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!