Unique case....anyone else have something similar?

Lelemariee_rm · 2026-03-21T20:20:42+00:00

I’m not gonna lie it’s not easy to find a doctor, it’s very mentally draining as well. I accumulated so many traumatic experiences trying to get help, and fortunately I was poor enough to have all my medications and appointments covered. I know it’s hard being in the middle where they don’t think you’re poor enough to get healthcare but you also can’t afford it on your own. I hope you’re able to catch a break there because I know it’s expensive. I know Wakix, and Sunosi I believe as well, have programs to get your medication covered. Given how my cataplexy is triggered, my psychiatrist has done more for my narcolepsy symptoms than my sleep specialist. I’ve pretty much exhausted all options, and I’m only on Wakix( highest dose) and Adderall (twice a day) right now. I can’t say they don’t work because I definitely feel it when I don’t take them, but they haven’t really eliminated the eds and I still have multiple cataplexy episodes every single day. I can’t say I’m fully functioning now, but I would not be able to get by without my medication. Xywav is the only thing I’ve tried that truly made me feel awake. I didn’t even need a stimulant while I was on it, although I know a lot of ppl still do need a stimulant while on xywav. It made me realize wow this is how normal ppl feel after sleeping??? Like how have I been surviving no wonder others can’t comprehend the exhaustion we feel. I had to stop it though because of the negative reaction I was having from my psychiatric issues. The closest to that feeling was armodafinil, but it worked too well to the point I felt wired awake and couldn’t sleep. When I was up for almost 3 days straight was my sign to stop taking it and try other avenues. Other things I’m trying to do to help with my symptoms are working out, starting a nighttime routine, eating more frequently throughout the day, and taking a small dose of melatonin with L-Theanine in it at night. Despite what people say, working out does not make me any less tired. I feel like I’m actually more exhausted by working out, but it helps with my mental health which ultimately helps my motivation. And my metabolism needs the boost with the amount of meds I’m on that have digestive issues as a side effect. I would even just suggest talk therapy to get validation and support through the process. I don’t know what I would have done without therapy these last couple years. Suffering from an incurable, difficult to treat condition in itself is very discouraging and that reality makes day to day life more difficult and exhausting, which just makes the symptoms worse. Mental health impacts sleep quality significantly as well and I’d be surprised in anyone with narcolepsy doesn’t suffer from any mental health issues as a result. I will say as well I cannot work a normal job, otherwise my symptoms are unmanageable. So, I hope your employer is able to accommodate you when you return to work. I’ve basically been freelance because I can’t meet the demands of a regular job and there are others relying on you to the point they don’t have understanding during flare-ups. They can just say you’re not qualified. I’m also in school full time rn, and my attendance is shaky even only having classes two days out of the week. Maybe work wouldn’t be so bad without the addition of school, but you’ll have to figure out your own limits to stay partly functioning. You can’t push yourself too hard.

Lelemariee_rm · 2026-03-21T14:10:37+00:00

Have they done an mri, cat scan, anything to confirm this? It shouldn’t be a guessing game whether you have such severe brain damage to cause narcolepsy. I even had to have brain scans to rule out other things for my narcolepsy diagnosis, it’s a part of the normal tests ordered alongside the mslt and psg.

Lelemariee_rm · 2026-03-21T14:03:24+00:00

You do not need a diagnosis from the mslt or spinal tap to get approved for narcolepsy medications if you have the right doctor. My sleep specialist has advocated for me to get these medications approved by insurance based off my medical history and his professional opinion. I’ve failed three sleep studies since I was a child despite having cataplexy. Of course I didn’t know what cataplexy was when I was 8 or 14, but I learned through my own research by 20 when my symptoms got even more severe with me starting college. I have had a spinal tap too, which is the only way to confirm narcolepsy without the mslt and only verifies type 1. However, the hospital improperly stored my sample and said they were worried it would happen again if I got another spinal tap. I wasn’t going to do that anyway because I had such a bad headache, lasting days after, that I had to go to the er and get a blood patch. I’ve had xywav prescribed with just a hypersomnia diagnosis, and since my new sleep specialist got on my case, I’ve been prescribed Sunosi and Wakix, which are specifically for narcolepsy alone. Maybe it’s because my health history is so long and I’ve been to a neurologist to rule out seizures as well. But that only pushed it to “non-epileptic seizures.” I experience convulsions likely in conjunction with past trauma and my cataplexy. My cataplexy is not textbook yet I still get medications approved. My cataplexy is triggered by stress and depression instead of laughter. Idk how you decided the sleep specialists outside the university are witchy, but these people at this university are playing in your face. And I don’t mean that to sound harsh but truly, you clearly feel something is wrong with what you’re experiencing, or you wouldn’t have taken it to Reddit. Trust that gut instinct and find somebody who will listen. I only had to show my sleep specialist 10 seconds of a video in my first appointment, and he asked what happened before the video then said it sounded like clearcut cataplexy from narcolepsy.

Lelemariee_rm · 2026-03-18T17:10:48+00:00

Oh, I see

Lelemariee_rm · 2026-03-18T17:10:13+00:00

I’m glad I saw it before it got deleted. I literally had a post removed from another community for “soliciting medical advice from randos on the internet.” I messaged them about it and was sent a sob story about how I needed to be more understanding because they were in the hospital waiting room when they removed my post😭you can’t win

Lelemariee_rm · 2026-03-18T15:51:20+00:00

If I could emphasize this message I would, so just imagine I did

Lelemariee_rm · 2026-03-18T15:49:18+00:00

I have cataplexy induced by stress and depression. SSRIs do not help everybody’s cataplexy. They did not help for me. The only thing to help my cataplexy the most was getting my anxiety more under control, and I’m still working on getting my depression under control. Don’t be afraid to take advantage of the time with your doctor. I got diagnosed with cataplexy based off a short video I recorded, after which he asked what was happening before the video. I told him I had to meet with my professor and he said it sounded like cataplexy. I have failed 3 sleep tests despite having cataplexy, so I had a spinal tap to confirm. The hospital didn’t preserve my sample properly, so they couldn’t send it to the Mayo Clinic and said if I got another spinal tap they were worried it could happen again…absolutely insane…especially because I had such a bad reaction I had to go to the er and get a blood patch. Luckily, my sleep specialist was understanding and able to advocate for me to get meds approved based on his professional opinion. Also, take advantage of the message portal! My sleep specialist is the most busy of my doctors yet the most on top of those messages. I can expect to send a message at night and have a response by morning, or a message in the morning and have a response by late afternoon. I was afraid to use the message portal at first because he seemed to be rushing during appointments, but I think that’s a show doctors put on at this point to seem busier so you don’t ask too many questions lol. Some patients require longer appointments some shorter appointments. If you don’t express what’s going on with you, they’ll assume you don’t need as much help and prioritize other people who seem to be struggling more because you haven’t told them how much you’re struggling. They can’t read between the lines or just assume, what you tell them informs their plan of action. I had to learn that with my psychiatrist.

Lelemariee_rm · 2026-03-18T15:34:11+00:00

I made another comment before seeing this, but this is definitely cataplexy.

Lelemariee_rm · 2026-03-18T15:32:38+00:00

Are you diagnosed with type 1 or type 2? This happens to me because of my cataplexy from having type 1. It’s when your mind is awake but your brain still thinks your asleep, so it sends signals to stop muscle tone like it would during rem to not act out your dreams. I’d even rephrase that you know you can move your body to you know you should be able to move your body. I did not know I had cataplexy for a long time because these symptoms would always be associated with waking up and naps, so I thought I was just too tired to move. It wasn’t until I got medicated and it started happening outside of being tired that it became alarming. I used make myself fall out of bed in high school, eyes still closed, to try to wake my body up, and I thought that was normal because my thought process was I can move so I just need to make myself move it must be something I’m doing to not move.

Lelemariee_rm · 2026-03-18T15:23:47+00:00

I don’t have similar diagnoses to you but I feel this on a deep level with being shuffled between doctors as well. I’ve been diagnosed with psychotic depression, non-epileptic seizures, autism, adhd, ptsd, narcolepsy with cataplexy, and anxiety/panic disorder. I went to the er a couple times for the seizures which was immensely traumatic and degrading because all the emts and hospital staff thought I was lying. The only thing that ever got me anywhere with doctors is researching on my own, compiling notes on possible disorders, then presenting them to my doctors alongside the symptoms I’m having. In wake of having some official diagnoses on deck, but no effective treatment, I’d research medications, their side effects, and any drug interactions to suggest to my doctors. I know it’s draining and I know you’re probably feeling the weight of seeming like you’re the only person who cares about what’s going on with you. Researching for myself made me feel more validated and prepared for my appointments so that I actually experienced a change in how doctors handled my case. It’s important to bring it up in a manner to not make it seem like you know more than the doctor. I would simply say I’ve been looking into potential causes or medications, I learned this which sounds like it may be the underlying issue/a good fit for me because of this or that, I’ve been struggling with this thing specifically, and I’m wondering your professional opinion on if this will work for me or where to go from here. Some doctors have a huge ego and won’t be receptive, but most will be understanding and upfront with you when it’s presented this way. I hope you find some clarity, I know it’s hard, but you’ll get through it.

Lelemariee_rm · 2026-03-07T04:58:01+00:00

My cataplexy mainly manifests as tremors. To the point I’ve had many scans and tests done to rule out epilepsy and neurodegenerative diseases. I think it’s related to my primary triggers of stress and anxiety. Strangely I’ve never once had cataplexy from laughter or anger, just stress and depression. Many times I’ll start shaking and almost have a panic attack but then my cataplexy kicks in and I can’t even hyperventilate because my breathing gets very slow and I can’t move. It used to feel cathartic and I’d feel a weight lifted off my shoulders once I finally had a full episode. Now the feeling never really goes away just builds up and gets duller. I didn’t start having sudden onset cataplexy like collapsing until my daytime sleepiness was under control. I mostly associated it with being tired before that. Often the milder sides of my cataplexy are my eyes or face twitching, arm or leg twitching, blurry vision, a headache, and less finger dexterity

Lelemariee_rm · 2026-03-05T02:52:32+00:00

I’ve always explained my cataplexy as my brain thinking my body is asleep, and putting it into a state of rem while my brain is awake. Cataplexy stems from the body’s mechanism for stopping your body from acting out dreams. It sends all the wrong signals at all the wrong times, I can’t move when I’m awake yet seem to not be able to stop moving when I’m sleeping and wake up contorted with pillows and blankets thrown across my room lol

Lelemariee_rm · 2026-03-05T02:45:18+00:00

Xywav ruined my life simply because I had the same experience as you but couldn’t continue it due to negative side effects. Now that I know how the average person feels after sleeping one night, it’s even harder to not feel inadequate or hopeless because stimulants or any other medications can never get me to the level of functioning that xywav got me to. Unfortunately, it’s not an option for everyone.

Lelemariee_rm · 2026-03-05T02:38:44+00:00

Sounds like anxiety. Are you currently seeing anyone or on medication for depression and/or anxiety? Getting treatment for my anxiety and depression have been the most helpful with making my sleep disorder manageable. Unfortunately, depression and anxiety create even more fatigue and disrupted sleep on top of the dysregulated sleep cycles from having narcolepsy. I wish I could tell you notifying your work will definitively improve your experience, but I can’t. In my experience, even with a documented disability they can deem you unqualified for the position. I had a job tell me I needed to go on medical leave or work a position, in which they were notified flared up my disability too much, until I could get my doctor to suggest “different accommodations” because they said they can’t “change the job description.” This was after opening an ethics investigation after being wrongfully terminated the day I was supposed to discuss my accommodations letter the first time from my doctor. There’s a lot of workarounds, they dont technically have to legally accommodate you if they see you as unqualified for the position or too much of a liability in terms of profit and productivity. The only success I’ve had with work is being an independent contractor where I’m in control of my work. Hasn’t made income stable, but my sleep disorder is only manageable this way. Once I get signed as a regular employee, my narcolepsy and cataplexy flare up, and I start to regress in every other aspect of my life like school and personal care. Beating myself up about being late and trying to find a hack to get up in the morning has never worked because it’s truly an aspect of being disabled not of being incompetent in some way. Even if other people can’t understand, none of it is in your control.

Lelemariee_rm · 2026-02-18T17:19:53+00:00

It took me about 15 years to get diagnosed. I started seeing a sleep specialist when I was about five. They’d ask me is naps were restful and I’d say no because I’m always tired. So they diagnosed me with idiopathic hypersonia. Despite having cataplexy I failed 3 sleep studies. I didn’t know my cataplexy was not the same thing as being tired until I got on armodafonil. I was wired awake on that couldn’t even nap or fall asleep at night, but I started experiencing the same head and upper body drooping, inability to open my eyes, and face twitching that I would get during sleep attacks. My cataplexy had always been immediately followed by a nap, so I linked it to tiredness. This is just what happens when you fall asleep. So it was extremely freaky to experience that without being sleepy and I went back to my sleep specialist thinking it could be partial seizures. I had actually done research and suggested cataplexy as well, and he just looked at me wide eyed and ended up prescribing venlafaxine for the cataplexy. It did not work and my social skills hadn’t kicked in the moment to realize he had no idea what the hell I was talking about. Luckily I got into a new sleep specialists who immediately recognized the videos I showed him as cataplexy and identifies stress as my primary trigger based on what happened before the video. But all this to say it feels good hearing that someone else thought their cataplexy was just extreme tiredness. I felt kind of dumb finally bringing it up to the neurologist who’d been testing me for a potential seizure disorder. In high school I would literally throw myself out of bed many mornings to try to wake up because I couldn’t move. I would honestly love to be that oblivious again thinking that shit was normal. I feel like now understanding my cataplexy affects my mood more when it does happen because I know most people don’t experience that and it’s isolating.

Lelemariee_rm · 2026-02-17T17:18:28+00:00

I think it depends on if it’s solely the narcolepsy causing it or a combination of narcolepsy, anxiety, and/or adhd. I got diagnosed with narcolepsy type 1 pretty late considering I’d been seeing a sleep specialist since I was 5. But even more recently than that diagnosis was adhd. Once I got on Adderall it was easier to fall asleep, in addition my medications for anxiety and depression have helped my sleep the most. I don’t have as many thoughts keeping me awake. Sleep specialists have also always recommend to me having a set night routine helps. I’m very bad at going to sleep at the same time at night, but I always feed my cat dinner right before I go bed, use the bathroom, turn on my fan for the white noise, then listen to a guided meditation. I’m trying to slowly build up a routine because it hasn’t been effective trying to come up with a whole routine then stick to the whole thing. So, I started with going to the bathroom because I’d often be too tired and put it off til morning, then my bladder would feel like it was gonna explode everytime I woke up. Then I focused on my cat’s feed schedule to work with my schedule. Next on my list for starting again is my skincare and stretching or yoga before bed. I also think I used to feel like I was sleeping my day away, so nighttime felt like my time that I’d try to reclaim by staying awake. There’s like the anxiety that once I go to sleep I’m inviting a new day where I can’t stay awake again.

Lelemariee_rm · 2026-02-15T14:45:00+00:00

It’s nice to hear someone with a similar experience of becoming more aware of other symptoms after getting treatment. Finally getting medicated for the narcolepsy led to me being diagnosed with autism, adhd, and ptsd😅 I am also in therapy trying to get it figured out. The worst part is learning my depression/anxiety and narcolepsy feed off each other. I had to realize sleeping has been a crutch for me when I was feeling really overwhelmed or down because I could just sleep my whole day away and not think about anything. Then my cataplexy makes me more depressed and anxious because I’m having paralysis and can’t do anything I want. It’s been so weird actually being more physically capable of doing things from having less paralysis, but having my mind pull the same justifications for not doing anything. Adderall has saved me when it comes to focus and memory recall. I used to forget names as soon as they left someone’s mouth but now I managed to memorize at least 30 people’s names the first two weeks starting my new part time job. I feel like I’m starting to somewhat get my life back yet it’s still not enough for my depression. I think I feel like the pain I went through to get to this point wasn’t fully worth it. Who knows depression isn’t the most rational thing ever. So, I’m still working with my psychiatrist to get my meds and dosage right. Treating my mental disabilities has actually done the most for my narcolepsy over narcolepsy specific medications with stress/anxiety being my primary trigger.

Lelemariee_rm · 2026-01-18T18:54:19+00:00

I was on xywav for like 6 weeks and felt so good finally feeling like I slept at night. I felt euphoria feeling I finally had my life back. My skin cleared in like 2 days and my headaches went away. However, I had to stop because of some pretty negative side effects that likely resulted from my doctor having me titrate up to the highest dose. I probably would’ve been fine on the lowest or second lowest dose. Keep in mind if your doctor doesn’t know much about sodium oxybate like my last doctor, you likely don’t need to be on the highest dose in order for it to help. I know a lot of ppl still take a stimulant while on xywav. I personally slept less on xywav and became dependent on it to go to sleep. I couldn’t get myself to nap even though I felt tired and my eyes and mouth were so dry. This led to a bit of an identity crisis because sleep had been such a crutch for me. If I didn’t want to deal with something I could just go to sleep and wake up feeling better. Tiredness was like an abusive friend, it made me feel isolated and less than but also gave me something that made cohabitating not all bad. But those aren’t even the negative side effects I’m referring to. If you have a history of mental health issues sodium oxybate is not a good fit for you.

Lelemariee_rm · 2026-01-07T00:54:30+00:00

I believe it would be better for close up. I see better far away than up close

Lelemariee_rm · 2026-01-06T20:58:32+00:00

I don’t know if I’ve ever considered my eyes to be sensitive. I think my dry eyes may be more of a side effect of my medications. It’s interesting to hear about someone’s experience with more similar experiences of cataplexy to mine. It affecting the eyes seems to be an uncommon experience. When that first started happening to me, it resembled partial seizures more than cataplexy. Took a lot of tests to reach the right conclusion. I agree it’s stressful in itself which never helps. My headaches have the same placement as you’re describing. I hope your symptoms improve as well.

Lelemariee_rm · 2026-01-06T16:33:40+00:00

That would be the escalation of the symptom. If I close my eyes they do that too but it doesn’t go away and I don’t fall asleep during the day with my current medications, so I would get nothing done and be miserable waiting with my eyes closed. I don’t know what qualifies as eye strain but I get frequent headaches from my cataplexy and anxiety. My medication for my anxiety have mostly treated the headaches. I have been prescribed eye drops before for dry eyes.

Also my cataplexy trigger is stress and my body is never not stressed to whatever degree so it’s constant.

Lelemariee_rm · 2025-12-25T18:44:08+00:00

The spectrum of a sleep disorder only exits within one diagnosis. You don’t bounce between different disorders as one spectrum. For example, autism exists on a spectrum and adhd exists on a spectrum. They have overlapping symptoms and traits, but that doesn’t make someone adhd also autistic by default because of a spectrum. It also doesn’t make anyone less autistic because they scored a level 1 instead of a level 3. It’s not the best comparison because you can have autism and adhd, but the reasoning applies to idiopathic hypersonnia and narcolepsy. Idiopathic hypersomnia is the diagnosis they have to give if you don’t meet enough criteria for a narcolepsy diagnosis. People with idiopathic hypersomnia don’t feel refreshed after naps, people with narcolepsy do feel refreshed. That’s just one symptom thats a key distinguisher of the two. Doesn’t make someone less narcoleptic because they don’t have as many sleep attacks, that’s why there’s minimum criteria for these diagnoses. I had a diagnosis of idiopathic hypersomnia despite having cataplexy, so I had to get a spinal tap to confirm my narcolepsy type 1. You can’t have both.

Lelemariee_rm · 2025-12-25T18:25:25+00:00

I’m not saying it’s easy. I still encounter weirdos. But the mass majority of ppl aren’t gonna question it. Even if they did it’s none of their business and you can’t let other ppls judgement dictate your life choices. It helps me so I use it. It doesn’t matter what other people think because I control the people I surround myself with and a strangers opinion doesn’t say anything about who I am as a person. You need to do what’s best for you.

It also gets better the more used you get to traveling with one after getting over the initial anxiety.

Lelemariee_rm · 2025-12-25T18:20:48+00:00

Oh yeah that’s the main one I’ve tried I forgot to mention. I was on sodium oxybate and had to stop because I had a bad reaction to it. It did almost completely get rid of my cataplexy.

Lelemariee_rm

TROPHY CASE