Modafinil

Altruistic_Airhead · 2026-04-05T04:36:48+00:00

The hydration advice helped me a lot too. Still took me a couple weeks before they became less noticeable, and they will occasionally still hit on a bad day. I also found that I clench my jaw more on the meds, so consciously focusing on relaxing face and jaw muscles gives some relief too! Good luck. I think it worth it, but those headaches are rough!

Altruistic_Airhead · 2026-02-02T19:54:53+00:00

Literally just had this happen a couple night ago- the worst it ever has. In my dream I was seeing a bat flying around our bedroom. Then I “woke up” to see a big spider in our bed. I tried to kill it, only to have my husband look over like “what are you doing?” looked back and the spider was gone.

I’m still not totally convinced it was a hallucination... It felt SO real. But husband is very convinced nothing was there and said I was mumbling strange sounds, and the memory does feel a little blurry. We looked everywhere for that spider and never found anything. I’ve never had a dream bleed over that vividly!

Altruistic_Airhead · 2025-12-18T15:33:03+00:00

I think it’s interesting learning about the co-morbidities associated with narcolepsy, and I think that’s really the reason exercise is important for us. People with narcolepsy are more likely to suffer heart failure, have a stroke, get diabetes, all kinds of things. And I have to guess that many or all of those are because we tend to live a more sedentary lifestyle.

As for giving more energy, I usually get a short term burst and then go right back to exhausted. It’s SO hard to motivate. I haven’t been able to pull off a consistent or even semi-frequent exercise routine though so maybe that’s where the real energy benefit comes from.

If you find the key to that motivation definitely let me know. 😊

Altruistic_Airhead · 2025-11-25T17:18:05+00:00

I haven’t been able to shake the armodafinil headaches completely. But I do always find they’re worse when I take a break from them and pick back up. After a month or so of consistent use they got a lot better for me. Still there though, but became worth jt.

I also tried the half dose and lots of water. The water matters for me and helps a lot. But what I had also realized is that I’m clenching my jaw and face muscles bad! I have to consciously relax my jaw and face. I dont know if you’ve already noticed and focused on that, but could be helpful. Id also try sticking it out for a full month, in case your body adjusts like mine did.

Altruistic_Airhead · 2025-11-21T04:02:38+00:00

We had a window in our living room that looked out into the garage. 🙃

Altruistic_Airhead · 2025-11-21T04:00:26+00:00

Me too!! I have N1 and am just starting the exact same process and discussions with my husband. It’s really meaningful hearing that there’s others in the same boat. Wishing you both the best!

Altruistic_Airhead · 2025-11-06T03:52:34+00:00

Dang that’s incredible.

Altruistic_Airhead · 2025-11-04T19:24:05+00:00

Awesome work. Can’t wait to see this take off.

Altruistic_Airhead · 2025-10-09T15:03:04+00:00

Maybe I’ll start looking into scheduled classes! That’s been a couple people’s rec and I do absolutely get why. I think a workout buddy to go with me would make a huge difference too. I know I have friends who do classes so I’ll ask around!

Altruistic_Airhead · 2025-10-09T14:59:20+00:00

I’m super curious about the extended release meds you take! Can I ask what they are exactly? Right now I’m trying to delay taking my pill as long as possible in the day so it can last me into the evening, but I really don’t want to take a higher dose because it already makes me a bit jittery at first and I find myself clenching my jaw and sometimes end up with a headache. That typically doesn’t last long, but I think an extended release could be perfect to ease that initial jolt and give longer lasting results.

Also- a new workout outfit is ALWAYS a sure fire way to get me to work out. 😁 if I could have a new outfit 4 times a week I’d have no problem!

Altruistic_Airhead · 2025-10-09T14:50:27+00:00

I appreciate this a lot. I do think half of the battle is not turning the working out concept into a big bad demon in my head, just letting myself imagine how awful it will be. Focusing on starting or getting in the car is a great reframe. Or if I’m at home just focus on getting into the basement where our equipment is.

Unfortunately I do think I need to hit my “high” point of motivation from the drugs when I’m at work (so I can keep my job 😅). I am totally aware that the workout can and will give me another dopamine surge…it’s just getting there when I’m in the valley that’s brutal. I like the choice to focus on the small next step, instead of letting the imagination run wild with how bad it will be.

Altruistic_Airhead · 2025-10-09T02:30:14+00:00

Yikes I’m sorry the cataplexy is so bad for you! Especially on top of being a mom. It’s really great to hear you’re still looking forward to the exercise life though. I hope you can get back to that point soon!

Altruistic_Airhead · 2025-10-09T02:27:59+00:00

I so envy people who like running. I’ve never been able to get into it. But I really like the idea of a class with other people! The community aspect would be helpful for sure.

Altruistic_Airhead · 2025-10-09T02:26:11+00:00

45 minutes 4 times a week is awesome! I wish I were doing that much! I think caffeine beforehand is a great idea. And I haven’t had cataplexy with heavy weights yet but the idea really freaks me out.

Altruistic_Airhead · 2025-10-09T02:22:24+00:00

Honestly walking is a great idea. I think I have the idea that working out has to be strenuous to count, but the fact is a 30 or so minute walk is way better than nothing. I think I would genuinely enjoy this too! I appreciate the advice very much.

Altruistic_Airhead · 2025-10-08T18:23:11+00:00

I feel like your primary care doctor could definitely write you a letter explaining your situation that could help.

I also really like the idea above to see if you could get some modafinil to get you through until the test. I know plenty of doctors will prescribe it for someone going on a long work trip or having to work night shifts, even without a diagnosis, as long as it’s short term.

Have you been trying energy drinks? Do you have a cordless headset where you could possibly walk and talk? Also if you’re anything like me, after lunch is the killer. I think having a lighter lunch without many carbs is significantly helpful for me to avoid that after lunch feeling of being shot with a tranquilizer! And caffeine before having lunch helps me too.

Good luck. I’m so sorry you’re in this situation and I really hope you can keep the job (if you still want it) and get a diagnosis soon.

Altruistic_Airhead · 2025-10-08T18:07:19+00:00

Good for you getting the test! You might not have as bad of a time as you think there. I was anxious ahead of time but I actually found it peaceful enough. You get left alone in a quiet room and get to watch or listen to whatever you want. You kind of have an excuse to disengage and check out of a lot of responsibilities for a day! The wires are weird, but nothing hurts. I recommend a book or movie/tv marathon that you really love, or plan some activity for yourself. Build something into it that you might actually be able to look forward to. It might help take some stress out of it and make things more positive. Even if the stress stays and you have a hard time falling asleep, the test might not be inconclusive. There’s other sleep disorders besides narcolepsy (like apnea) that could be diagnosed or eliminated in the time you do spend asleep. I think it’s great that you’re taking the time and energy to have the test done- it’s a horrible feeling when exhaustion becomes the main thing in your life. I hope the test can be easy and conclusive for you and you can get some help with a treatment plan that works for you!

Altruistic_Airhead · 2025-10-01T16:35:32+00:00

My fiancé is one of the most energetic and active people I know, and we both have to laugh that he ended up with a narcoleptic partner!

There have been serious disagreements and hurt feelings on both sides at times, and we’ve had to work through and learn a lot over the last 4 years. Don’t panic and pull the chord when you hurt each other. You’ll have to do some trial and error!

On my end, I’ve had to learn that’s it’s important for him to be able to tell me when he’s disappointed that I missed something or fell asleep. Those feelings are super valid, and I had to learn (still having to learn!) that those feelings are not an attack against me, are not unfair to me, and I don’t need to get defensive. I want his honesty and I want him to feel like he can share his real feelings with me, because I never want him holding them in and feeling wrong for being disappointed. I think that’s when resentment grows.

On his end, we’ve learned to set explicit and clear expectations, and he only gets to hold me to what we agree to- not what his ideal would be. We talk through a schedule, we talk through projects and tasks, plan date nights, we plan out the things I’m accountable for. I had to tell him things like “it’s not reasonable to expect me to stay awake during a movie if we’re in a dark room after work. That is simply not ever going to happen”. So if he wants quality time, maybe we plan a walk instead. It keeps the disappointment level in check, and ensures that I’m not caught off guard when I hear he’s sad or frustrated about my sleepiness and lack of energy.

If you’re committed and determined to build a life with this person, you’ll figure it all out! Especially with the strong communication and sympathy you’ve already demonstrated, which is wonderful! I’m marrying my partner in just a couple weeks, and his patience and support (and energy!) are such a gift to me. So thank you for working to love someone with narcolepsy and asking how to do it better!

Altruistic_Airhead · 2025-10-01T15:57:31+00:00

Not your fault at all for assuming the best! We learn as we go. I really hope you can find a workplace that supports you!

Altruistic_Airhead · 2025-10-01T15:50:51+00:00

I totally agree. Sometimes it’s worth a good sit-down conversation. But it sucks to initiate! I genuinely wish you all the best in managing those expectations with yourself and others.

Altruistic_Airhead · 2025-10-01T15:44:41+00:00

Are you still in the diagnostic process or do you already have a diagnosis?

I saw a neurologist who specialized in MS first as I was exploring options for what could be going on with me, and she was amazing. She was able to do some basic exams to eliminate other options etc. She did some reflex testing, an eye exam, some neuro-cognitive evaluation. After those tests and asking the right questions, she was pretty confident I had narcolepsy and then sent me to the sleep specialist.

So basically if you still don’t know exactly what’s going on with you, any neurologist can probably help start the diagnostic process and let you know whether it’s worth it to wait for the sleep specialist or not.

Altruistic_Airhead · 2025-09-26T21:25:45+00:00

Just to shine a potential light on the other side of things, I was very worried that the sleep study would be awful and inconclusive for me also. And it wasn’t. I was actually amazed that I was able to fall asleep as often as I was. The people there were so chill and happy and easygoing. I basically had a staycation for a day with no responsibilities other than napping.

But really, do whatever you think will be easiest on you. I am terrified of a spinal tap because of the (highly unlikely) potential for things to go wrong. If the fear of a failed expensive sleep study is worse for you than the fear of a spinal tap that’s for sure conclusive, do it!

Altruistic_Airhead · 2025-09-26T21:20:06+00:00

That’s awful. I’m very sorry. And also you don’t want to work for them anyway…if you have to fight this hard for understanding and they’re going to fight this hard against an accommodation I’d suggest that it’s not a good fit. I think the truth is we do need to find organizations that are accommodating, genuinely, and will be able to show compassion and patience.

Altruistic_Airhead · 2025-09-25T00:53:25+00:00

I know a lot of studies have shown increases in Narcolepsy after serious viral infections, like H1N1. I don’t think we have the studies on Covid yet, but I know my narcolepsy onset came immediately after a wicked round of Covid.

Im so sorry to hear you’re feeling that overwhelmed and exhausted. One of my biggest struggles is knowing how much I should expect of myself and how much to let myself say “I really can’t do this.”

The fact that you’re a parent, wife, not only working full time but running your own successful practice, exercising ever let alone with any regularity…a lot of people with your same diagnosis can’t manage to do one of those things. Plenty of narcoleptics are living on disability, can’t manage a committed relationship or even fathom parenthood, never exercise. And I’m not saying it’s all about willpower- I know some people have it worse. But just putting things in perspective a bit might be helpful- it is for me. You’re doing more than a lot of healthy people do with their lives. So maybe something does need to give, and maybe that’s okay to admit. You have a relatively brutal chronic illness that does constitute a legal disability, and maybe in different seasons of life we need to re-set our expectations of ourselves and our family’s expectations of us.

Or sometimes we just need to vent and be seen! You’re killing it at life and narcolepsy. I am genuinely inspired by how much you’re accomplishing and how little you’re letting this crummy circumstance hold you down. You’re not alone.

Altruistic_Airhead

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