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: