Does Idiopathic Hypersomnia Exist?
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- Опубліковано 4 жов 2024
- Andy Berkowski, MD of ReLACS Health explains the diagnostic term idiopathic hypersomnia (IH), how it is diagnosed, and why the test to diagnose the condition, the multiple sleep latency test (MSLT), may be misleading.
For more information, read his blog post on this topic: www.relacsheal...
Sorry, if you had it you would know that it exists. It came on quickly, and is causing me great distress. I know there is something wrong.
Just because you can’t measure it, doesn’t mean it doesn’t exist!
As someone who has been diagnosed with severe idiopathic hypersomnia, I firmly stand against your view. Pain can't be measured but we know it's there. I understand how it's hard for people to understand IH ... but I can't begin to convey the life altering torture this is. I want there to be something, ANYTHING, that can be done. I'm literally losing my life from this.
I was on a path of excellence, working in high fashion, key negotiator of multi-million dollar international contracts... being able to run my business effortlessly, directing my team in the hallways while walking to my next meeting presenting sales data to my C-Suite... imagine Devil Wrars Prada. Not too far from the truth...
my body literally ACHES from exhaustion and a sleep attacks regularly take me down. My mind is like having a veil covering my thoughts and every ounce of your being struggling to stay awake.
I hope you never have this. I hope that, instead of presenting in a video from the place of judgement, that you see how debilitating this condition is and how it ruins lives and present yourself from a position of compassion for people who are hanging on by a really thin thread
Sorry to hear about your struggles.
As I have commented elsewhere, the vast majority of people diagnosed with IH have identifiable (non-idiopathic) causes of sleepiness but clinicians have not taken the time to investigate properly. Instead there is a reliance on a poor quality, but profitable test (MSLT) with results that are imprecise and non-specific to any condition. Then everyone is lumped into a group and called idiopathic hypersomnia and given wake-promoting or stimulant medications. There are likely numerous exceedingly rare conditions that have yet to be discovered. However, for the vast majority of those diagnosed with IH, there is a non-idiopathic cause that waits to be identified, but for the issues with medical system and this field.
It certainly sounds like you fell a LONG way down due to IH. I can totally relate. I'm a fellow IH'er and I feel for you. Its very hard to look at where we were, the possibilities we may have had if things were different, and where we are now. I was on the road to flipping houses (3rd one) when I couldnt take another step. I now live in an ok mobile home (I know...YIKES!) but im right on a beautiful lake in the country. Not what I pictured and as hard as it is to adjust...sometimes I remember - I'm still way more fortunate than the majority on this planet. I dont mean for this to be a pious lecture. I only hope that when you feel robbed, as I still feel quite often, that it can creep into your thoughts that maybe you are still kind of ok in spite of IH. Not very eloquent but I hope the feelings behind this are coming thru. xo
@@meowpurrkat I agree - IH (along with other comorbidities) was a quick, swift kick to the ol' nether region LOL - BUT - I landed somewhat ok. I am still able to work. I have a home, food, clothing, and definitely still count myself as one of the fortunate ones. I'm truly sorry you are stuck in this mire as well
@@andyberkowskimdThat’s why lumbar puncture is being conducted after Polysomnography and MSLT.
I'm sorry to hear about your struggles. I've had RLS (restless leg syndrome) for three decades now, and it has been a horror show for me in all areas of my life - I'm there's a lot of overlap in our stories as many of my dreams have crumbled due to persistent daytime sleepiness *often* to the point where I am unable to function (it sounds like yours may be even worse). Like you, I count the fortunate things in my life with gratitude, and I'm so well aware that so many have more burdens. I'm at a phase now where I'm trying to face into the research and remedies with focus.
I want to be fair to this doc and say that between 2:45 and 3:45 he does make clear that he's talking on at the 30,000 foot level, at the population level, only about a rigorous scientific definition based on current testing and knowledge. He *does* allow for there being individual cases such as your own which is obviously so real for you and without a discernible alternative cause. I think your first comment amounts to a "hot take". I get it. So many people in my life could not and would not fathom or accept this thing called RLS, and their denial, and my own doubts, has been sooo painful. now RLS is fairly well known, and I'm glad for that.
On the other hand I have seen, over the past decades, many misdiagnoses, lazy diagnoses, and uninformed diagnoses in medicine (and my ex, a nurse practitioner, told me innumerable stories of structural and individual misdiagnoses and mistakes). So it is easy for me to conceptually understand and accept that something like the MSLT can be misused and lead to mislabeling.
I hope you're able to focus on your condition, access top healthcare, and that there is a resolution or at least improvements over time. I hope this for myself as well.
Idk how they do it where you live, doctor, but in my country, IH is only diagnosed by elimination through tests. It's pretty much given when all options have been checked out. And it's not from 9 to 10 hours of sleep, it needs to be around 12h or more.
That just sounds like bad diagnosis.
I was diag with IH with 12h of sleep when relaxed everyday for all my life. I didn't know I had any condition, I would just inadvertantly sleep all the time everywhere since I was a baby.
Stimulants don't work as intended and small dosis has many side effects. Only wakix system worked for me, but only fixed to drowziness. After 25y, I found out what it meant to be awake. Sadly, it didn't fix my amount of sleep (remained from daily 12h to 20h bouts). It just made my states (awake/sleepy) much sharper. So I'd basically immediately shut down as soon as body was tired.
All blood tests are good. Routine is solid. Feeling relaxed. No change whatsoever. Only stable 12h. Stress ramps the amount up ! You can guess I cannot work properly under these conditions.
I have to agree with the GABA theory on those rare cases (that 1%) cuz of how wakix worked on me (opens synapses intake), and how some experimental meds worked on others with similar symptoms.
No day passes without me wishing I didn't "waste" my life away sleeping and feeling drowzy all the time... I'm convinced my type of IH has a neurological cause of sorts or smth in how my body/brain chemistry functions inherently tbh.
Thanks for sharing your story. Hopefully, some day scientists will figure out specific and rare biological causes of what is now lumped together and called "idiopathic". The field of sleep science still does not have a good idea of even normal variations of sleepiness among individuals, such as those who sleep 5.5 hours a night and don't feel sleepy but others who are 30 minutes short of 8 hours feel really drowsy. In the U.S., doctors have so little time to see patients and to rule out natural causes of sleepiness that they rely on the MSLT, which only tells how fast someone falls asleep on that day and under the specific circumstances of that day. It does NOT tell what is causing the sleepiness. The test results can be different nearly every time it is administered because each day the circumstances are different leading to different results:
Lopez R, Doukkali A, Barateau L, et al. Test-Retest Reliability of the Multiple Sleep Latency Test in Central Disorders of Hypersomnolence. Sleep. 2017;40(12). doi:10.1093/sleep/zsx164
Ruoff C, Pizza F, Trotti LM, et al. The MSLT is Repeatable in Narcolepsy Type 1 But Not Narcolepsy Type 2: A Retrospective Patient Study. J Clin Sleep Med. 2018;14(01):65-74. doi:10.5664/jcsm.6882
Unfortunately, with reliance in the U.S. on the MSLT and not thoroughly understanding a patient's sleep, the vast majority of patients are labeled as having a rare, unknown, and unnamed condition called idiopathic hypersomnolence, but actually have common and potentially reversible causes of drowsiness that are being missed. This is what we call a "diagnosis of exclusion" in medicine, but in this condition, the other diagnoses are rarely excluded.
@@andyberkowskimd????
Isn’t it proven that rare subset of people have short sleeper gene?
Isn’t it known that the need for sleep is depends on many variables like age, genetic, lifestyle, effiency of the bodily functions of that individual?
Why are you trying to find/prove that everyone has to be sleeping at a specific hours?
......
There is a short nocturnal sleep time IH subset as in 12h
Are you still taking wakix? How is it working out? I got prescribed Xywav about a year ago and for the first time in over 20 years I actually feel like I have a life…most of the time.
9 or 10 hours would be bliss, I can go for 14 or 16 hours if not checked
The comparison between a medico with a shift work disorder and a person diagnosed with IH is flawed. A medio in a hospital chooses to work in this way. They follow their passion and work in a system that induces a shift work disorder. However, a person with IH is not usually working in a shift work environment and still has the severe sleepiness. Anyone can get a shift work sleep disorder by doing shift work. However if they were to recover and go back to a normal day/night schedule, their sleepiness levels would reduce/normalise.
I am diagnosed with IH. If I could simply change my work patterns to reduce my sleepiness, I would. I strongly dislike this disorder and the affect it has on my life. The two things that help, excluding medication, is blue light (the sun) and napping.
Sorry to hear. The vast majority of patients diagnosed with IH have irregular sleep schedules (or patterns not consistent with good sleep quality), obtain insufficient sleep for age, take medications that cause drowsiness, have depression or anxiety that leads to poor sleep quality, and numerous other causes of sleepiness, but often these causes are not investigated as this requires time and certain testing (e.g. actigraphy) not covered by the US insurance system.
The rare handful that do not fit into the above categories may have a rare condition, likely several different exceedingly rare conditions, yet to be discovered. The most prominent group investigating IH at Emory believes they have found a defect in a chemical in the brain called GABA that lands in a shipping port called GABA-A that causes the brain to be sleepy:
www.science.org/doi/10.1126/scitranslmed.3004685
However, other researchers have failed to show results that support the Emory conclusions:
onlinelibrary.wiley.com/doi/10.1002/ana.24710
Moreover, the largest group of patients at Emory, which probably studies this the most in the US has only 100-200 patients in their research studies, but there are thousands of patients diagnosed with IH everywhere you look. It means that even their group of IH has little relationship to the thousands seen at other sleep centers. The problem is that the field created several diagnoses based on results from a test and not biology, and it turns out the test is not very precise:
pubmed.ncbi.nlm.nih.gov/29198301/
pubmed.ncbi.nlm.nih.gov/23946709/
jcsm.aasm.org/doi/full/10.5664/jcsm.8884
@@andyberkowskimd I understand what you are saying but I do not agree with you.
If you believe there are other rare conditions to be discovered, what are you doing about it? What medical research are you working on? What grants have you applied for to fund the research required to find these other rare conditions? What alternative testing methods have you discovered for IH?
@@andyberkowskimd How about IH patients who have been ruled out by all sleep disorders have nearly perfect sleep schedules, getting normal range of sleep, do not take medications, do not have depression or anxiety. Would you disregard these patients that it could not be IH?
@@andyberkowskimdHmmmm Andy so the retest that done on 13 patients with IH without even measuring the activity of that “sleepy juice” peptides disregard the study that is done on 200 patients??
Also the last 3 citations you made it seems like it targeted to the GABA theory. Those 3 on MSLT accuracy are not ideal we know everybody knows your opinion is not revolutionary you are just an MD.😊
i love this video. i am 17 and just got diagnosed with IH. it was a journey, though. i started heavily sleeping around 15 and was missing school and activities. this led me to develop depression because i could NOT put together why i was so different from everyone else. i tried to tell doctors so many times that it was the sleep that made me develop depression, but they never listened. they always told me i was depressed and that sleeping a lot is just a symptom, even though i slept a lot first. i finally found a doctor who listened to me, two years later. i did a sleep study and got diagnosed with IH. i am on Xywav and am doing soooo much better! in the fall i will be starting college as a Neuroscience & Biomed engineering double major on the pre med track. i have been terrified that i wouldn't be heard and that i would suffer in college, but i am so thankful that my last doctor listened to me. i can finally go to college feeling energized and awake, getting to achieve my big aspirations in life. i was sleeping anywhere from 14-17 hours a day, but now it is 11-12, which is still a lot but it has made a drastic change in my life. i mustve seen 7-8 doctors, but only one listened. physicians need to listen to their patients more and more, because sleep disorders are so real. i have heard countless stories of physicians writing it off as depression, when that is not the case. anyway, enough about my story. loved the video and just wanted to share my experience
Thanks for sharing your story. There is no replacement for spending time with a patient and getting to know them in more detail. The harms of 10-minute clinic visits are numerous.
Your story is relatable I had to take a gap year in medical school due to IH. Nobody understood/believe us they just labeled us as lazy. What was your IHSS and ESS score,prior and after Xywav? how much does it help with sleep inertia?
Have you tried Clarithromycin/Flumazenil/Baclofen by any chance? if so how was your experience?
But can the medicine you take keep you awake every day? Or do you still have symptoms of very severe sleepiness like before undergoing treatment?
‘Other common causes’…… if it was common causes it would be easy to pinpoint. So are doctors diagnosing IH incompetent?…… because it certainly isn’t the patient diagnosing.
Shift work & sleep deprivation shows up in PSG & no MSLT should be performed the next day.
Believe it or not, common causes are hardly ever excluded, mostly due to the sheer lack of time doctors have now to see patients and figure out causes. In a 10-minute appointment, they can ask a few questions on a survey and then reflex to a PSG-MSLT, which is highly profitable to the sleep center.
@@andyberkowskimd believe it or not, most people spend on average 8 years snd over 10 doctors before getting an diagnosis. First they are told: loose weight, depression, thyroid, hormones, etc…. Very few are ‘reflexes’ to PSG/MSLT in 10 minutes…. Where are you getting this from? IH is not an easy diagnosis to get.
@@ChavonneLit took me 2 full brain mri’s, a full body scan with contrast, 3 polysomnagraphs, 2 mslt’s, a genetic test, all sorts of blood work, a medical watch I had to wear 24/7 for two weeks, a neurologist, 2 psychiatrists, 4 doctors from a sleep clinic, 2 primary care physicians, trial and error of several medications, in total 4 years to get the diagnosis. I originally had narcolepsy type one but it didn’t quite fit. Im now at Emory which is one of the leading sleep centers in the world and have directly spoken with Dr Trotti as he mentioned. Yeah im not sure what he means because you cant usually convince insurance to pay for an IH diagnosis. We have had to default to the original narcolepsy diagnosis in the past because it was more likely to get covered. Not exactly a profitable diagnosis either… especially since it’s indicated to be less common than narcolepsy. I do agree in the sense that I expect new understanding of the brain that new diagnosis will be produced and in turn reduce the number of individuals under the ih umbrella- but that’s anticipated in an idiopathic diagnosis and doesn’t inherently mean the diagnosis is bogus. Sorry im not ranting at you this video just rubbed me wrong.
You sound so much like doctors in the 90s... when Fribromyalgia was considered the hypochondriac's disease....
For my first sleepy study i was called in a few days early bc they had an opening. I took all my medications that day, 80 mg adderall 200 mg provigil b12 D3 plus other meds non related. (I have fibro ptsd adhd anxiety). The sleep study was to see if i have sleep apnea (i dont) i slept for 406 min and 169 of that was REM.
I went off my stimulants for 2 weeks for my MSLT. in every nap i fell asleep in under 4 min.
How are you going to tell me that you dont think this disorder is real?
I agree completely that MSLT is pointless in diagnosing someone who cannot become rested (IH). Your assertions about "long sleep" are silly - IH doesn't mean 10 hours of sleep won't cause restedness, it means NO amount, normal length or not will. The body's reaction it insufficient is to struggle for more, and if you can't grasp time sleeping doesn't measure becoming rested then you are so far off the mark you'll never get it. I disagree completely with the bizarre assertion that some "common causes" underly most IH. I guess you think the Mayo clinic and 10 doctors over 20 years would miss such an obvious "common cause." Idiopathic means you don't understand it - so don't suddenly decide you have a nice simple list of causes and then take people's $$$$ and leave them no better off. When you don't know try saying "I don't know" - if you can't nobody should respect you.
There are many cases in which hypersomnolence is truly "idiopathic" and clinicians have done the appropriate analysis with attempts to optimize sleep. However, this is the vast minority of cases. The MSLT generates a lot of revenue for sleep centers and does not provide much insight into the causes of sleepiness. It tells "how much" and only on the day of the test, but not "why."
The majority of patients diagnosed with IH have identifiable causes of an abnormal MSLT including having insufficient sleep, irregular sleep schedules, taking frequent naps, being on drugs that cause drowsiness, withdrawing from drugs that cause alertness, and even having the test administered at the wrong times. There are so many variables that affect the test results that the results often change each time the test is administered. This is one recent example, but others are found in other comments:
www.sciencedirect.com/science/article/pii/S138994572300271X?via%3Dihub
If the biological basis for a condition remains unknown and there is no objective, biological test, then the condition is called a diagnosis of exclusion. If all known causes have not been excluded appropriately, then the idiopathic condition cannot be made.
I wonder what your thoughts are on patients for whom more common causes of hypersomnia HAVE been investigated and ruled out? Or patients whose MSL score is much lower than the eight minute threshold?
Why didn’t you mention its comorbidities?
If you want to make a comment on MSLT as a non-effective diagnostic procedure for IH, you could have convey your message differently. But it seems like you dismiss those who actually have IH, usually we have been ruled out by other causes(OSA, Circadian rhythm disorders, KLS, secondary hypersomnia from meds, hormonal, bloodwork) prior being diagnosed with IH. 😠
If only people would understand how deliberate it makes you feel.😢
Unfortunately, sleep clinicians rarely have time to rule out common causes of sleepiness and jump right to ordering an MSLT, in part because it takes time to figure out causes of sleepiness and also because the MSLT is highly profitable, which never discourages anyone from doing it. A sleep testing device called actigraphy is essential to tracking sleep patterns prior to these tests, but it is rarely covered by insurance and thus rarely done.
The purpose is to educate clinicians and patients alike that conditions like narcolepsy type 2 (NT2) and IH are much less concrete than they appear, as names in a diagnostic manual among other concrete conditions. Patients should not take the diagnosis for granted and make sure that other causes of sleepiness were thoroughly investigated. Though there are some individuals who have truly "idiopathic" hypersomnolence, most are "idiopathic" because it was never thoroughly investigated by the clinician.
If the way in which IH and NT2 were diagnosed was precise, based on a solid biological foundation, the results would not change every time the tests were administered:
academic.oup.com/sleep/article/40/12/zsx164/4584523
jcsm.aasm.org/doi/10.5664/jcsm.6882
www.sciencedirect.com/science/article/pii/S138994572300271X?via%3Dihub
@@andyberkowskimd I can see where you’re coming from although I agree that MSLT is inconsistent but it is still easily accessible in clinical settings and can be used prior lumbar puncture for hypocretin level assessment and Somnogen peptide that bind to GABA A receptors. We know that there isn’t a known biomarker for IH yet. I also agree that ideally actigraph should be performed if possible for a more thorough assessment.
But the way you conveyed your message seems like you were dismissing that IH is not a real thing. All other sleep disorders have their distinctive characteristics of its own so it’s easy for patients/doctors to ruled out that with the availability of testing methods.
Instead, we should seek for more understanding of the common IH comorbidities and assessing how the drug Sodium Oxybate effective in this group of patients(by retrospectively understanding how the drug actually improves the symptoms, perhaps it could lead to the understanding the underlying pathomechanism of IH).
Maybe IH severity is positively correlated with the severity of dysautomia or maybe not.
It sure feels like it does
Classic idiopathic hypersomnia was identified way before Bill Dement came up with the MSLT which as he, and you, stated was designed for T1N. bedrich roth identified people within his large narcolepsy cohort as having different symptoms from narcolepsy (and he identified narcolepsy as only with cataplexy). He relied on the identification of symptoms which are completely lacking from the current ICSD-3 criteria which seem designed to identify anyone who is sleepy and not with either form of narcolepsy as having idiopathic hypersomnia. I've spoken to people with insomnia, light sleepers, insufficient sleepers, and others with unexplained EDS who have all been diagnosed as having an "idiopathic" hypersomnia which is half the problem. doctors need to be specific in what they're diagnosing to stop patients getting the wrong end of the stick. Sonka's meta analysis identified T1N and IH with long sleep as separate disorders but a biomarker is needed. Sadly, hardly any research is going on in IH, most is still going on in the world of narcolepsy. I agree it is overdiagnosed, and driven by the poor diagnostic criteria, the need to sell medication (anyone for oxybate?) and the insurance industry/doctor relationship in the USA which lives off the MSLT test. I agree that too many people receive an IH diagnosis, and have queried mine, though I believe I fit Roth's original criteria. Interestingly I live with someone with T1N and our sleep is very different, both at night and how we feel in the day and my sleep drunkenness is a horror to behold, whilst her full body cataplexy is something I'd never want to have. Do continue with these videos and blogs as it is refreshing to see an established sleep doctor querying the norms and challenging the current diagnostic picture. Btw, if Dement was the father of sleep medicine, then Roth was the Grandfather, but not being american, he never got the fame he deserved.
Very well articulated. There probably are several extremely rare biological causes of "IH" running a spectrum of severity levels that have yet to be identified. However, in those in the 95%+ currently diagnosed with IH who have actual known causes of sleepiness, sleep clinics should be properly figuring out and managing the underlying causes rather than masking them with stimulants or sedatives, which may be reserved for some with NT1 or those with a truly "idiopathic" causes of sleepiness.
@@andyberkowskimdYou seems to over estimated Stimulants on IHer. As Dr Rye had mentioned people with IH have their GABA receptor over activated so what’s the point of giving Stimulant if the GABA is going to inhibit the excitatory neurons? People like you don’t understand because it is not first handed experience.
Dopamin/ noradrenaline/histamine reuptake inhibiters don’t do jack shit if inhibitors are not sorted first.
Yes we know IH is not the MAIN disease itself but evident suggested strongly we have defects of ANS and CNS.
Can you give any treatment or advice? I sleep 11 hours at night yet still nap throughout the day.. I am always tired. I have tried caffeine, stimulants, and even cocaine. Yet, I am still tired and can instantly fall asleep. I feel like I’m existing and not living.. I can’t do any of the things I want to do because I am either too tired or I fall asleep without realizing. I around 15 hours a day. I could honestly sleep all day if I did not force myself to wake up. When my kids were away for a weekend and I didn’t have work.. I didn’t even wake up to eat or use the bathroom. I am literally begging for some help. I don’t want to sleep my life away.
The ambiguity and lack of information in general is frustrating when it comes to IH. In my particular case, I lack several of the characteristic symptoms of the "small subset", as you put it, who genuinely seem to have some poorly understood sleeping disorder: I do not sleep excessively-in fact, I cannot sleep longer than 9-10 hrs even after genuine sleep deprivations, I do not have sleep inertia- I'm a light sleeper and require earplugs and black out shades to sleep properly, have never slept through an alarm and mornings can often be the time of day when I'm at my most alert. Despite all of this, I am extremely drowsy and sleepy throughout the day to the point where I have had to deny being high on more than one occasion. What I feel is real and debilitating but I don't even get to have a toothless diagnosis like IH because I don't meet the MSLT criteria. Makes me wonder how many hundreds or thousands rare disorders must exist that we aren't even aware of.
We have a long way to go and a lot more research to be done. Throwing a bunch of individuals into a category called "IH" and giving stimulants as a treatment is likely not the best. There are numerous causes of sleepiness yet to be figured out. However, there are numerous causes of sleepiness like poor sleep quality ua-cam.com/video/Jotr6AQFPkY/v-deo.html and inconsistent sleep patterns ua-cam.com/video/gI627q9Zsok/v-deo.html that are known causes of sleepiness that are neglected due to lack of time with patients and reliance on diagnostic testing for insurance reimbursement (e.g. MSLT).
Hello Dr Andy! I have all the signs that you discussed and would be interested in doing further research on this matter to see why it is caused and if there is a better treatment than stimulants, such as modafinil.
A possible resource for trials for hypersomnolence can be found at the Hypersomnia Foundation website:
www.hypersomniafoundation.org/research-studies/
Sadly, by definition they cannot tell you a cause. If modafinil does help you, then at least take some comfort - as that means your condition is mild. If it worsens then a better stimulant will be needed to keep you safe. Good luck.
What if it's actually transmitted from bedbugs or flies.... eerily similar symptoms to "Trypanisoma" sleeping sickness... In America the medical professionals go to great lengths to either control the symptoms, rename the very illnesses and lump them into categories of the mysteries of autoimmune or gaslight the patient dismissing the issue. I bet if you went to another country and described your symptoms the diagnosis would be different.
Not sure I understand completely, but labeling a patient as "idiopathic hypersomnia" is essentially dismissing the true underlying causes of excessive sleepiness. Some of these causes may be common like irregular sleep schedule, taking substances/medications that cause sleepiness or disrupt sleep quality, etc. Some may be caused by rare infections or autoimmune illnesses as you have mentioned, though little research has identified these (but maybe because no one is looking?). The condition is not diagnosed or identified by biology but by a test that is done primarily for reimbursement from insurance. Spending the time to figure out the real cause of sleepiness earns 10 cents on the dollar at most compared to the MSLT.
When my mom was pregnant with me, I only "moved" from about 10pm - 1am. My ENTIRE life that has been my most alert time. Am I to believe my sleep hygiene and medications I took as a fetus were the problem? 🤣 I have IH. My CSF has proven GABA A potentiation. I have been debilitated by GABA A agonists (Topamax and neurotin gabapentin) because I didn't know they were GABA A agonists when they were prescribed to me. Every side effect those can have per labeling, I immediately experienced, so whether you think Emory's research was right or not, the assay proved with my CSF I react like someone that is sedated even when I'm not and Flumazenil and clarithromycin (GABA A antagonists) improve my wakefulness. Additionally, I do not get stage 4 in my sleep study. This is a neurological issue and obviously nothing is truly idiopathic at the end of the day, but it is until you find the root cause, which no one has. Do you also tell narcolepsy patients to turn off their phone screen to feel refreshed? 🙄🥴🫡 And you compared MSLT results to shift work... Ummm the MSLT requires a full night sleep with PSG BEFORE you do the MSLT. This condition does exist. If people are misdiagnosed, it's the fault of the sleep center doing PSG & MSLT improperly or interpreting then improperly. You're spreading a whole mess of disinfo and gaslighting people with a neurological disorder that they can't fix with sleep hygiene and essential oils. Stop.
GABA-A receptor overactivity is really the only ongoing biological mechanism that has had some evidence that is being investigated thus far, but 99% of those with IH have not been tested for this.
Hundreds of patients are diagnosed with "IH" who are on drugs that cause sleepiness including gabapentin, topiramate, benzodiazepines, muscle relaxants, antipsychotics, sleeping pills, etc. Hundreds of shift workers or those with similar sleep patterns get a PSG-MSLT all the time as sleep centers rarely monitor sleep prior to the sleep study. There are so many confounding factors that the diagnosis changes frequently every time the MSLT is performed. Here is one of several studies illustrating this:
academic.oup.com/sleep/article/40/12/zsx164/4584523
The purpose of the video is not to criticize those with IH but to alert those who have been diagnosed that "IH" is not concrete and to have healthy skepticism about whether their clinician investigated causes of sleepiness other than going through the motions.