Over the years I've avoided the doctors after being diagnosed to avoid loosing my license. So I mega dose caffeine. So that is my medication for now. It's tricky and one day will probably kill me. It has resulted in high blood pressure and crazy heart problems, but it kinda works. What's yours and does it work?
I was already too anxious to drive even before my diagnosis, so I willingly handed my license over when it came up for renewal after my N1 diagnosis.
Currently on Provigil, Ritalin, and Wakix, plus Seroquel + lorazepam at night to help me sleep. I also intermittently use cannabis (w/ my docs' permission), and I get 1 caffeinated drink per day.
I already have preexisting cardiovascular, pulmonary, and hematological issues (among other things...), so self-medicating is definitely a no-go for me.
Edit: no longer needing lorazepam or cannabis. My doctor agreed to switch me from Ritalin to Zenzedi (dextroamphetamine), and we also added baclofen at night to hopefully help me wake up easier.
I take Armodafinil( nuvigil) daily in the morning even on the weekends.. I find it works better when I get adequate rest. When i feel it wearing off or find myself getting sleepy.. I get up, move around and make sure I keep moving.. if I can. I take a nap.
The 15 min nap is awesome
I take Vyvanse 50 mg. every day, for about 2 yrs. It's expensive, but the alternative is staying in bed with no urge to do anything. I have other issues, mostly chronic back pain, for which I take pain meds. There seems to be a fine line where I can accomplish anything. Luckily I'm retired, so have some leeway....
10mg Adderall IR
About 3 hrs after my morning regiment I need a nap. About 2 hrs after my afternoon regiment i need another nap. Then my evening dose usually helps me stay awake til it’s time for bed about 3-4 hrs later.
I have NwC but I’m also diagnosed with Nightmare Disorder, Hypersomnia, Major Depressive Disorder, and Generalized Anxiety Disorder as well. (Gotta love our acceptability to parasomnias and comorbidities.) My cataplexy is also a little different then what google would suggest. Perhaps a few others can relate here. But for me sometimes when I experience cataplexy it’s a full body collapse and am I’m in REM before I hit the floor. Many broken bones dislocated limbs and once a cracked scull as a result.
I mention this because I want to remind people of the importance not to judge others. What we have is a Rare Disorder. And everyones experience is different. Different number of symptoms and to various degrees.
This is why it’s so important to always remain kind and try not to be judgmental.
Best wishes to you. I hope you find something that can help more. I’d like to be on something more natural. Unfortunately I’ve tried that and it doesn’t work for me.
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