Narcolepsy Newbie

Hello all! I am very new to all of this, as I just got diagnosed yesterday (although my doc was pretty sure that the sleep lab results would confirm that I had narcolepsy, due to my symptoms and the fact that I have mild symptoms of cataplexy). The doctor started me on Modafinil. Anyone have experience with this medication? Yesterday, I hardly ate a thing (which, I want to consider a bad thing, but secretly, I was kind of happy about it), had a horrible headache, and my face was flushed for a lot of the day. Everything I've read seems to indicated that these are common reactions. I made the mistake of reading the entirety of the medication guide that the pharmacy provided me, as well as WebMD (big mistake), so I think I am having some psychosomatic itches (also trying to remind myself that I have bad allergies and my skin is always itchy this time of year!), no hives or rash to be seen. Also, as long as I'm medicated, are there issues with maintaining my driver's license? I live in Texas and I can't find anything specific regarding Texas State Laws and sleep disorders. As I mentioned before, my cataplexy signs are mild, and while I have periods of extreme exhaustion and feel the need to nap often, I never have fallen asleep with no warning. Any advice or information that anyone could share would be extremely helpful! Thanks happy to have access to such a wonderful community!

I think the license it state by state in Missouri I was only asked once by a doctor if I feel asleep driving which I do not and you can feel the sleep coming and that was that. I have seen 3 doctors so far and she is the only one who asked me that. You might research online your states stand on license. I have not tried Modafinil but did try Nuvigil was not good for me, I remember something about a rash that can be severe so I would keep a close eye on that. Medication can be trial and error that’s why I’m still up adderall xr at noon is not going to work for me. Sleep routine is one of the best way also to help and I think medication is more effective if you have a routine. Check out crazy narcolepsy blog it’s provides good advice too. Sorry for you diagnosis

Hi Bethany, and welcome!

There’s nothing wrong with reading the package inserts, etc :). If you get completely wrapped up in it that’s different, but if you’re learning about medications and how they work with you you’re probably pretty curious. Report problems or bad side effects, and positive results, to your doctor as you’re working as a team.

Driving. Narcolepsy can be a disability, and some people absolutely cannot drive because of severe symptoms. If your symptoms are manageable it would be discriminatory to force you not to drive, but laws that are discrimitory might exist in some states. Your doctor must have guidelines to assess for safety.

My doc would ask and then write in my medical record “she is aware that narcolepsy can affect alertness and she states that she is medicated while driving and will pull over to rest when tired.” I renewed my license by mail this year (Washington State). There was a statement: by applying for or renewing this license agrees that I have no medical condition that would effect my
ability to drive." That was new. Laws change, too. Driving is a really important topic and I’d love to hear from others. Be safe.

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I just got put on modafinil a couple of weeks ago. They started me with methylphenidate ER, but I had such severe side effects, that my doc HAD to try to get me approved for better meds. I definitely like modafinil better than methylphenidate period. It's smoother and seems to get me more alert. Nothing takes away the sleepiness fully though. I still can nod out while working, even while on modafinil. There's less sweating, less racing heart beat, less irritability compared to methylphenidate, but there's worse dry mouth, and worse stomach pains. I have more of an appetite on modafinil than methylphenidate, but I still don't eat much when taking the meds. Ultimately, I don't think there's anything to take without a side effect. It's just up to you on what you are willing to deal with.

Hang in there! I was in such denial of my condition, that for two years, I had convinced myself I was fine and could go without any meds. But, here I am, back on my meds, because it's almost near impossible to function in society without them. At least I tried. Even if I failed miserably. Just remember to be patient, and never lose hope. :)