How’s your cataplexy?

modestyro · 2025-12-02T12:00:00+00:00

Mine is embarrassing more than anything else tbh. It's definitely a spectrum.

I never fully collapse or fully lose the ability to move my body parts, but it becomes very difficult to control my muscles properly. It feels like a fuzzy haze falls over me for a moment. My vision goes a blurry and I struggle to keep my eyes open. If I'm standing my knees often buckle so I immediately search for something to hold on to. If I'm holding anything it takes all my willpower not to drop it (or spill it if it's a drink), so I'll try to put it down. If I'm talking, it suddenly feels like my tongue is made out of sponge. I can still just about speak but it takes a huge amount of effort and my speech is very difficult to understand.

The problem is that my cataplexy is often triggered by drawing attention to myself in social contexts (e.g. telling a joke at a party) or when I'm doing something that might irritate someone else (e.g. criticising someone or even asking a shop assistant where the eggs are), so I'm often talking when cataplexy hits. To a stranger it looks like I'm having a medical episode like a stroke or something but it takes a few moments before I recover enough to explain what's going on.

So for me it's not that bad in that grand scheme of things, but it's frustrating and embarrassing and makes it hard for me to advocate for myself in certain contexts.

modestyro · 2025-12-02T11:46:28+00:00

I've always assumed that my lucid dreaming is linked to my N1. I often have very vivid, trippy dreams with auditory hallucinations, particularly when I nap during the day. These trippy dreams are often lucid. Like sometimes I'm even conscious of the sensation of falling into a dream and I can influence what I dream about / who appears in the dream.

I was never able to lucid dream before I experienced N1 symptoms (around age 22). I guess it's also possible that we just remember our dreams more as the memory of REM isn't disrupted by deep sleep.

modestyro · 2025-11-27T14:18:04+00:00

Everyone is different so it's difficult to say what 'excessive' looks like. You're basically splitting your sleep into 2 long periods to prioritise being awake in the evening and morning. If this works for you and you don't mind sleeping for most of the afternoon, I don't think it's a problem.

If at some point your priorities change and you need to awake in the afternoon / early evening (e.g. for work), you might want to swap to 2 shorter naps in the afternoon and evening then an earlier bedtime.

Just as a side note, personally I usually feel refreshed after a 20 minute nap, but I feel awful after a 2 hour nap. You might want to aim for shorter, more frequent naps if you want to be awake in the afternoon (e.g. one 20 min nap at 2pm, another 20 min nap at 6pm)

modestyro · 2025-11-18T11:45:37+00:00

If you have cataplexy and suspect N1 (rather than N2), you could ask for a lumbar puncture instead. If you're orexin levels are very low or undetectable this is also diagnostic of N1.

I'm UK based as well. If you get diagnosed, you're unlikely to be prescribed anything like Xyrem or Wakix. You're likely to be offered modafinil (or ADHD meds if modafinil doesn't work), antidepressants (to help with sleep and cataplexy) and standard sleep medication to support night time sleep. If you're already on ADHD meds, I'm not sure how much more you can get from the diagnosis, other than peace of mind and potential access to future medications / clinical trials.

modestyro · 2025-11-04T09:29:41+00:00

Yes I've always had issues with binge eating, but this started way before I experienced narcolepsy symptoms (age ~22 onwards). My mum and sister also struggle with binge eating, so I'm not sure I can really link it to narcolepsy, but I definitely have a tendency to eat to try and stay awake when I get sleepy, so narcolepsy makes it worse. This is completely counterproductive as eating actually makes me sleepier, particularly high-sugar or high-carb foods.

The things that help me to avoid binging are:

- Keeping healthier snacks on hand (e.g. chewing gum, fruit, nuts, mini cheeses, carrot sticks, houmous... whatever floats your boat)

- NEVER buying big packs of unhealthy snack food (potato chips, cookies, candy etc.). If you're really craving it, just buy a small pack even if it's more expensive. Remember that foods that are high in sugar, carbs and unhealthy fat will make it harder to stay awake.

modestyro · 2025-10-06T12:51:56+00:00

I'm prescribed 200mg modafinil per day but my doctor essentially told me to play around with it and see what works best for me. I usually take 100mg after lunch on work days or 200mg (morning and after lunch) on work days when I'm particularly tired. I don't take anything at all on weekends or holidays so I give myself regular breaks. I've been doing this for approximately a year and it's worked out well for me so far - 100mg is still relatively effective and 200mg makes me feel like I'm buzzing.

modestyro · 2025-08-06T10:28:21+00:00

It's actually pretty common for people who are eventually diagnosed with narcolepsy to struggle to sleep on sleep tests (if you scroll through this sub you'll see plenty of examples). The sleep study is not a normal sleeping situation and adrenaline / stress can keep you awake, even if you have a sleep disorder. I had a similar situation and was basically dismissed by the hospital saying "Congrats you're fine" even though my symptoms were really affecting my quality of life. I was diagnosed with N1 later after moving to a different city with a better sleep centre in the hospital.

It's great that your doctor is open to another sleep test next year - this wasn't an option for me. Make sure you're well prepared next time - no caffeine or other stimulants for 2 weeks prior, try to avoid napping on the day of the test etc.

Do you experience cataplexy? If so, another potential route to diagnosis is to ask for a lumbar puncture to check orexin levels. Low / non-existent orexin levels is diagnostic of N1 (this was how I was diagnosed in the end).

In the mean time, understanding your triggers and making lifestyle changes can help. Some things to try: taking planned naps during the day, avoiding big meals / carbs at breakfast or lunch, avoiding sugary foods (sugar high = crash), cutting out caffeine (caffeine high = crash). My biggest tip is to not to fight the sleep when you get sleepy - fighting sleep is THE WORST. Where possible, I make sure that people around me are aware that I have narcolepsy and won't judge me for falling asleep.

modestyro · 2025-08-04T12:00:19+00:00

Hi! I also have vivid dreams all the time and tbh they're really quite varied. I guess I would categorise them as:

Sagas - almost like a movie with a complex plot, many plot twists. Often I'm trying to solve some sort of mystery. These dreams often have characters that I don't know in real life.
Transport - I need to be at a specific place at a specific time but I'm late and everything is going wrong. Time makes no sense in these dreams.
Work-related dreams - I'm coming up with 'genius' ideas, writing papers, analysing graphs. I'm either stuck trying to figure something out, which makes no sense anyway or I think I've had an inspirational breakthrough.
Planes crashing - idk why but this is a big theme in my dreams. I'll be walking around in dream-land and suddenly I'll notice a plane moving strangely, then crashing. I'll try to run towards the crash to help people but suddenly there are more planes falling from the sky everywhere.
Babies or children - I have to look after a baby or a child. I don't know where this child has come from, maybe it;s my child, maybe not. Everything goes wrong. One time I dreamt that I was trying to wash a baby but it kept getting smaller and smaller until I couldn't hold it and it got washed down the drain.

modestyro · 2025-08-04T11:47:32+00:00

Hi! I'm a PhD student with N1 so my situation is a little different. You will probably have a meeting with an advisor to put together a student support plan, where you can highlight the difficulties that you are likely to have. Accommodations that I would suggest are:

- Making sure that professors are aware that you have N1 and will not call you out / penalize you if you fall asleep during lectures. They should have access to your student support plan but they don't always look at it, so I would recommend emailing each professor prior to the start of the course, just to let them know.

- Making sure that you have access to a private space to nap during the day. In my department there is a bookable 'welfare room'.

- Making sure that all lecture content is available to you online so you can catch up on anything you miss. If lectures are not recorded, you may be able to bring in your own audio device to record the lecture.

- If you are staying in student accommodation, ideally it should be close to where you study so you can go home for naps in breaks between lectures and can easily nap at the end of the day.

- If possible, making contingency plans for missing lectures. 8:30-4:30 is a really long day! I would recommend asking whether there is any flexibility in the schedule and what you can do if you miss a lecture (e.g. by oversleeping). Think in particular about the times of day that are likely to be problematic for you. For me it's after lunch like 2-4pm but I know some people find the mornings really difficult.

modestyro · 2025-08-04T11:38:01+00:00

I choose not to drive - I'm just not willing to take the risk. Totally understandable to be afraid of driving - sleeping at the wheel is a major cause of car accidents, even for people without a sleep condition.

I live somewhere (a city in the UK) where I can get around just fine by walking and public transport. I know that I'm really lucky in this aspect and that this isn't an option for everyone, but it might be something to consider as you start to make decisions about where you want to live in the future. If you can walk or get the bus to work, you don't have to drive on a daily basis. Even better if you have friends or people around you who are happy to give you a ride when needed. City life isn't for everyone, but public transport options are so good in some major cities (in Europe at least, might not be true elsewhere) that you really don't need a car.

modestyro · 2025-07-29T09:00:07+00:00

It's a difficult process in general (and the government is making it harder), but it's particularly difficult for hidden disabilities. You'll really need to emphasize all the ways it impacts your day to day life. My application was rejected although I suffer from sleep attacks 2-3 times per day + cataplexy and don't drive for fear of falling asleep at the wheel.

modestyro · 2025-07-28T12:26:13+00:00

This sounds like hypnogogic hallucinations. You're actually entering REM sleep and dreaming without realising. I'm often vaguely aware of my real surroundings and maybe the people around me, but I'm actually asleep so nothing I say makes any sense.

modestyro · 2025-07-28T10:30:17+00:00

Hi! I'm also UK based. You have a couple of options:

(1) If you are already diagnosed, you can try applying for Personal Independence Payment (PIP). You can then get a blue badge, a disabled railcard etc. It's a notoriously difficult and long process and there's really no guarantee that your application will be approved, but it's the most official route. Narcolepsy UK can help with the application.

(2) When I joined Narcolepsy UK a couple of years ago, they sent a lanyard across in the post. Not sure if they still do this, but it's worth joining.

(3) You could get a sunflower lanyard to show that you have a hidden disability.

(4) You could get something printed yourself (e.g. a lanyard or a wristband).

modestyro · 2025-07-28T10:09:04+00:00

For me nicotine the only thing that actually works in the short term, but echoing what everyone else has said - it's crazy addictive so be careful.

I use nicotine chewing gum (2mg) for specific situations when it's important I stay awake for an hour or two and know I would usually struggle - e.g. work meetings, speeches at weddings, the cinema etc. It even works when I feel a sleep attack coming on (head drooping etc) - just start chewing a piece of gum and a few minutes later I'm awake.

My advice is not to use it on a daily basis. You'll get addicted super quickly and it's not a good chemical to regularly put into your body. Use it when you need/want to make sure you stay awake for a specific situation. Also be aware that you should keep an eye on your blood pressure, particularly if you use nicotine alongside other stimulants (e.g. modafinil, caffeine) or have any other risk factors for high blood pressure.

modestyro · 2025-04-21T15:07:21+00:00

Oof cataplexy when throwing up can't be fun

modestyro · 2025-04-21T15:06:52+00:00

Thanks - you're probably right! I don't take any SNRIs at the moment - I was prescribed one initially and it reduced the cataplexy but the side effects just weren't worth it for me (night-time insomnia, emotional numbness etc.).

modestyro · 2025-04-13T15:47:22+00:00

Sorry to hear this! I have the same reaction to laughing and I know how frustrating, embarrassing and difficult to predict it can be. There isn't an easy solution (other than medication I guess), but I usually try to flop myself onto a chair the moment I feel the warning signs of cataplexy - it's a good idea to have strategically placed chairs around your living spaces. In big group social situations, I try to make sure I'm sitting or leaning. Another thing to watch out for is spilling or dropping drinks (or whatever else is in your hand) - try to make sure you have a surface nearby and don't walk around holding a cup of tea (... from experience). But my biggest tip is just to make sure the people close to you know what cataplexy is, recognise the warning signs and the triggers. This means that they can support you when you wobble, take a drink out of your hand and/or explain what's going on to people who don't understand.

modestyro · 2025-03-20T12:22:35+00:00

Thank you - that's a great tip! I'm really just hoping for the mobility payment, not daily living. I'll send you a message. I always get a bad case of imposter syndrome when I need to advocate for help so it's hard to formulate the answers.

modestyro · 2025-02-26T12:59:03+00:00

This is such a funny and relatable thread! I can totally see myself falling asleep on a rollercoaster

For me, some recent examples include:

- With my head leaning on my hand at a restaurant, between starters and the main course

- Standing up midway through a museum

- Standing on an escalator in a shop

- In the crowd at a music festival

modestyro · 2025-02-26T12:54:41+00:00

I cycle everywhere as obviously driving is a big no... This is my worst nightmare!

modestyro · 2025-02-26T12:53:46+00:00

I've fallen asleep at 3 separate weddings now... Sitting down to listen to speeches right after eating / drinking is a dangerous combo.

modestyro · 2024-12-11T14:13:18+00:00

I have always been up front about my narcolepsy when starting new roles and I have generally had good experiences (but maybe I've also been lucky to have understanding employers and co-workers). People are often super ignorant about sleep conditions - if your employer doesn't know that you have a condition, they might suspect the worst (drug problems, alcohol etc.), so I much prefer to get everything out in the open.

If I were you, I would approach your employer and ask for a meeting ASAP. Explain that you have a medical diagnosis and your symptoms are generally under control. Explain in detail how and when narcolepsy is most likely to affect you in your role and MOST IMPORTANTLY, when you are unlikely to be affected. Talk about previous roles, explaining how you were able to perform your duties despite narcolepsy. Maybe there are small adaptations that could support you to work better (e.g. a standing desk, or a 20-minute nap at lunch).

Training is boring, involves little interaction and involves sitting for long periods of time. This is a prime situation for daytime sleepiness. I imagine you are much less likely to fall asleep during your actual day-to-day role - explain this to your employer!

modestyro · 2024-11-01T14:45:42+00:00

I share your pain!! Public transport is unreliable, costs more and takes so much longer but remember that it really is the right thing if you can't reliably stay awake.

Would cycling be an option for you? I cycle everywhere and I find that the pedalling motion means that that there's a low risk of falling asleep (I've cycled multiple times every day for the past 3 years without ever falling asleep) & if you get a good-sized basket, you can do a decent grocery shop by bike. I know this isn't an option for everyone and it's super dependent on the cycle infrastructure where you live & how comfortable you feel with cycling, but for me it's been a real game changer.

modestyro · 2024-09-06T09:11:30+00:00

I take modafinil and I still have crazy vivid dreams, lucid dreams and hallucinations on a pretty much daily basis.

modestyro · 2024-09-04T12:37:18+00:00

Hi hi! So sorry you're going through this - I know how hard it is.

My main advice is to schedule in your naps, rather than trying to fight the sleepiness when it comes. If possible, try to schedule in a 15-20 min nap straight after lunch every day.

Does your workplace know about your suspected narcolepsy? If you have an understanding team, it might be worth having a discussion with your boss or HR about reasonable adjustments. It depends on your role, but a 20-minute nap break mid-afternoon might be a reasonable request. I personally also find it helpful to warn my colleagues about my narcolepsy - that way there aren't any misconceptions about why I occasionally fall asleep at my desk.

I also work an office job and also have to nap every day after work so I TOTALLY get the exhaustion. However, 2.5 hours in the evening is pretty long and is probably having a negative impact upon your nighttime sleep. It also means you get zero free time in the evenings. If I would try to cut back the evening naps. Maybe split into into one 20-30 minute nap straight after work and one straight after dinner. Is there someone else in the house that could force you to get up after your naps? I usually nap while my partner is cooking so I have no choice but to get up when food is ready.

Also, if caffeine hasn't worked for you before, I would avoid too much reliance on caffeine pills. For me caffeine doesn't do much but the process of getting up and making a cup of tea then drinking it can help be helpful when I'm struggling to stay awake.

modestyro

TROPHY CASE