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As it's been more than a year since this information was posted by caveman42, perhaps this reply will never be seen, but I just want to say thank you for posting this info because the explanation about how Adderall works is very helpful to me in the search for answers regarding the treatment of narcolepsy combined with ADHD Inattentive type. Thank you!
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Was diagnosed 46 months ago. Currently put on 20mg adderrall 2x p/d. I have told the sleep study doctor I am still falling asleep even after taking medicine. I inquired about provigil or ER Adderall & he always says ur insurance won't cover it. I actually contacted them & they said that they will. Seen him today& he had a total attitude & said I'm ordering another sleep study. If the adderall isn't working then there's no point in me treating you! Don't even think that's legal, but why am I being punished like I did something wrong? I'm not asking for more medication I'm only asking to try something different! However it turns out I wanted to tell u that ur article is the first one that lifted my spirits & realize that some doctors just don't understand narcolepsy. I'm frustrated that I have to deal with this jerk, he never even brings a file in the room when he sees me. Today I was supposed to get the results of my cardiogram & he brought in nothing & was about to walk out when I asked how the test results turned out. He said if I recall everything was fine! Well what if u don't recall correctly? I'm nervous about finding another sleep medicine doctor as there don't seem to be a lot in my area. Can my family doctor take over for my narcolepsy since she is was the first doctor that suspected it? Again thank u for sharing ur story & inspiration, it absolutely goes a long way especially on a day where I feel hopeless like today. My Moto was always ILL SLEEP WHEN IM DEAD then 10 years ago I literally couldn't stay awake at work, driving, talking to friends, sitting in a waiting room. I was accused of being on drugs & it severely damaged some of my closest relationships. I'm living proof that it's not a disease that you have any control over, I've had the biggest fights with my loved ones trying to explain what I feel like. Please go with your family/friends to the doctor appointment so u can educate yourself & not judge them. Trust me we beat ourselves up bad enough & feel guilty everyday for missing out on so many important things in life.

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That should have said 4-6 months ago, not 46 months ago!
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I read your post and have a question. Is there any research on what the long term effect of narcolepsy/ little REM sleep?
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I have been taking Adderall for almost 10 years. They ran the regular gammit of medicines first. Provigil (I developed seratonin syndrome - suicidal thoughts, etc), Ritalin (horrible headaches). Adderall has worked well for me. Some side effects have been my teeth weakening and jaw clenching. Through the 10 years, I have gradually developed a tolerance and increases in doses. For the last few years, I have been prescribed 30mg 2x's a day. I don't always take the second dose, and sometimes only half of the 2nd dose. Even on days I take both, it doesn't help like it used to. My whole life, I have had low blood pressure. Until the last two years. It is still considered in normal range most of the time, but now I have A-Fib and my bp jumps really high then back low. Possibly have unstable angina (not enough oxygen rich blood flow to the heart). Pulse becomes rapid, and heart pumping less effectively. It appears it is time to consider alternatives or sleep away thevrest of my life. Oh, added Bonus (sarcasm)...increase in depression and anytime they try me on an antidepressant, I go into norepinephrine & dopamine overload. So, in short, in the early years it was a wonder drug for battling the eds, now I get to pay the piper.

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I am sure there is research on the long term effects of narcolepsy. But, from life experience with it, best I can explain is on going sleep deprivation, aging more rapidly (as sleep is the body's restoration), and a growing agitation with life. Year and years of having to fight just to keep up to most people's norm tends to lead to depression, lower income, higher medical costs, and less enjoyable times.

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Sorry to hear about this. I'm 45 and just diagnosed with narcolepsy a year or so ago. It negatively affected several previous relationships, but since getting the diagnosis, it's opened up lines of communication and empathy that hadn't been open before. Get a sleep study! Sounds like he's struggling.
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I'm 24 and have been diagnosed with hypersomnia. I am prescribed 15mg adderall 4x a day if needeed, but I like to stick with two so my tolerance doesn't rise too quickly. I've been on it for about 7 months now, and I have been noticing new symptoms such as cold fingers,toes, and nose which I have heard is normal, but I feel that my heart is beginning to beat harder and my BP has increased. (side note: I workout everyday and am very healthy and all vitals were normal before I started) I guess my question is is there a point where I should switch to a new medication? I am afraid that I am doing damage to my heart that will show up later down the road so I want to know if other people have experienced this.
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Not sure you will get this it's been a year since you asked, but in have both. I take adderal and it helps for both. You cannot take them both.
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Be very careful taking 5HTP and Melatonin with Dexamphetamines tablets for Narcolepsy as you may end up with Serotonin syndrome which is a very serious condition
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That last paragraph is seriously spot on. I feel like that still.

I’ve been diagnosed with Narcolepsy for 9 years now. It took almost 4 years to get a proper Med regimine down. I’ve tried them all, and when I switched back to to taking Adderall , I started off with 20mg XR once Daily. I am now taking Adderall 60mg Xr in the am, and Adderall 20mg IR in the afternoon. I don’t particularly like having to take such a high dose everyday , and to be honest I kind of don’t feel like myself anymore. I went through the same thing with smoking too. I actually never smoked before I started taking meds. my skin is still pretty dry, mostly just my hands. I used to work with clay/ceramics , and had some “o’keefe’s working hands” cream leftover so I started using that again and it really helps A lot.

I hope I’m not freaking you out, I just wanted to share my experience. But ya know, every person is diff, and your doctor might take a totally different approach to increasing your meds. I did adapt to dosages pretty quickly. And honestly I’m still kind of tired throughout the day, but that’s just me.

I hope some of this helps you out!

Also, it’s really nice to talk to other people with Narcolepsy. I never really tried to before, and as much as this sucks, hah , it’s nice to know other people know how you feel and what you’re going through.

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My daughter had narcolepsy she is 17 it’s is tuning her life she is on Adderall she is moody all the time can’t eat is at 83 lb no energy out of breath when she goes for a walk she in her room all the time except for school she don’t know how she will ever work she don’t sleep at night melatonin don’t work I hate seeing her like this she falls when someone makes her laugh does anyone know of anything that will help her she got the rest of her life ahead of her
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