Long term effects of Adderall for Narcolepsy

Hi Jean1003,

I too am a narcoleptic. I am 28 and was diagnosed 2 years ago, but have felt in a daze since high school.

I started out on Provigil, 200mg two times a day. I didn't like it and even when I reduced the dose and took it with food it would make me feel like I drank too much coffee.

Just last month I went to a new doctor. He prescribed me Adderall 5mg three times a day. I really like it so far. I am still figuring out the best dose, but for me, a 10mg right when I wake up and 5mg after lunch have worked really well.

Some other really helpful things have been to drink a lot of water and take the pill with food. Force yourself to eat, especially when you don't feel hungry but haven't eaten for 4 or 5 hours. Don't take the pills after about 5pm (depending on your normal or goal sleep time;), they will keep you awake! Chew gum or suck on candy to stave off dry mouth.

Glad to hear you are feeling better. Adderall has really been helpful to me and all of us with narcolepsy need to share information. Some doctor's just don't understand the range of symptoms.

I am 26 years old and was diagnosed with Narcolepsy and Cataplexy when I was 13. I have a pretty bad case of narcolepsy. Before medicine I slept, on average, for 18 hours a day. I was always tired and I would fall asleep in the middle of conversations. I started out taking Ritalin and as my tolerance went up, so did my dosage. By age 15, I was taking Adderall and Adderall XR which is what I still take. I am up to taking, Adderall XR 30mg twice a day and Adderall 20mg twice a day. A couple of downfalls about Adderall is that is physically addictive and it is kind of expense. This medicine causes lose of appetite as well as irritability. What I have noticed is that Adderall effected everyone differently.

I'm 26 and was diagnosed with very mild narcolepsy.  I had almost an identical case as the original post author where i wasn't clonking out, out of nowhere, i just was in a cloud ALL THE TIME.  I'd have trouble keeping my eyes open while eating, watching tv, in class, and driving, so i went on ridalin or Methylin ER 20mg twice daily for years.  This past year i noticed around 5pm i would turn completely evil and was SO irritable it started affecting my relationships and life outside of work got pretty messed up.  So i switched to provigil/nuvigil, and turns out after a very scary case of hives that I was allergic to those, SO onto the 3rd round of meds.  Then Adderroll was suggested by my dr. 10mg three times daily.  I take them about 4.5 to 5 hrs apart and it's working awesome!  I'm not irritable, even my mood on the female moody part of the month has improved, and I'm still alert and awake.  As far as long term affects though I have only heard that it is addictive and that you shouldn't stop taking it suddenly.  It decreases the affect of birth control, and i hear it's not good to drink coffee while you're on it, but I do and it just makes me feel a little hyper.  I think most of the long terma ffects have to do with women and births and breast milk, so you may want to read up on that if you are female.  I have pretty bad carpal tunnel and I called recently to make sure the anti-inflammatory's and the adderall won't conflict and they said it's fine.  I guess i don't know too much on long term affects, but it's nice to see other people out there that have gone through the same kind of thing and are actually my age!

In the last year, my husband has had EXTREME daytime sleepiness.  His eyes roll back in his head, he slurs his words, and he looks like he is drunk or on something!  This is after a full night's sleep even.  I am a little comforted to read that others have similar issues as him.  His doctor thinks he might have narcolepsy, but he has not had a sleep study done.  He is on Adderall now, and it helps, but at times he still has the symptoms.  It is really affecting our relationship, and I don't know what to do. 

I am 34 years old and was diagnosed with Narcolepsy 2 years ago.  Ever doctor I went to thought I had depression and I refused to believe I was depressed.  It took me accepting that I had depression and seeing a psychologist to get a sleep study.  She clearly said to me that I just look tired ALL the time.  Boom...I had narcolepsy!!  I had some trial and error with doctors and medications.  I think some physcians are not familar with all of the medications and the combinations you might need.  I was taking nuvigil and I went psycho on it and had a very bad temper.  Tried Provigil and of course...moodiness and got some depression when it was increased.  However, my doctor flat out told me that I needed to exercise more to get my endorphines moving.  I was an athlete all my life so it was easy for me to include exercise.  It does help!!!  It even helps me sleep better at night which is very important!!!  I also started taking Melatonin to help me sleep too.  These are some suggestions that might help some of you!!  I'm currently taking 200mg of provigil and my doctor is going to add adderall and cut back on my Provigl because it's been giving me anxiety and I'm having problems with my boss at work. (moody)  Having Narcolespy has not been easy for me and everyone always thought I was miserable all the time or depressed.  For those of you dealing with a loved one that has Narcolepsy, try and understand and be supportive.  The best way I can describe the feeling is to you is think of having Mono, The Flu, or even the last time you were so exhausted you didn't want to be bothered and you felt sick. That's what if feels like for a Narcolep!!  THE SUN.....helps soooo much!!!  Help support your loved on by spending more time outdoors doing activities.  Let them sleep 15minutes...it sounds crazy but it's like an energizer for a narcolep.  Just 15 minutes will usually do the trick. If you don't have the right combo of medication, switch to another doctor!!  The best place to go is a TEACHING HOSPITAL!!!  I hope sharing some of my information and struggles will help!!  Oh and one more thing....try a little caffeine in the afternoon. Not too much but, you need to start experimenting with WHAT WORKS FOR YOU!!!!  You'll eventually get a good combo going!!! DON'T GIVE UP!!! I'M NOT LETTING A SLEEP DISORDER CONTROL MY LIFE!!!  I'LL SLEEP WHEN I'M DEAD!!! 

I'm 30 years old and I do not have narcolepsy.  I do, however, have ADD and a prescription for adderall.  I'm also a student of cognitive psychology (neuroscience) at the University of Kansas.  I hope that the comments I make here can actually help someone or set a few minds at rest about the adderall for narcolepsy issue.  It has been noted that those that suffer from narcolepsy have increased levels of a neurotransmitter called GABA (http://cat.inist.fr/?aModele=afficheN&cpsidt=20136974).  GABA basically calms the brain and helps you go to sleep, so too much and you have a hard time becoming alert.  It has also been noted that gaba inhibits dopamine (http://onlinelibrary.wiley.com/doi/10.1046/j.1471-4159.2001.00499.x/full paragraph 3 under Discussion, also http://www.jneurosci.org/content/12/10/3773.short). 

The short version of why this is important is that dopamine is the chemical that tells your brain that it needs to be alert.  It is the primary neurotransmitter involved in motivation.  It has a lot of functions but that's the short story.  Adderall is an interesting drug in that it works in 3 ways.  One, it reduces dopamine transmitter enzymes that clear dopamine from the synaptic gap (allowing more dopamine to reach the recipient cells), two, increases dopamine transmission and three, it can be accepted as dopamine when necessary. 

So yes, narcolepsy is one of the many conditions that can be treated with adderall.  It's effects are usually easy to adjust to and are mostly just quirky behavior.  It CAN cause one that may be interesting in some circumstances; it can cause hypersexuality.  It is also a vasoconstrictor so it can also increase blood pressure, in long term it can decrease muscle tone and for men, it can contribute to ED.  A supplement of L-arginine can help to alleviate some of these symptoms.  It is a vasodilator and has numerous beneficial side effects.

Have a nice day

My dr thinks that Nuvigil has stopped working for me and said the next step would be Ritalin or Adderall.  He said that one of the side effiects is high blood pressure. Has anyone experienced this? My BP is is usually 90/58 and any increase in that Im thinking would make me feel off and drained.

Just wanted to let you know that I am in the same boat. People who don't have narcolepsy don't understand.

Does anyone have narcolepsy and ADD? I am currently taking Provigil for narcolepsy but it certainly does not work for my ADD. I want to start taking Adderall but don't know if I can take it with Adderall. Was just wondering if anyone has both and what they take? Thanks.

Although I do not have ADD, I do take both Adderall and Nuvigil for Narcolepsy. I haven't had any "horrible" side effects, just an occasional headache. BTW. . . Nuvigil has the same or similar active ingredient as Provigil. :)

I don't have narcolepsy....I do understand. I have MS and the same tireness. I am being treated with the same drugs. I keep getting tired. God help me find something that works...I have kids who need me a business to run employees who count on me to keep it open. God bless you all. I am not alone. Thank you for listening.

I'm 25 and it took 5 docs and 6 years to finally be diagnosed with Narcolepsy.  I have struggled with all medications I have tried.  Nuvigil/Provigil specifically are also used in schitzophrenic and bipolar diseases-for me both of those medications seemed to make me bipolar and give me psychotic symptons.  Ritalin increased my blood pressure and gave me heart palpitations (no heart condition).  So I have recently been given Adderall.  It seems like a life saver!  Nothing treats the hardship of getting out of bed in the morning, but once I'm up Adderall seems to make me the normal me I was in highschool before getting the disease.  I can even handle drinking without having any negative side effects!  (Aside from getting drunker quicker due to a complete loss of appetite and being even more of a drunk chatterer!).  The main negative symptom I have experienced in the month I've been taking it is extreme dry skin.  Like, being summer this is freaking me out because even with a huge increase of my daily water intake, and covering myself in lotions, it looks like I shaved with a dull blade and no soap! I occasionally have heart palpitations, hot flashes, and wobbly knees, but nothing unbearable. Desire to smoke cigarettes has greatly increased and my appetite is gone. 

The more I read the more freaked out I am though.  Apparently I will develop a tolerance so what does this mean?  If I'm perscribed 10mg 2x a day (I usually take one a day though), ten years down the road how high of a dosage will I be taking?!  It can't be good for anyone!  Freaking me out more is reading that the drug is being researched further due to the research showing its probability to deplete our system of Dopamine, speeding up the aging process!  Also I've read that a small percentage of regular dependent users will develop signs of psychosis that are permanent.  I think we all know the beneifts about the drug by now, as long as it's been out-where is all the facts and research on these scarier permanent side effects that the drug doesn't want linked to them but is!???

I'm very frightened to think that I will have to be on medication everyday of my life, to lead a normal life, that will also negatively affect my life in other health and physical ways. Ugh.  I'd rather have Narcolepsy than a million other diseases but what a frustrating disease with little medical knowledge about it!

How long have you been taking adderall? I take 10mg 2x s a day but, I cycle it!! If I feel great because it's sunny outside, I skip it. If you skip a day here or there or a pill, you won't get used to it! Think of it as a morning cup of coffee, you have it everyday then you it does nothing. Skipping it will help you not get used to taking it therefore, you won't need to increase it. Were you coming off provigil/nuvigil when starting adderall? It takes a day or 2 to get those drugs out of your system. I felt like I was going to vomit if I ate but now, I'm used to it and it doesn't even bother me. Also, cut out ALL caffeine in your diet! This helps too! Do more research, narcolepsy network.com. It will help ease your mind. Oh and I take melatonin and 5htp to get a better sleep. It has help!!

yea i do glad im not the only one, strange combo

didnt know untill i took ritalin or adderal first time my mind was quiet ever!! been on meds for narc now 15 yrs tried it all adderal is the best

but not enough this yr im 48 and not sure what to do next