Do you categorize your sleep problems as narcolepsy or hypersomnia? It seems to be a different branch of narcolepsy, from the limited amount I know about it. I have the same thing, severe inability to fall asleep and severe inability to stay awake. I would leave to hear which one you think applies most to you!
yeow. this doesn't sound like fun. My husband was finally diagnosed w AL Amyloidosis after a few yrs. No cure. But, trying to find the diagnosis was very hard. I'd be several pages in to a rare disease database and nothing popped. But, when, after he'd had biopsies done and they came back positive for amyloidosis, I popped that into my search string and voila! Tons of hits. That said. I hope you do NOT have any of the couple doz. varieties of Amyloidosis. I am giving you a link for rare diseases that might help you narrow things down. Might. Maybe. https://www.findzebra.com/
That database is fairly new, developed by the Scandinavians to try to help Drs. find stuff. Honestly, they all really need to fix their algorithms. But, I hope you'll get some use from it.
Aug 9, 2022·edited Aug 9, 2022Liked by Paul Ingraham
I've been following your work for several years, so I know it's entirely possible I'm making suggestions that aren't helpful! But since you mentioned that CCJ issues are one of your most plausible hypotheses, I wanted to recommend trying a cervical collar. The Miami J ones on Amazon have been very helpful. (I looked and didn't see any posts on that in the things you've tried; entirely possible I'm missing information so apologies if this isn't helpful.) I had a similar "never quite recovered" episode with Epstein Barr back in the early 2010s, which is pretty much what led me to your blog in the first place. I got diagnosed with CCI earlier this year, and weirdly, so did my husband - who previously had a pile of fibro / ME / CFS / POTS-type diagnoses. Trying cervical collars was really the clincher in narrowing it down. (We've also both since gotten stem cell procedures.)
Wow. This looks so much like the notes I write for myself regularly, summarizing what's moved to the top of my list, to remind myself to look into them and hopefully remember to mention them to doctors. I just found your work through googling whether massage therapy is a pseudoscience (due to being awake at 2 AM with pain and thinking "I really need to remember to schedule a massage soon") and ended up here, and I think I'm going to be following this journey. I am currently on a "try everything I can" journey which is pretty limited due to being in school and, you know, chronically ill; but I'm seeing every specialist I can while I have good insurance and I'm reading as much as I can and I'm doing the treatments I'm offered. I *just* had a sleep study that found OSA and I'm thinking chronic sleep deprivation -- that I wasn't even aware of! -- could be a contributor. Sorry I said way too much about myself lmao BUT POINT IS I super appreciate your publicly documenting this, I'm looking forward to reading, and I hope the very best for you.
I love your attitude of feeling kind of ridiculous because of all the nasty shit going on. Also I had a tonsillectomy at 16 that was supposed to solve All the Problems lol. Wish I got to have it again solving All the Different Problems.
Do you categorize your sleep problems as narcolepsy or hypersomnia? It seems to be a different branch of narcolepsy, from the limited amount I know about it. I have the same thing, severe inability to fall asleep and severe inability to stay awake. I would leave to hear which one you think applies most to you!
yeow. this doesn't sound like fun. My husband was finally diagnosed w AL Amyloidosis after a few yrs. No cure. But, trying to find the diagnosis was very hard. I'd be several pages in to a rare disease database and nothing popped. But, when, after he'd had biopsies done and they came back positive for amyloidosis, I popped that into my search string and voila! Tons of hits. That said. I hope you do NOT have any of the couple doz. varieties of Amyloidosis. I am giving you a link for rare diseases that might help you narrow things down. Might. Maybe. https://www.findzebra.com/
That database is fairly new, developed by the Scandinavians to try to help Drs. find stuff. Honestly, they all really need to fix their algorithms. But, I hope you'll get some use from it.
I've been following your work for several years, so I know it's entirely possible I'm making suggestions that aren't helpful! But since you mentioned that CCJ issues are one of your most plausible hypotheses, I wanted to recommend trying a cervical collar. The Miami J ones on Amazon have been very helpful. (I looked and didn't see any posts on that in the things you've tried; entirely possible I'm missing information so apologies if this isn't helpful.) I had a similar "never quite recovered" episode with Epstein Barr back in the early 2010s, which is pretty much what led me to your blog in the first place. I got diagnosed with CCI earlier this year, and weirdly, so did my husband - who previously had a pile of fibro / ME / CFS / POTS-type diagnoses. Trying cervical collars was really the clincher in narrowing it down. (We've also both since gotten stem cell procedures.)
Also I'm sure you're familiar with Jen Brea / Jeff Wood's work, but just in case - https://jenbrea.medium.com/ and mechanicalbasis.org.
good luck, this kind of stuff is a mess.
Wow. This looks so much like the notes I write for myself regularly, summarizing what's moved to the top of my list, to remind myself to look into them and hopefully remember to mention them to doctors. I just found your work through googling whether massage therapy is a pseudoscience (due to being awake at 2 AM with pain and thinking "I really need to remember to schedule a massage soon") and ended up here, and I think I'm going to be following this journey. I am currently on a "try everything I can" journey which is pretty limited due to being in school and, you know, chronically ill; but I'm seeing every specialist I can while I have good insurance and I'm reading as much as I can and I'm doing the treatments I'm offered. I *just* had a sleep study that found OSA and I'm thinking chronic sleep deprivation -- that I wasn't even aware of! -- could be a contributor. Sorry I said way too much about myself lmao BUT POINT IS I super appreciate your publicly documenting this, I'm looking forward to reading, and I hope the very best for you.
I love your attitude of feeling kind of ridiculous because of all the nasty shit going on. Also I had a tonsillectomy at 16 that was supposed to solve All the Problems lol. Wish I got to have it again solving All the Different Problems.