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Seeking Adderall Advice: New N Dx 3/13, Nuvigil Gr8 But Led To Rash

Nuvigil rash adderall missed narcolepsy diagnosis Pregnancy trigger? Mistaken 4 fibromyalgia

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#1 Misseddx

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Posted 28 April 2013 - 08:39 PM

I am seeking feedback on adderall as a 2nd choice treatment for narcolepsy after nuvigil. (sadly, nuvigil likely caused a rash 4 me, so sleep dr said to discontinue last week.) My ?s @ adderall: What r the short & long term concerns from a sleep disorder perspective on being on adderall? I would like to b better informed. Does it lose effectiveness over time & do u have to take more over time? Do the initial side effects typically subside 'permanently' once you're body adjusts to it, or do I need 2 be concerned @ them long term? If u have 2 stop taking it, is weaning off (under dr instruction) an ok process or is it horrible? I've read the Rx inserts , webmd @ adderall, talked to pharmacist, etc. but am seeking advice from those w narc. I've found that this forum is an amazing resource & appreciate any input (also have not read all threads @ this topic yet). I started adderall today. Thx 4 any feedback.

Below is a longer post as background to my situation. Sorry 4 a long post (here/below), but have found reading others experiences w narc to be very helpful since learning @ my narc dx. i have had narc symptoms (without a dx of narc) 4 likely last 10-20 years... Perhaps sharing my background & experiences will help others:

- I'm in my mid 40s & was recently diagnosed with narcolepsy without cateplexy in Mar 2013 (via overnight/day sleep study via a reputable sleep medical practice). Based on my symptoms, sleep dr prescribed nuvigil 150 mg. After nuvigil, i learned what it was like to be able to truly function & have energy (worked within 2 days 4 me, with improvements in my energy over weeks). However, my "brain fog" (which is as bad or worse than inability to function from debilitating exhaustion) did not improve as much as I hoped (hoping it would improve w incr dose &/or getting better sleep @ night). I was planning to incr dose (picked up new nuvigil rx), but developed a rash on much of body (sleep dr asked to see it) & Dr. advised to stop nuvigil. The rash began to improve slightly 3 days off nuvigil. There may b another possible cause (taking prilosec) but dr thinks from nuvigil & did not want to take the risk w the rash. (He's willing to try it again later if other options don't work).

- Sleep dr has now prescribed a low dose of adderall- take 5 mg up to 3x/day (don't take other doses unless tired) then see how I feel; said to call to increase for new dosage if not effective. (FYI: Low dose adderall prescribed in part bec I have been going through withdrawal symptoms -- emotional ups/downs, anxiety, etc-- from discontinuing cymbalta under decr dose regimen of primary care dr. [sleep dr informed of this thru out]. cymbalta withdrawal is Not a fun experience & one reason why I am seeking to b more informed @ Adderall. Also, as fyi, My primary care advised I go back on low dose celexa while body adjusts to cymbalta withdrawal; I formerly took celexa 4 anxiety/depression & it worked 4 me.)

- Sleep dr has prescribed taking 3 mg lunesta nightly when dx w narc. I have taken it for 3-4 yrs a few times per week. (Worked usually). The combo of this plus nuvigil gave me my life back. Not sure how long lunesta will "last" (be effective) or if right for my need, but 1st steps.

- Since I'm new to this dx (in my 40s) & site, i have to say it is nice to finally have a dx that is confirmed & makes sense. I have had worsening symptoms of Narc for ~20 yrs and complaints of excessive exhaustion, plus other symptoms I thought were "normal" until I started to learn --after my narc dx-- they were narcolepsy symptoms from my reading. *** I see a huge need for increased patient & dr awareness @ narcolepsy.*** Without knowing I had narc, Ive always needed @ 2 + more hours to sleep than my age group (whether age 20 or 40) for very basic functioning (needed more sleep really), & struggled to get thru 40 hr work week. I had my 1st (and last) child at age 40; since then, everything has gotten worse (a major understatement) in terms of exhaustion problems/brain fog. I've read that pregnancy may b a trigger 4 narc 4 some... i was diagnosed with fibromyalgia but either have a mild case or don't have it at all (my mom had a severe case of fibromyalgia plus chronic fatigue syndrome, so these were suspect 4 me.) Since birth of my child, i also had some confounding medical issues to "explain" excessive fatigue (postpartum hypothyroid), chronic migraines & major stressors from work & caring 4 an ill parent, who died last fall. (Not to mention having a young child.... But Hubby has had to manage much of the care.). A yr ago, i was prescribed cymbalta (60 mg) to see if it helped w energy/pain. I didn't notice a difference or improvement from cymbalta. Since dx w narc, I do want to not take any confounding meds I don't need (Especially while taking stimulants) & asked dr to stop taking cymbalta (cymbalta can cause fatigue too).

The last few days off nuvigil make me realize how horrible i felt b4 nuvigil, how terrible I feel without nuvigil... But, an allergic rxn or rare but life-threatening rash (SJ) isn't worth it. But, I'm willing to try different options /meds. I'm open to non prescription, but like that prescriptions r regulated. .

Fyi: My sleep doctor recommended this website and forum and I have much benefited from the posts I've read. This is a gr8 site. Thx 4 the input & support. Good luck out there!

#2 malachi777

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Posted 27 May 2013 - 07:35 PM

HI There! I have been taking generic Adderall for two years now for my narcolepsy. I was prescribed 20 mg twice a day but found the crashes debilitating. What I decided to do was break the pills into 10 mg halves and take 10 mg every three hours. This has worked great for me! I would give that a try with the approval of your doctor first. Be aware that there will be occasions it seems the medication does not work and I do not know why. I am happy with it helping me get through the day on most occasions though. I do skip a day every week or so too. Since being on Adderall, I no longer suffer with the confusion and brain fog and as long as I stay busy, I will stay awake. It's funny how taking a pill and sitting still, I still fall asleep. I guess that's the overwhelming power of sleep. Be careful with taking all these different medications. I am scared to death to take Xyrem because I also have severe hypopneas and fear the nervous system depression it causes will cause me to stop breathing altogether. Good luck! 



#3 Just5MoreMinutes

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Posted 03 June 2013 - 02:26 PM

Hi, I also am using Adderall to treat my narcolepsy (switched from Provigil which wasn't working well). Adderall has made a remarkable difference in combating my EDS, plus the added benefit of focus and you can become very productive. Like other medications, you eventually build a tolerance and might have to up the dose, but what I do personally is that on days that i don't really need to stay up and perform, i will skip a dosage on purpose to kind of help my tolerance. I am currently on 2 15 mg pills a day which is working. 

 

Things to note about adderall:

 

If abused it can be addictive

It is an appetite suppressant

 

That's my 2 cents.



#4 DeathRabbit

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Posted 04 June 2013 - 10:19 AM

You might try a slower titration on the Nuvigil. Just start a subtherapeutic level (50mg) , take that for two weeks, then up by 50, rinse and repeat. Delayed gratification sucks, but it sounds like it was super effective for you. You could also try Modafinil, it takes longer to work and lingers in your system longer, so it has more insomnia issues, but I think with the longer half life and startup time, it makes it less likely to shcok your system. A 3rd option might be to take Modafinil for a month, then switch over to Armodafinil.



#5 Bunny23

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Posted 05 June 2013 - 09:33 AM

Hi I'm kind of late on this...

 

I was diagnosed over 2 years ago and started on Provigil and after Nuvigil. I had issues with insomnia where I had cycles of sleeping 2 hours a night for weeks (prior to narcolepsy diagnosis) and both made it even worse. I went on vacation while switching to Nuvigil and didn't sleep for 3 days straight. I was miserable.. 

 

My doc put me on d-amphetamine salts - Adderall 20mg extended release in the morning and also immediate release 5mg in evening (5-6pm). My pattern was coming home from work at 5pm and having sleep attacks in the car!

I also took Elavil and occasionally Ambien.

 

The Adderall does not work very well over time.. or at least didn't for me. So I would take it and have a cup of coffee maybe 2 hours later and it was fine. You want to watch your caffeine intake for the first few months.

I never had sleep attacks after being on Adderall even when it stopped making me feel so wide awake.

 

After 2 years I upped my dose to 30mg in am and 5mg pm. But I can take up to 10mg in pm. I rarely need the 5mg anyway because I find I'm sleeping better on the Elavil so I'm not so tired. If I don't take Elavil I wake up multiple times at night and need that second Adderall.

 

It doesn't really have side effects when coming off of it, it's a schedule 2 so I sometimes get lazy or forget to call my doc to send me a new script, and just take the 5mg x 2 in am, and 5mg pm.. works fine.

 

The only concern is really heart, you need to make sure you don't have issues. I don't think Adderall is a bad choice at all, I actually feel "normal" for the first 2 years of my life!!! 







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