Long term effects of Adderall for Narcolepsy

I have Narcolepsy and MS. Before receiving the diagnosis of MS, I blamed the Narcolepsy for every tired day I had. There were just some weeks that I would ask friends for prayer saying the Narcolepsy was kicking my butt. As for medication, I used Adderall for many years, but have now stopped. The Adderall worked great in the beginning, but I began to notice a couple years ago that it made me VERY irritable and on edge. Prior to Adderall the doctor tried me on Provigil. It was like a placebo for me...didn't touch the Narcolepsy. I have also tried the Nuvigil which gives me a sudden burst of energy for an extremely short period of time...maybe 20-30 minutes. The Adderall worked great prior to the irritability. I agree with the person who responded by saying that it's different for everyone. Like lisasm, I rely on God to help me find something that will work. For those of you with severe symptoms of Narcolepsy, I encourage you to speak with your doctor about trying Xyrem. Of all medications that I've tried, this was my miracle drug...again, not for everyone, but worked great for me! I woke the next morning without any problem and feeling like I could conquer the world...a feeling I've never experienced before nor since.  God Bless and thanks for sharing!  It's nice just to hear from others who really understand!

I am a 41 year old female and was diagnosed with narcolepsy 12 years ago. I am taking adderall. For the past 5 years or so i have been picking at sores,pimples and hair folicals on my face and my legs. My children believe it is the Adderall causing me to want to mutilate my skin. I am looking very old quickly and I look like a meth head. I was wondering if their is anyone who has the same issues or has a clue why this is happening.

          Jean 1002,

    omg i just got back from the dr for the 100th time with all thinking i have narcolepsy but i can never get the daytime sleep test because my night tome sleep test come out that i did get quality sleep so they wont do the daytime test, but explaining to the dr the 4th one i started wondering this sounds crazy but i just read your and it to a tee i mean excalty what you said word from word is how i am, ive been on adderall for a very long time and if i dont take it i would go back to the i could sleep for days and the more i sleep the worse i feel i never feel rested , so the adderoll helps even though i stilol have to work at ataying awake i can control it better please email me lets talk.

lori 

;_[removed]_

hi me being the one with narcolepsy and my husband being the one who is affected by it ,, hang in there we truly can't help being so tired we have to sleep. have him get the sleep study asap,

lol great i love this

ill tell u what i take for adderall i take 30 ml pills 5 times a day

I was diagnosed with narcolepsy/cataplexy a year ago and I started taking 37.5 mg of Effexor for cataplexy and since insurance wouldn't cover Nuvigil I was on 40mg ER Ritalin. With Effexor cataplexy stopped almost completely. The only time I had problems was late at night watching a funny movie or something. After a while I started noticing that while I was awake and not having cataplexy I was numb to the world, had no energy, and was feeling depressed. I'm not prone to depression at all so this has been really weird for me. After about a year of it I decided last week to stop taking Effexor (which is brutal to come off of) and while I have cataplexy, sleep paralysis, etc, my "life" has returned. I can think clearly and I feel great. I am going back to my Dr. to try and get on Nuvigil if insurance will cover it now. I wish there was something else I could do besides medication but...there isn't...

I have narcolepsy and ADD. I currently take Dexedrine and Straterra. I also take Adderall as needed for "bad days". In the past I have tried Cylert, Provigil, & Concerta. My current regimen is by far the best thus far. Hope this helps!

Your husband may suffer from sleep apnea. Some individuals have this in addition to narcolepsy. A proper sleep study will include a nighttime study as well as a MLST, which is a daytime test. Either way, he will be a new man with treatment. Hope you find answers!

I was diagnosed several years ago for Narcolepsy, same thing, in a cloud all the time, but I would definitely nod off at strange times, during conversations, in traffic, as soon as I'd sit down on a couch, etc...I was prescribed Adderall and I did experience some pretty serious side effects, not knowing of course they were due to it until I stopped taking it.  I was taking Adderall for 4 years and it always made me uncomfortable that if I missed a dose or didn't have the money to get my script on time that I would go into withdrawl and become very angry and irritable...did not like feeling like a drug addict (it is after all an amphetamine).  About 2 1/2 years in I developed gastrointestinal problems, i.e. Colitis, as well as some ticks.  Now I did like that it gave me energy because that part did feel great.  In the year and a half since I've been on nothing, I've just been keeping a steady stream of caffeine in my system and as soon as that's out, usually by 10 pm, I just end up crashing out hard.  I do still have some of the ticks, which I am not happy about, and there's a couple other things that may be attributed to this, but not for sure.  I will say that my Colitis symptoms have mostly all disappeared since I've been off it though, as I no longer have to take meds for that!  I am currently looking for an alternative to Adderall, hopefully something not quite as addictive and not an amphetamine, but I need to find something soon because I think I've staved off this feeling for long enough and I can't keep ingesting caffeine like this, I need a break!  Oh, and I'm 31 years old, been feeling this way since child hood, more so since junior high and it just increased as the years passed...

Are you still on Xyrem and if so, do you still feel great in the mornings?

I would reccomend not to continue taking adderall because the long term effects are brutal. I am 23yrs old now and had narcolepsy since I was 16. I been taking adderall for 3 years now and the most common long term side effect is depression. As you already know narcolepsy and depression go hand in hand, aderall increases the symptoms gradually. I would reccomend going to a naropathic doctor, a doctor that is willing to help their patients, not just a normal doctor that everyone goes to because they are all corrupt. Drugs do not fix a persons condition they only prolong the issue. Natural alternatives are the answer. Period.

Whatever problems you have, eventually adderall will make it worse.
I'.d keep looking for a healthy resolution to your sleepiness, like diet, allergies, hormones, etc.. and do your research.
I learned the hard way, you cant hand your health blindly over to your doctor. They are handing Rxs out like candy, and there is no incentive for real healing that doesnt get you hooked as a life long addict.
I tried to quit over and over for a year of hell---and even though I have never had a problem with drugs or addiction before--- I kept going back just in order to function.
But I was hardly functioning on the pills. They stopped working. I was prescribed different pills, but it didnt matter.
Even though they weren't working anymore, I had to keep taking them or I'd be crippled with
withdrawal / depression. So the dose was increased, but the increased dose just made me crazy.
One week, I couldn't stop sewing for 3 days- no sleep- no outside, just sitting at my sewing machine like a maniac until I finished a garment.
Of course, there had been a period, a blessed time when I was having a love affair with my adderall. It was my best friend. But when it went bad, I realized I was deeply screwed by this "friend".
You will have a long hard road ahead, but it is worth it to be free.
Whatever you do, just never take another pill again.
Breakdown:
Before adderall you are at 5.
During adderall you are at 10.
When adderall stops working, you dont go back to 5, where you started, you go below, to 1.
Climbing back up to 5 is a humbling experience, but I have learned to love me at 5.

I'm 28 years old and after suffering with Narcolepsy for 13 years I was finally properly diagnosed last year. For 13 years I had to hear over and over again that I had depression. A doctor heard the word "sleepy" and was very quick to write out a script for Antidepressants.. After putting me on every pill on the market only making me sleep more and more I finally just stopped taking whatever they prescribed me for depression. I just knew it had to be something else, I just didn't know what and never would've guessed it was Narcolepsy! UNTIL, I had gotten online one day to do some research for my son who has ADHD and a servey popped up asking numerous questions that were very interesting.By the time I was done answering the multiple choice questions, it's ended with "Speak with your doctor about Nuvigil" A medication I myself have never heard of. So I did what any normal person already on a computer would do.. I googled it!! lol And what completely taken off guard by what it had to say about it and what it was prescribed for. My first thought was "I DO NOT HAVE NARCOLEPSY!!" Yes, I got defensive because all I could think of was the movie Duece Biggaloe and the scene where he had to tie the girls pigtails up to stop her from drowning in her soup lol so then I did some more digging to find that Narcolepsy comes in many stages.. I finally let my defenses down and brought it up to my doctor and went to a sleep specialist. After a sleep test was done, it was official... I HAVE NARCOLEPSY!! Excessive daytime sleepiness, shift work sleep disorder, Cataplexy & to top it off I SLEEP WALK! First, I started out on 150 mgs of Nuvigil and after losing 26lbs in less then 3 months, I had her switch me to something else, PROVIGIL 100 mg.. it didn't work so she bumped me up to 200 mgs 2-3x's a day... However, Now I'm finding myself at a dead end again.. The Provigil is no longer working and I can not concentrate to save my life. I lose focus like a 3 year old child in a toy store. So on my own I have decided to try Adderall with the provigil but lowering my dose while doing so.. and it seems to be working just great!! But I wonder, Will I constantly be finding myself at a dead end like this with these meds?? Also, I have absolutely NO appetite what so ever and I can't stand that! And it's so hard to force myself to eat... However, I've come to weigh out the pros and cons with this and I would much rather be a Mother to my children and be there for them instead of sleeping their childhood away and be skinny then to sleep thru everything exciting in their life. It's just a choice that needed to be made. I missed enough of thier lives and of my own!! Now it's my turn to fight back!! I wish everyone the best of luck.. it's not easy & it's definitely not easy to find people that understand what it's like without criticism :-)

I also have narcolepsy and ADD - though since I was recently diagnosed with Narcolepsy, I'm not sure if the ADD was real or just my brain jumping around desperately trying to stay awake.

To answer the original question, in my OPINION, Adderall for narcolepsy is playing with fire, and boy was I burned. I, too, started at 5mg 2-3 times a day. That worked for about 2 years and then all the sudden it didn't. Within 3 months I was up to 60mg. I'd wake up an hour early, take all 60mg, and go back to sleep hoping that it'd help me get up in the morning. It didn't. Finally, I said f*ck it, I'll just take as many as I need to stay awake all day, which turned out to be around 300mg, enough to put someone in to psychosis. It was then that I realized I had to quit. Amphetamines are no joke.

I'm on provigil now (100mg 3x daily) and it helps me function like a normal person during the day, but does not have the same focusing effects as adderall. I'll take what I can get at this point. I am worried that someday Provigil will stop working but it will be nothing like going off adderall. Be careful!