
Narcolepsy Support Group
A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.


TeamDS
Tell us about your personal experience with Adderall as a treatment: Has it worked? Have you had any issues? Any recommendations or tips?
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If so it\'s ok - it helps a bit. It is very very weak. Hence you have to take more, but the doctors naturally are scared of giving you more.
Usually my stock finishes fast then.
I like Benzindrine because of all narco meds - it seems the gentlest. Even compared to caffeine!
But again it requires a large dose, 5mg is nothing.
I find it peculiar that this medicine is meant to be dangerously addictive as I continuously run out of it - but never experience withdrawal symptoms.
But then my doctor says something along the lines that these medicines are only addictive for non-narcoleptics.
My boyfriend is currently taking enough meds to kill a horse (his Dr\'s words) and now even those dont seem to be working.
He has been taking 180 mg Adderall daily, 400 mg Provilgil daily and 24 cc of Xyreme at night. Now, as a result of the hypnogogic hallucinations he is seeing a psychiatrist and taking Abilify to calm his thoughts down...it is constantly a trial and error process and even though he is on all these meds...and they DID work at one time they now appear to be doing nothing.....he still sleeps.....look forward to the new friendships here.....
Currently I take 80mgs a day divided into four 20mg doses. I started on 40mgs a day two years ago and eventually had it increased to 60mgs, (30mgs twice daily) then 90mgs (30mgs three times), and settled on 80mgs.The benefits of Adderall over other stimulants are its quick onset, stronger action and smaller side effect profile. Its weakness is that its effectiveness can be mitigated by several secondary factors such as taking it too close to a meal, taking it with something acidic, (ie orange juice) or simply your weight. These factors tend to negatively affect either its onset or duration to varying degrees, in my experience the latter is most often affected.
Flexibility and making up for the drawbacks of the medication I believe are key to effective treatment strategy. Realistically speaking, Adderall's maximum duration of effectiveness seems to average around 3 hours. Taking into account the mitigating factors I mentioned above, the unpredictable nature of life and of Narcolepsy, its necessary for successful treatment to have more than you would need to treat EDS alone, quality of life must be taken into account. All that said, I believe there no such thing as a maximum therapeutic dose and that there is a minimum therapeutic dose.
80mgs is at the moment effective to treat my EDS and the ensure the maintenance of the quality of life which I define as being able to do what I need to do and being able to do what I want to do without undue worry about my supply of medication.
I forgot to mention that on average a 20mg pill will last just as long as a 30mg pill. An increase in the amount taken at once will only affect the strength of its onset, not increase its duration or have it kick in faster.
I take 60mg at noon, due to th fact i also have a sleep delay, it is impoosible for my to fall asleep until 3am or later, no matter what i do.
so far i havent really noticed anything other than some side effects. I have extreme dry mouth, more irritable than i usually am.
The adderall for me, its really a touch and go...the doctor is hopeing it wll work, but there is a huge factor against it working...bcuz i had a severly bad reaction to ridalin...and since they are both in the same family...i have to be watched by family and friends.
Adderall is really inexpensive as well. Some of the others cost hundreds even with insurance.
I dont just take that alone though.......I take it with Effexor because the combo is what helps the most for people with cataplexy.
After that, he reluctantly switched me to 30mg instant-release Adderall once a day (???) and referred me to someone else, treating me like a problem patient because he insisted there was no difference between Vyvanse and any of the formulations of Adderall.
LUCKILY he was very wrong, and my new doctor quickly adjusted the prescription to 50mg of instant-release Adderall a day, taken 10mg at a time. Initially she prescribed it as two in the morning and two at lunch (with one right before my 5pm night class), but I found that taking 20mg at once just made the side effects too harsh: I couldn't get anything done while it worked, and as soon as it wore off, I was exhausted. But taking one 10mg pill every 1.5-3 hours (depending on how quickly I feel it wearing off) is working great. I was actually able to reschedule my next follow-up for 6 months from now, which is a first for me since being diagnosed.
I do still skip stimulants entirely on days where I don't have to be mentally alert, since I feel a bit foggy if I take some but don't keep taking it after each dose wears off. Xyrem alone (4.5g twice a night) works enough to keep me functioning on a basic level every day; I use Adderall for homework days and days where I need to be consistently productive without crippling fatigue kicking in too early. The biggest obstacle I have is eating enough on Adderall days. If I let myself go too long without eating (which is easy with the effects on appetite), I find that I "crash" very early, and eating and taking remaining Adderall doses can't really pull me back from it until I've slept.
On the days I dont go anywhere I just take the morning dose. I take 3 10 mg tabs. If I am going to be out in the afternoon I will take 2 more tabs because I want to be safe driving and I know that as the day goes on I am more apt to have attacks.
I like being able to monitor my meds like this.......since I hate the idea of taking them to begin with. Also by not having to take an afternoon dose every day my meds last longer.
From what my doctor explained to me if you have N your sleep is all over the place like stage 1 stage 4 stage 1 and stage3, which is why you are tired all the time. So taking addreal alone did not help me one bit. Once she started me on XYREM my sleeping is now stage1,2,3,4 so I am getting real sleep and I really only use the addreall to help me out during the day when I start to feel tired. This is also why no sleeping pill every worked for me, and let me tell you I tried them all. I would take it, fall asleep, feel like I slept but work up feeling tired and hung over like I had one hour of sleep and was up drinking all night, and I dont drink at all. Because these pills do not help you stay asleep in the appropriate sleep stages in the appropriate order they really dont do anything. It took me 5 frustrating years and like 6 doctors to figure it out. I really hope your doctor will allow you to try XYREM. Take care.