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Forum Name: Psychiatric Topics

Question: Adderall XR + tolerance = max dose?


 Stazzie - Sun Sep 21, 2008 10:59 am

I've been on Adderall XR for over 5 years. I was started on it due to extreme fatigue (sleeping between 18-20 hrs each day). The fatigue started nearly 15 years ago when I was a child. I've had the basic rheumatology workup as well as a sleep latency test (I fell asleep within 7 minute during each napping session, but never went into REM). Everyone says that I'm completely healthy (no one knows why I am so tired).

Anyways, starting Adderall XR was a lifesaver; I was able to function, hold down a job, graduate college, and be productive. I initially started on 10mg and have slowly worked my way up to my current dose of 50mg/day (I've been on this dose for over 1.5 yrs). It seems that I'll be doing fine on one dose for a few months, and then the fatigue catches up with me; so, they either increase my dose or throw in a different med (such as wellbutrin XL or provigil). Months and months will go by with a feeling of absolute exhaustion before my doc will intervene and adjust my meds. And then I'll feel well for awhile, and then the fatigue again catches up with me (and the cycle begins again).

For the last 6 months I've been again, completely exhausted. I can take my 50mg of Adderall XR at 8am, and have no problem napping for several hours from 10am to 2pm. I in no way am looking for a diagnosis, but wanted to provide some background regarding how debilitating this has been for me. Its like the world is in slow-motion; minutes seem like hours, and at the end of the day I wonder "Where has the time gone?"

My psych doc (who happens to be a new resident) has not been very reliable. I used to see my old doc 2 times a month. Since June, I've seen this new doc twice. I've had her cancel appointments on me last minute, or not return my calls for weeks at a time. I brought up the idea of taking Concerta on the weekends instead of Adderall XR to help combat some of this "tolerance", but her reply was "You're already on Provigil, which is basically the same thing as Ritalin - so Concerta won't do you any good; take a drug holiday once a week to see if that helps and I'll call in an Adderall prescription for you in the meantime."

Ok, I'm not stupid. You can't call in Adderall, you need a hardcopy. And also, Provigil is not Ritalin. And a drug holiday once a week? Give me a break! I am very knowledgable about my condition because I live with it every single day - and right now, I am functioning very poorly (increased sleep, forgetfullness, unable to take care of home tasks, frequent napping, etc). The competency of this new doctor troubles me.

I also am an registered nurse working in the emergency department, and I do feel that I have a pretty good grasp on the benefits as well as trade-offs for using stimulant medications. I feel that I have the knowledge to direct where I'd like to go with my medication management, and yet my words fall onto deaf ears. All I hear from my doc is that "patients who use Adderall XR really don't develop a tolerance - you should be able to stay on one dose for many years without a problem."

I'm wondering if this "tolerance" that I'm experiencing is common after taking Adderall XR for years. Also, I understand that the max dose of Adderall XR is 60mg - has anyone seen patients on a higher dose? BTW, I am in my late 20's and am 5'6" and weigh 150lbs (so its not like I'm a 80-pound child). Does anyone have any input on meds or therapies that have worked for patients experiencing similar difficulties with Adderall XR (long-term stimulant use, decreased effectiveness)?

Thank you for your time.
 Faye Lang, RN, MSW - Mon Feb 02, 2009 7:23 pm

Hello Stazzie,

Your situation certainly is complex, and understandably frustrating for you. The change in treatment providers has not helped you to feel secure that you're receiving the most appropriate medications. As you know, there are circumstances when the "maximum" (recommended) dose is exceeded. Primarily such action is to gain control of symptoms, and then the medication is titrated downward while adding other medications if needed.

If it's possible, request a second opinion regarding your medications since you have found the resident to be unsatisfactory. I strongly recommend that you keep a log for at least a week, including meds, times taken, fatigue episodes, naps, etc. If there is a pattern, it will help your doctor medicate accordingly. I am concerned that you may also be coping with a Major Depression episode, which would explain some of your symptoms vs. Adderall tolerance. Generally speaking, developing tolerance as you describe is not common, which is what makes me suspect you may have an unidentified condition such as depression.

Being able to advocate for yourself is important in any treatment, and it appears you have no problem in that area. Providing objective data, such as the suggested log, is the next step. I wish you good luck in resolving your issues.

Faye, RN, MSW
 Stazzie - Mon Apr 20, 2009 10:42 am

After having a new sleep test at the beginning of April (overnight plus daytime nap), I have discovered that I have narcolepsy. My previous sleep back in 2001 did not include the overnight study and the doc didn't withdraw my meds at the time (I was on paxil at the time, which I guess surpresses REM).

I'm happy that I finally have an accurate diagnosis but at the same time I'm upset that I've been put through the wringer for the past 15 years. I'm not sad, hopless, or depressed; just sleepy! I can nap anytime, anywhere, Excessive daytime sleepiness has pretty much been my first and foremost complaint; then, about 5 years ago I developed sleep paralysis and complained of difficulty speaking at times (which may have been mild cataplexy because it would feels as if I couldn't talk properly).

Thank god I'm finally on the right track. I cannot tell you how many people have said "maybe you're depressed, take this pretty little pill"; my case has been the exact opposite. I thank you for the reply but must state that I am not depressed; just frustrated that no one seems to listen to me.

I'm looking forward to taking Xyrem and alternating different meds to combat the tolerance that I've been experiencing on my current adderall dose. My new sleep doc confirms that tolerance with adderall is common in patients with narcolepsy, so I'm happy that I'm not the "odd-one out".
 Brandon311 - Sun May 31, 2009 12:48 pm

I think maybe you should have your hormones checked becouse maybe you don't produce a certain hormone. I would check maybe mysterious illness or diganosis of tv to find out more.
 Bee1983 - Thu Jul 15, 2010 12:54 pm

I cant consciously say whether its realated to depression or not, but I am very intrigued by your original post. I myself have been in almost the same position, but with a little different circumstances of coarse. Here's my situation in which I am referring too:

I was active duty military, had never been in trouble in my life, and all of a sudden I couldn't wake up to an alarm clock which I had been doing since I was 7years old. Consequently I started getting in a lot of trouble with the military for being late to work. I slowly worked my way to 6 alarm clocks and would still would not wake up, and I actually ended up having to move in with some one I worked with in order to make it to work on time. To make things look worse I was in charge of managing a family medicine clinic so of coarse I was in charge of quite a few people. Its not really relavent or I'd describe my entire experience so a non military person could fathom the extent of trouble my sleep problems were causing me. Not only was I late I'd fall asleep at work!

Do to the stress I started to see a counselor before I ever saw a Neurologist because things were so bad at work, and at home because everyone knows when your in the military your married to them. They can full rein to affect every part of your life, and I was at my breaking point so I saw a psychologist. He was nice and put me on Provigil but I didn't even notice that I had taken it. Slowly we worked our way from Provigil, to Adderall, to Concerta, to Ritalin immediate release.

My first Sleep Latency Test result was 41 seconds and I had taken my ritalin that day because they never told me to stop taking it prior. I was also in REM constantly. My Sleep Latency Results were so fast my doctor didn't believe them, and schedule me a second test. THis time I had to stop taking my medication two weeks prior, keep a sleep diary (which was crazy to see the change), and my appointment was 24 hours. First I did the night time sleep study, so they could see I was sleeping, and then I stayed and did the "Nap Tests". For me the Sleep latency Test is one of the hardest things I had to do without my meds. This time the technician had to keep coming in the room, waking me up and telling me to walk around. This was all video recorded of coarse. Then, I believe at my third nap I was in REM before my eyes were even closed. I feel bad for the technician because I kinda yelled at him at the fourth nap when he kept waking me up. Its like I have to fight my body to stay awake, and when you put me in a room with a bed and tell me to stay awake...Ha! After the nap where i went into REM with my eyes open they just left the electrodes hooked up constantly instead of taking them off inbetween naps. Then after the fourth nap they just let me sleep for the fifth and I was in REM constantly. My Sleep Latency Test came back with a sleep latency of 0 mins. My doctor read this test himself and watch the video recording of me and to make a long story short...I was his career topper at that point.

I have the same issue with my meds. It was like my body cycled and no matter what medication I was taking my body was just gonna sleep. I call it my sleep cycle, and its about every 3 months there is a 1-2 week period where all I do is sleep. One time I slept so long and so deep that I didn't move and ended up bruised the whole side of my body that I was laying on. The only medications that work for me, after trying every medication used to treat Narcolepsy, is immediate release Ritalin. The controlled release medications would not be at a constant level in my body and I would sleep in the afternoon on them regardless of the dose. This is what I thought you might find interesting. When I take the immediate release I take is 3 times a day and it last me all day just fine. Though, I do notice after about 2 1/2 months my meds aren't as affective as they usually are so I wait until my "sleep cycle" on the 3rd month and I give myself however many days I can fit in to do nothing but sleep whenever my body wants, and that's when I take my holiday from my meds. They also added another medication after the last sleep study, dexedrine. So I was taking 20mg of ritalin in the morning, noon, and sometime between 4-5; and taking 5mg dexedrine tablets (immediate release) twice a day, alternating with my ritalin doses.

I just wanted to write this so you know your not alone in the frustrating, aaggravating struggle just to live your life. At first I got a little depressed because I felt like I was sleeping my life away. Once you find a medication regiment that works for you things will be better. It took my over a year of trying different medications and medication combinations before I found something that actually worked for me. And for me, the only thing that even comes close to managing my narcolepsy are short acting medications, immediate release medications. For some unknown reason its even prevents the paralyzations where you go into REM while your wake, thats scary!!! You feel like you cant move or breath even, cause your awake inside but your eyes close and your body is paralyzed because that's what your body does when your in REM except your awake.

Good luck with everything. The only other thing is you need a doctor that understand narcolepsy and sleep disorders because they will understand your situation better and will gladly work with you to find the right medication regiment.

Best Wishes!
 Faye Lang, RN, MSW - Sat Jul 17, 2010 7:48 pm

Hello again, Stazzie,

Thank you so much for updating us on what has happened with you and your treatment. I do know how frustrating it can be to hear the "easy" response of "depression", but as you know, when trying to unravel symptoms and discover the underlying cause, it can be a matter of taking one step at a time. It seemed reasonable at the time to rule out depression, but I'm sorry I didn't also suggest a sleep study. In retrospect, it seems so logical! I sincerely hope you're doing well now that the true issue has been identified. I wish you the very best of luck.

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