It's kind of remarkable how little we know about the most basic functions of our bodies.
It's also interesting how much stigma there is attached to a disorder like this, because of how it presents. Obviously, if a person can't wake up, they're lazy or malingering, or their diet is off, or something. As much as anything, the social aspects around the disease make the identification and treatment very difficult.
This was practically my brother and me for a couple years. Eventually it got labelled "chronic fatigue" (one of the biggest umbrella terms ever). I have no idea if it's at all the same thing, but I can absolutely attest to fighting the same stigmas.
We went through a couple doctors who were convinced we were faking everything because the standard (and plenty of non-standard) tests didn't show anything they learned in school. We had fights with the school system (eventually switching to homeschooling (which is far from stigma-free itself)). There was plenty of family stress, as you can imagine. It's infuriating and depressing and ludicrously hard to find anyone who's willing to work with you.
At least we have the internet now, so the crazies can find each other. Obviously a double-edged sword, but otherwise things like this never get noticed.
Seems like the experience is pretty similar with a lot of these disorders. I have an autonomic nervous system problem that overlaps significantly with "chronic fatigue," and I've seen a lot of patients go through similar "why can't you just..?" discussions with family and friends. I've also had similar experiences to what you describe with your school situation, but also with employers. It's a special kind of stressful when your livelihood is on the line and your employer won't take your issues seriously, and you have to struggle to medically validate your circumstances when you can't find a doctor who understands it either.
For most people with poorly understood issues like these, getting an actual diagnosis is like an emotional and social breakthrough - complete validation that something's really wrong.
I recently found a book that's all about these kind of diseases ("invisible chronic diseases") - it has whole chapters dedicated do dealing with the problems you described.
> It's kind of remarkable how little we know about the most basic functions of our bodies.
We have some of how it works; GABA was first synthesized in 1883! The problem is that we have no idea of the situation on an individual level. In this case until the spinal tap came back positive for abnormally high GABA levels, all we have to go on is the patient's report.
Fortunately in this case, high GABA levels can be measured via a spinal tap and while the article ends abruptly, the 'what next' is that his GABA is too high, so... lower it. Hopefully a drug can be found that does that sustainable.
Unfortunately, for other mental disorders, there's no such test, and no way of knowing what's chemically wrong, so for depression which probably has a whole host of causes, all we can do is try different drugs until we find one that works for a particular patient.
For now, the medical tricorder remains unfortunately in the realm of science fiction.
The reason Flumazenil is used in treating benzo addiction is that benzos, in hyper-stimulating the GABA receptors, downregulate them—which leads to what is commonly referred to as "Benzodiazepine withdrawal syndrome", but really just means "not enough GABA-mediated activity."
Flumazenil, then, in suppressing GABA, upregulates production of the receptors for it—and therefore makes the benzo-withdrawal symptoms go away. But it does it by making the symptoms, for a short time, worse.
Now think about what these people are doing by using Flumazenil to treat their high-GABA hypersomnia, and apply it to the body's quick re-regulation of GABA receptor activity mentioned above.
It would seem that, pharmacologically speaking, by taking this drug, they're actually making their problem worse in the long term. If an initial anesthetization caused their GABA up-regulation, they're only making it worse by up-regulating GABA receptor production. Rather, it would seem that what they should be taking is, in fact... benzodiazapenes! (As long as this would not, in fact, lead to benzo-overdose-associated respiratory depression more easily than it does for regular people, I mean.)
It's unfortunate that the article ends the down quote "Hang on. Well, like, what next?" after the test results indicated a with 3x normal levels of GABA.
Well, what next? If your GABA is high, then the science begins.
Outside of the benzo family, there're a few others.
How about chlorophenibut, which is a GABA receptor agonist?
How about straight GHB, which is naturally produced by your body, but is a precursor to GABA in the brain. (Theory being if there is more GHB your body will notice and then stop producing GABA.)
I used to take substantial (up to 60mg in a ten hour period) and well-tolerated (very little sleepiness, no euphoria) doses of valium when flying. While I never took it when not flying, I had (and to some degree still have) an intrusive desire to be taking it, especially after recent usage.
I took it to fly for maybe 4 years, with an increasing dosage (I started at 2mg), and flew about once every 2-3 months, and had a couple of noticeable comedown periods. I don't know if that fits your "addicted to valium" definition, but I didn't have any noticeable "more awake" feelings in the 2-3 month dry periods.
(I recently switched to beta-blockers, which are neither addictive nor habit-forming, for flying, with a greatly decreased valium dose, and it's going great. Would highly recommend trying it for anyone uncomfortable with the direction their benzo tolerance is travelling, and with appropriate symptoms)
Thank you for posting—this shed light on my own bouts with hypersomnia in my early twenties. In my case, brought on by Major Depressive Disorder. A normal night's sleep for me was 12-14 hours, and on three occasions I slept 24-26 hours uninterrupted. I cannot begin to describe how disorienting it is to wake up a full day after you went to bed. For me, the hypersomnia melted away when my MDD was under control, and it's heartbreaking that some of these folks in the article can't find relief as "easily."
"Sometimes he fought the constant pull of sleep, forcing himself to socialize when his mind was in a fog. But by denying his problem, he sometimes put himself — and others — in dangerous situations. One day he was cruising toward the mountains at 100 miles an hour on Red Bull, his large, cherry-colored motorcycle. One moment he was staring at the lush, green foothills ahead; next thing he knew, an older woman on a bike slowed down in front of him to make a U-turn. He tried his best to stop, but couldn’t, crashing into the back of her bike. They were both thrown to the ground. She was injured badly, bones visible on her shins and hands. Lloyd had only a few cuts and bruises, but he was rattled. How had that happened? he wondered. Did I zone out?" What an asshole.
I had a similar reaction, but it's very hard to know whether this tells us more about the subject or the writer. The way it's written, it makes him sound more worried about is own situation than the person he nearly killed riding at 100mph, but the writer or the editor might have decided that the details of how the accident was handled were too much of a digression from the main story. It's always a problem with heavily narratized journalism, which is more emotionally engaging but at the price of treating subsidiary characters in the story as mere props in the protagonist's story of medical-self-discovery.
An injury like that to an elderly person in a non-advanced country probably was fatal. Maybe not right away, but falls are one of the largest killers of the elderly, not from the fall, but from the after effects.
Hi anigbrowl, abrak, ars and others. My name is Lloyd, I'm the guy in the article. I read your comments and wanted to share a little bit more of that particular experience:
- I shouldn't have been driving, and I regret that accident to this day. Even though I'm responding so much better to treatment now, and at points I have tried to start driving again, at this point I am not driving. Virginia (the author) asked if I plan to drive again soon and I don't. It feels like the fastest way for me to cause harm to others is getting behind the controls of a vehicle :( I wish I had worked this out sooner and without an accident. I mostly walk or rely on public transport or lifts with friends now, although on my better days I ride a push bike when I can stick mostly to cycle paths.
- Speed and my poor cognition were the main factors in the accident. It was my fault entirely. I was trying to catchup with friends who had left on the trip a few minutes before me. The older woman was traveling slowly in the far left lane and came over to the far right lane to do a U-turn at a signed U-Turn point. I don't remember her indicating or checking her blind spot, but that is "normal" behaviour on Thai roads and given my speed wouldn't have helped any. After the motorbike collision we both got to the side of the road. Several vehicles stopped and helped us pull our bikes off the road too. The police arrived, as did paramedics, and she received first aid at the scene and was taken to hospital. My understanding is that in Thailand the Kingdom provides healthcare for people involved in traffic accidents. It's funded from vehicle registration I think. The Police took my ID and the police requested money to pay for her damaged motorbike, which I paid. I saw them hand it to the woman directly so I don't think it was a bribe. The article makes it read like my thoughts immediately went to myself, they didn't, they went to dealing with the immediate situation. The thoughts and reflection about what had happened came later.
- There's lots of things I would have done differently if I had known this condition was in my future. I definitely would have stopped driving sooner. I also would have communicated my health better to the people around me. For a long time I had the belief that, "they'll find what is wrong and I'll get better". I didn't expect that they would find out what is wrong and it would continue to be a permanent ongoing condition. Because of that I strung people along by saying I would be able to do things "soon", when in reality I wasn't going to be able to. At that point in my life I didn't appreciate yet just how much this was impacting my ability to do "normal" things.
- Traffic accidents seem very common for people with Idiopathic Hypersomnia. A year~ ago someone shared that they were in a traffic accident where they fatally injured a pedestrian. Others have stories of leaving the highway at speed in single vehicle accidents. It's common for further medical investigations after accidents like that to lead to a diagnosis. It really sucks, especially for those who haven't done anything wrong who get injured/killed.
Thanks for reading the article and discussing it. I hope the article helps raise awareness about this condition and allows people to receive diagnosis faster and prevents things like this happening more often.
Yeah, my first thought on finishing the article was "Gosh that's nice for you, but I'd like to know what happened to the old lady you maimed while driving like a fucking maniac."
As ars say above, falls in older people kill a lot of them within 2 years.
If you're over 65 and have an unplanned admission into hospital you're probably not going to end up back at your home. Only about 1 in 4 people end up back in their homes. The others die or end up in nursing or care homes. (This is in England; it might be different in US, especially with the medicare distortions which mean much more money is spent on people over 65).
That was kind of my reaction about half way into this story. I can't say his career as a life coach hynpotherapist who charges $40K a week makes him easy to sympathize with either.
A bit off topic, but the characterization of narcolepsy in the article is a bit off (my ex had narcolepsy):
"Narcolepsy is characterized by sudden bouts of sleep, and caused by a lack of a brain hormone called hypocretin. Lloyd longed for this kind of clear explanation for his combination of ambiguous symptoms. But he knew he didn’t have narcolepsy. Sleep didn’t hit his brain like a bolt of lightning; it was more like a slow, thick fog."
That's really only describing cataplexy, which is one symptom of narcolepsy, and one that not even everyone with narcolepsy experiences (only about 70%). That's the flashy one that people associate with narcolepsy where the person appears to just fall asleep out of nowhere, often as a reaction to emotional excitement (fright, happiness, etc. Every once in a while I'd make my ex laugh so hard that she'd have a cataplectic attack). Even cataplexy really isn't "falling asleep". It's more of a sudden muscle paralysis. They remain fully conscious, but collapse and can't physically function for a while.
The main symptom of narcolepsy that takes its toll on day to day life is "excessive daytime sleepiness" (that's the technical term), which is basically just feeling tired and sluggish pretty much all the time, sleeping a lot but never feeling rested. Pretty much the same symptom that IH and sleep apnea patients have.
The difference is that with narcolepsy, the immediate cause of those symptoms appears to be poor sleep (which in turn is caused by something deeper and less well understood). Narcoleptics basically don't get deep sleep cycles like the rest of us; they go straight to REM and miss out on slow wave sleep. If you fix that, the symptoms go away. One of current drugs for narcolepsy is sodium oxybate (tradename Xyrem), which is basically GHB, a heavy sedative. That sounds pretty counter intuitive based on the symptoms (give sedatives to someone who's too tired all the time?), but makes sense when you think about it letting them get proper deep sleep.
Anyway, I'm not questioning the diagnosis in the article (I'm sure the doctors did the usual sleep latency tests and ruled out narcolepsy), but I just wanted to clear up a bit. If anyone's reading the article and has similar symptoms, go talk to a sleep doctor.
> They slept too much, but even in the hours that they were awake, their brains weren’t clear. They used terms like “sleep drunk” and “brain fog,” and talked about how hard it could be to stay focused and alert.
Is that feeling really rare? I have that feeling every morning. Thankfully caffeine clears it up for me. But if I skip my coffee it lasts for hours.
Now imagine that the feeling doesn't go away whatever you do.
I have similar problems and on a days like these, coffee doesn't help. It makes me alert, restless, anxious, wanting to run around and feel my heart beat strongly if I drink enough of it, but brainfog remains.
As someone who's been diagnosed with hypersomnia after several doctor's visits and sleep studies: that's correct. The fog very rarely goes away.
There's the occasional good day that comes once every few weeks/months to remind you of just how bad things are, but otherwise it's just constant fog.
Similarly to depression, things like a good diet, regular exercise, a regular sleep schedule, a bright light as an alarm clock all help improve things somewhat. Ritalin also helps if your heart can handle it.
I wasn't trying to suggest that regular sleep deprivation is as bad as what the article describes. The language and scare quotes made it sound like they were explaining "sleep fog" as a new concept.
OT: I usually avoid links to articles on medium.com as past experience has lead me to believe they were generally all headline with very little substance. This article was excellent and sucked me in. Almost wired.com quality. It ends a bit abruptly but that probably reflects the current state of the research. Looks like I might have to reconsider my bias against medium.com.
It's also interesting how much stigma there is attached to a disorder like this, because of how it presents. Obviously, if a person can't wake up, they're lazy or malingering, or their diet is off, or something. As much as anything, the social aspects around the disease make the identification and treatment very difficult.