I am new to narcolepsy. I am currently on nuvigil but it only helps a lil what can my neurologist add to this? I’m very frustrated. Thank you in advance.
Ritalin
My progression of meds included Nuvigil, which didn't last all day, and then to Provigil twice a day with a Zolpidem nightcap. Seemed to work okay but then decided to try Xyrem in place of them all. After 6 months I quit due to a bad reaction to the drug. Now I take Ritalin or Modafinil daytime and Zolpidem or Temazepam at night which seems to be a good regime. Most of my life I struggled with moderate depression but have concluded that it was primarily lack of stage 3 and 4 sleep due to narcolepsy. Hope my experience helps.
I am new to this to but was previously diagnosed ass ADD as child to about 3 weeks ago when MSLT has sleep onset of 1.5 and REM of 2.5 onset on all naps. So basically no denying my condition, I am glad to see someone responded to you because what I have observed is not too many like to talk about the medicines and there does appear to a divide in anti stimulates/anti vigils. Or pro/vigils anti/stimulates. I feel the general consensus is vigils are better and in someways a group has formed out of this "I take vigils so therefore I’m not drug seeking. " Now what this is actually doing is placing division in a group that should be fully unitied because the real deal is others can not take vigils, not because they want euphoria from stimulants but because they want life. It is hard for someone who did not experience the bad reaction of vigils to understand that. I was so confused on vigils I signed my co workers sympathy card Happy Birthday and would just go home and stare off, my words did not come out right was by far my worst reaction to medication. Adderall never did that? So why is it ok for ADD to take stimulates but iffy for narcoleptic who generally would benefit and change their quality of life. Start with the vigils because it’s 50/50 chance of working and you might be one of the lucky ones. They will push xyrem but again it’s a trial and error and could work, it is expensive but I do believe they have assistance. I’m not willing to try yet will be my last resort. Good luck you will figure out what’s best for you and they are your doctors-they work for you, you hired them for help if they are not helping you find one who will be compassionate you are your best advent
Jeanetta said:
I am new to this to but was previously diagnosed ass ADD as child to about 3 weeks ago when MSLT has sleep onset of 1.5 and REM of 2.5 onset on all naps. So basically no denying my condition, I am glad to see someone responded to you because what I have observed is not too many like to talk about the medicines and there does appear to a divide in anti stimulates/anti vigils. Or pro/vigils anti/stimulates. I feel the general consensus is vigils are better and in someways a group has formed out of this "I take vigils so therefore I'm not drug seeking. " Now what this is actually doing is placing division in a group that should be fully unitied because the real deal is others can not take vigils, not because they want euphoria from stimulants but because they want life. It is hard for someone who did not experience the bad reaction of vigils to understand that. I was so confused on vigils I signed my co workers sympathy card Happy Birthday and would just go home and stare off, my words did not come out right was by far my worst reaction to medication. Adderall never did that? So why is it ok for ADD to take stimulates but iffy for narcoleptic who generally would benefit and change their quality of life. Start with the vigils because it's 50/50 chance of working and you might be one of the lucky ones. They will push xyrem but again it's a trial and error and could work, it is expensive but I do believe they have assistance. I'm not willing to try yet will be my last resort. Good luck you will figure out what's best for you and they are your doctors-they work for you, you hired them for help if they are not helping you find one who will be compassionate you are your best advent
Xyrem gave me physiological problems and only used it for 6 weeks, MY favorite was Ritalin 10 mg x 2 per day, and 2nd would be Modafinil 10 mg x 2. Of course there's night time of which 10 mg of zolpidem work although 30 mg of Temazepam was superior..
Ranger2, what type of physiologist problems were you having? I take Xyrem and I barely know I have narcolepsy.