Sleep Disorders Community

Dear ANON,

I have Narcolepsy also. Horrible Illness !! I am 49. I Wanted to let you know fact is You QUALIFY for Medicare Monthly pay and also you can receive medicare A & B medical benefits and C for scripts. (upon providing The Social Security Office all your Medical records/ proof & testing)
There is Very Limited help on our illness as it is rare but Extremely disabilitaing as each year comes upon you and it will reach a plateau near age 50-55.

Highly recommend also a vast amount of loving people in your circle of friends & family.

Please email me-
* I can offer you a vast amount of information. I am NOT affilliated with any associations-However, I am extremely knowledegable and would like to pass on any info to The Society and fellow narcoleptics- as I can not seem to find any indepth support. As a narcoleptic, please be aware we must help eachother through it.

My Warmest Regards,

Sheri id = Okaynu
dazydo@yahoo.com

Dear Anon_9973,

I addition to the support Okaynu offered, I'd suggest that if you want to work, how about working from home? Many legitimate work from home (virtual vocations, telecommuting) don't care where you're based from, as long as you meet their minimum technical requirements (computer, connection, etc.).

I know many people who have successfully worked from home, a few of them for over a decade.

Best wishes,

Byroney

I also have narcolepsy. I used to struggle with sleepiness and could barely get through the day at work. I was drinking 12 diet cokes a day, taking No Doz, whatever I could do and it just kept getting worse. Once I was diagnosed, I was placed on Provigil - it has worked amazingly. I have been taking it since 2003 and it truly helps me to stay awake. There are many medications available for people with Narcolepsy.

Another thing to realize is that narcolepsy falls under the ADA (Americans with Disabilities Act). Once you are hired somewhere, you should openly speak with your employer about your condition and bring documentation from your physician. Most employers will work with you to try to accommodate your condition. Although you will still have to meet the basic requirements of the job (and still have to put in the required hours, do the required tasks, etc.), they may allow some flexibility in break times, or arrival times, etc.

On my "bad days" when I am very sleepy, I just notify my supervisor and I am allowed to go to a quiet room for a 10-15 minute nap. I may also nap during part of my lunch hour. It is amazing how a little nap will give you an extra boost to get through the day. I still have to put in the full hours for my required shift, but the flexibility in the break times, etc really helps. Instead of "scheduled" breaks, I am allowed to take my times when needed. This helps to accommodate a "sleep attack".

Also have a little ear alarm (called a "doze alert") that I wear when working at the computer all day (which can make one very sleepy). If my head tilts forward, an alarm goes off to wake me up. This can be used while driving as well.

So there is hope and it is possible to work with narcolepsy. It is definitely a struggle at times, but if you are honest with your employer and do your part, they typically will try to help you.

Thanks so much for the encouragement. My daughter is finishing college this year and is worried about going out into the real world to work a normal 8 to 5 job. The ear alarm is a great idea.

Worried Mother

where do you find an ear alarm? Can it be worn with a hearing aid?

Dear Anon_9973,

You are very correct that narcolepsy is a very disabling sleep disorder. Not only work but home life can become very disrupted because of the intense need for sleep. Indeed finding work to do from home may be a good idea. In fact medical transcription is a very good idea. And disability is an option as well.

However, I would like to raise another issue. My objective whenever I see someone with narcolepsy is to get them to be fully functional - able to go to school or work or do whatever else they want. This does not mean that if they lie down they won't fall asleep - narcolepsy patients will always do that. Many, in fact most, patients will be able to be treated with medications and schedule modifications to achieve this goal. In my practice I take care of patients with narcolepsy who are surgeons, physicians, lawyers, college students, media professionals, and just about any job you can imagine (except bus drivers and pilots). I am certainly not suggesting that everyone can do this, but most people can. Some will need to be on disability. Most importantly if mothers and fathers of narcolepsy patients are reading this, they should know that their kids, though may have a potentially disabling illness, may still be able to become whatever they chose with appropriate treatment.

I am sorry I did not answer your question directly, but hopefully this may be of some help.

Best,

Aatif Husain

Dr. Husain,

I'm interested in finding out more about potential treatments. My brother has narcolepsy and has been on disability for a number of years, but his disability is currently being denied and he doesn't know what to do. He has been prescribed some strong stimulants but these affect his ability to sleep at night. He also has been prescribed some strong pain relieivers (methadone among them) for chronic back and foot pain. These may tend to increase his tendency to fall asleep during the day. He lives near Kansas City. Is there someone he can contact? (you can PM me off line).

Thanks,
Mike

Mike,
I live in the Kansas City area myself and have had a terrible time finding a doctor to treat my Narclopesy. I used to see a Neurologist who left the office and moved to another state. My regular MD treated my narcolepsy for the past 5 years and in December she closed her practice and left no notice for her patients or where she was going. I have been having a terrible finding a Neurologist to see me without a doctors referral and being how my doctor also left my records are there at her office Im assuming. I hope you have had some luck and if so would love to hear where to go. It seems that no one in KC has heard of Narcolepsy and its so frustrating!!

Wow, someone I can relate to!! I have Narcolepsy I was diagnosed in 2005 and its been a nightmare to deal with! Its hard to talk about it with anyone I know because they've never heard of it. I don't know of any support groups in my area and struggle with it so bad! I'm a full time student and its almost impossible some days to stay awake in class!!

I was diagnosed with narcolepsy last year, and had to withdrawal from school for a semester because of the side effects of the stimulants and because I was so far behind in my work. I am back in school, and on Nuvigil, but I still struggle. I am lucky enough to be near teaching hospitals, so I have a neurologist who specializes in sleep disorders. Also, I am in pharmacy school which is extremely difficult, but it helps in understanding the medications. I have gone through most of the medication combinations that I am willing to try right now (I won't do Xyrem in a dorm) and I am still not feeling like I can get anything done. But I am trying, and we keep trying different meds and schedules to see what works. My school is working with me as best they can, giving me extra time on tests and allowing me to schedule later classes and take exams later in the day. Working in a pharmacy on my feet all day helps keep me from dozing off, but getting up and getting there is a huge issue. I can't go on any kind of disability that I know of, even part time, because to get my degree I have to work enough internship hours. Just keep going, do anything you can to make it easier, the school was more than helpful after I got my medical paperwork to them, since narcolepsy is in the ADA, they have to do what they can to help out!

from OKAYNU EXCHANGE= NARCOLEPSY

Im glad you responed to My exchange originated by me Titled as "Narcolepsy"..by opening this exchange my hope is to open the doors for Narcoleptics to find eachother and help relating to the illness and finding new friends for support. Yes- it is extremely difficult to find someone to SUPPORT/ or to relate our illness because it's relatively a "semi-new" medcal finding and is labled as a rare disorder however, do not be alarmed because, it has been around for generations. Keep checking back here because by opening the exchange Tiltled as "Narcolesy" I have a wide range of hope here on WebMD= one the most famous websites for Medical Proffessionals/Researchers and people helping eachother as well as Informing the public on Correct information vs. assumed information.

Okaynu, I have been just in the starting realm of the Doctor taking me out of work.... I have been diagnosed with Sleep Apnea in 2001.... Now I have said that I have still had a lot sleepiness during the day.... So as I said the doctor took me out of work..... Why? I drive tractor trailer for a living..... What that means is I deal with the general public on the road.... I am very upset by this but, it is for not only my good but for the general public as well.... I have not been for testing as of yet.... But even if I do my life as I know it has ended.... No driving truck. No fire fighting, both things I love very dearly..... I have read what all the people have said in previous letters and have gotten some useful information.... If someone could tell me how hard it is going to be to get onto SSI Disability Benefits it would be great...... I want to thank you for your time and anyone else's time that they or yourself put into replying to me to give some sort of hope in this new lifestyle I will most likely have to lead... Happy Mother's Day,
jmw6713

I want to thank you for your help .... But yes I am a Commercial Truck Driver and I have been taken out of work and need all the help I can to surpass this issue (Disease).... Any help that you can give me and others would be greatly appreciated..... Thanks, jmw6713