Wakefulness meds/stimulants: did they worsen your flu-like malaise, feverish feeling, or neck pain?
I have both ME/CFS and idiopathic hypersomnia, and I’m wondering how wakefulness medications or stimulants have affected other people’s physical symptoms.
I have constant flu-like malaise and a feverish feeling at baseline, along with bad neck pain/heavy head feeling, and these symptoms worsen during crashes. However, my daytime sleepiness is really bad and makes it difficult to stay awake at all and get anything done during the day, so I definitely could use some help with that. Because of this, I was first prescribed modafinil, I tried that a few times but sometimes it gave me a horrible headache, and the most recent time I took it I got SO sick like nauseous and dizzy and felt like I was dying and haven't taken it since then.
After getting a sleep study and new sleep medicine provider, I recently tried Sunosi at 37.5 mg on Thursday and Friday. Both days, I felt noticeably more sick and feverish than usual, and I still needed to nap for several hours.
I didn’t exert myself at all on either day I took it. However, I had school Monday through Wednesday, so this could also be delayed PEM. I can’t tell whether the medication contributed or the timing was a coincidence.
Has anyone experienced worsening flu-like malaise, feverish feelings, or neck pain from Sunosi, Wakix, modafinil, or other stimulants? Did it settle with time, persist, or vary depending on the medication? Did any medication help your sleepiness without worsening those symptoms?
I’m contacting my prescriber for guidance, but I’d appreciate hearing people’s experiences. I could REALLY use something that helps the sleepiness but does not trigger the feverish feeling. I know that stimulants do often trigger PEM because they cause people to overexert, but are there any that don't trigger it, as long as you don't overexert?
Thank you