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Sleep Apnea Over A Year But Newly Diagnosed Narcolepsy


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#1 oldnewby

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Posted 28 March 2010 - 10:13 AM

Hello All,

I was diagnosed with sleep apnea Feb, 09. Looking back I remember the tech asking "Are we going to do a MSLT". It wasn't done at that time. Origanally my quest for treatment started out with a psychologist. I was dx with depression, anxiety, and my favorite bipolar. I am a 40 year old nurse and mother of three, nevertheless, I have always known I had some sort of mental disorder. I willingly acceted the dx and started on a handful of medication. One of the meds added was lamictal and I found myself waking up short of air. I was scheduled for a sleep study and put on CPAP. This is where I have been for the past twelve month; no psych meds but on nuvigil 250mg a day. I was told by the pulmonogist to only take it when I was going to be driving and thats what I did. What brought me back into the sleep lab was my script had ran out, even though I had two refills left. The sleep lab (which is owned by the hospital where I work) is under the direction of a new doctor). Man I really hated to go back and ask for "drugs". Much to my surprise this new doctor reviewed the results of my prior sleep study and was concerned that I may also have narcolepsy. I repeated the sleep study with the MSLT three days ago. I have not been back for my follow up appt but the Respiratory therapist who did the MSLT said although I had a good nights sleep (with the CPAP) I still went into REM on 4 of the 5 naps I took. This is when I found this site. I don't know what if any changes will be made in my treatment but it is such a relief to finally start putting the peices together. Who knew, I'm not crazy and the auditory hullicinations finally have a rational. I have so many questions and concerns. I work in surgery/ recovery room and the beauty of this job is that thing are so hectic that I can keep my mind stimulated. I am concerned about telling my boss. I'm planning to take my hosband to my follow up appointment. I am hoping it will answer a few questions that he has never ask.

#2 merrymom1013

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Posted 28 March 2010 - 03:00 PM

Good luck with your next appointment. Let us know how if goes. It can take awhile to find the right medication/doseage. Things to think about when you talk to the doctor: are you using C-pap for the apnea & is it helpful? When you use the nuvigil, does it help? Are any side effects a problem? If it is helpful & tolerable, it may make sense to try taking it it every day & not just for driving. (just a guess).
As for telling your boss... if you are able to do your job well, your performance is fine & you don't require any accommodations, I don't think you have to share the information. (Anyone else want to jump in here?) If you need any sort of accommodations, or it takes a while to find the right treatment, you may have to ask for leave or accommodations.
Let your husband know this is a good resource for him as well. I don't have narcolepsy- my daughter does. NN has been a great resource for me to help me learn about this condition & how to support her. Parents & spouses are welcome & appreciated here.

#3 oldnewby

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Posted 28 March 2010 - 08:17 PM

Thanks for the reply. I have always managed to do my job and do it well. I struggle more than anyone knows. I have told myself often the general puplic can not feel this way. I am very determined and it sounds like I may be more fortunate than other . I do however recall when I was hired some five years ago that any prescription meditations were to be disclosed. I never notified anyone about the nuvigil. I don't think I want to tell my co-workers or boss about the diagnosis. Maybe when I can wrap my mind around it and make some sense of it I wont feel so embarrased. For anyone who says the general public doesn't understand, I will be the first to agree. I have been a registered nurse for several years. If someone would have asked me ever one week ago "What is narcolepsy" I would have gave a very incomplete answer.

#4 Tracer

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Posted 28 March 2010 - 10:38 PM

Hi Oldnewby and welcome, I too work in the medical field and I think you are right about disclosing information on prescriptions taken. Of course you know why, and it's a reasonable request. Where I work we have an occ. hlth. office for such things. You may even have to have some note from the doctor saying this will not impair your ability to do your job. Now with that said...I haven't reported my use of Nuvigil. I have disclosed to some coworkers that I have sleep apnea, but that's all. Just be careful with what you decide. You know how things like this can cause problems at work.

I think when people hear Narcolepsy they think the worse case senerio. From reading the posts here there so many different symptoms for the same condition. I'm fortunate to not have the vivid dreams or cataplexy. About 10 years ago I had my first sleep study and the doctors said my sleep problems were from depression. That may have had some truth to it but after several tries with anti depressants it never got better. So last year I had another sleep study done and found I had sleep apnea and I now use a CPAP. I feel that the CPAP does help a little but not nearly as much as I hoped it would. Now I am taking the Nuvigil and I feel a little better....well.....I am more awake but still tired. At this point I will take feeling a little better gladly :) I have had sleep problems since I was a young child. Sleep issues were not the focus for the doctors back then, it was more on what may causing the sleep problems(depression, diet, exercise, etc.) and not a sleep disorder itself. Make sense? Now there is more information out there about sleep disorders and more doctors seriously looking at them. I think they have made tremedous progress and maybe in our lifetime we will see something that will help N other than just dealing with it on medications.

What helps me at work is staying very busy. Idle time is bad news for me. Of course I am totally exhausted when I get home but I made it through the night. There's a lot of information on this site and you will see so many share the same issues. I know you have a lot of questions, feeling confused, maybe disbelief, feeling of relief knowing what you are dealing with, concern about the future, treatments available, and how they are working out for people. It will take time to sort it all out.
Take care keep us posted.
Tracer

#5 oldnewby

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Posted 29 March 2010 - 05:36 AM

Hello Tracer,

I have also had sleep problems since I was a child. At this stage of the diagnosis I find myself wandering why it was never addressed in my youth. Not really mature of me wanting to shift the blame as for me not seeking help as a young adult the only answer I have is also lame. Last year when I started the quest (started with a shrink) my husband of many years was upset and said "there is a stigma that come alone with seeing a psychologist". I never imagined the bulk of my "mental issues" could be trace back to a sleeping disorder. I do have the vivid dreams and not sure what is was called (awake but unable to move) which often times leave me paralized not only physically but mentally. I am so glad I this site. I already feel better knowing there is someone out there who truely understands. Would be glad to here any advice. thank you for your personal insight on working in health care and taking the nuvigil.