i just found out i might have this disorder. I almost flunked out of college, i gotten fired from multiple jobs because i was unable to wake up and clock in. So many people don’t understand it and just assume i am lazy and i don’t care and that im not trying. It has torn apart my mental health. I’ve recently seen a doctor and im about to get a sleep study done, im so excited to get medicated for it and get my life back together
Trying to live a decent life, but I am always unbelievably tired. I have been diagnosed with hypersomnia, but also hit all but one criteria for narcolepsy. Either way, I need help. Can you PLEASE tell me what waking agent you were given??
I have done literally every stimulant/medication for IH, here’s a list: Modafinil & Armodafinil - These are waking agents which stimulate your central nervous system and keep you awake. Ritalin & Vyvanse (Adderall falls in this category too, but I can’t take it) - stimulants that speed up the transference of messages between the brain and the body. Essentially these increase awareness and focus while the afore mentioned waking agents increase wakefulness. Sunosi is a newer stimulant developed specifically for sleep apnea and narcolepsy. But, because it’s intended use is for those specific conditions according to the drug manufacturer, US insurance companies are unwilling to cover it for IH even though it is an effective and safe treatment for it as IH is treated almost identically as narcolepsy type-2. This is the only medication that has worked for me (every other medication either did nothing and/or I had horrible side effects). SSRIs (antidepressants) have also been noted to have a slight positive impact in patients with narcolepsy, specifically in the reduction of hypnagogic/Hypnopompic hallucinations and sleep paralysis. These medications affect the onset of REM so can alter the results of a daytime nap test and sometimes, although not often, result in a misdiagnosis of IH instead of N2.. I also am diagnosed with IH but often exhibit symptoms more akin to narcolepsy when I am sleep deprived (ex hallucinations, sleep paralysis, vivid dreams, sleep disturbances due to said dreams and hallucinations, slurred speech, facial droop, limb weakness like that seen in partial cataplexy and even have episodes somewhat like total cataplexy in the fact that I lose muscle tone where my body enters REM sleep and becomes paralyzed but my mind stays mostly awake and aware, but the onset is somewhat slow, doesn’t have an emotional trigger, and these episodes last anywhere from 20-45 minutes, hence why it’s not actually cataplexy.) The reason it’s not narcolepsy for me is bc it’s not due to a chemical imbalance but linked to sleep deprivation which I am more prone too due to my long sleep requirements as well as comorbidities that effect my sleep quality and duration (chronic pain, PTSD) and my nap studies are more akin to IH than to N1/N2. Additionally, the irrepressible sleep episodes (aka falling asleep in low energy settings), feeling unrefreshed after naps of any length, severe excessive daytime sleepiness, and sleep inertia/drunkenness upon waking is almost exclusive to IH and not usually seen in N1/N2. So maybe all of those factors could be why you have an IH diagnosis instead of N2? Because of my specific expression of IH and the similar symptoms to N1/N2 I have my doctor had to do a whole bunch of extra studies and having me carefully track and describe my symptoms, specifically the paralysis like episodes, to figure out exactly if it was IH and not narcolepsy lol. 🥴 Edit: sorry this is kind of an info dump but I hope it kind of helps lol
Modafinil 200 mg, dexedrine 5 mg, but am gunning for more. Lots of coffee and will power. It is tough. If anyone sneers at you ignore them. I am very lucky bc I work 40 hours a week and sleep my weekends mostly away. Blessings, Best Wishes and all that good stuff.
There is a real need for "classifying" the idiopathic hypersomnias out there. One thing is not knowing what causes it, another is noticing how it behaves. There are some where stimulants work WONDERS ! And others where they don't work AT ALL... In my case, I think it's neurological in a way, which is probs why stimulants (modafinil, coffee, etc) haven't worked at all, but pitolisant tablets I actually had certain success with. They messed with receptors directly. Sadly wasn't a cure either. It made my condition simultaneously better AND worse. But that's one good clue as any.
I HAVE THE SAME PROBLEM. ALWAY TIRED EVEN AFTER 8 HOURS SLEEP. CHRONIC DAILY SLEEPINESS , FATIGUE, DEPRESSION, ANXIETY EVERYTHING. WAITING FOR DOING MY SLEEP STUDY AT 33 I SHOULD HAVE DONE IT BEFORE. STIMULANTS RESOLVE THE EFFECT BUT NOT THE CAUSE. I THINK WE ARE ONE HUNDRED YEARS BEHIND A CURE FOR THOSE ILLNESSESS. THE MAIN CAUSE COULD BE AN ANOTHER PROBLEM BUT STILL IT'S A TERRIBLE ILLNESS.
How do you convince your sleep doctors to give you something to stay awake when you have been diagnosed with IH for nearly 20 years and have been suffering with symptoms for over 45 years? Last drugs I was given was back in 2016. Provigil, which eventually stopped working, and Adderall which made me more tired. Now I am told to just sleep more and take naps (both of which actually make me feel even more tired.
May be time to switch specialists… (easier said than done, I know). Are you in Aus or US? I’m from the states and can offer advice on that front. I was treated by a pulmonologist immediately following my diagnosis and they were only able to prescribe modafinil and armodafinil. Pulmonary sleep doctors usually specialize in pulmonary sleep disorders, such as sleep apnea. But IH and narcolepsy are neurological disorders. When I switched to a neurologist specializing in sleep, they had me do a gene site test to see what stimulants I could metabolize, then prescribed medication based on those results (all stimulants fell in the “yellow” range, meaning I am more likely to experience side effects or may not experience benefits. Adderal fell in the “red” category which means it is dangerous for me). Then begins the process of trying every stimulant to see if any work, if none do than you may be given sunosi (a stimulant meant for apnea or narcolepsy, meaning insurance may be reluctant or unwilling to cover it for IH patients even though it is a valid and effective treatment for it but because it is newer and not originally developed specifically for IH, it is still not considered as a possible treatment for IH by insurance companies) or a sleep aid such as xywav (puts you in a deeper and more effective sleep. Developed specifically for IH. May also reduce required sleep time if you have long sleep requirement IH). Maybe seek a second opinion from another sleep specialist clinic to see if they are more willing to try a wider breadth of treatment options. If you’re struggling getting treatment from your current doctor(s), I’d also recommend requesting they do a gene site test (if I remember it’s done via a blood draw) to see what stimulants work best for you. Then you can go from there. Here in the states, especially with women and POC, we have to self advocate A LOT unless we get lucky with a doctor that is willing to try everything. After transferring from pulmonary, I was lucky enough to be referred by my psychiatrist who also has IH to their neurologist who has been amazing in trying literally everything in terms of treatment. Sadly, the reality may also be that treatments may not be effective for you, that is how it has turned out for me. I have tried every possible treatment option and nothing has worked aside from sunosi which my insurance refuses to cover beyond that first filled prescription. I also have long sleep requirements (10-13 hours based on multiple actigraphy sessions) and am considered a more severe case. I always feel unrested after sleep and naps are unhelpful and often end in sleep paralysis and upsetting Hypnopompic hallucinations if I’m particularly sleep deprived. My reality is that treatment just doesn’t help and there are things that I just can’t do or had to give up, which sucks and took a long time to come to terms with. I essentially feel like I have no control over my body or my life due to IH. I really hope that that isn’t the case for you and that you’re able to find something that works, especially since you had success in the past it seems. I’ve only been diagnosed since I was 18 and I’m now 25 so I definitely wouldn’t say I’m an expert let alone a medical professional, but these are the things that helped me at least for a short while before hitting the wall that is insurance and self acceptance of my own disability lol. I hope maybe this helps at least a little.
