very pleasant. Then he told me there’s still tons of wax stuck to my eardrum so he used a mini vacuum to get it out, which was even less pleasant. It felt like someone was scraping my eardrum with a knife over and over for quite a while. He said that he suspects my EDS made the pain worse than it otherwise would have been. He admitted this procedure was essentially torture but of course most find it worth it to regain your hearing. The important thing is that my eardrum was not permanently damaged. There was immediate relief once the gunk was removed. After that experience I tried to avoid using Q-tips and instead got a product called ClearCanal that the doctor recommended. It’s annoying to have to put the drops in in the shower, wait awhile, then spray expensive pressurized liquid into your ears just to keep them unblocked, but it’s worth it to avoid a repeat of this incident.

I had to see the EDS cardiologist in Hamilton again to do a Tilt Table Test. This was to find out more about what was causing my dizziness upon standing up. It confirmed that I don’t have POTS, (Postural Orthostatic Tachycardia Syndrome) but do have something extremely similar. My autonomic issues are relatively minor but I was told I’m still at risk for fainting and dizziness as part of EDS. To combat this he gave me some weird techniques to help with circulation when standing up. For example, when it got bad I was supposed to lock my hands together and pull my arms apart from one another. 

The test itself was pretty torturous. They strap your arms and legs to a table that they can control to put it on an angle to measure my dizziness in different positions. This was meant as a simulation for someone standing up from a lying position themselves. They monitor you for half an hour with the table in a resting incline and then bring it up almost 90 degrees with the floor, so that you’re basically standing. They then they monitor you for half an hour like that. Of course, with my leg pain, standing up for a few minutes with freedom of movement is hard enough. Doing it for half an hour while strapped down is excruciating. You might have noticed I often bend my knees while standing because it reduces the pain. Having your legs straight puts extra pressure on your joints. Since my legs were strapped down, bending my knees was impossible. Virtually all of the important results were gathered in 20 minutes of standing so we stopped the test 10 minutes early because of how bad the pain had gotten. By the end of it all I certainly wasn't smiling, but at least I was making great progress in getting all the doctor visits out of the way in time for another round at university! 

The End of the Infusions

Continued from previous Ketamine chapter: 

    After learning the lesson on the first day not to stuff myself with food I had to deal with a whole other issue: heartburn. This can become quite severe when you have such an empty stomach because it causes extra acid to be produced. It felt like my heart was being crushed so they did an ECG to make sure I wasn’t having a heart attack. It was clear so the focus switched to issues like acid reflux. They had me take some type of sodium drink, which tasted awful, but helped a lot with the chest pain. It tasted like a mixture of salt water, too-powerful sour candies, and wasabi. My heart rate and blood pressure both took a turn for the worse so they lowered the ketamine dose from 80 back to 60.

    The higher infusion dose of day 2 made the pain relief last slightly longer. Instead of the pain returning by the time I was able to stand up, this time I was able to walk around for a short time with almost no pain. It was a glorious half hour. Every time the pain would come back in an unusual way. First, my legs would get a massive tingly rush of feeling. Have you ever ever slept weirdly on your arm, cutting off circulation, and woke up with no feeling in it? It was kind of like the aftermath of that, just far worse. You get the tingling and rush of sensation as blood rushes back into the limb. Multiply the intensity of this by a factor of 10 and then you have what I experienced. Calling it overwhelming is an understatement. It was sort of like your whole legs falling asleep except it was 50 times more severe and lasted up to an hour. There was also a weird sensation of fluid running through my legs even though the infusion was over by that point. It was all extremely unpleasant and as it died down the chronic joint pain reemerged in its place. 

    The hunger was at its worst the day after I threw up. Like I said, after throwing up losing everything in my stomach the nausea was still awful so all I could manage eating was a piece of plain toast at 8 pm. This means I had to go 20 more hours without food, even though my stomach was already empty to begin with. As a result of this, after my discharge, I broke my record for most food eaten at once by a large degree. I had 3 meals worth of stuff in the span of an hour and food had never tasted better. At one point in the day after taking no pills at all I felt well enough to play a video game. I was actually having trouble deciding if I was manic or simply had most of my brain fog removed from no pills. In the game I kept trying to think too fast, because having a clear mind all of a sudden takes getting used to. I wasn’t taking the time to stop and truly think before implementing a decision. I later decided I wasn’t manic because I quickly got used to the swifter decision making and willfully slowed myself down to properly ponder any actions.

    At the original ketamine clinic I wasn’t sure if the nurses were having so much trouble getting my IV in because of my unstable EDS veins or because they were incompetent. Now I’m more confident that my elasticity is the main issue. All the nurses at all the hospitals describe the same thing while repeatedly poking me: that my veins keep rolling away from them. Never once has it taken them less than half a dozen tries to get it in. To counter this they decided that I should keep the IV block in between infusions. This essentially rendered me one handed. I was desperate to shower because the physical stress of the ketamine caused excessive sweating. My cousin helped me wrap up my bandaged hand within a plastic bag to avoid ruining it with wetness. Later on the IV got out of place and it was very painful. I suppose I should be grateful they had to remake the block only once rather than every day.

    After the last infusions I fell asleep for most of the long car ride while driving back home. Even so, the moment I reached home I immediately started getting ready for bed. I was so exhausted I couldn’t even stay awake long enougg to vape the medical marijuana. I took half my usual sleeping pill dosages as well and was able to sleep 11 hours. Before ketamine that would not have been possible without weed alone, let alone only half dosed sleeping pills. This all led to the next day being the best I’d felt any on any day ever since my pain started. With so much fewer meds the brain fog was nearly entirely gone. I filmed a video showing this off on Facebook and over the next few weeks everyone had told me I was like a completely new person. I had actually underestimated how much the years of constant brain fog were slowing me down. Such chronic sleep deprivation had made me often cranky and so I hoped things would stay different. I was filled with gratitude for the healthcare staff that looked after me so I suggested we make a donation to the hospital in their honour, and my parents agreed.

    The few times over the years that such a massive change takes place, it takes many months to adjust my habits for optimum functioning. With my full-blown insomnia things were unpleasant, but more predictable. It was only possible for me to fall asleep through the pain by waiting until I was so exhausted that my body didn’t have any choice in the matter. That’s why I’d be awake for so long all the time. Once I could fall asleep without being unbearably exhausted it became harder to figure out when to try going to bed. In the following weeks I kept trying to go to sleep too early. When I say early I mean early for me but still quite long for a healthy person. Instead of being awake for 33 hours I only needed to be awake for 19 maximum. I kept my pill dosages low to stave off brain fog but this gave me less control over figuring out what time is right to at least attempt falling asleep.

    I used to only be able to swim about once a week for half an hour but my new energy surge and minor pain dulling had allowed me to begin swimming multiple times per week for up to 2 hours, with occasional couple minute breaks. I wish I counted how many laps I did when my body finished recovering from the procedures, but it was around 100. I didn’t stop there because I was out of energy; I did it because my leg pain was rising. My parents told me to take things easy but I felt great so after an hour of rest I was able to also do my usual entire workout routine even after the 100 laps. I had never exercised so much in a day in my whole life, before and after the chronic pain began. I expected the body aches to be horrible the next day or two but oddly it was very minor.

    I was speaking faster, I was typing faster, I was thinking faster, I could exercise more, and I wasn’t making quick reckless decisions or lots of typos like during the first days of having no brain fog. In the following days I also had much better cognition, but these improvements became significantly less prominent. I believe this means the infusions did have some helpful effects, though it was almost impossible to tell because getting nearly no sleep for an entire week was slowing my mind down all by itself. My pain was a bit better too. I easily fell into the trap of overdoing things. While trying to fix a TV issue, I had to go up and down stairs repeatedly, which wasn’t difficult to manage at the time. The problem was that as the infusion’s benefits wore off it took days for my legs to recover from the sudden overuse. I believe that about a week after arriving home the infusion’s aid had unfortunately worn off.

   In the time before things wore off a bit, I was of course ecstatic at the new situation. Being awake for 33 hours in such pain on a daily basis had become literally unlivable. You lose all your ability to cope when you’re awake that long every night so I’d often be in tears while lying in bed awake. For every decent sleep I got I had 4 day of total life-hating awfulness. It seemed more and more likely I wouldn’t be able to manage university at all anymore. Since starting the ketamine I still have very bad days more often than good ones, but I haven’t had a single day that I would classify as unlivably terrible. Even when I set my alarm to get only 6 hours of sleep, I’m still usually able to drive myself to local doctor appointments. The only time tears have happened since getting home from the infusions were actual tears of joy when I finally accepted that this huge improvement appears to likely be permanent. Tears of joy were a first for me, and I’m sure my family is very happy too that for now it looked like I’d need to ask for rides way less.

   Before ketamine, if I got 6 hours of sleep there would be a 100% chance that I’d accidentally nap in the middle of the day, thereby completely ruining my sleep cycle and whatever plans I had made for the next few days. Still, when I get 6 hours it’s not like I can write an essay or hang out with friends but I can at least actually somewhat enjoy my temporary distractions. I would only use TV as a distraction when I had no energy to do anything else since it’s non-interactive. My TV watching is became almost non-existent, which is awesome. Life is still hard as fuck, but at least I have a fair chance at attempting to cope with it now. I thought that maybe things would continue to improve if the doctor agreed to raise my ketamine pill dose. Instead, we soon found out the exact opposite was going to happen.

   Something I was very proud of was my ability to convince the doctor of the merits of letting me try ketamine pills, despite the fact that my mind was cloudy and exhausted from the ketamine combined with the sleep deprivation. We agreed that since the ketamine helped my pain but didn’t last long, a prescription for taking 3 pills a day would be a better option so it stays within my system. I believe he may have told me my prescription was for 6 weeks, but there was a miscommunication. I’ve been told that phrase many times by many doctors and it had always meant that after a certain time period I needed to follow up with the doctor to renew the prescription. This time that was not the case.

   I only learned weeks later that the doctor had no intention in letting me use pills for the long term. It didn’t make sense to anyone! On top of that they were again suggesting that I retry CBT (Cognitive Behavioral Therapy.) These mental exercises can be very helpful in assisting people with depression or anxiety. You learn the basics like breathing techniques, thinking positively, making a routine, etc. The problem is I don’t have depression or anxiety and my routine has been optimized with years of experience. Have I ever felt the emotions of anxiety or extreme sadness? Of course, but I don’t get panic attacks and there’s always an extremely clear reason to explain the anxiety that is not related to emotion imbalances. The last time I got a true panic attack was in 2010 because I forced myself to go to school to write tests I knew I would fail because I had missed so many classes and was on morphine. I did fail most of those courses since my high school didn’t put much effort into being accommodating.

   At first my dad was pretty assertive in pushing me to try CBT again; after a long discussion I explained my reasoning on why not to do so. I was just as sure I was right when no one believed me about the source of my pain being a physical issue over a mental one before my EDS diagnosis. It’s not that hard to tell when your mood has always had a direct linear relationship with your pain and insomnia levels. CBT won’t help me because I’m never lying awake at night in bed due to anxiety. I’ve never had to cancel an upcoming action because I’m depressed about something or in a bad mood. I’m extremely strict with my sleep hygiene, no phones before bed yada yada. The only time my mental state has clearly interrupted sleep is when I would do something like get involved in a Facebook argument in the morning which lasts until nighttime where continuing to respond distracts me, but this is not a frequent occurrence. It’s because of this that CBT has nothing to offer me, and I’ve already tried it many times in the past to appease various doctors. It was insisted that I pay hundreds of dollars to sign up for an online CBT sleep program, and it was utterly useless. If there was even a single night I was lying in bed awake due a troubled mental state I’d have a different outlook. I tried it with an open mind but am now very against continuing to waste my time with that kind of thing. I’m not saying it’s an ineffective program, studies prove that it is helpful for many, but it’s ridiculous for me to be forced to keep trying it over and over.            

   Both my parents said they believed me, and we were able to convince the doctor that CBT isn’t a good idea at this point. I couldn’t believe that the doctor had the gall to both end my prescription while advocating for CBT. I was raising my voice when discussing this with family to blow off steam but my dad warned me that when we saw the doctor I need to remain calm and collected. Otherwise I’ll come off as a kid throwing a tantrum because he wants more ketamine pills. I assured him I can and will remain calm when it is needed. We both thought it was fine to vent with each other before seeing the doctor. I became furious over the prescription ending and needed answers ASAP so we emailed the doctor and nervously waited for an explanation.

    When the pursuit of trying ketamine first began I made posts in many online EDS groups to find out as much as I could about what to expect. Most knew very little, so I promised I’d come back with a report once I tried it for myself. These are just some of the amazing responses people wrote:

The Infusion Week Begins

    I knew the high-dosed ketamine infusions wouldn’t be a cakewalk, but they were even harder than I had expected. Only time will tell if the 5 days of incredible discomfort will have been worth it in the end. Waking up to get to a hospital at 7 am or earlier five days in a row wouldn’t be particularly pleasant for anyone. For someone like myself, with insomnia so severe I’d ranked it as a 10/10, it was literally almost impossible to do. The only reason I was able to pull it off was the unlimited support from my family and friends. I was permitted to stay at my aunt’s house, just 10 minutes away from the hospital. She and my cousins would take turns driving me to and from the hospital, which has rules saying you’re not allowed to leave for your own safety unless someone comes to collect you. It went beyond that, though. Everyone, including the nurses, did everything in their power to minimize my discomfort. I can’t overstate my gratitude!

    Remember that at this point my sleep issues were so awful that I was unable to sleep at all for 33 hour periods on a consistent basis even with the copious sedative dosages. Since the ketamine infusion’s pain reducing effects wore off completely within hours of leaving the hospital I had no relief from these problems. Without the huge doses I was taking I’d be unable to sleep for even longer than 33 hours. As you might imagine, it’s not something I was willing to test. One of the many problems with taking so many sleeping pills is that it’s physically impossible to wake up at a normal time without the resulting sedation making you fall back asleep 5 minutes later after forcing yourself out of bed. Such an occurrence has happened to me countless times. As a result of this there were multiple nights where the pain prevented me from getting sleepy until 5 am so I had no choice but to take 0 pills and pull all-nighters to make it to the hospital on time 2 hours later. Chalk up withdrawal to one of the many simultaneous obstacles I had to endure.

    Then there was the fasting. Pulling an all-nighter when you have chronic pain, connective tissue fatigue problems, and withdrawal is difficult enough. Now add in the fact that I wasn’t allowed to eat or drink anything past midnight for all 5 days. On the couple of nights where I did take pills the side effect of dryness was intolerable to the point where I couldn’t even talk, so I just sucked on some ice cubes. The infusions lasted until 2 pm, but my body needed a couple hours to recover so I couldn’t leave or eat until 4 pm. If I didn’t wait I am certain I would have immediately thrown up upon standing up. Some recovery days were easier than others, but every time I was very out of breath. I was panting like a dog for hours after getting home. On certain days I needed a wheelchair to get to the car; on others I barely needed my cane. On some days I was starving and wanted to eat immediately after the infusions, on others I needed to wait many hours to tolerate eating anything at all. My nausea was worst on the first day so I waited a long time before attempting to eat anything but apparently still didn’t wait long enough. I had a bowl of soup that took me literally 2 hours to finish. I quickly threw it all up along with most of my pills. Losing the pills wasn’t a big issue because I ended up with extra due to the no-pills all-nighters.

     On the first day of the infusions my sweat allergy was a problem. It’s a good thing my mom came with me that day, because the registration room’s high temperature made me break out in a full body rash within seconds of stepping inside. I left the room to wait in the slightly cooler hallway while my mom signed me in. Even this wasn’t enough to reduce the rash so I took my shirt off while I waited to be called in. I’m glad it was so early in the morning so that the hallways weren’t very busy. Only a few people saw me and some gave me strange looks but the stinging was way too painful for me to put my shirt back on. I insisted on removing layers from the usual multiple layered hospital gowns; I minimized the clothes wherever possible. The only not perfectly pleasant hospital staff I encountered throughout the week was the registration nurse, but I can hardly blame her. She was incredibly short-staffed that day, trying to do the job of 3 people by herself. Everyone else was incredibly kind at all times.

    In terms of nausea, the first day was the hardest. It was partly my own fault. The doctor had given me those instructions not to eat or drink past midnight and I followed them. What they didn’t tell me is that if I do eat at midnight it should only be a small amount. I had thought that it was advisable to eat as much as I could at midnight, so I wouldn’t be starving throughout the infusion or get heartburn. I learned through experience that this was not the case. The registration nurse for a moment considered cancelling the infusion altogether when I mentioned I had eaten a lot the previous night. At least I didn’t get any heartburn that day. As I said, I ended up vomiting that night after barely eating anything. After throwing up the soup I just had a plain piece of toast at 8 pm until the end of the next infusion. This meant I had to go without food for four hours longer than they instruct, which caused my hunger to be at its worst the second day. For other nights I figured it would be safer not to use my foul tasting cannabis oil medication.

    The first infusion started at a relatively low dose, 60 I believe. Even so, towards the end of it my pain was completely gone. During one of my more lucid moments I messaged various people to let them know the pain was gone, but also included my suspicion that the relief would begin dissipating immediately once the IV was out. That’s what happened during my previous less intense infusions. I knew I’d forget most of the experience and I enjoy having reminders that it’s possible for my pain to go away (even if just for an hour or two) so I had the nurse record me testing my pain free legs with a smile on my face. After having constant pain for so long it’s a surreal feeling to just use leg movement without having immediate pain feedback. The nurses were entertained watching me rotate my legs like I was riding a bicycle just to enjoy the sensation of movement not instantly giving pain feedback for once.

    I knew beforehand that hallucinating was a strong possibility and so steeled myself for it. Blessedly, I didn’t have complete hallucinations, like when you see and hear things that don’t exist at all. Rather, it was more like seeing a severely distorted reality. The white curtains around me turned into people dancing in white dress-skirts. Colours became more vivid and blended together into each other. Sounds were inconsistent and had a weird buzzing noise to them. I had never done shroom drugs before but I’ve heard stories from people who have and I think there are certain similarities to what I experienced. To my knowledge the main difference is ketamine is far more sedating rather than stimulating. It was too overwhelming for me to find it enjoyable, but at the same time I can see why some people use ketamine as a street drug with far lower doses. It makes you feel like your mind is suddenly open to new possibilities. After each infusion a specific doctor would come and ask me the exact same questions every day. “Did you hallucinate? Was it tolerable? Did you feel nauseous? Was it tolerable?” Etc. I said everything was tolerable because there was no way I wanted them to cancel the infusion or lower the dose which could interfere with the pain relief.

    One of the more unpleasant aspects of the infusion got really bad when they raised the dose to 80. I’m referring to the near-constant blend of shivering and shaking. The ketamine infused fluids rushing through my body made me feel like I was freezing. Everyday once they reached a stable dose I would begin shaking uncontrollably. No amount of heated blankets could effectively counter it. As you might imagine shaking violently for over 6 hours straight is utterly exhausting. Most of the time, by the end of the infusions, I could barely move from fatigue. On the better days I heavily relied on a cane and human support, on the worst ones I could barely plop myself into a wheelchair. People with EDS have big energy problems to begin with since my body needs to work harder to stabilize itself, and this was a whole other level.

    The ketamine itself also caused extreme fatigue throughout the infusions. Standing up was completely impossible to the point that I never even attempted it or was expected to. I was given a cardboard urinal to pee in and much of the time I could barely lift myself up enough to use it. Scrounging up the energy to manage it took every bit of strength I possessed. Just lifting my upper body up with my arms was so taxing it made me feel like I had run a marathon. Since the infusions just suck the energy right out of you, they have to roll you onto your side after to make sure you didn’t accidentally piss yourself at all. The nurses put extra effort into helping me keep my dignity throughout the ordeal. I stopped caring about physical modesty a long time ago anyway. My heartrate was rising which did worry the staff a bit along with the heartburn issues. It was 117/115, which is high, but nothing dangerous yet. They were concerned because they were going to be raising the dose the next day. I can’t blame them for deciding not to.

    Aside from family, I had a couple of friends come down to visit me. The first one came early on in the infusion so I was mostly lucid enough to have some form of conversation. She kindly set up some audiobook/podcast stuff on my phone for me to listen to after she left but my mind eventually became too muddled to make use of it. My other friend came with a book I had lent to him. I was really excited for him to read it so he read it aloud to me by my bedside, which I very much enjoyed, especially after I lost much of the lucidity. In my drugged state I was shouting out phrases I remembered from the book but I was the only patient in that hospital room that day so the staff were just glad I had something cool to focus on other than my obvious discomfort.       

    As I was waiting for the infusion preparation the next day I was reading a different book from the same series which actually ended up becoming a coping mechanism. It was after an all-nighter so I was totally exhausted and quickly fell partially asleep during the infusion. For many years now I haven’t dreamt at all as a side effect from my medications. The ketamine led to a weird mixture of actual dreams and daydreams that were being influenced by the goings-on around me. Since I hadn’t taken any meds the night before I did dream during the infusion and it was, of course, a nightmare. The books take place in the year 40 000 where there are demon-like creatures trying to corrupt humanity with various temptations. The humans are led by a psychic emperor who is trying to prevent this. Since I was partially hallucinating and shaking uncontrollably (I kept drifting in and out of sleep) I dreamed I was the emperor trying to fend off psychic attacks from the demons. It was hella nerdy, but it was effective in helping me coat with the craziness I was seeing, hearing, and feeling.

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.