Finding the right mix

I hope you feel better soon. I understand completely. It takes a while to get the right meds on board … so you feel somewhat normal.
I ended up having to leave a job I loved because I couldn’t keep taking the amount of medication I had to take to just stay awake and alert. But, I had a desk job, and I was writing & reviewing legislation, rules/law all day. It was very stressful.
But, now that I’m at home, I still have periods where I’m just soooo sleepy … I feel like I could sleep all day!
I take Nuvigil & Adderall 20 mg 3x’s a day. If I’m not busy, I try to cut back on the Adderall because it does increase your heart rate.
I think the best advice - especially in the beginning - is ‘pay attention to your body!’ If you get sleepy - SIT DOWN & lay back / nap… set an alarm for 20 min. If you are still sleepy, nap longer!
(While working … I took a blanket and out it under my desk, and instead of taking my 15 minute break to go get coffee / snacks with the others, I took a nap under my desk. And I got a little 2 cup coffee pot /warmer for my office so I good have it during the day. Mist people say 15-20 min doesn’t help - if you have narcolepsy- it does!
And, when I say - STOP WHAT YOU ARE DOING AND SIT DOWN IMMEDIATELY: then LIE DOWN (even if it’s in the floor) - it’s from experience!

I had 9 accidents … from falling… while driving, skiing, playing, walking, dancing, sitting at the table eating, working, and…actually sitting on the toilet.
Trust me - no matter what - lie down…!!!
You would rather clean up pee or whatever - than to haven’t clean up blood from your face & deal with stitches, broken teeth, facial trauma (lip stitches - 3 times, broken nose 2 times, broken jaw, fractured teeth - 3 times. I’ve had teeth replaced, crowns, bridges, then surgery on my teeth / above my top gum area from a cyst that formed from all the trauma, and now I’m in Invisalign. And I’ll still have to have 3 teeth replaced that broke in my last accident - because I fractured the bridge!)
Plus, now I have TMJ, trigeminal nerve pain (and had injections …) and it causes facial changes afterward from all the nerve blocks.

Soooo - LEARN WHAT YOUR SYMPTOMS FEEL LIKE - then just stop!
LIE DOWN!
🙏🏼💕

Hi Natasha66E, a fellow Narcolepsy with Cataplexy navigator here 😊 it is extremely frustrating when in the 'experimental' stages of medication. This is the only process we have as being individuals are all effected differently.

I have been taking Dexamfetamine for 7years now, experimenting with dosages alongside my Neurologists approval. He has tested me on some tablets that I wouldn't touch EVER again as they turned me into a zombie, one of these tablets (Wakix, 18mg) were regarded as 'The tablet of the future' and at £1 per tablet only offered to a hand of patients, I was one of them, I was given nearly 6months worth which ended with me feeling worthless, suicidal, full depression, headaches, I suffered every side effect that was mentioned on the instructions/ directions leaflet and made the decision after 6weeks to stop taking them and stick with my Dexamfetamine which I managed 100 percent better than these new tablets. As I say each person is different. They were not for me.

I am thankful that from the beginning of this year, 2025 and approaching my Neurologist for help, I was prescribed Sunosi 150mg, as I just was not able to manage my Narcolepsy type 1 and ADHD on Dexamfetamine alone anymore.
Before approaching my Neurologist, I had researched and found a study on Sunosi medication, from a Neuro Science Specialist in Holland and its affects on wakefulness whilst driving. Knowledge is power.
After taking sunosi 150mg for a matter of weeks I felt absolutely amazing. I was awake and able to get through the majority of my day without a nap or 3! ...after approximately 3months of 150mg and zero Dexamfetamine! The wakefulness seemed to dip slightly and my Cataplexy attacks (sudden loss of muscle tone, full body muscle paralysis) were daily occurring again... So a quick re-read of the Study on sunosi and I decided to up my dosage of Sunosi and also include 10mg Dexamfetamine tablets on a morning. My Neurologist eventually got in touch with me after numerous emails and approved everything I had been doing.
To this day I am taking 225mg Sunosi alongside 10mg Dexamfetamine on a morning before breakfast and another 10mg Dexamfetamine later on an afternoon approx, 2.30pm. I am motivated, I do not suffer horrific brain fog anymore, I have a 10minute nap after my dinner, I am able to manage my day and achieve a level of productivity that is 100 percent to what I was, so I am feeling good.

It is 10years being diagnosed and battling with different tablets and dosages trying to find what works for me.
All I can say is research the medications that are available in USA (Which I know sunosi is), find published Studys by Neurologists on Narcolepsy and medications, knowledge is power and we have to advocate for ourselves! It can be a very long winded journey finding the right medication but keep fighting to get that quality of life that allows you to hold a conversation without blacking out!
You are Stronger than your body makes you feel! You will find the medications that work for you I promise, keep your chin up honey, keep openly communicating how it is affecting you, dont feel you have to 'pretend' everything ok, this is an invisible disability that is harder to live with than anyone could ever understand unless they have it. 🙏 Take care and good luck ! X Amy

Hi . I hope you get some helpful responses from others in the community. If must be so frustrating when you want to pursue your passion, but you just can't. Here is an article about prescription treatments: https://narcolepsy.sleep-disorders.net/medications. I wonder if something else might work better for you. There are also new, promising medications in the pipeline. So please don't give up on finding somethng better. Warm wishes. - Lori (Team Member)