For the record, this admittedly lengthy blog post took me 5+ hours to write. Given the word count, I estimate it will take you 15 minutes to read it all in one go. It actually started out as a normal Facebook message update; but it quickly became clear that message would be farrrr too long to be in any way reasonable. Hopefully you find this interesting information…interesting! It describes all the relevant information regarding an equally lengthy appointment of mine with an absurdly knowledgeable sleep disorder expert. Forgive a few jokes mixed in, if you can find it in your stony hearts. *wink*
If you thought my insomnia was bad before, it got twice as bad three weeks ago when shit really hit the fan. I had to stop using cannabis and ketamine completely without warning, and I have already alluded to some of the reasons why to friends and family. Those two medications were the most important tools I had for maximizing my sleep quality and length, not to mention my pain levels. Given that they both tried to murder me recently and nearly succeeded, I may never be able to utilize them again. Time will tell. All my medications are traitorous cowards, they wait until they knock me into unconsciousness and then cause me to vomit violently and repeatedly and nearly choke to death. I’m starting to take it personally…
My current sleep doctor is horrified at my sharp decline and so referred me back to his mentor not long ago. This other sleep specialist was my very first sleep doctor if you can believe it. I think I started seeing him in 2010, long before my EDS diagnosis. He eventually ran out of ideas and referred me to his colleague, who also ran out of ideas and referred me to his colleague, who just weeks ago, you guessed it, ran out of ideas and referred me back to his mentor. I may be back where I started, but we are now equipped with crucial new information, such as the EDS diagnosis that explains my chronic pain and many other issues. No, depression is not the cause of my pain like everyone insisted, lazy joints that have been on strike the instant they came into being in my mother’s womb are the problem here. Maybe they meet with my medications in the dark recesses of my buttocks and plot against me. I’LL CATCH YOU ONE DAY YOU MEDDLESOME FREELOADERS!
Today I had an appointment with that previously cited mentor, who happens to be perhaps the most prominent expert on sleep disorders in Canada. You can check out the link on him at the end of this blog. By that point you will have an understanding of just how productive the appointment was and why this blog post is the longest one I have ever written. This particular story started the night before the appointment. I planned my sleep perfectly. I couldn’t take my sleeping pills too early or they would wear off before I could fall asleep and I’d wake up too exhausted to effectively communicate with the expert. If I took them too late, I’d then fall asleep too late and so wake up too late and miss the appointment altogether! So I had to try to compromise, and my decisions worked out perfectly despite my exhaustion, pain, and stress. Luckily I have plenty of experience both functioning and making impossible decisions under such conditions. “How can anyone expect me to work under these conditions?!?” Says Truman’s fake wife from The Truman Show Film. Wait a second… am in a movie? Are you all actors?!? Wait… I am in a movie… the documentary about me coming out next summer… IT ALL MAKES SENSE!!! (It’s called Bend or Break, go follow it on Instagram, link at end of blog).
I was to be called by the expert’s assistant first at 3:00 pm. I woke up at 2:45 pm; completely naturally I might add! The timing on my part could not have been better. No, it wasn’t luck; it was my quick thinking that made it so. I was extremely stressed that night because I wasn’t falling asleep fast enough due to how badly my stomach hurt (more on the cause of that in future blogs). Stress of course makes falling asleep even harder. So I took an extra 150 mg of quetiapine, which I am not supposed to do, and fell asleep quickly after that. 150 may sound like a big number, but given the fact that my usual total dose of quetiapine is unprecedented… (I promised the prescribing doctor not to give exact numbers publicly given the insanity of those numbers, but trust me, it’s totally like, whack, yo) 150 is a drop in the bucket, I assure you. Given that the next day I had the second most important appointment of my life (the first being the appointment where I got my EDS diagnosis) I broke the rules due to the emergency. I did tell my sleep doctor about this like I always do, out of honesty, and he understood my reasoning but was still not pleased. But as I said, in the end it worked out for the best from my perspective. The unfortunate thing is although that last sleep was terrible; it was relatively amazing to previous recent sleeps. In fact, it was my best sleep in the past month. Though that just shows how bad my recent sleeps have been and I worry that it was not coincidence that I slept way better the same night I broke the rules and took more pills than I was supposed to. I promised I wouldn’t break the rule again anytime soon, so I may go back to sleeping even worse every night until we find another solution many weeks or months or never from now.
While I was in bed trying to fall asleep I made a post in my blog group that said “I’ve cried too much and raged too much over recent events. So now with severe and unrelenting stomach pain on top of everything else keeping me awake when I need to wake up on time for sleep expert appointment tomorrow… my main hope of improving… I don’t cry myself to sleep. Or scream. Not anymore. Even right this very second, I just close my eyes in bed repeating: ‘I can’t take it… I can’t take it… I can’t take it…” I was mostly referring to my stomach pain, but also the stress I mentioned over the potentiality of missing the next day’s crucial appointment. Do I break the rules as slightly as possible or likely miss the all-important appointment? I broke the rules.
Over the next weeks or months, we are going to do many strange tests that are not covered by OHIP. Honestly, though, we are so far passed the point of desperation that this doesn’t faze us at all. The expert agrees with my sleep doctor and me on the idea that I may have a circadian rhythm free running type disorder that my friend Kathleen told me she suspects I suffer from. I believe she has one friend where that is the case. At first the expert said no to this, because the patients he has seen with it all presented with a 25 hour sleep schedule, and I am awake far far longer than that unfortunately. However, I quickly changed his mind. I pointed out that those patients didn’t have extreme chronic pain like I do. This means that maybe if I had no pain, I would have the disorder as it typically presents. Instead, my pain keeps me awake far longer than the usual 25 hours. Given that, he said that’s entirely “plausible.” I actually thought of a possibility before the best sleep expert in Canada did!
As I said, we need to do many tests to try to confirm this diagnosis. Firstly there is a $7000 sleep tracking device that, luckily, we do not need to purchase. This is because it can be rented out for $200 for 2 weeks of usage. To get all the data we need for my situation, we will pay $400 and rent it out for 4 weeks. We also of course need to do another sleep study. In the past I went to special clinics designed for that purpose. That is no longer possible. Those sleep labs can only test people when they are asleep at night and awake during the day. As we all know, my sleep schedule is completely random and unpredictable. This is exactly what the term “free running type” means. Therefore, instead, we will purchase the equipment we need so I can do the study myself at home and this costs $600.
The sleep expert is going to contact another one of his former students, who is now a professor at Harvard and an expert on circadian rhythm disorders. He will ask his opinion on if I should also get a flicker fusion test. This test focuses on your eyes, and if they can differentiate between different kinds of flickering lights. If this test is positive it is indicative of a circadian rhythm disorder. The sleep expert said my current sleep doctor (also a former student of his) is one of the only sleep doctors he respects in Toronto. Due to this, he said that if it was anyone else prescribing my insanely massive medication dosages, he would think they are a fool and completely irresponsible. I pointed out that I explained how we got to this point in the 5 page email I sent him last week and so I realized he clearly hadn’t read it yet. He then said he would now read that email as soon as he can. In the email I say that the dosages kept rising slowly over 13 years, and every time the dose went up we got an ECG to make sure they were not messing with my heart’s QT-interval. If that interval is disturbed, you can indeed drop dead at any moment. Luckily, all my ECGs have been perfectly healthy, as my cardiologist brother can attest. Even when I explained this, many felt different. In the biggest worldwide EDS group, when I revealed my dosages I was almost harassed out of the group. All the fellow zebras insisted I had to lower the doses despite me needing them to function or I would surely die any day now. I think I shall put faith in my sleep doctor and my cardiologist and my brother over them, but I was certainly stressed about so many dozens of people insisting I would be dead soon. Who knows, maybe they will be proven right at some point. Then they can write on my tombstone: “those random internet strangers were right for once in their lives! Everyone fire their doctors! All healthcare decisions are now under the authority of a popular vote!” Can tombstones have that much writing on them?
As soon as I finished describing the severity of my sleep issues, and thanked the expert for his interest, the expert said “Big problems require big attention.” Even still, my dad pointed out that most doctors want simple cases so they can give easy and simple solutions without getting off their educated butts. At the end of the call, my dad and I said “thanks for the help!” and he replied “I haven’t helped at all yet, but I will try.” Given the complexity of my problems he said he would contact his extensive resources, formulate a plan to help me, and get back to me with the details in three weeks’ time. I am saddened I have to wait that long given the intensity of my present suffering, but this is exactly why my next semester is doomed and I need to drop all my courses for the time being.
Waiting that long would be difficult even if insomnia was the only issue I’m trying to solve right now. There’s also my ketamine crisis, my stomach crisis, my frustration at having to cancel all my dates with girls while this is happening, putting university on hold indefinitely, trying to see if I can safely get back on cannabis at a lower dose, unprecedented (for me) and uncomfortable neurological incidents that almost make me faint, not getting to see friends as much as usual even though the semester is over, no travelling at all really, and the cherry on top of a cake made out of parasitic tapeworms and cyanide is worsening leg pain. I will elaborate on all these other issues in future blog posts given that this one may be just a little too long already... It will be a very long time until my situation improves enough to sleep well enough to be rested enough so I can concentrate enough on reading university textbooks again. Right now, I can’t even sleep well enough to concentrate on reading my recreational Warhammer books! How can anyone, including my own stubborn self, expect me to read a textbook or three under these conditions?!
It may be obvious that I sent the sleep clinic a complete list of medications I am currently on. Everyone is always amazed at how I remember the names, dosages, effects, and side effects of the 16 medications I’m on. I don’t remember the dosages of about 4 of those because they’re supplements with no real side effects. What is less obvious and even more impressive is the fact that we also sent them a complete list of every medication I have tried over the past 13 years. I remembered about 23 of them off the top of my head, and also remembered why we gave up on me taking them. Sometimes it was lack of efficacy, sometimes terrible side effects, etc. Even still, there were another perhaps 17 medications I could not recall right away and we scoured my old medical records to find those and send them to the expert. The last thing we need is for me to try things that didn’t work in the past or even worse, things that threatened my life because they caused serotonin syndrome or persistent fainting. Going through all that old information, I was shocked at just how many different medications I have already tried and how almost all of them either didn’t help or clearly worked with my currently prescribed rebellious medications to make things 10 times worse for me. Does anyone remember those two times my medications interacted and tried to murder me again by causing serotonin syndrome? TWICE?! Cause I sure do. The North Remembers and the Mitch ESPECIALLY remembers. Unless it’s a short term memory, then the Mitch forgets within 5 minutes apparently… more on that later.
The expert’s assistant also accepted my offer of sending them the excel spreadsheet containing detailed sleep data that my current sleep doctor has me tediously fill out so he can use it to study me. I imagine the assistant will pass that data on to the expert if he finds it useful. Before I spoke to both the assistant and the expert I had to spend hours filling out an extremely detailed sleep info survey. I left one section blank, and at this point the assistant asked me why. The survey question asked me a hypothetical: if I could choose any time of day to write an exam, what would I choose? As I told them, it is impossible for me to answer that question because I wake up and go to sleep at totally random times each day. What I can say is that the ideal time would be 2 hours after I wake up, whenever that happens to be. This is because in the first 2 hours after waking up I am both groggy and have severe brain fog because my previous night’s sleeping and pain medications have not fully worn off yet. After that, each second I’m awake for the next 36+ hours sees me getting more and more exhausted. Therefore 2 hours after waking up is when I have the most alertness. The assistant says all of this makes complete sense. In fact, when he commented on how extreme the sleep problems I’ve dealt with for 13 years are, he promised to get me the help I desperately need as quickly as possible. I thanked him profusely and, frankly, nearly started crying again out of both hope and PTSD remembering all the shit I’ve dealt with for exactly half my life now.
I used to use a pretty standard Fitbit bracelet to track my sleep data like REM, deep sleep, light sleep, sleep length etc. Just this week, however, I got an upgrade and bought a Fitbit smart watch. It can perform basic ECGs and measure temperature, both of which are relevant to sleep. Plus of course all the features of the basic Fitbit.
Since I came so close to missing this appointment, I am worried that I will surely miss future ones. And boy, are there plenty on the horizon. Ironically, until I get help with my sleep issues, my sleep issues will be so bad that making sure I’m awake for the appointments that will improve my sleep issues is harder than ever. A classic catch-22 is at play here. It is infuriating, but also perhaps a tiny bit amusing. I mentioned to them the medication I found online that treats the circadian rhythm disorder, the medication is called Hetlioz. In the past another medication was used by the expert to treat this, that being lithium. When the sleep expert saw the first case of this disorder in the 1980s, lithium is what he used to treat it. I am not yet sure which medication I will get if I do get diagnosed with this.
This is perhaps the best news to come out of the appointment: the expert has seen patients with this disorder who are not blind. As my own research showed, most people diagnosed with this are blind. This makes sense to me because if you can’t perceive light this surely messes with your circadian rhythm, which is the main component of a person’s sleep/wake cycle. Given that I am obviously not blind, it is a relief to hear there is a significant chance I have this disorder anyway. If I have it, we can likely treat it. At one point the assistant had me do a short term memory test. I had to remember a basic sentence. Right after he finished verbalizing the sentence I was asked to recite it. I recited it perfectly. However, 5 minutes later I was asked to recite it again, and I failed miserably this time. I could only remember the last word of the sentence. I have not kept the fact that I have a terrible short term memory a secret. The question is: why? To be honest, I thought using medical marijuana everyday was the main culprit. But given that I haven’t used cannabis at all for almost 3 weeks now, given that it tried to murder me very recently and almost pulled its assassination off, I would have thought that my memory would be better. It’s not. Is it brain damage from too much ketamine? Issues with concertation because I’m perpetually exhausted from insomnia? Maybe it’s brain damage from me overdosing on morphine as part of a suicide attempt which put me into a somewhat lengthy coma? Who knows at this point? It’s depressing to think that my short term memory loss may be permanent.
After all this, I’m left wondering why I didn’t get referred back to this expert years ago when I was also suffering horribly. Fortunately, my dad and sister who were in the room and listened for both entire multi-hour phone calls yesterday said I explained things perfectly both verbally and in my prior five page email. It was only sometime after hanging up that I remembered an old reason for loving this sleep expert when I was his patient over a decade ago. He was the ONLY doctor who believed me when I insisted my terrible chronic pain had a physical cause. He did not for one second believe the psychiatrists who diagnosed me with conversion disorder (mental depression causing physical pain) any more than I did. I doubt he remembers that detail by now, so next time we speak I’d like to mention it to him given how all these years later his faith in me was validated the second I obtained the EDS diagnosis in 2014.
We didn’t have time to go into detail on this, but every few days I seem to get some unusual form of sleep paralysis combined with nightmares that feel closer to semi-conscious daydreams rather than actual sleep. These disturbing episodes almost always happen from the same circumstances. I am resting in bed, trying to nap, perhaps. As I am starting to fall asleep, I suddenly remember some sort of reason why I should try to postpone or avoid napping. I then try to get up. Trying to get up when I’m already half asleep seems to trigger the paralysis. This doesn’t happen too often, but lately it’s been more often than ever, maybe once or twice a week. Why do I never get to have pleasant dreams when these things happen? I want to dream about puppies, sunshine, rainbows, and a body that isn’t as ticklish as mine. If I was a Jedi I would use my might to force-push all the little girls at camp away so that they’d fall over without me touching them, absolving me of all blame. “It was just the strong wind! I can hear it whistling through the forest trees!” I’d say. Screw curing genetic disorders like EDS, why aren’t philanthropists donating their fortunes to curing ticklishness! It’s a modern tragedy!
Alas, my persistent nightmares are almost always featuring topics I had thought about earlier that day. For example, I showed my sister scenes from one of my favourite horror games (Dead Space 2). I also saw a meme that features a quote from the game on reddit that very day. That night I dreamt I was playing through the game on my computer except I was somehow in the game and could not stop “playing” until the paralysis ended. Oh my god! As I was writing this just now, I thought of a new explanatory possibility. Some may not know that I put a lot of blame on certain doctors, including psychiatrists, for me ending up in my current life threatening crises and other problems. The quote from the meme is a psychiatrist saying to the mentally and physically disturbed player “Isaac, we’re all gonna burn for what we did to you…” then he slits his own throat and dies. Womp Womp. Could I subconsciously have fixated on that quote due to my extreme anger at many of my doctors right now? (More on that topic in future blog posts as well).
I could write a novel on everything that I’ve gone through in the past 3.5 weeks. In fact, if I can survive until then, I plan on a novel and probably even a second documentary as a sequel to the first that will be released sometime before summer 2022. With all of you supporting me, I might just make it there. We wouldn’t want these future projects to be posthumous, now would we? (Please don’t say yes).
I used to use a pretty standard Fitbit bracelet to track my sleep data like REM, deep sleep, light sleep, sleep length etc. Just this week, however, I got an upgrade and bought a Fitbit smart watch. It can perform basic ECGs and measure temperature, both of which are relevant to sleep. Plus of course all the features of the basic Fitbit.
At the end of all this is a link to extremely detailed information on the rare sleep disorder we all suspect, and maybe even hope, I do suffer from. Diagnosis first, cures second, celebratory pancakes, waffles, and French toast third. When you read the link on the circadian rhythm sleep disorder at the end of this post, you will see I have basically all of the major symptoms. It seems like a progressive disease where, without treatment, you will be awake for longer and longer periods each year that passes. It is therefore impossible to maintain any semblance of a structured sleep schedule. All three of my experienced sleep doctors each insisted I try to set an alarm at 9 am for 13 weeks at a time. I quickly learned it was never going to work, but they didn’t listen to me. Each one forced me to try again a few times each. This process took years, and I was so exhausted from it that I needed to drop out of school for most of those years. Thinking back on this infuriates me, especially now that I’ve had to put my studies on hold indefinitely. The fact of the matter is, if they had listened to me from the beginning and had realistic expectations, I am certain I would have graduated from university by now. This is a given due to how much time I wasted trying their doomed to fail strategies over and over again. Given that I may never recover enough from my current issues to graduate, these doctors and others may very well have stolen my chance at a degree from me. Each of those 13 week periods was among the worst months of my entire life, and that’s really saying something. I wonder if they feel guilty about it, especially if I might have that sleep disorder that dictates that their attempts to force me onto a structured schedule were never going to work. My mighty efforts to force it to be otherwise may always have been irrelevant. Or maybe more likely, they don’t even remember all that given that it happened so long ago. As for me? The Mitch remembers…
It’s not like we didn’t try our best to follow their instructions. I set alarms at 9 am, and when those didn’t wake me up my parents would come in and make sure I did get up. They would take plastic baggies, fill them with ice water, and dip my toes in them to jolt me awake despite me barely sleeping the night before. They would tickle me until I got up, and many of my friends know that my extreme ticklishness has caused me more trouble in life than my god damned EDS ever has. Let’s just say summer camp sure was/is a hoot… If anyone reading this ever uses this information against me I will come after you harder than the doctors who failed me.
However, my parents were simply listening to what the sleep experts told them to do. Who were they going to listen to, a 16 year old miserable, angsty and maybe even hostile teenager? Or experienced doctors they can relate to given my dad is a doctor and my mom is an optometrist? Given this perspective it’s hard to blame them for it all now, but as you might expect, I certainly felt differently at the time it was all happening. I’m also sorry to say that either intentionally or by accident family members sometimes misrepresented my situation (which they fully admit to now), giving the doctors the impression that I wasn’t actually trying to follow their instructions. Obviously this wasted even more time because they blamed me for the subsequent failures of their tried and true strategies. Now those very same doctors call me an “unprecedented medical marvel” partially because what works for all their other patients never seems to work for me. Story of my life, right?
Link to potential circadian rhythm sleep disorder that may have been totally destroying my life for 13 years: Rare Sleep Disorder Info Link
