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For some of you who have ADHD : Do you have the same stimulants for ADHD & Narcolepsy? Does it work for both at the same time ?

  1. Yeah, I take Adderall. 30 mg twice a day

    1. It took me years and years to be properly diagnosed. When I was being treated under diagnoses that included ADHD and Bipolar Depression with psychotic features my regimen always included a stimulant of some sort. I always told providers that they seemed to treat the "depression" more than mood stabilizers, the antidepressants, and atypical antipsychotics that we tried. They seemed to "correct" some function in my brain. They managed my narcolepsy enough that I was functioning in society, but they still had many drawbacks and were not the best regimen for me at the end of the day.

      I struggled both as a teenager and as an adult with occasional (both prescribed and illicit) stimulant abuse. Because of this, it was hard and frustrating for me to get physicians to understand that chronic fatigue and excessive daytime sleepiness had been struggles for me since early adolescence. I told them that it did not matter if I slept two hours or twenty- I did not feel rested with any level of sleep ever and if left to my own devices I could sleep in perpetuity.

      The clinician that finally recognized my condition as narcolepsy expressed that it's not uncommon for narcoleptics to seek stimulants to correct "wiring" problems enough to be functional, and that depressive symptoms with narcolepsy are sometimes secondary to the chronic fatigue which is why the stimulants seemed to help more with the "depression" than other classes of medications.

      I am presently on Modafanil and it has been life-changing in terms of becoming a high-functioning adult who takes care of themselves. I feel it manages my narcolepsy better than traditional stimulants. That said, no drug is perfect and my biggest complaint about the medication is that it was sold to me as being much less addictive but I am very self-conscious and self-aware that I get anxious when my script is running low that I might not have medication on hand. Because I rotate shifts it was also considered a good choice for me under the impression that it would be safe enough if I had to take it at different times of the day now and then or not take it at all if it weren't necessary (like the first day after working three 12 hour shifts when I typically just want to rest). Unfortunately I find if I go without taking the medication for more than one day I experience significant and distressing mood lability with lots of tearfulness, hypersomnia to the point that I cannot drive even for a few minutes due to the danger of falling asleep, and binge eating behaviors.

      1. I am so grateful that you have found a treatment plan that helps with both your narcolepsy and ADHD symptoms. Stimulants can be so helpful to those of us living with narcolepsy. And yes, I have noticed that I am less depressed when I am on stimulants! Unfortunately I have a blood pressure disorder that makes it difficult to be on stimulants for long periods of time. I really miss the focus that they let me have! I hope one day to be able to get back on them, at least for the days where I want to focus on writing projects or reading. I get what you mean about skipping medications for "rest" days. Some days I wish I could do that, because I feel like my body needs to "catch up" on sleep since we are chronically sleep deprived (of restful sleep, at least). Unfortunately it isn't good to skip doses of the current medication that I am on so that isn't an option for me. But I know how beneficial it can be for people on stimulants! I understand what you mean by your narcolepsy symptoms increasing without stimulants, and the fear that you experience surrounding the thought of possibly not being able to get your medications refilled. This is a common fear, and problem, in our community so that is absolutely valid! And YES, the binge eating! When I am unmedicated, it is impossible for me to not binge eat! I fall asleep while eating and the automatic behaviors make me keep going. It's caused a lot of issues for me in the past, and it is why I am also scared of one day losing access to my medication... because my medication is the only thing that allows me to stay at a healthy weight, and drive my car safely. Without my medication I feel like less of a person! You are not alone in this! Thanks so much for sharing. Warmly, Tatiana ( Team Member)

    2. Yes and kind of. We're still trying to find a good dosage and timing to be effective for both. It's important to mention I also have PoTS so stimulant use for me is tricky, so it takes a lot more finessing than the people who can just take 72 mg of ER adderall.

      1. Wow, I also have POTs and struggle with stimulant use because of it. I tried so many medications before getting on Wakix, which is a non-stimulant treatment for narcolepsy. I miss being awake from the stimulants though, but - my heart really couldn't take it! How do you manage your POTs and narcolepsy, together? I am interested to know. It's difficult! Warmly, Tatiana ( Team Member)

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