Anyone have any tips on how to deal with bad EDS? I am only taking adderall 10mg xr 2x a day and an 10 mg IR once a day, and I still feel like its not enough. Halp me, plz.
Adderall does exactly NOTHING for me (I’m diagnosed with IH) - I take Nuvigil 50mg 2x a day and Ritalin 5mg once or twice depending on how much I need to do and how bad the EDS is that day.
not great, but I can at least stave off the uncontrollable napping urges a bit with my regiment.
That’s strange - When I started Adderall it was AMAZING it was like OH MY GOD I’M ACTUALLY ALIVE INSIDE and then 6 months went by and it’s like why do I even bother if I’m not taking two? Maybe I need a meds change-up, or a dosage increase.
Got anything besides meds, or… is this just it? My sleep doc told me I would have to start taking naps, but even when I DO nap, it really doesn’t help. (I say DO nap because every day 12pm-10pm I’m at work or school or internship).
(PS don’t worry about bein’ a stranger :) - I don’t know anyone with N or IH and I have one of the two (won’t know ‘til June 16th) - if N, mild C. SO I was kind of reaching out to anyone who’s dealing with these, because I’m new to this, but not new to the 8 years of feeling like I’m not actually alive/awake)
Adderall/stimulants in general are pretty common to build a tolerance for, so I’m not really surprised you’ve had this experience. Do you go on “med holidays” at all? It’s typically suggested for stimulants to take, say, the weekend off so that the tolerance isn’t so significant. You may have to switch to another stimulant for a bit and then back to Adderall. Different people respond better to different stimulants - I just happen to do better with Ritalin c:
If you have IH, naps more than likely won’t help much, if at all. With N, they are usually refreshing, but not with IH - I tend to take naps 3-4 days a week, but they’re always 2-3 hours long and only help a tiny bit. :’c
my specialist called me a “tough case” and literally told me we’re out of options for the moment - so I just have to suffer through right now, basically.
And I completely understand the feeling of being alone! I was diagnosed last September with IH after having symptoms for at least 7 years. It was between IH and N for me too - but I had no REM episodes during my MSLT, despite falling asleep all 5 naps with a latency of 5 minutes. I’m still very much convinced it’s a spectrum thing though, which recent research supports (I suffer from sleep paralysis and hypnagogic hallucinations, but no cataplexy).
I HIGHLY recommend checking out this Facebook group! It’s been an immense help for me to be able to discuss this stuff with people who know what it’s like :3
if you have any questions about the diagnostic process I went through or my treatment or whatever else, I am more than happy to share my experiences!
Yeah, I’ve never had my dosage increased, just the amount of times I take it. I have gone on two med holidays – neither helped much. That’d suck if I switched – I really like Adderall because it helps with impulsive & irrational behavior, along with EDS & waking up in the morning (I take it right before I go to bed - it helps for some reason?)
I’m sorry you’re suffering through it right now :(. I think it might be a spectrum thing, too. Or like a Type I/II situation. I have SP & HH, but not super often, and cataplexy has been increasing over the last year, although I’ve never had a full blown sleep attacks. Either a wave of “I think I’m dying I’m so tired I’m gonna sleep now” or “I am so tired my legs aren’t working right and my face is drooping, hardcore and now I’m just gonna close my eyes” I never really knew what was happening before, but I assumed it happened to everyone that way - apparently not. Ugh. I don’t want the stigma of N, but I don’t want the under-researched IH either. You’d think I’d be awake with all the anticipatory anxiety, eh?
I joined! Thank you for talking & sharing with me! :):)