Sleep Disorders Community

Hi Monahsetah,

Thank you very much for sharing your own experiences and providing this information to the members here. I really hope it helps others who may be experiencing the same.

Very true in discribing the HH's at onset of sleep and on awakening. It should be noted that this can happen to a person that doesn't have an actual disorder. HH's are useually very vivid and there occurrence is more often in the number of times they appear in those with a chronic sleep disorder. I am also Narcoleptic with Cataplexy. I have REM intrusions throughout the day, they usually co-inside with a sleep attack but they have been known to happen without the symptoms of a sleep attack. It has taken me a long time to learn to cope with the distractions of my brain going off to netherworld, I thought I had it under control but it seems the older I get the worse I suffer from it and it seems to me that it is now almost impossible to be able to cope with it any more. I have spent the last 4 years trying all the different treatments (chemically) and I am at a point where the meds just don't work very good or they cause bad side effects. I started my treatment back in 1986, and gradually through the years made adjustments to my life style and career so as to be as safe to myself and the general public. It is still a huge concern of mine for public safety but it seems that the Govt. still doesn't seem to think that driving while you are at an attack risk, is a problem. There still needs to be more awareness of the dangers that we can impose on the public due to the seriousness of Narcolepsy. That being said, there needs to be a better understanding of the various levels of severity in symptoms that are displayed by individuals with sleep disorders. I have experienced many of these levels through out my life dealing with Narcolepsy. They range from mild to medium (meaning, managable without to much risk) and to a level of being disabled. As we get older, it's hard enough to compete for employment without having any health issue to deal with but when you add the health issue in there you suddenly become unuseable to this world and it's work force. So like a broken part you are discarded never to be of use anymore. That is when you make the attemp to recieve what you have been paying in for for so many years, only to add to the struggle for the existence of being awake occaisionally.
This bit of discouragement has been brought on by my circumstances that I have experienced this past few months and by no means do I wish any ill regard to any person. This is just another slice of the struggles that we face. Struggles that I am sure will continue as time passes by. May you all become more informed and stay educated on our struggles.
Hugs
sleepingmikeawake

hi i was wondering if yo could tell me what has helped you i was told i had sleep apena so for three years i was using cpap but as time went on i was just getting worse with symptoms as you were saying and day time sleepiness bad daytime sleeplessness I had more sleep studies and now there saying i dont have sleep apena I have restless leg and teeth grinding and s on and my sleep studies are so bad that they wont do the daytime study for narcolepsy so I wont get treated for that so anyway for years i have been dealing with this just wondering what helped you

I recommend you get a second opinion and remember it is your health. The day time test is very different from the night time test. Also, they will not be able to treat you as effectively if you are not diagnosed correctly. If you believe you may be narcoleptic then push for the day time test.

I feel the same way. I can't work because of my sleep attacks but can't get disability either. It is a no win situation. I just get looked at like I am a bother to everyone. I seem to get hurt every time I have an attack and need someone to be around all the time but nobody wants to. I can't get the help I need but I have to work to pay child support. I wish more was out there to help people like us. I had a sleep attack while driving and the police thought I was on drugs. Right after that is when I found out I had narcolepsy. Now I can't drive, I lost my job, my husband left me, and my friends and family don't understand. It is me alone and noone to help me. Maybe one day things will change.