Thoughts or input on caffeine effects with narcolepsy?
 
Wayne
I depend on it. In a odd way my extreme sensitivity to it when I was younger comes in handy now because I tolerate it much better. I often use it with ephedrine on the really tough days. Modafinil is almost useless to me anymore.
Pam
I drink multiple cups of Earl Grey tea a day. I used to drink Diet Coke religiously. It helps me. But I have to quit about 4pm or it can effect my sleep.
Step
Matcha green tea! All the benefits with caffeine but no crash and I feel a ton more energized. I also drink zipfizz which is a drink mix that has a ton of vitamins and a little bit of caffeine and that helps too
Nat
Drinking coffee really helps me from narcolepsy, some days it can just help to keep me going and other days it can help almost as much as my adderall. That being said, it doesn't keep me awake I can take a nap 15 minutes after drinking coffee if I want
Andrea
Coffee or caffeine is beneficial for narcolepsy if used with the right timing. I generally get a gut feeling of whether caffeine will make me more alert or not. General rule: If my stomach feels upset or I'm in a particular type of haze (probably from overworking), coffee will not help; If in the morning after a light breakfast and I still feel groggy two hours after waking up, coffee will help get rid of the grogginess.
Brad
I absolutely thought I couldn't live without it. Consumed up to 1000 MG caffeine a day. 400 or more is considered heavy . I started taking a med that increased my heart rate even after I quit taking that med my heart rate stayed up. Started cutting back on the caffeine and prescription stimulants. Heart rate is better and I'm about 90 % caffeine free and doing pretty well. I consumed heavy doses for about 20 years but didn't know I had narcolepsy most of that time.
Step
I'll have to get back with your again on this tomorrow. However, I've been drinking iced coffee (or caffeinated creamer as my husband says- still trying to find the right balance) in the morning. While doing some trial and error with my stims, I have had sine caffeine during the day too. That being said, I had my needs yesterday afternoon then last night I had to go to aCub Scout meeting. I decided to drink one of my Starbucks Double Shot Energy drinks and watch reddit between around 630-830pm. I slept horribly last night which really never happens. Tonight we had a 730pm Cub Scout event so I not only had my stimsc around 3-4, I made a smaller cup of my regular iced coffee. If I sleep bad tonight, I'm going to have to cut out the evening coffee. I was so exhausted this morning I had a bigger than usual cup. So, in the morning, it may wake me up a bit, but it's more for taste than alertness since afternoons evenings are my problem. Caffeine in soda and the teas I do drink really do nothing for me in the way of waking me up - I usually stick to water anyway unless I have a headache, then caffeinated soda with motrin helps. I hope that all made sense.

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