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.