Comment by RevEng

I appreciate the suggestion. They tested me twice for sleep apnea.

The first time it was borderline so we decided that was unlikely to be the cause. That was also just a few months after COVID when my symptoms were extreme and persistent and I was also experiencing major insomnia.

The second time was a year later when I was supposed to be getting the multiple sleep latency test for narcolepsy. I had an awful time getting to sleep and only had a few hours. They didn't complete the narcolepsy test because they said I had severe apnea. The doctor prescribed me a CPAP and insisted it would fix everything. They went so far as to say that it's never narcolepsy and that in 10 years they had only seen one case, which is concerning given that narcolepsy is not that rare in the general population and it should be much more common among people who are tested for it. The doctor's over confidence and condescending tone made me greatly question the diagnosis.

I did try the CPAP for a little over a month. I simply couldn't make it work. I started with a nasal mask but the first time I opened my mouth I awoke in a panic as air was rushing through my nose and out my mouth. It happened a couple more times and it was clear that wasn't going to work. I then tried a full mask and while that wasn't as bad, I found it extremely hard to fall asleep. Even though I didn't find it uncomfortable, I simply didn't feel sleepy while wearing it. The moment I took it off I would be exhausted and would fall asleep. I also had trouble breathing with it. When the pressure started to rise I wasn't able to breathe out against it so I would suffocate. It woke me many times. Much later I was told that there should be a release valve for that and a different mask might help, but I had already given up on it.

Other circumstances also make me doubtful that sleep apnea is the cause. It has slowly but steadily been improving over the last two years, which shouldn't happen with SA. I have also used various sleep trackers, including recording myself, and with rare exception there haven't been any significant signs of apnea. I snore, but not loudly. I never stop breathing for any length of time. I cough occasionally but I also do that regularly while awake in bed because of post nasal drip. Even the CPAP when I was using it recorded only a few significant events. Aside from that single test, all other evidence has suggested against it.

My wife does have significant sleep apnea. She struggled similar to me with wearing the CPAP but she was recently prescribed APAP and it has worked well for her. Even with the CPAP there was a clear difference when she used it.

I have no doubt it works for many people, but unfortunately it didn't seem to help me.

I just read through the study. I corroborate your summary.

> The tryptophan found in hydrolyzed whey binds to a different receptor than normal dietary tryptophan, thereby allowing your body to reuptake it and produce serotonin as usual. (This is all in the study.)

Took me a bit to find the quote.

> If tryptophan uptake was abrogated by poly(I:C) treatment, tryptophan supplementation should elevate serotonin levels even during viral inflammation. To corroborate this, we used a diet containing a glycine-tryptophan dipeptide, which bypasses the need for B0AT1 and enables tryptophan uptake via dipeptide transporters.33 This diet compensated for impaired uptake in poly(I:C)-treated mice and led to an increase in both tryptophan and serotonin levels in systemic circulation

Now I need to ensure that whey protein contains some glycyl-L-tryptophan. The study used a lab rat diet "TD.210749" (unsearchable, maybe a custom diet) from Envigo/Inotiv. The citation used pure glycyl-L-tryptophan "G0144" from TCI Europe (~$100/g haha nope).

I can't find anything on glycyl-L-tryptophan content in hydrolyzed whey (maybe you can help?), but found one on other tryptophan dipeptides, alanyl-tryptophan and tryptophanyl-tryptophan. The ACE receptor inhibition seems relevant, too. The PepT 1 protein appears to transport the dipeptides.

"Selective release of ACE-inhibiting tryptophan-containing dipeptides from food proteins by enzymatic hydrolysis" Diana Lunow et al. - https://doi.org/10.1007/s00217-013-2014-x

I'll try this out for my early waking insomnia, mildly reduced energy, and digestive problems (started after I got Covid, almost exactly 2 years ago). I need to find one without artificial sweeteners (hate the taste). I'll report back in exactly 2 weeks (sets calendar).

Aw, too bad I can't have whey because of my lactose intolerance. :(

That's the best guess my family doctor can come to as well. I've not been given a formal diagnosis, but we have proceeded assuming that is the case. Unfortunately that doesn't lead to many options for treatment. Modafinil helped to keep me awake but laying awake through those major episodes was a special kind of hell that I didn't want to live through. Methylphenidate has helped to keep me more alert and capable during the minor episodes, though it doesn't seem to have affected the major episodes. The only other treatment available seems to be Xyrem but it's really expensive and the side effects don't seem worth the risk - there's a very real chance of dying in your sleep. I find it funny that I would be trying to treat an ailment where I'm unable to move or wake up by taking a drug that will ensure I can't move or wake up.

The only other diagnosis that seems plausible is Klein-Levine syndrome. I'm hesitant to believe it's that because it doesn't explain everything and it's quite rare, but the major episodes sound similar and that's a rather unique symptom. I would say I also experience the increased hunger during those episodes. They do tend to last at least a day with periods in between where I will be awake but groggy for a few hours and I'm usually insatiably hungry during those breaks. However, if that's actually what it is, it's even less understood and treatable than idiopathic hypersomnia is, so other than having a name to put to it, it doesn't really help any.

That's why my doctor and I have just kind of left it where it is. We have tried the available treatments for these conditions with some limited success, and otherwise there isn't any benefit to having a formal diagnosis. In fact, the sleep pathologist suggested I may not want to pursue a formal diagnosis because, if diagnosed with something like narcolepsy, I may lose the ability to drive. My symptoms aren't such that I would become incapacitated without warning, but even just putting that name on it could lead to being treated as if that were the case.

What are you prescribed? Similar situation; still trying to find the right meds.

Thank you for the input, but a full blood panel for vitamin and mineral deficiencies is the _first_ thing a primary care physician checks when reporting these symptoms. To get to an Idiopathic Hypersomnia diagnosis, you have to exclude many things most people think of: vitamin and mineral deficiencies, poor sleep hygiene, depression, sleep apnea, etc.