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Do You Find That Caffeine Helps You?
A MyNarcolepsyTeam Member asked a question 💭

I basically live off energy drinks to keep me awake... but honestly I feel like it’s more of a placebo effect than the caffeine doing the job. Now I have kidney stones! So, obviously, energy drinks are BAD. I don’t know what else to do! I’m already on modafinil, but it doesn’t seem to be very effective.

posted September 2, 2020
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A MyNarcolepsyTeam Member

I think coffee (caffeine) and the "Energy Drinks" are more of a nerve-jangler placebos and really do nothing to keep us from getting into trouble with our sleep problems; in fact, they make it more dangerous because we are suckered into believing they work and then we find ourself asleep at a stop-light, or worse. Also, they are very unhealthy products and the will hurt you physically with all kinds of issues, especially Kidney Stones! Kindey Stones hurt like crazy becuase they are tearing up your Kidneys and that can be very bad in the long term if you don't stop abusing them. That leaves us with only the hard stuff, Ritalin, Adderal, etc. About Modafinil and Provigil: I don't think they work at all for Narcolepsy. I think they were made to keep Normals awake for prolonged periods, but I found they really do absolutely nothing for me (and they are outrageously expensive. If the VA had not been paying for my test of them I could never have even tried them.)
Narcolepsy is a drag, but you can live with it, just don't ever expect to be 'Normal' because we are not normal. Find a Rx that allows you to do as much as you CAN do, and live within those limits. You will live longer and have more peace of mind if you can do this. I have given up writing and just about every other profession I ever attempted because I just cannot complete things and therefore I cannot really compete with Normals. So now, at 76 years of age, I live a humble, very relaxed life, day to day, living vicariouly through my children's successes and adventures. And I'm OK with it. I hope you all can do better than this, but if you really can't, you really should consider a more realistic life style. I wish you all the best in everything you do. If perhaps we do meet, we shall smile.

posted June 30, 2022
A MyNarcolepsyTeam Member

I find that caffeine helps to get me home from work. Taking naps when working 40+ hours is not possible. I take my Ritalin at 5am when I get up, Modafinil at 7am & 2nd Ritalin @ 11:30. That keeps me awake through the afternoon. Then coffee or Diet Coke on the way home. I’ve had 4 auto accidents before I was diagnosed with narcolepsy.

posted January 17, 2021
A MyNarcolepsyTeam Member

I find that adderall , and other amphetamines, both help me and I can sleep on them (seem to get the opposite effect of higher stimulation than the general pop) This makes sense to confirm my ADHD and it's definitely helped me to concentrate/focus and my general affect (others have told me). However, the more you take, the less it works...
Modifinal was a godsend to me initially but likewise, after a point, I seem to frow a tolerance to it which my doctor had said would not happen.

I'm wondering now if people with dual diagnosis of ADHD and narcolepsy/excessive daytime sleepiness have tried a combo of the two which I have not been prescribed.

I wish Desoxyn was easier to be prescribed bc unlike Adderall, I didn't get irritated when I ran out and found it easier to sleep on and felt more myself. But the stigma around is tremendous and its got bad side effects. Not sure if they are worse than adderall.

posted September 9, 2020
A MyNarcolepsyTeam Member

Your dr should be able to tell you . I take Adderall & it works fine.

posted February 26, 2021
A MyNarcolepsyTeam Member

Ha caffeine can put me to sleep. Funny once it worked good.

posted September 11, 2020

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