Comment by RevEng
21 days ago
This is fascinating. Three years ago, after recovering from COVID, along with many long haul symptoms I developed several similar to but still distinct from narcolepsy. Even now as the CFS-like symptoms have mostly faded, the narcoleptic symptoms are still present. Unfortunately I've not been able to get a positive diagnosis of any sort because it's atypical.
There are two main symptoms I experience. First is that, often without any clear provocation, I will become very fatigued and weak. This usually occurs over about 20 minutes, but the initial onset is a distinct event I've come to recognize. It gives many of those same long COVID symptoms: brain fog and drowsiness, weakness to the point of struggling to stand up or keep my head up, uncoordinated movements, and a feeling like I've been up all night and I desperately need to sleep. This often subsides after an hour or two, but it may last several hours.
The second which is perhaps just a more extreme case of the first is a complete inability to wake up. I may be slightly aroused and fade in and out of consciousness, but I have no ability to control this. I typically cannot move during this: everything feels so exceptionally tired and heavy that I feel like I don't have the strength to move anything, even to turn my head. Depending on how conscious I am at any moment, I may realize I'm in this situation, or I might imagine that I'm just really tired or depressed and that's why I can't move. These episodes tend to last many hours, often 8 or more. They can happen as an extension of my random bouts of sleepiness, but often they occur as an extension of my normal sleep, resulting in me not being able to wake up - even when physically aroused by someone else - until well into the evening.
In both cases the sleep is not restful. Instead I often feel it come on again a few hours later, though less extreme.
It sounds different from what I’ve been dealing with, but I got diagnosed with sleep apnea in 2023 and getting on a cpap has made a world of difference to my health and energy levels, including making my chronic migraines go away basically completely since starting cpap therapy. I am simply writing this in the hopes that possibly exploring this diagnosis might help you. I used to often wake up exhausted and feeling like I’d been hit by a truck or as though I had a bad hangover. This also no longer happens to me.
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.
Yeah, I really had a hard time getting the hang of the mask and pressure and didn’t think it would work out either, but I was eventually able to figure out settings and accessories that made it work well for me. I dunno, maybe worth it to pursue, maybe not.
Did you try not eating late in the evening (= after 6 pm)? In my youth I often felt tired and stapled to the bed in the morning, barely being able to move. The sleep wasn't restful and I always had weird dreams. Turns out that it was due to a combination of eating late and having (then unknown) food intolerances.
I realize your symptoms are different and probably not eating late won't change anything for you, but for the slim chance that it does I wanted to share my experience anyways.
For what it's worth, I've had some success treating my Long Covid symptoms with a specific form of Tryptophan found in Hydrolyzed Whey Protein (a standard bodybuilding protein powder.) You can get it OTC from Amazon [1]. My symptoms are slightly different from yours but sound close enough.
A recent study showed that persistent viral infection can block normal tryptophan receptors [2] which causes a diminished ability to synthesize serotonin, which it turns out is pretty essential for a lot of things including alertness & sleep, etc etc.
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.)
A word of warning: If you do this, take only a very small amount to start, maybe a quarter serving, because even though the body rate-limits serotonin production your tolerance will likely be extremely low from not having much for years. I didn't know this and I took a couple servings per day (after all, it's just protein powder right?) but by day two I was hypomanic which was unpleasant and it took about a week to return to normal. So start with maybe a quarter serving, wait a few days, and repeat until your serotonin normalizes.
Also DON'T TAKE THIS if you're on any medication that interacts with serotonin such as an antidepressant, SSRI, MAOI, or what-have-you. I am not a doctor and this is not medical advice, just something that helped me after many years of difficulty.
[1] https://www.amazon.com/dp/B002QZORGK [2] https://www.cell.com/cell/fulltext/S0092-8674(23)01034-6
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).
If its dipeptide transporter, seems like any dipeptide would do.
Adding bromelain to mix might help.
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Aw, too bad I can't have whey because of my lactose intolerance. :(
Wow I'm sorry to hear that, but it's also refreshing to hear from someone with a similar experience.
> just a more extreme case of the first is a complete inability to wake up.
> everything feels so exceptionally tired and heavy that I feel like I don't have the strength to move anything, even to turn my head.
I've tried to describe this feeling to others, but it's difficult. I call it my "death sleep," not to be dramatic, but because it's like waking from the deepest, most complete unconsciousness I can imagine. The heaviness in my body and chest make it feel a burden even to keep breathing; so I fall back asleep quickly.
After months of this, and visits with many specialists including a cardiologist, endocrinologist, and pulmonologist, an MSLT [1] gave the diagnosis of Idiopathic Hypersomnia [2, 3], which makes me laugh when you break it down: ("idio" = Unknown, "pathic" = Cause, "hyper" = Very, "somnia" = Sleep).
That diagnosis, while frustratingly vague, has at least allowed me to be prescribed medication that has made a big difference in my day-to-day alertness.
[1]: https://stanfordhealthcare.org/medical-conditions/sleep/narc... [2]: https://www.mayoclinic.org/diseases-conditions/hypersomnia/s... [3]: https://www.hypersomniafoundation.org/ih/
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.
* Modafinil (400mg, 1x daily) - Started with 100mg and tried several variations of timing/dosage. Currently, 400mg upon waking in the morning has worked the best.
* Duloxetine (30mg, 2x daily)
My PCP prescribed the Duloxetine early in the process when they suspected I had ME/CFS. It did not seem to do much other than make me feel calm in situations that would normally cause anxiety, but later I got the IH diagnosis and was also prescribed Modafinil. My PCP offered to help me stop the Duloxetine, but I decided to stay on it because: 1) I was so grateful for the relative energy I had after starting the Modafinil that I didn't want to do anything to compromise that, and 2) I was enjoying the anxiety-reducing effect.
The Modafinil has not completely relieved symptoms; I still have fairly bad sleep inertia and will crash with a "sleep attack" about once a week, but that is far better than before, when I was sleeping 11-18 hours _every day_.
Sorry--I'm sure that's not too helpful to you, as it seems Modafinil is doctors' standard starting point for IH "treatment" (at least in the US).
Edit: Oh, and despite the "warnings" in the Modafinil instructions, I also drink about 3 cups of coffee a day (stopping at noon), and I feel that has been a vital supplement.
What has your experience been?
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Iron deficiency anemia
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.