As exciting as this is, I know it's going to be a tedious process. I have to fill out an excel spreadsheet everyday that would show all the tiniest details about my sleep and pain cycles. When exactly did you take your pills? What dose were they? What was your pain level that night and the next day? How's your mood? What's your energy level? When did you wake up and fall asleep? Did you use the special wakefullness light after waking up? How stressed are you? How well can you concentrate? What does your fitbit say about awakenings, REM patterns, and deep sleep amounts? Did you take any naps? All this information needs to be filled out on a daily basis for the study. The hope is that this data will convey how unprecedented the severity of my issues are. As the doctor put it, we've been sailing in uncharted waters because no one anyone knows of takes the amount of sedatives that I do while still not falling asleep until I've been awake 24 hours. Remember, the maximum dose for quetiapine is 300 and I take 2300. My parents and I were watching a show called Homeland and at one point one of the characters get a normal dose of this medication and are warned "It will knock you out for days." We started laughing because here I am taking 8 times the maximum dose and I still can't sleep, yet this character is totally knocked out.
What would be amazing is if this study catches the eye of other researchers who will want to know even more. The assumption is that I just don't metabolize medications properly so if we could fund the pharmacokinetics study I mentioned in the past we could find out what the hell is going on in my body. If we can't get it funded we might just pay the $10000 and do it ourselves at this point. At the very least it would tell us when the optimal time to take each of my pills is based on how my body absorbs them. Perhaps it would even show that I can safely take far higher dosages of my medications because most of it isn't actually making it to my brain.
The next step in this plan is being referred back to my very first sleep doctor from 2010. He still runs a sleep study clinic so I'll get another one done with him to see how things have changed from the previous sleep studies from many years ago. We're also going to do a melatonin blood test for the first time. I'm interested to see if I have low melatonin levels that explain my insomnia or normal levels that are essentially cancelled out by my ridiculous pain intensity. This first doctor is the one I saw before I was diagnosed with EDS and the only one to agree with me that I was miserable, not clinically depressed, so I'm excited to see him again. Unfortunately this sleep doctor is away for the next while so I may have to do this all in the middle of the next semester which will already be a struggle with my horrible sleep patterns. The plan is to keep doing online courses because ensuring I'm awake on time for each lecture with a 24 hour sleep schedule would be impossible, particularly if I have 3 1.5 hours classes in a week instead of 1 3.5 hour class.
I had to come back from summer camp a bit earlier than I planned because all the massage therapists in the area of the camp were fully booked up and my legs were killing me. I saw one once while there and they said what they all say, that the only other time they use maximum pressure is with 400 pound patients. My muscles are just that tight as a response to the pain. I became really sick the day after getting back and it lasted for 16 days because of how crucial decent sleep is in getting better. Not only is my sleep and pain bad to begin with, it gets even worse when you're fighting off a virus. My doctor confirmed that the sickness was causing problems when I showed him that my fitbit said I was getting 10 hours of sleep instead of 16, almost literally no REM or deep sleep, with the REM being so low it wouldn't even assign a percentage to it.
My shoulder problems have also increasingly come to the forefront of things in the past year. It burns a few times every day so I went to see a shoulder doctor about it. He said my trapezius muscles were atrophied and so physiotherapy might help with the pain. I'd seen this doctor many years ago when my right shoulder first started sublaxating and he said my rotator cuff muscles were atrophied and so I did physiotherapy for that and now when I saw him again he said the cuffs are fine. I went to a new physical therapist and my strength has greatly improved; he said I had perfect exercises form when I saw him again. Unfortunately, my pain hasn't been helped much despite the strength improvement. However, I do think I've been subluxating a bit less. I'm seeing the doctor again in October, hopefully we can find ways to avoid another surgery. I had hernia surgery in February so am not too keen on the idea of having two in one year. Note the asymmetry and winged scalpula:
You may remember the theme of my hopes being built up with different ketamine solutions only to be somewhat dashed soon after. Not only were the infusions not the permanent solution I hoped for, but the nasal spray I was recently given has its own problems. I had to fight to get a second infusion 6 months after the first one when it was supposed to be one year and then that infusion wasn't nearly as helpful as the first one. Then I'm told I'll only be allowed one more infusion next year so it doesn't screw up my brain too much. That's understandable, but I wish I was given this disclaimer beforehand. Then I'm given the ketamine nasal spray, and while it wasn't as helpful as the infusion, it helped. But wait! Cause now it turns out you can't use it everyday or it will stop working and also destroy your brain. Almost every time I don't use it I have a crappy sleep so the impact on my functioning was very much different than what I hoped for and expected. Stop building my hopes up, man! To prepare for camp I stopped using it for the whole week before, which of course sucked. Though this allowed me to use it everyday while at camp, which the doctor said was a reasonable compromise. He had concerns over nasal perforation from the spray but I looked into this and apparently it shouldn't be a huge concern. The worst thing is breathing in the nasal spray too hard and it going down to your throat. It stings and tastes awful. The doctor had never prescribed the nasal spray before but people in the EDS Facebook groups swore by it so I was able to convince him to make yet another exception for me. I quickly realized I could raise the dosing frequency because a day for me is twice as long as a day for regular people so if I use it once when I'm awake it will be around 38 hours until I want to take it again instead of, say, 20.
Something else kinda concerning only really happens when I take an extra quetiapine in the morning to fall back asleep, which is very rare. I'll wake up to go to the bathroom or whatever and a few seconds after standing up and walking I'll just completely collapse on the ground. I lose complete control of my body for a second and just plop right down. So far I've never fallen into anything but it's a scary sensation for sure. I only ever take that extra pill when I know it will ruin something important coming up that day if I don't get the extra sleep. It's a weird feeling because it's not really fainting, you're fully conscious but lose all feeling and strength in your body for a moment. I should do what people with POTS do and stand up slowly but when I wake up in the early morning after taking all those sedatives I'm not exactly thinking clearly. Hopefully this is all harmless.
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