What medications have you found to work for you?
For the first time since I was diagnosed 16 yrs ago, I finally have health insurance. My #1 goal is to find a rx that works for me, or a routine. What rx's have you found to work for you? Just looking for some suggestions because honestly, some of these dr.'s have no clue about narcolepsy. Thank you. (Narcolepsy Facebook member)
Finding a medication is rough, there are so many! zi've been on dextroamphetamine (dexedrine) for more than 25 years. Before that, I tried everything, when they come out with a new med, I try it. Xyrem did help however, it gave me such a horrific migraine every time I took it. After being on dex. for SO many years, I've built up a tolerance yet, still can't find anything that works. (I'm type 1). There are so many meds to try to find one that works for you, because they work for someone else doesn't mean they will work for you. Google search narcolepsy medication and make a list of what you've tried so that you can easily know if you've tried it or not. Good luck to you, I hate this disease!
I started off with Ritalin and took that for a good five years until it became very obvious that the stimulant side effect of had caused me to lose an incredible about of weight! I was an adult shopping in girls 12-16 size clothing! Didn’t look healthy either! Around this time clinical trials for Modafinil came around so I stated, so I gave that a try. Not the best of effects on me and only to find out in the end that I was taking the actual medication not a placebo. So it was quickly back to Ritalin for me for another 21 years and still going! Unfortunately for me, 20 years ago I was diagnosed with multiple sclerosis and the fatigue from MS combined with the craziness of narcolepsy have been a nightmare! I’ve gotten lost driving, ended up asleep in random driveways, etc. I’m thankful that the Lord has watched over me and I’ve never been in a motor vehicle accident due to narcolepsy. It did make parenting extremely difficult, but they’re all grown and doing well!
Tanya
What a challenge that must have been,
, parenting with MS and narcolepsy. You have my respect and admiration, for sure. Are you aware that we have a sister community for people with MS, MultipleSclerosis.net? It is a very active community. You'll find lots of support there. Is Ritalin still causing you to lose too much weight or have you been able to find a balance? Wishiing you the best. - Lori (Team Member)
I take 200 mg modafinil 3x a day and 150 mg sunosi 1x a day and I'm STILL tired.
How frustrating. Is your doctor exploring any other options or would you have to get an official diagnosis for that? Warm wishes. - Lori (Team Member)
I am 68. I have been on Modafinil 400mg and Ritalin for 24 years. And thank the Good Lord, that has allowed me to have daytime wakefulness, to drive as safely as the next guy, All these years. And even allowed me to drive long distances, to help others move, or get to their Dr appointments. If they just let me continue, after forcing an updated sleep study, I will feel like a productive person, for the most part.
How wonderful that you have found a mix of medications that has been effective for so long. I hope the new sleep study goes well and that you are allowed to continue on your same medications. Thanks for chiming in. - Lori (Team Member)
