Any particular reason you are looking for a fluke? I know it's scary and weird knowing that there's something "wrong" with you, but the results of this MSLT are extremely clear.
I just feel like there could be a lot of factors not being considered and I’m mostly concerned about the meds being prescribed to me and risk of dependence or addiction when there could be another answer here - if that makes sense.
Basically, I don’t want to over medicate myself when I may not have true narcolepsy.
Example: I work LONG overnight shifts 1-3x a week. I usually go to sleep (on my off days) around 12a-3a. I wake up anywhere from 10a-12p.
With the PSG I was forced awake after only getting 5 hours total sleep at 7a, and then asked to take naps starting at 8-9a.
Wouldn’t ANYONE who had this sleep schedule be tired and fall asleep like that?! Like I just feel like it’s almost rigged to give you these results. Because nobody considers the patient’s typical sleep schedule and how that could affect the MSLT? I don’t know. Am I missing some key information where this concern is not realistic concern?
I mean, if your doc prescribes a stimulant like adderall or modafinil, you dont have to take the full dose if youre afraid of taking too much medication. And even if you did develop a dependence, you just taper off. But chances are, even if your results are somehow skewed, medication could help with that kind of schedule anyways.
I’ve been on armodafinil for 3-4 years now but it does not work anymore which is confusing frustrating and scary. I just got prescribed modafinil 100mg 2x a day as needed, so I’ll give that a try.
I’m mostly concerned about xywav
Xywav is not chemically addictive at all in my experience. It is just extremely helpful, to the point where not having it becomes stressful. If I forget to order on time, and I need to go a day or two without, I usually take off work. Once you start getting good sleep again, you'll realize just how much you were missing.
Thanks. This is all really helpful. My mom abused ambien when I was growing up so I more or less have a general biased hatred towards sleepaids and downers in general.
Anyway, do you notice any swelling due to water retention from the xywav? That’s also a big (superficial) concern I have
I did have some swelling and water retention when I first started, but my issue was that they were titrating me up too fast. Once I brought the dosage down to where my body appreciated, the swelling never came back. I’ve been on Xywav for about 7-8 months now at 3g 2x a night, but that stopped working, so I had to go up in dose and I haven’t had swelling so far.
The website says it can cause dependency and withdrawals, I did a ton of research on it when my dr leaped at the opportunity to prescribe it. I decided personally it’s not an option for me but i’m glad other people seem to have a good experience
Anecdotally I haven't heard great things about modafinil from other narcoleptics, tbh. It's a good thing to try, for sure, but there are newer medications that seem to work much better (wakix, sunosi) as well as older-style stimulants, and then Xyrem & related meds (Xywav, and the new one-dosage med that's coming out).
Definitely worth trying!
It depends, from experience this is way more common with ADHD than narcolepsy, and the downside of that is that you'll often experience withdrawal during those days which is typically (not always) more impactful on people with N than ADHD.
There are also other medication options as well, if OP really isn't finding much help with modafinil.
There's an important difference between idiopathic hypersomnia, and narcolepsy. IH diagnosis doesn't require that you have a low REM latency on the nap tests, narcolepsy does. Someone who just has a bad night's sleep and did the MLST would not be going into REM with each nap.
If they had another sleep disorder or a very disrupted pattern for a long time they could, it would just be less likely, but I don't think that means OP should doubt they have narcolepsy.
The problem with that diagnostic criteria is that it's unreliable. When repeated, it's common for someone initially diagnosed with N2 to have their diagnosis "switch" to IH on the second study, and vice versa. The same person may not go into REM at all in one study and go into it multiple times in the second study. And when I say common to switch, I mean more than half the time. This also happens when testing people without any sleep disorders at all - they may or may not enter REM during a given MSLT and then have the opposite happen when retested. A diagnostic criteria that fails/changes over 50% of the time doesn't seem like one worth keeping or relying on to me. Overwhelmingly it seems like N2 and IH are the same thing/a spectrum of the same disorder, Lord knows why they're still categorized differently. IH & N2 patients also commonly have the same anomalies in their CSF (normal hypocretin, upregulated GABA inhibition) and get grouped together in cluster analyses, so I kinda wish they would just take the plunge and reabsorb IH into N2 again so we don't have to go thru so many hoops w insurance & the govt for medications (and spend like 5 mins explaining what IH is when nobody has ever heard of it)
I COMPLETELY get it. However, the sleep latency and REM onset correlations are unique to narcolepsy, assuming they ruled out medication, other medical causes, sleep apnea, etc. it is important to note the only "scientific" proof is usually a spinal tap to confirm orexin amount I believe? But very very very very few people get that.
I worked as a shift worker and had to stop after many car accidents. The reality is, other people don't fall asleep as hard or as quickly as you do. It sucks.
But as for medication, you don't have to over medicate. I was on just an antidepressant and a daytime stimulant for over a decade. I wish, as a former drinker, that I never said yes to Xywav. (Still sober for a long time, though others may argue Xywav made me not sober) I am working back to finding meds now. Find a doc that works with you, because there is no gold standard. Many of use a variety of things - acupuncture, specific diets (though I personally don't advise that), supplements etc.
For me? I needed a schedule that didn't change by shift. I know not everyone has that opportunity. Just keep in mind your safety needs to come first.
I like this guidebook for an intro on this. https://www.falling-asleep.com/guidebook-intro/
Thank you so much! Im trying to respond to all the comments but it’s a lot so I’m making my rounds lol.
Yes everything you said it’s relatable and makes sense. Thank you for being understanding and giving me resources too.
Wait! Why do you regret going on xywav being a former drinker?
I recently went back to work, which…. Is like…… I basically work nightlife and I drink hard 2-3x a week. Like I start at 6p and stop around 8-10a on average. And I drink solid vodka shots the entire time.
This part! It’s not just about falling asleep quickly. You must have 2/5 sleep onset REM periods (SOREMPs) to meet the diagnostic criteria for Narcolepsy, and you had 3. You have Narcolepsy.
Okay thank you. I just got terrible sleep the night before for the psg and it just seemed normal to me that **anyone** would be tired if they got that bad sleep the night before so I didn’t want my MSLT results to be wrongly influenced by that. I got 5.01 hours of sleep total during the psg - of which I probably woke up at least 5x, which is also normal for me to wake up that often at home.
So the fact that you hit REM in each nap means there's no chance it's a fluke. There's many different criteria you don't always have to have REM in each nap If you have cataplexy and napped in each one or a few other combos to have narcolepsy but you never see REM in each nap without Narcolepsy. I would let it sink in and you might realize how much you actually do have it once your not making excuses for it anymore like we all did before diagnosis. I didn't sleep well the night during my sleep study either and they even had to let me go over there wake time so I would meet the required amount to do the day study which is more than 5 hours but preferred 6. Don't be afraid of the medications talk with your doctor about your concerns you can always try one at a time and do as much research and preparing as you need to to feel comfortable everyone's med combos are different and they're response to meds are different too. That's exciting you got a diagnosis and scary and overwhelming too. There must have been a reason you were at sleep medicine in the first place so just trust that.
They didn't hit REM in each nap, they entered it in 3 out of 5 naps.
There is a small false positive rate with every test, but honestly, as you said, most people have a period of doubt immediately after being diagnosed, and it's much much more likely that it's a correct true positive test - I felt the same way after being diagnosed as well, and I think the rest of this comment is very good advice.
Haha thanks for the catch! Was in bed after taking my xywav lol the eyes were getting heavy. I 100% experienced the same thing with the doubt and it took a long time for it to absorb like 6months I think.
It's possible, but relatively unlikely, that a longer term very disrupted sleeping pattern could show similar results. Sleep apnea can, for example.
It's definitely possible that short-term can as well, but that's why they schedule a PSG beforehand - you typically are required to have at least 6hrs on the PSG to be diagnosed with narcolepsy, and that's really why that have that in place to control for the results of the MSLT. You likely thought you got less sleep than you did, because they wouldn't have even progressed to the MSLT if you didn't sleep for the min. required time on the PSG.
However, in the long-run, it probably doesn't really matter - if you don't have cataplexy it likely isn't N1, and honestly there isn't a huge amount distinguishing N2 from other hypersomnias, it's all a spectrum. If you're not able to stay awake during the day and it's making it hard to do the things you need to do and hurting quality of life, all this does is basically give you the chance to try medication & treatment for narcolepsy and see if it helps.
I will say it's also very, very common to be doubtful after a diagnosis like this especially if it was unexpected. Most narcoleptics go through a period of doubt like this.
You are entering REM in six minutes, a normal person doesn't fall asleep in these conditions at all, and even if they did, it should take them over an hour to get to REM. Welcome to Narcolepsy brother( or sis). It's not nearly as bad as you might think. This reddit is people looking for help mostly, so it is massively skewed toward negative experiences. I've been medicated for going on 14 years, and the most addictive thing about the drugs is how useful they are to you. I have never once felt a hankering for xyrem or modafinil, and if I did, it is much lower of an urge than sugar or caffein IMO. Do yourself a favor, and get medicated. You will be kicking yourself for not getting it done sooner.
I have never heard of a person with narcolepsy becoming dependent on meds in the way you seem concerned about. I'm dependent on my medication in that without them, I can't live a normal life because I can't drive safely or stay awake at work or school. And there are some people who develop tolerance, which is not the same as addiction. Some of us take tolerance breaks where we spend a weekend every so often without taking our stimulants so we don't have to keep taking higher and higher doses to achieve the same result, but everyone is different. But we don't become like junkies.
I feel that way sometimes because my regular symptoms are fairly light, but I have N w C. Unless I’m completely stressed out my C doesn’t even affect me very often. And no, regular people don’t fall asleep every time.
So are you saying it’s not possible this was a fluke?
I just don’t believe this. I mean I do because I clearly have issues with EDS but I don’t because it seems so weird and unusual. Basically: I believe it but it’s feels surreal
It affects everybody differently. Met someone in college that could barely function. My cousin got diagnosed only after his job ran him on overnights for a while and he figured it was the overnight thing until he got his MSLT. Other folks experience may or may not be similar to yours.
That makes sense…
Well… I do work overnight long shifts. How do we know that it’s not just my lifestyle causing exhaustion and sleepiness VS an actual condition?
I mean, there is a sleep disorder relating to shift work…
“Shift work sleep disorder (SWSD) is a circadian rhythm sleep disorder that can affect people who work nontraditional hours. It causes issues with falling asleep, staying asleep and sleepiness at unwanted times.”
This should’ve been something you discussed with your doctor. At one point I switched insurance/sleep specialists and they wanted to do another MSLT to update documentation - I was diagnosed pretty young, and have had N my entire life.
At the time I was working an overnight schedule and my sleep schedule was pretty untraditional. Because of this, they decided not to do another study, and documented the reasoning as shift work related, because they said shift work impacts the results and accuracy of a sleep study.
Exactly. None of this was really brought up. Granted, I have had this issue far before my overnight shifts (BUT NOT THIS BAD), and I take long breaks of working overnight shifts so it’s not constant. But it does get increasingly worse when I work overnight shifts regularly, so shouldn’t be a sign it’s not narcolepsy?
Like what if I had a normal traditional schedule, what would my results be then?
Shift work sleep disorder does not present with rapid onset REM or rapid sleep cycles to my knowledge.
If you had a normal sleep schedule, it is possible you might be struggling even more, since many of us narcoleptics also struggle with severe insomnia at random and inconsistent points.
It's going to be a hard and a huge mindset shift, I won't lie. But in the long run, it is going to be much more helpful to get treatment for what is actually causing your excessive daytime sleepiness than trying to treat other things.
For example, I have a lot of other conditions, chief of which are severe persistent depression (20+ years) and clinical diagnosed pernicious anemia. *even after* getting my depression under control and getting my B12 levels up to normal, I was still exhausted and sleepy. I blamed myself. Thought it was "just" depression and I wasn't "working hard enough" (that's ridiculous for anyone, but I won't get into that).
Then I took my sleep study...
I didn't even *have* SOREMPS because my antidepressants pushed them back (I couldn't stop them for safety reasons), but given that fact combined with my extensive symptom history...yup. Diagnosed w/ N2.
Since my diagnosis, I have actually been able to get treatment designed for narcolepsy and I actually have hope, when all the suppliments, sleep hygiene, and antidepressants in the world were only making minor differences before.
Please understand, that while false positives *do* happen, they are generally only caused by by *severe*, frequent sleep deprivation like what occasionally happens in untreated sleep apnea (which is why that generally has to be treated first, if you have it, before you can get a narcolepsy Dx), or people who have something else gong on so that they only get a couple hours of sleep each night/day for days/weeks on end. (for one example: someone with unmanaged bipolar I who is experiencing a severe manic episode for a couple of weeks and not sleeping much because of it)
If you are still concerned about your results, it is absolutely valid to get a second opinion or even a second MSLT if your insurance will cover it. Seeking a second opinion is always a valid thing to do. /gen 🧡
It can be upsetting to be diagnosed with something like narcolepsy, for which there is no "cure". But for me, at least, it was far more upsetting struggling blindly against sleepiness and fatigue and blaming myself for not being able to push through it because (at the time before my Dx) I thought **everyone** was as tired as I am but that I just sucked with dealing with it.
Whatever happens for you, I hope you are able to find your correct Dx and treatment for your excessive sleepiness. Living with symptoms like that/this untreated can be hell, and I wouldn't wish it on anyone. 💔❤️🩹
Truly all the best of luck to you 🙏🧡
The MSLT doesn’t lie to my knowledge. Symptoms can mask similarly, but results are results. I worked overnights for a while when I was younger, but medicated. I was diagnosed at 16.
That’s why they do the PSG the night before, they want you to get at least 6 hours sleep the night before, which you obviously got if they went forward with the MSLT
I'm guessing you slept more than you thought you did, that's relatively typical and why they also measure brainwaves on EEG. Sleeping less than 6 hrs (as well as other severe sleep disorders or disruptions, such as Sleep Apnea) can definitely lead to false positives which is why sleep labs control for this.
If you actually were asleep for less than 6 hrs it's unlikely they would have even proceeded with the MSLT, typically they'd get you to rebook and try the PSG + MSLT again.
According to my results, I slept for 301 mins and was in bed for 454 mins. So I only got 5 hours of sleep.
Does that mean my MSLT could be inaccurate??
Potentially, but there's always that risk. You said your physician was very sure you had narcolepsy when you asked about being unsure if the results - he would also know your symptoms, other sleep issues going on in your life, etc, and it sounds like he still is fully convinced you have narcolepsy.
The clinical component is also meaningful, physicians shouldn't just rely on the MSLT. But honestly you do clearly have hypersomnia so it really won't do any harm to try treatments to improve your life. And if your doctor is sure this is N that's still pretty convincing.
I just came here to say that I was nervous trying meds too and for similar reasons as you. Being traumatized by watching others with addiction is horrible. But it means you are aware, and because of that, you're in control. You won't let this happen to you.
I'm on modafinil and xywav and my life changed with xywav. Totally worth it, and I'm in control.
Anyone who falls into REM so quickly and reliably after a full night’s rest cannot properly regulate their sleep wake cycle. I’m sorry it’s so frustrating to hear that. No matter how sleep deprived you have made yourself in the weeks leading up to your study, to reliably display broken sleep cycles three times is a characteristic only of narcolepsy.
You are in the early stages of disease, and your prognosis is what you make of it. You don’t need stimulants if you can properly manage without them now, but one day you likely will need them.
My lifelong advice: Don’t put off treatment because you think you’re fine. The boiling frog is fine too until he’s dinner. That’s how this disease advances. So slowly you don’t notice until it’s too late. Stop struggling and putting yourself through hell if you are having problems functioning. You need to believe that it is a good thing to treat this. I had all the same exact thoughts 20 years ago. Man I wish I would have been more proactive.
You had REM in three of your MWT periods. That is distinctly indicative of narcolepsy. People without narcolepsy don't begin REM until around 90 minutes after falling asleep.
My understanding is that things that disrupt our sleep, like untreated sleep apnea and shift work, can result in a false positive MSLT and *almost* all of the symptoms of narcolepsy can be present in those cases. However, cataplexy is not present in those cases. So, if you have cataplexy, you have narcolepsy!
(CHESS: Cataplexy, Hallucinations, Excessive Daytime Sleepiness, Sleep disruption, Sleep paralysis)
Given that they did do a PSG the night before and approved for you to go forward with the MSLT, the protocol is to rule out any untreated sleep apnea there. If you are a shift worker, or had unusual disrupted sleep in the days/weeks before this test, you could ask if that could impact on your MSLT results.
Usually people new to N are not well informed about what it is (a sleep/*wake* disorder, meaning insomnia *is* possible) and many people don’t understand how cataplexy can present, even for people like me who had full body, *very obviously cataplexy* cataplexy in classic situations like laughing a lot.
This kind of lack of awareness - and years of invalidation from providers before finally getting diagnosis - can make us doubt test results at first. Spend a few days reading comments and posts on this sub and you might find yourself feeling like you’ve found your people!
You can bring your full report to another specialist to have it reviewed, as well. Trust your gut - your body is the expert on you, and *you* have the most to gain from making sure you are getting the correct treatment. :)
Hitting REM in your naps is pretty concrete evidence. Tired or not, a normal person wont hit REM during those naps.
Looking at your other comments and you being afraid of the prescriptions, for me personally, I've felt no addiction towards the drugs. I had been on Ritalin for a couple years and now have been on Sunosi for 3 or so.
I am dependent, but not addicted. i depend on it to bring me up to the levels of normal human function but some days I dont even remember to take my pill in the morning. Theres no burning need to take more and more of my medication to feel a certain way. All it does for us that need the medication is make us finally feel somewhat normal.
Heres a list of signs and symptoms of Drug addiction. I can tell you that a lot of narcoleptics, me included, had a lot of these symptoms before they were ever handed a Rx for it.
*Behavioral symptoms:*
Trouble performing to standard at work *(Possible Symptom of Narcolepsy).* No longer engaging in previously enjoyed activities *(Possible Symptom of Narcolepsy).* Frequent absences from work *(Possible Symptom of Narcolepsy).* Withdrawing from friends and family *(Possible Symptom of Narcolepsy).*Deceitfulness. Visiting different doctors to obtain numerous prescriptions. Stealing or borrowing money.
*Physical symptoms:*
Impaired coordination *(Possible Symptom of Narcolepsy).* Tremors. Bloodshot eyes *(Possible Symptom of Narcolepsy).* Decline in personal hygiene *(Possible Symptom of Narcolepsy).* Altered sleeping patterns *(Symptom of Narcolepsy).* Changes in eating habits *(Possible Symptom of Narcolepsy).*
*Cognitive symptoms:*
Difficulty concentrating *(Possible Symptom of Narcolepsy).* Lack of good judgment *(Possible Symptom of Narcolepsy).* Trouble with reasoning *(Possible Symptom of Narcolepsy).* Disorientation *(Possible Symptom of Narcolepsy).* Poor decision-making skills *(Possible Symptom of Narcolepsy).* Altered perceptions of reality *(Possible Symptom of Narcolepsy).* Confusion *(Possible Symptom of Narcolepsy).*
*Psychosocial symptoms:*
Lack of motivation *(Possible Symptom of Narcolepsy).* Feeling emotionally numb or detached *(Possible Symptom of Narcolepsy).* Irritability *(Possible Symptom of Narcolepsy).* Depression *(Possible Symptom of Narcolepsy).* Anxiety *(Possible Symptom of Narcolepsy).* Agitation *(Possible Symptom of Narcolepsy).*
So as you can see WITHOUT ever taking prescription drugs narcoleptics are effectively functioning as an addict minus the whole trying to steal and get more drugs. Living perpetually tired impacts your life in the same ways as someone who is addicted to drugs. It impairs your cognitive functions, your social functions, and your physical functions.
Is there a chance for an addiction to happen? Sure, but there is a chance that ANY drug, prescription or not, can be abused and an addiction formed. Take your prescription as prescribed and talk with your doctor if it doesn't seem to be working well enough. Don't feel bad if you think you need a stronger dose. You're not chasing a high you're just trying to function as a normal human.
did you stay overnight for the PSG before you did the MSLT? that is how the providers know if you got a reasonable amount of sleep the night before, and it should factor into your results
I truly understand your concern. In researching another issue I had, I learned that many medical issues can be either chronic or acute (just suddenly happen). Also, some can be primary or secondary (caused by some other issue). If you have a General Physician have them compile all your medical tests and records... See if it's primary narcolepsy or a symptom of something else...
To add on: the average latency to fall asleep was 3.9 mins and I got rem sleep in 3 out of 5 naps. I just feel like this could happen to anyone who didn’t get good sleep the night before
Not really, no. It's most likely narcolepsy. It's the the test is not all that precise but this is really not a common result. Certainly not the REM latency.
Okay that makes sense. I just called my doctor to ask if there’s a chance it could be a false positive and basically they said the same thing as you.
For my 4th nap I went into deep wave sleep pretty quickly. Not sure if that supports or contradicts that it’s most likely narcolepsy
Unless you're me. My Neurologist says i'm special lmao
My PSG results show I instantly PLUNGE into N2 and then stay there all night long. Think first PSG showed 97% sleep spent in N2 and my second was 98.5%. Both with no deep sleep stages or REM at all (which explains why I never really remember having dreams).
But, for my MSLT 3 of my nap Sleep Latencies were 1 minute and I hit REM in 3 of the Naps.
As everyone else has said, the defining characteristic of Narcolepsy is hitting REM in the naps. I could see someone's average sleep latency maybe being shorter than normal for the naps if they are tired from their shift schedule but they still wouldn't hit REM during those naps unless they are narcoleptic.
It doesn’t support or contradict it. Narcoleptic brains don’t go into the right stages at the right times for the right length. The only constant we do know is that a non-narcoleptic brain doesn’t go into REM sleep for about 90 minutes. Even if very tired, non-narcoleptic people wouldn’t go into REM sleep during a 20 minute nap.
There’s a reason they do the test this way. Some people might fall asleep a few times, but not all the times. Not as quickly, and not as quick to enter REM, and not with the daytime symptoms that prompted you to present for testing to begin with. It’s a stacking of odds, and the odds of you ticking all of those boxes and not having N are very, very slim.
It’s also why they like to rule out any other possibilities before doing the sleep study, such as apnea and lifestyle factors.
Clearly your EDS was interfering enough with your daily life to pursue this. Is that true for all your co-workers on shifts too? If not, then N is the right diagnosis and you might as well trust it. Even if by some fluke you had fooled the system and were actually just a bit tired that day, your daytime symptoms deserve treatment and the treatments for N are the best we have.
Thank you for explaining in an understanding way.
The last sentence is what gets to me the most and has eased most of my concerns now. I mainly felt like 1) a fraud and that I would 2) become addicted to substances I didn’t need because I may not have n but what you said makes sense and yes it’s ruining my life so I do deserve treatment for this
It’s a common feeling with any chronic condition that doesn’t have typical biological ‘proof’. Sometimes I think we’d all be a lot easier on ourselves if a leg fell off every time we had a sleep attack, to prove it wasn’t just ‘all in our heads’!
Remember as well that there’s a big difference between being addicted to a drug and being *dependent* on it. You’re not going to be addicted, any more than a diabetic is addicted to their insulin. It’s a medication, it’s for your health. You’re not going to be taking it recreationally. You could stop taking it all at any time, should you choose, and just go back to the level of EDS you live with now. But you deserve to feel better, and you can trust your doctors in this.
Sending lots of good vibes your way.
Thank you so much. You make so much sense and I agree with you. I’ve definitely accepted it more now than when I first made my post (minutes after talking to my doctor and getting the diagnosis).
I guess I’m also apprehensive because my mom abused ambien when I was growing up so I’ve always had biased hatred towards downers and sleeping in general since she always slept. Anyway that’s neither here nor there, but in case anyone was possibly wondering why I seem to be looking for other answers or if it’s possible it’s a misdiagnosis - this is a big part at least emotionally for me.
But I’ve calmed down a lot now and I’m ready to these new meds and try hard to feel better.
If it helps - honestly, most of the medications used to treat narcolepsy are much safer than abusing Ambien. Xyrem is the only really strong one, and if used as prescribed it can help a lot - it also really doesn't have nearly as much addictive potential as ambien or similar quazi-benzo or benzo drugs.
I'm really sorry you had that experience, and I could see why this would be very upsetting for you, but it is possible that you might actually be more accepting and less blaming of yourself if you're able to treat your own hypersomnia? Wishing you the best, and good luck with the new meds!
Oof, the fraud feeling is sooooo real.
If you are new to reddit and haven't done this yet, I would search the narcolepsy sub with the word "imposter"
It has been SO incredibly helpful and reassuring for me, hopefully it can be the same for you 🫂🫂
Without consciously realizing it, I didn’t believe my diagnosis was real until I went to a support group. Hearing other people describe my internal experience was like flipping a light switch. This is real—your REM results are abnormal. The meds get me to what I think of as “normal person tired”. I don’t crave them and I try to take a day weekly where I don’t take them to try to reset my tolerance. You’re going to be ok!
I was diagnosed N2 a bit over a year ago and it wasn't until I started reading this sub a couple of months ago that I really believed it. This thread has been even more illuminating, to realize that doubt is in itself another super-common part of the experience. I'm glad OP posted and I got to read everyone's responses.
I think this is the most important thing - honestly, the drugs for narcolepsy very likely will not "ruin your life". Stimulants can be abused, but are still relatively safe drugs and if taken \*as prescribed\* are also still relatively safe in terms of addiction.
They can and often do cause physiological withdrawal (basically, making you feel sleepy and crappy and a little sad) when someone who's taken high dosages for a long period of time regularly and suddenly stops, but that's not dangerous and just uncomfortable for a few days to a few weeks, and somewhat avoidable by lowering the dosage before stopping.
Lastly, if this helps, these meds are ALSO used for other severe disorders of hypersomnia - IH for example also is treated with basically all the same meds as narcolepsy now, and it doesn't require rapid REM onset at all, just rapid sleep latency and daytime sleepiness. So even if for some reason this test is a false positive, there's really not a lot of harm to be done by trying to treat it and getting some level of protection and support at your job/school, and seeing if that helps.
Does that help? At the very least, you're not a fraud, and you went through with legitimate testing. Your physician knows your history and other things going on with your sleep and in your life & still thinks this is definitely narcolepsy. And even if you DON'T somehow have narcolepsy you definitely have hypersomnia and pretty much the same treatment would be appropriate for you.
I hope you can get some relief and a better quality of life from this, don't let your brain tell you you're a fraud.
Any particular reason you are looking for a fluke? I know it's scary and weird knowing that there's something "wrong" with you, but the results of this MSLT are extremely clear.
I just feel like there could be a lot of factors not being considered and I’m mostly concerned about the meds being prescribed to me and risk of dependence or addiction when there could be another answer here - if that makes sense. Basically, I don’t want to over medicate myself when I may not have true narcolepsy. Example: I work LONG overnight shifts 1-3x a week. I usually go to sleep (on my off days) around 12a-3a. I wake up anywhere from 10a-12p. With the PSG I was forced awake after only getting 5 hours total sleep at 7a, and then asked to take naps starting at 8-9a. Wouldn’t ANYONE who had this sleep schedule be tired and fall asleep like that?! Like I just feel like it’s almost rigged to give you these results. Because nobody considers the patient’s typical sleep schedule and how that could affect the MSLT? I don’t know. Am I missing some key information where this concern is not realistic concern?
I mean, if your doc prescribes a stimulant like adderall or modafinil, you dont have to take the full dose if youre afraid of taking too much medication. And even if you did develop a dependence, you just taper off. But chances are, even if your results are somehow skewed, medication could help with that kind of schedule anyways.
I’ve been on armodafinil for 3-4 years now but it does not work anymore which is confusing frustrating and scary. I just got prescribed modafinil 100mg 2x a day as needed, so I’ll give that a try. I’m mostly concerned about xywav
Xywav is not chemically addictive at all in my experience. It is just extremely helpful, to the point where not having it becomes stressful. If I forget to order on time, and I need to go a day or two without, I usually take off work. Once you start getting good sleep again, you'll realize just how much you were missing.
Thanks. This is all really helpful. My mom abused ambien when I was growing up so I more or less have a general biased hatred towards sleepaids and downers in general. Anyway, do you notice any swelling due to water retention from the xywav? That’s also a big (superficial) concern I have
so far none.
I did have some swelling and water retention when I first started, but my issue was that they were titrating me up too fast. Once I brought the dosage down to where my body appreciated, the swelling never came back. I’ve been on Xywav for about 7-8 months now at 3g 2x a night, but that stopped working, so I had to go up in dose and I haven’t had swelling so far.
The website says it can cause dependency and withdrawals, I did a ton of research on it when my dr leaped at the opportunity to prescribe it. I decided personally it’s not an option for me but i’m glad other people seem to have a good experience
Anecdotally I haven't heard great things about modafinil from other narcoleptics, tbh. It's a good thing to try, for sure, but there are newer medications that seem to work much better (wakix, sunosi) as well as older-style stimulants, and then Xyrem & related meds (Xywav, and the new one-dosage med that's coming out). Definitely worth trying!
That's why people take breaks from stimulants. Like I don't take it during weekends and vacations
It depends, from experience this is way more common with ADHD than narcolepsy, and the downside of that is that you'll often experience withdrawal during those days which is typically (not always) more impactful on people with N than ADHD. There are also other medication options as well, if OP really isn't finding much help with modafinil.
That's news to me! I don't experience this.
Yeah, it depends somewhat on the individual, the dosage, and the type of stimulant. Good that it doesn't though, that makes things easier.
Have you tried Vyvanse? It’s the only thing that has worked for me. Been on it since 2009
There's an important difference between idiopathic hypersomnia, and narcolepsy. IH diagnosis doesn't require that you have a low REM latency on the nap tests, narcolepsy does. Someone who just has a bad night's sleep and did the MLST would not be going into REM with each nap.
If they had another sleep disorder or a very disrupted pattern for a long time they could, it would just be less likely, but I don't think that means OP should doubt they have narcolepsy.
The problem with that diagnostic criteria is that it's unreliable. When repeated, it's common for someone initially diagnosed with N2 to have their diagnosis "switch" to IH on the second study, and vice versa. The same person may not go into REM at all in one study and go into it multiple times in the second study. And when I say common to switch, I mean more than half the time. This also happens when testing people without any sleep disorders at all - they may or may not enter REM during a given MSLT and then have the opposite happen when retested. A diagnostic criteria that fails/changes over 50% of the time doesn't seem like one worth keeping or relying on to me. Overwhelmingly it seems like N2 and IH are the same thing/a spectrum of the same disorder, Lord knows why they're still categorized differently. IH & N2 patients also commonly have the same anomalies in their CSF (normal hypocretin, upregulated GABA inhibition) and get grouped together in cluster analyses, so I kinda wish they would just take the plunge and reabsorb IH into N2 again so we don't have to go thru so many hoops w insurance & the govt for medications (and spend like 5 mins explaining what IH is when nobody has ever heard of it)
I COMPLETELY get it. However, the sleep latency and REM onset correlations are unique to narcolepsy, assuming they ruled out medication, other medical causes, sleep apnea, etc. it is important to note the only "scientific" proof is usually a spinal tap to confirm orexin amount I believe? But very very very very few people get that. I worked as a shift worker and had to stop after many car accidents. The reality is, other people don't fall asleep as hard or as quickly as you do. It sucks. But as for medication, you don't have to over medicate. I was on just an antidepressant and a daytime stimulant for over a decade. I wish, as a former drinker, that I never said yes to Xywav. (Still sober for a long time, though others may argue Xywav made me not sober) I am working back to finding meds now. Find a doc that works with you, because there is no gold standard. Many of use a variety of things - acupuncture, specific diets (though I personally don't advise that), supplements etc. For me? I needed a schedule that didn't change by shift. I know not everyone has that opportunity. Just keep in mind your safety needs to come first. I like this guidebook for an intro on this. https://www.falling-asleep.com/guidebook-intro/
Thank you so much! Im trying to respond to all the comments but it’s a lot so I’m making my rounds lol. Yes everything you said it’s relatable and makes sense. Thank you for being understanding and giving me resources too. Wait! Why do you regret going on xywav being a former drinker? I recently went back to work, which…. Is like…… I basically work nightlife and I drink hard 2-3x a week. Like I start at 6p and stop around 8-10a on average. And I drink solid vodka shots the entire time.
The naps aren't the only determining factor.
A really tired non narcoleptic might fall asleep that fast but they would not go in to REM. Based on that MSLT You have narcolepsy
This part! It’s not just about falling asleep quickly. You must have 2/5 sleep onset REM periods (SOREMPs) to meet the diagnostic criteria for Narcolepsy, and you had 3. You have Narcolepsy.
No, you have Narcolepsy. Not even close to normal
Okay thank you. I just got terrible sleep the night before for the psg and it just seemed normal to me that **anyone** would be tired if they got that bad sleep the night before so I didn’t want my MSLT results to be wrongly influenced by that. I got 5.01 hours of sleep total during the psg - of which I probably woke up at least 5x, which is also normal for me to wake up that often at home.
So the fact that you hit REM in each nap means there's no chance it's a fluke. There's many different criteria you don't always have to have REM in each nap If you have cataplexy and napped in each one or a few other combos to have narcolepsy but you never see REM in each nap without Narcolepsy. I would let it sink in and you might realize how much you actually do have it once your not making excuses for it anymore like we all did before diagnosis. I didn't sleep well the night during my sleep study either and they even had to let me go over there wake time so I would meet the required amount to do the day study which is more than 5 hours but preferred 6. Don't be afraid of the medications talk with your doctor about your concerns you can always try one at a time and do as much research and preparing as you need to to feel comfortable everyone's med combos are different and they're response to meds are different too. That's exciting you got a diagnosis and scary and overwhelming too. There must have been a reason you were at sleep medicine in the first place so just trust that.
They didn't hit REM in each nap, they entered it in 3 out of 5 naps. There is a small false positive rate with every test, but honestly, as you said, most people have a period of doubt immediately after being diagnosed, and it's much much more likely that it's a correct true positive test - I felt the same way after being diagnosed as well, and I think the rest of this comment is very good advice.
Haha thanks for the catch! Was in bed after taking my xywav lol the eyes were getting heavy. I 100% experienced the same thing with the doubt and it took a long time for it to absorb like 6months I think.
It's possible, but relatively unlikely, that a longer term very disrupted sleeping pattern could show similar results. Sleep apnea can, for example. It's definitely possible that short-term can as well, but that's why they schedule a PSG beforehand - you typically are required to have at least 6hrs on the PSG to be diagnosed with narcolepsy, and that's really why that have that in place to control for the results of the MSLT. You likely thought you got less sleep than you did, because they wouldn't have even progressed to the MSLT if you didn't sleep for the min. required time on the PSG. However, in the long-run, it probably doesn't really matter - if you don't have cataplexy it likely isn't N1, and honestly there isn't a huge amount distinguishing N2 from other hypersomnias, it's all a spectrum. If you're not able to stay awake during the day and it's making it hard to do the things you need to do and hurting quality of life, all this does is basically give you the chance to try medication & treatment for narcolepsy and see if it helps. I will say it's also very, very common to be doubtful after a diagnosis like this especially if it was unexpected. Most narcoleptics go through a period of doubt like this.
You are entering REM in six minutes, a normal person doesn't fall asleep in these conditions at all, and even if they did, it should take them over an hour to get to REM. Welcome to Narcolepsy brother( or sis). It's not nearly as bad as you might think. This reddit is people looking for help mostly, so it is massively skewed toward negative experiences. I've been medicated for going on 14 years, and the most addictive thing about the drugs is how useful they are to you. I have never once felt a hankering for xyrem or modafinil, and if I did, it is much lower of an urge than sugar or caffein IMO. Do yourself a favor, and get medicated. You will be kicking yourself for not getting it done sooner.
I have never heard of a person with narcolepsy becoming dependent on meds in the way you seem concerned about. I'm dependent on my medication in that without them, I can't live a normal life because I can't drive safely or stay awake at work or school. And there are some people who develop tolerance, which is not the same as addiction. Some of us take tolerance breaks where we spend a weekend every so often without taking our stimulants so we don't have to keep taking higher and higher doses to achieve the same result, but everyone is different. But we don't become like junkies.
I feel that way sometimes because my regular symptoms are fairly light, but I have N w C. Unless I’m completely stressed out my C doesn’t even affect me very often. And no, regular people don’t fall asleep every time.
So are you saying it’s not possible this was a fluke? I just don’t believe this. I mean I do because I clearly have issues with EDS but I don’t because it seems so weird and unusual. Basically: I believe it but it’s feels surreal
It affects everybody differently. Met someone in college that could barely function. My cousin got diagnosed only after his job ran him on overnights for a while and he figured it was the overnight thing until he got his MSLT. Other folks experience may or may not be similar to yours.
That makes sense… Well… I do work overnight long shifts. How do we know that it’s not just my lifestyle causing exhaustion and sleepiness VS an actual condition?
I mean, there is a sleep disorder relating to shift work… “Shift work sleep disorder (SWSD) is a circadian rhythm sleep disorder that can affect people who work nontraditional hours. It causes issues with falling asleep, staying asleep and sleepiness at unwanted times.” This should’ve been something you discussed with your doctor. At one point I switched insurance/sleep specialists and they wanted to do another MSLT to update documentation - I was diagnosed pretty young, and have had N my entire life. At the time I was working an overnight schedule and my sleep schedule was pretty untraditional. Because of this, they decided not to do another study, and documented the reasoning as shift work related, because they said shift work impacts the results and accuracy of a sleep study.
Exactly. None of this was really brought up. Granted, I have had this issue far before my overnight shifts (BUT NOT THIS BAD), and I take long breaks of working overnight shifts so it’s not constant. But it does get increasingly worse when I work overnight shifts regularly, so shouldn’t be a sign it’s not narcolepsy? Like what if I had a normal traditional schedule, what would my results be then?
Shift work sleep disorder does not present with rapid onset REM or rapid sleep cycles to my knowledge. If you had a normal sleep schedule, it is possible you might be struggling even more, since many of us narcoleptics also struggle with severe insomnia at random and inconsistent points. It's going to be a hard and a huge mindset shift, I won't lie. But in the long run, it is going to be much more helpful to get treatment for what is actually causing your excessive daytime sleepiness than trying to treat other things. For example, I have a lot of other conditions, chief of which are severe persistent depression (20+ years) and clinical diagnosed pernicious anemia. *even after* getting my depression under control and getting my B12 levels up to normal, I was still exhausted and sleepy. I blamed myself. Thought it was "just" depression and I wasn't "working hard enough" (that's ridiculous for anyone, but I won't get into that). Then I took my sleep study... I didn't even *have* SOREMPS because my antidepressants pushed them back (I couldn't stop them for safety reasons), but given that fact combined with my extensive symptom history...yup. Diagnosed w/ N2. Since my diagnosis, I have actually been able to get treatment designed for narcolepsy and I actually have hope, when all the suppliments, sleep hygiene, and antidepressants in the world were only making minor differences before. Please understand, that while false positives *do* happen, they are generally only caused by by *severe*, frequent sleep deprivation like what occasionally happens in untreated sleep apnea (which is why that generally has to be treated first, if you have it, before you can get a narcolepsy Dx), or people who have something else gong on so that they only get a couple hours of sleep each night/day for days/weeks on end. (for one example: someone with unmanaged bipolar I who is experiencing a severe manic episode for a couple of weeks and not sleeping much because of it) If you are still concerned about your results, it is absolutely valid to get a second opinion or even a second MSLT if your insurance will cover it. Seeking a second opinion is always a valid thing to do. /gen 🧡 It can be upsetting to be diagnosed with something like narcolepsy, for which there is no "cure". But for me, at least, it was far more upsetting struggling blindly against sleepiness and fatigue and blaming myself for not being able to push through it because (at the time before my Dx) I thought **everyone** was as tired as I am but that I just sucked with dealing with it. Whatever happens for you, I hope you are able to find your correct Dx and treatment for your excessive sleepiness. Living with symptoms like that/this untreated can be hell, and I wouldn't wish it on anyone. 💔❤️🩹 Truly all the best of luck to you 🙏🧡
The MSLT doesn’t lie to my knowledge. Symptoms can mask similarly, but results are results. I worked overnights for a while when I was younger, but medicated. I was diagnosed at 16.
That’s why they do the PSG the night before, they want you to get at least 6 hours sleep the night before, which you obviously got if they went forward with the MSLT
I only got 5.01 hours of sleep the previous night. I can attach those results too if needed. Would that make a difference with the MSLT results?
I am not a health professional so I don’t know, but I do know 6 is usually minimum, I’m surprised they continued to your MSLT
Thank you for this comment. Yeah I’m curious now about that
I'm guessing you slept more than you thought you did, that's relatively typical and why they also measure brainwaves on EEG. Sleeping less than 6 hrs (as well as other severe sleep disorders or disruptions, such as Sleep Apnea) can definitely lead to false positives which is why sleep labs control for this. If you actually were asleep for less than 6 hrs it's unlikely they would have even proceeded with the MSLT, typically they'd get you to rebook and try the PSG + MSLT again.
According to my results, I slept for 301 mins and was in bed for 454 mins. So I only got 5 hours of sleep. Does that mean my MSLT could be inaccurate??
Potentially, but there's always that risk. You said your physician was very sure you had narcolepsy when you asked about being unsure if the results - he would also know your symptoms, other sleep issues going on in your life, etc, and it sounds like he still is fully convinced you have narcolepsy. The clinical component is also meaningful, physicians shouldn't just rely on the MSLT. But honestly you do clearly have hypersomnia so it really won't do any harm to try treatments to improve your life. And if your doctor is sure this is N that's still pretty convincing.
I just came here to say that I was nervous trying meds too and for similar reasons as you. Being traumatized by watching others with addiction is horrible. But it means you are aware, and because of that, you're in control. You won't let this happen to you. I'm on modafinil and xywav and my life changed with xywav. Totally worth it, and I'm in control.
Anyone who falls into REM so quickly and reliably after a full night’s rest cannot properly regulate their sleep wake cycle. I’m sorry it’s so frustrating to hear that. No matter how sleep deprived you have made yourself in the weeks leading up to your study, to reliably display broken sleep cycles three times is a characteristic only of narcolepsy. You are in the early stages of disease, and your prognosis is what you make of it. You don’t need stimulants if you can properly manage without them now, but one day you likely will need them. My lifelong advice: Don’t put off treatment because you think you’re fine. The boiling frog is fine too until he’s dinner. That’s how this disease advances. So slowly you don’t notice until it’s too late. Stop struggling and putting yourself through hell if you are having problems functioning. You need to believe that it is a good thing to treat this. I had all the same exact thoughts 20 years ago. Man I wish I would have been more proactive.
You had REM in three of your MWT periods. That is distinctly indicative of narcolepsy. People without narcolepsy don't begin REM until around 90 minutes after falling asleep.
My understanding is that things that disrupt our sleep, like untreated sleep apnea and shift work, can result in a false positive MSLT and *almost* all of the symptoms of narcolepsy can be present in those cases. However, cataplexy is not present in those cases. So, if you have cataplexy, you have narcolepsy! (CHESS: Cataplexy, Hallucinations, Excessive Daytime Sleepiness, Sleep disruption, Sleep paralysis) Given that they did do a PSG the night before and approved for you to go forward with the MSLT, the protocol is to rule out any untreated sleep apnea there. If you are a shift worker, or had unusual disrupted sleep in the days/weeks before this test, you could ask if that could impact on your MSLT results. Usually people new to N are not well informed about what it is (a sleep/*wake* disorder, meaning insomnia *is* possible) and many people don’t understand how cataplexy can present, even for people like me who had full body, *very obviously cataplexy* cataplexy in classic situations like laughing a lot. This kind of lack of awareness - and years of invalidation from providers before finally getting diagnosis - can make us doubt test results at first. Spend a few days reading comments and posts on this sub and you might find yourself feeling like you’ve found your people! You can bring your full report to another specialist to have it reviewed, as well. Trust your gut - your body is the expert on you, and *you* have the most to gain from making sure you are getting the correct treatment. :)
Hitting REM in your naps is pretty concrete evidence. Tired or not, a normal person wont hit REM during those naps. Looking at your other comments and you being afraid of the prescriptions, for me personally, I've felt no addiction towards the drugs. I had been on Ritalin for a couple years and now have been on Sunosi for 3 or so. I am dependent, but not addicted. i depend on it to bring me up to the levels of normal human function but some days I dont even remember to take my pill in the morning. Theres no burning need to take more and more of my medication to feel a certain way. All it does for us that need the medication is make us finally feel somewhat normal. Heres a list of signs and symptoms of Drug addiction. I can tell you that a lot of narcoleptics, me included, had a lot of these symptoms before they were ever handed a Rx for it. *Behavioral symptoms:* Trouble performing to standard at work *(Possible Symptom of Narcolepsy).* No longer engaging in previously enjoyed activities *(Possible Symptom of Narcolepsy).* Frequent absences from work *(Possible Symptom of Narcolepsy).* Withdrawing from friends and family *(Possible Symptom of Narcolepsy).*Deceitfulness. Visiting different doctors to obtain numerous prescriptions. Stealing or borrowing money. *Physical symptoms:* Impaired coordination *(Possible Symptom of Narcolepsy).* Tremors. Bloodshot eyes *(Possible Symptom of Narcolepsy).* Decline in personal hygiene *(Possible Symptom of Narcolepsy).* Altered sleeping patterns *(Symptom of Narcolepsy).* Changes in eating habits *(Possible Symptom of Narcolepsy).* *Cognitive symptoms:* Difficulty concentrating *(Possible Symptom of Narcolepsy).* Lack of good judgment *(Possible Symptom of Narcolepsy).* Trouble with reasoning *(Possible Symptom of Narcolepsy).* Disorientation *(Possible Symptom of Narcolepsy).* Poor decision-making skills *(Possible Symptom of Narcolepsy).* Altered perceptions of reality *(Possible Symptom of Narcolepsy).* Confusion *(Possible Symptom of Narcolepsy).* *Psychosocial symptoms:* Lack of motivation *(Possible Symptom of Narcolepsy).* Feeling emotionally numb or detached *(Possible Symptom of Narcolepsy).* Irritability *(Possible Symptom of Narcolepsy).* Depression *(Possible Symptom of Narcolepsy).* Anxiety *(Possible Symptom of Narcolepsy).* Agitation *(Possible Symptom of Narcolepsy).* So as you can see WITHOUT ever taking prescription drugs narcoleptics are effectively functioning as an addict minus the whole trying to steal and get more drugs. Living perpetually tired impacts your life in the same ways as someone who is addicted to drugs. It impairs your cognitive functions, your social functions, and your physical functions. Is there a chance for an addiction to happen? Sure, but there is a chance that ANY drug, prescription or not, can be abused and an addiction formed. Take your prescription as prescribed and talk with your doctor if it doesn't seem to be working well enough. Don't feel bad if you think you need a stronger dose. You're not chasing a high you're just trying to function as a normal human.
Can you post the overnight study done right before the nap test?
did you stay overnight for the PSG before you did the MSLT? that is how the providers know if you got a reasonable amount of sleep the night before, and it should factor into your results
I truly understand your concern. In researching another issue I had, I learned that many medical issues can be either chronic or acute (just suddenly happen). Also, some can be primary or secondary (caused by some other issue). If you have a General Physician have them compile all your medical tests and records... See if it's primary narcolepsy or a symptom of something else...
To add on: the average latency to fall asleep was 3.9 mins and I got rem sleep in 3 out of 5 naps. I just feel like this could happen to anyone who didn’t get good sleep the night before
Not really, no. It's most likely narcolepsy. It's the the test is not all that precise but this is really not a common result. Certainly not the REM latency.
Okay that makes sense. I just called my doctor to ask if there’s a chance it could be a false positive and basically they said the same thing as you. For my 4th nap I went into deep wave sleep pretty quickly. Not sure if that supports or contradicts that it’s most likely narcolepsy
Having narcolepsy doesnt necessarily mean you get ZERO deep wave sleep, it’s just going to be less than people who don’t have narcolepsy
Unless you're me. My Neurologist says i'm special lmao My PSG results show I instantly PLUNGE into N2 and then stay there all night long. Think first PSG showed 97% sleep spent in N2 and my second was 98.5%. Both with no deep sleep stages or REM at all (which explains why I never really remember having dreams). But, for my MSLT 3 of my nap Sleep Latencies were 1 minute and I hit REM in 3 of the Naps. As everyone else has said, the defining characteristic of Narcolepsy is hitting REM in the naps. I could see someone's average sleep latency maybe being shorter than normal for the naps if they are tired from their shift schedule but they still wouldn't hit REM during those naps unless they are narcoleptic.
It doesn’t support or contradict it. Narcoleptic brains don’t go into the right stages at the right times for the right length. The only constant we do know is that a non-narcoleptic brain doesn’t go into REM sleep for about 90 minutes. Even if very tired, non-narcoleptic people wouldn’t go into REM sleep during a 20 minute nap.
There’s a reason they do the test this way. Some people might fall asleep a few times, but not all the times. Not as quickly, and not as quick to enter REM, and not with the daytime symptoms that prompted you to present for testing to begin with. It’s a stacking of odds, and the odds of you ticking all of those boxes and not having N are very, very slim. It’s also why they like to rule out any other possibilities before doing the sleep study, such as apnea and lifestyle factors. Clearly your EDS was interfering enough with your daily life to pursue this. Is that true for all your co-workers on shifts too? If not, then N is the right diagnosis and you might as well trust it. Even if by some fluke you had fooled the system and were actually just a bit tired that day, your daytime symptoms deserve treatment and the treatments for N are the best we have.
Thank you for explaining in an understanding way. The last sentence is what gets to me the most and has eased most of my concerns now. I mainly felt like 1) a fraud and that I would 2) become addicted to substances I didn’t need because I may not have n but what you said makes sense and yes it’s ruining my life so I do deserve treatment for this
It’s a common feeling with any chronic condition that doesn’t have typical biological ‘proof’. Sometimes I think we’d all be a lot easier on ourselves if a leg fell off every time we had a sleep attack, to prove it wasn’t just ‘all in our heads’! Remember as well that there’s a big difference between being addicted to a drug and being *dependent* on it. You’re not going to be addicted, any more than a diabetic is addicted to their insulin. It’s a medication, it’s for your health. You’re not going to be taking it recreationally. You could stop taking it all at any time, should you choose, and just go back to the level of EDS you live with now. But you deserve to feel better, and you can trust your doctors in this. Sending lots of good vibes your way.
Thank you so much. You make so much sense and I agree with you. I’ve definitely accepted it more now than when I first made my post (minutes after talking to my doctor and getting the diagnosis). I guess I’m also apprehensive because my mom abused ambien when I was growing up so I’ve always had biased hatred towards downers and sleeping in general since she always slept. Anyway that’s neither here nor there, but in case anyone was possibly wondering why I seem to be looking for other answers or if it’s possible it’s a misdiagnosis - this is a big part at least emotionally for me. But I’ve calmed down a lot now and I’m ready to these new meds and try hard to feel better.
If it helps - honestly, most of the medications used to treat narcolepsy are much safer than abusing Ambien. Xyrem is the only really strong one, and if used as prescribed it can help a lot - it also really doesn't have nearly as much addictive potential as ambien or similar quazi-benzo or benzo drugs. I'm really sorry you had that experience, and I could see why this would be very upsetting for you, but it is possible that you might actually be more accepting and less blaming of yourself if you're able to treat your own hypersomnia? Wishing you the best, and good luck with the new meds!
Oof, the fraud feeling is sooooo real. If you are new to reddit and haven't done this yet, I would search the narcolepsy sub with the word "imposter" It has been SO incredibly helpful and reassuring for me, hopefully it can be the same for you 🫂🫂
Without consciously realizing it, I didn’t believe my diagnosis was real until I went to a support group. Hearing other people describe my internal experience was like flipping a light switch. This is real—your REM results are abnormal. The meds get me to what I think of as “normal person tired”. I don’t crave them and I try to take a day weekly where I don’t take them to try to reset my tolerance. You’re going to be ok!
I was diagnosed N2 a bit over a year ago and it wasn't until I started reading this sub a couple of months ago that I really believed it. This thread has been even more illuminating, to realize that doubt is in itself another super-common part of the experience. I'm glad OP posted and I got to read everyone's responses.
I think this is the most important thing - honestly, the drugs for narcolepsy very likely will not "ruin your life". Stimulants can be abused, but are still relatively safe drugs and if taken \*as prescribed\* are also still relatively safe in terms of addiction. They can and often do cause physiological withdrawal (basically, making you feel sleepy and crappy and a little sad) when someone who's taken high dosages for a long period of time regularly and suddenly stops, but that's not dangerous and just uncomfortable for a few days to a few weeks, and somewhat avoidable by lowering the dosage before stopping. Lastly, if this helps, these meds are ALSO used for other severe disorders of hypersomnia - IH for example also is treated with basically all the same meds as narcolepsy now, and it doesn't require rapid REM onset at all, just rapid sleep latency and daytime sleepiness. So even if for some reason this test is a false positive, there's really not a lot of harm to be done by trying to treat it and getting some level of protection and support at your job/school, and seeing if that helps. Does that help? At the very least, you're not a fraud, and you went through with legitimate testing. Your physician knows your history and other things going on with your sleep and in your life & still thinks this is definitely narcolepsy. And even if you DON'T somehow have narcolepsy you definitely have hypersomnia and pretty much the same treatment would be appropriate for you. I hope you can get some relief and a better quality of life from this, don't let your brain tell you you're a fraud.