How long did you take to find the right treatment?
I know there are many different drugs to deal with narcolepsy. Unfortunately, not all of them are legal in every country (some of them are not allowed in Chile, where I live). So my doctor began trying with some drugs. I suffered strong and long-lasting side effects so the drug was changed for another. In the process, leaving the first drug also had consequences. It seems that the right drug is finally found to be trial and error. Do the side effects ever end? How long did you take to find the right drug?
Many months
Do you feel satisfied with your current treatment plan? Has it proven to be helpful in reducing your symptoms? Personally, I find that medications do HELP, but don't even come close to eliminating my narcolepsy symptoms. Hope you are doing well! Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)`
Unfortunately, I am no longer on a treatment plan due to experiencing a horrible adverse effect.
Up until the end of this year, it was working. However, I did have to switch to different meds throughout my journey, but they did work until they no longer did anymore. If that makes sense. Lol.
I was diagnosed when I was 19 and I am 42 now, so I've had quite a long run with trying different things. I guess they just lose effectiveness after a while. 🤷🏾
So now I am using my naps as my treatment until my sleep specialist can find an alternative.
I’m doing quite well on Pitolisant and Methalphenidate. My first medication, Mazindol was unfortunately discontinued
Hi
, I'm glad to hear that you found medication that works! Best, Allison (Team Member)
I refuse to take a medication any more. It's more exhausting than the narcolepsy. I am struggling but I know what to watch for. Being medicated by trial and error has to many unexpected side effects. I have enough side effects from the narcolepsy to deal with.
I even screamed to my doctor does it ever get better. I literally screamed out of frustration.
