I recently trialed Modafinil, also known as Provigil, for POTS and ME. Modafinil can be used as a treatment for fatigue and brain fog. To my dismay, I did not magically become like Bradley Cooper in Limitless. Ultimately, this medication was not for me, but it can be potentially useful for others.
How it works in theory
The mechanism of Modafinil is still somewhat unknown. A Google Scholar search will show dozens of hypothesized mechanisms with some level of evidence. It seems that Modafinil stimulates multiple parts of the brain to encourage wakefulness and cognition. It is typically used as a drug for narcolepsy, shift work sleep disorders, and sleep apnea.
My neurologist recommended it for fatigue and brain fog. She will sometimes use stimulants such as Adderall or Ritalin for this purpose as well. Modafinil tends to bear less side effects, so my doctor opted for me to try it rather than the stimulants.
How it worked for me
Pros
- Less sleepiness in the afternoon
Cons
- Anxiety
- Worsened tachycardia
- Impaired focus
- Brief bouts of nausea (this wasn’t a major issue)
- Shaky
In my experience, there are two distinct types of fatigue: sleepy fatigue and ME/CFS fatigue. For me, Modafinil helped with the sleepy fatigue, but not the ME/CFS fatigue. Since the sleepy fatigue isn’t a major issue for me and it bore undesirable side-effects, I discontinued Modafinil.
The lack of afternoon drowsiness was nice, so I think I am going to revisit matcha. I discuss when I tried matcha in my post on natural stimulants. It wasn’t impactful at that time, but I feel like it is worth retrying. Sometimes the usefulness of certain interventions can change when other variables change.
Other common side effects
- Headaches
- Dizziness
- Insomnia
I did not experience any of these.
Dosage
I took 50mg first thing in the morning (4:45am) for one week, then I bumped up to 100mg each day.
Insurance woes
So, here’s a crappy part about Modafinil: insurance doesn’t cover it for POTS or ME. My insurance (Blue Cross Blue Shield) only covers it for narcolepsy, sleep apnea, shift workers, and multiple sclerosis-related fatigue. The full price is $722 per month.
Yes, you read that right, $722. Here is the good news, using GoodRX, a 30-day supply only cost $24! So, if insurance doesn’t cover one of your medications, get on the GoodRX train. I don’t know what kind of sorcery they use to accomplish the low prices, but it works.
Has anyone else tried Modafinil? How has it worked for you?
Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.
Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.
8 Comments
Costco has it for 18 dollars if you’re a member
I’ve just started it and am still trying to discern how it works best for me. It seems much better than adderall for me. Helps with focus and wakefulness. I do still feel the ME/CFS fatigue but I can function better.
I actually like that I still have some fatigue because when I took adderall I didn’t have any fatigue-feeling until it crashed, and I would usually overdo it.
More sorcery: Costco has it for 18 dollars if you’re a member
I’ve just started it and am still trying to discern how it works best for me. It seems much better than adderall for me. Helps with focus and wakefulness. I do still feel the ME/CFS fatigue but I can function better.
I actually like that I still have some fatigue because when I took adderall I didn’t have any fatigue-feeling until it crashed, and I would usually overdo it.
Nice!!! Thanks for passing that info along and for sharing your experience with it.
I just found you. Thank you for your posts. I tried Modafanil and then when extended release came out I started using it. (ARModafanil). Thankfully I have sleep apnea and so could get it covered even though it’s really for CFS. It’s unbelievable that drs. basically lie and everyone knows what’s going on. It’s a farce.
But yes I have POTS and CFS. It has helped me stay awake. At one time I was on Adderall even though I don’t have ADd, and it did give me energy but I didn’t like the idea of being in it. So I was switched to Modafanill.
Hi Sally, thank you for sharing your experience
Hey, thanks for writing about your experience. I am diagnosed with POTS and hEDS and I suffer from significant fatigue where I often find myself falling asleep while I am driving. My PCP recently prescribed me Modafinil and I have been trying to do some research on it before actually giving it a try. Thankfully, insurance paid for most of mine for me!! It has been sitting on my table for a week and a half now I cannot bring myself to actually try it. Now that I have read your post, I am actually more willing to give it a try at least for a little while. I will follow up with you once I have tried it!
Hi Susan! I hope it works great for you! Awesome, yeah, let us know how you fare :).
Sorcery=GoodRX. 😆 It’s maddening to me when insurance won’t cover a medication prescribed by a doctor. If the doctor prescribed it that should be all the criteria they need to cover a drug.