5 replies to this topic

[jaided4eva]

Ok I am 26 married and a mother of 2 boys ages 2 and 5. I have been diagnosed with servere narcolepsy and cataplexy since 2000. I have taken every medicine out there for narcolepsy. currently I am taking 30mg of ritilan, 60 mg of adderall and providgil. I have been on these meds for about 5 years with diffrent doses. My doctor wanted me to take xyrem and I did for a while but found that I could never shake the groggy feeling in the morning. I have reached a point now where none of my drugs are working. I need to work but I am having problems getting and keeping a job. My doctor states that there is nothing else that I could try to control my narcolepsy, but at the same time he does not recommend that I apply for disability. I am at an point of desparation now my husband is the only one working and I can tell that he needs help, but at the same time I cain't even get out of bed. Can anybody give me some suggestions on what to do? I know that I am young and feel bad for even considering disability but I need something. My husband says he understands but I know that he really has no clue what I am going through. SOMEONE PLEASE HELP ME!!!

[Lovemyhusband]

Ok I am 26 married and a mother of 2 boys ages 2 and 5. I have been diagnosed with servere narcolepsy and cataplexy since 2000. I have taken every medicine out there for narcolepsy. currently I am taking 30mg of ritilan, 60 mg of adderall and providgil. I have been on these meds for about 5 years with diffrent doses. My doctor wanted me to take xyrem and I did for a while but found that I could never shake the groggy feeling in the morning. I have reached a point now where none of my drugs are working. I need to work but I am having problems getting and keeping a job. My doctor states that there is nothing else that I could try to control my narcolepsy, but at the same time he does not recommend that I apply for disability. I am at an point of desparation now my husband is the only one working and I can tell that he needs help, but at the same time I cain't even get out of bed. Can anybody give me some suggestions on what to do? I know that I am young and feel bad for even considering disability but I need something. My husband says he understands but I know that he really has no clue what I am going through. SOMEONE PLEASE HELP ME!!!

I am so sorry to hear what you are going through.

What is your profession? Is it a field where you can telecommute? Do you have companies in your area that have shared jobs? I guess you need to find out what exactly you need to accomplish with a job. Will you be working just to pay child care? Do you need the health insurance? Will a part time job be good enough?


The thought that's in the back of my mind is about your doctor. If he has no answers for you why does he still feel you can work? Is he just worried about the paperwork involved? has he given up on treatment plans?

I probably just made it all worse but I would hate to think that at the age of 26 you no longer have options. Please let me know I am very curious.

Take care

[greatbig47]

Ok I am 26 married and a mother of 2 boys ages 2 and 5. I have been diagnosed with servere narcolepsy and cataplexy since 2000. I have taken every medicine out there for narcolepsy. currently I am taking 30mg of ritilan, 60 mg of adderall and providgil. I have been on these meds for about 5 years with diffrent doses. My doctor wanted me to take xyrem and I did for a while but found that I could never shake the groggy feeling in the morning. I have reached a point now where none of my drugs are working. I need to work but I am having problems getting and keeping a job. My doctor states that there is nothing else that I could try to control my narcolepsy, but at the same time he does not recommend that I apply for disability. I am at an point of desparation now my husband is the only one working and I can tell that he needs help, but at the same time I cain't even get out of bed. Can anybody give me some suggestions on what to do? I know that I am young and feel bad for even considering disability but I need something. My husband says he understands but I know that he really has no clue what I am going through. SOMEONE PLEASE HELP ME!!!

jaided4eva! Welcome to the community!

You DO know that being a parent of 2 boys of that age could be a full time job itself, right? Even under ideal situations your bound to be driven to exaustion. Noy just a full time job, but one of the toughest (and thankless at times).

If you feel bad for considering disability, don't. The last thing you need is to feel bad...It's hard to be inspired and full of action when we feel bad. Perhaps you are seeking the opposit...what makes you feel good!

What inspires you? What motivates you? Ruthlessly hunt those things down.

Like you, I am fortunate enough to have an amazingly supportive spouse. In my case, my wife is the best person in the world to bounce my thoughts off of. Your husband must have SOME idea what your going through, right? He sees what you're going through, so he must not be completely clueless...Just talking can do wonders.

Your doctor should nevr tell ANYONE that there is nothing a patient can do. As long as there's a heart beating in your chest, there's a way to avoid letting your condition get the best of you. I wouldn't believe him if I were you.

VERY best of luck to you! Keep us informed...please?



-Stu

[3girls1boy]

Ok I am 26 married and a mother of 2 boys ages 2 and 5. I have been diagnosed with servere narcolepsy and cataplexy since 2000. I have taken every medicine out there for narcolepsy. currently I am taking 30mg of ritilan, 60 mg of adderall and providgil. I have been on these meds for about 5 years with diffrent doses. My doctor wanted me to take xyrem and I did for a while but found that I could never shake the groggy feeling in the morning. I have reached a point now where none of my drugs are working. I need to work but I am having problems getting and keeping a job. My doctor states that there is nothing else that I could try to control my narcolepsy, but at the same time he does not recommend that I apply for disability. I am at an point of desparation now my husband is the only one working and I can tell that he needs help, but at the same time I cain't even get out of bed. Can anybody give me some suggestions on what to do? I know that I am young and feel bad for even considering disability but I need something. My husband says he understands but I know that he really has no clue what I am going through. SOMEONE PLEASE HELP ME!!!

I do not have narcolepsy but my husband has a severe case of it also. He was taken off work about 4 years ago, was fired because he couldn't go back, had a terrible accident on the way to work because he feel asleep while driving. He was put on disability at the age of 36, he had no other option. We have a hard time getting by with money and stuff, but atleast I know hes home and safe. Don't feel bad about going on disability, I know its hard because my husband still goes through some depression about it, but he also realizes that his family needs him to be alive! Try and not be so hard on yourself, your babies and husband needs you.

[jaided4eva]

I am so sorry to hear what you are going through.

What is your profession? Is it a field where you can telecommute? Do you have companies in your area that have shared jobs? I guess you need to find out what exactly you need to accomplish with a job. Will you be working just to pay child care? Do you need the health insurance? Will a part time job be good enough?


The thought that's in the back of my mind is about your doctor. If he has no answers for you why does he still feel you can work? Is he just worried about the paperwork involved? has he given up on treatment plans?

I probably just made it all worse but I would hate to think that at the age of 26 you no longer have options. Please let me know I am very curious.

Take care

I have experience in several diffrent fields, I have been an cosmetologist, an receptioinist, an customer service rep, an office assistant, and an It specialist. I have tried to find work from home and the only thing I seem to find is customer service jobs that pay too little or home based business scams. I need to work to help pay the bills in the house so that my family is not living pay check to pay check. My mother is kind enough to watch my kids for me and in return I gave her a car that was paid off so I won't be working to pay for child care, Ive been there and done that before. I have health insurance with my husbands job and it is pretty good but the co-pays on the xyrem is a bit much so I guess some extra coverage wouldn't hurt. I dont think a part time job would do because most of my check would more than likely pay for the gas going and coming to work.

I wonder the same thing about my doctor. Everytime I ask him the only thing he tells me is get back on the xyrem. Even though my cataplexey is controlled with the anti-depressants and I told him that I did not help with the eds. I also in the beginning asked him if the xyrem would affect my birth control and he never gave me an clear answer. I was on Nuvaring and two months later I was pregnant but had an miscarrige. When I told him about it he sugessted that me and my husband wear condoms to prevent it from happing again and to stay on the Xyrem. I feel like my whole quality of life is being stripped away from me. As far as I am concerned his tretment plan is to give me the xyrem weather it is helping me or not. He says there is nothing else.

I am still trying to find some kind of solution and no you did not make things worse answering questions usually helps me to think of diffrent avenues I hand not considered before. So thank you.

[jaided4eva]

jaided4eva! Welcome to the community!

You DO know that being a parent of 2 boys of that age could be a full time job itself, right? Even under ideal situations your bound to be driven to exaustion. Noy just a full time job, but one of the toughest (and thankless at times).

If you feel bad for considering disability, don't. The last thing you need is to feel bad...It's hard to be inspired and full of action when we feel bad. Perhaps you are seeking the opposit...what makes you feel good!

What inspires you? What motivates you? Ruthlessly hunt those things down.

Like you, I am fortunate enough to have an amazingly supportive spouse. In my case, my wife is the best person in the world to bounce my thoughts off of. Your husband must have SOME idea what your going through, right? He sees what you're going through, so he must not be completely clueless...Just talking can do wonders.

Your doctor should nevr tell ANYONE that there is nothing a patient can do. As long as there's a heart beating in your chest, there's a way to avoid letting your condition get the best of you. I wouldn't believe him if I were you.

VERY best of luck to you! Keep us informed...please?



-Stu

I guess you are right Stu my husband may not know exactly how I feel but he can see what I am going through. I guess I should give him his credit. He did marriy me even after he found out that I had narcolepsy, had to pick me up and begg his mother for me to stay at her house after countless cat attacks, and stayed with me for six years. I guess I just get fustrated and in those time I fail to see that he is trying to help. We have had countless discussions about my N lately and still have not fored an concrete solution but talking about it does help. Thank you for the words of encouragement they really helped. I have been seeking my passions latley but cannot seem to see how to turn a profit from them. I love all things music and cmputer related and I love doing hair. I don't know may be something will open up for me in the future.