Support & Discussion!

Hi everyone! I have not posted any discussion in a while. I wanted to put something out there in regards to medicine in general. I feel like the Provigil worked wonders at first taking one dose. Then they increased it to two doses. I feel like the medicine does not really work much anymore. Feel discouraged! Wondering if anyone out there has experienced this. I am a newly diagnosed patient this past year, but suffering since about age 16. I was so excited at first feeling well. Now, feeling terrible again. Some days seem to bad, while others are okay.

Unfortunately, each medicine works differently on various brain chemicals like serotonin. I successfully used Provigil for almost 10 years. One day, it just stopped working on the EDS (excessive daytime sleepiness). Discouraged is an understatement~ You may try Nuvigil which works a little differently on serotonin, etc. I found it didn't work for me. I absolutely HATE the amphetamine based meds. I also have panic attacks and an aversion to crowds which has gotten worse over the last two years. I think I have had an anxiety disorder all my life as well as the narcolepsy. Over the past three days, I have had two cataplexy episodes. One time, I was angry with my son who is bi-polar and then, another one the next day when I jumped up from a nap to wake him up for an appointment.

Also, you may want to take an antidepressant with the Provigil. It may help. Sorry I don't have a magic answer --- only questions with no answers --- just like you.

Thank you so much for responding to this discussion! I did take Nuvigil first then he moved me over to Provigil to take two times a day. I feel if I take it THE moment I wake up I do the best for a while. BUT I have three kids, two dogs and a husband so taking it gets hairy. I am not used to taking medicine and trying to get into the swing of it. I have good and bad days and it is a battle for certain. I hear your pain & feel it! I do share the not wanting to be in a crowd issue. I do not like to leave the home too much as I just pay for it later being tired, sleep attacks, micro sleep moments where I just disconnect and forget what I was doing. I work very hard as a pathology transcriptionist at home. This is good and bad. I stay so busy with it and some nights work very late. I have more symptoms on more stressful work/home days. I have never taken the amphetamines and will not be prescribed that by my doc. I would not take it anyway as I have heard these are issues with panic, etc. I do have "seizure activity" and am on a anti-seizure med for that. I just had a 2nd 24 hr EEG last week. Hoping it was all good and they can be done with that part of the diagnosis. I feel initially a year ago I had them because I was not diagnosed, no docs got it for so long, was surviving day to day. I as sleeping 10 minute intervals at night. I do feel my night sleep is better now so that is good.

Researchers are not sure whether our brains do not make enough hypocretin to support a healthy sleep/wake cycle OR if we have NO hypocretin OR if we have small amounts that are blocked by the synapses (or damaged) that are supposed to fire in our brain chemical cycle to maintain healthy sleep/wake cycles.

All I know is that there is no magic pill. I have been on the same meds for almost 3 years trying to maintain a healthy nighttime sleep cycle and nothing works. I pop up from sleep after 4 hours. Xyrem was a nightmare for me psychologically and physically. I recently tried Lunesta and it worked for the first few days. I was in heaven -- I slept 6-7 hours at night!!! Then, I went back to the regular disturbances and awakenings. I often think to myself, should I take meds or just let the chips fall where they may? I'm already considered disabled by SSDI. I have nothing to prove anymore. Going through the process of leaving a good job and then, having to prove I was really disabled by the narcolepsy was pure hell. By the grace of God, I got through it. (By the way, I take anti-seizure meds, too)

Im new here. I am at my breaking point with narcolepsy. It has drained the life out of me. Im worn out from trying to be normal- work-family. I have tried to find support groups-no luck. Want help- dont know what to do. Taking meds- trial after trial.