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  • #8677

    Ellpha
    Participant @ellpha

    Sorry to be a huge bummer right now, but I’m feeling so hopeless and I think you guys might be the only ones who understand.

    I was diagnosed with N about 8 years ago. My MSLTs were “inconclusive” but I had some mild cataplexy, so my doctor was confident it was N. Well, since the results were inconclusive, insurance refuses to cover any medication related to N. For a few years I settled for paying for Adderall out of pocket, but had to stop when I got pregnant in 2015. After having my daughter, I decided to try managing N naturally, through really clean keto and regular exercise and as many naps as possible. It worked about as well as the Adderall (so bearable, but not great) for about 2.5 years, but since this summer I’ve just been feeling worse and worse and rarely have time for naps. I went back to my doctor to ask for Adderall again, but he wants me to get another MSLT (scheduled for later this month) so that we can go to battle with my insurance once again and try to get something better. It just sucks because MSLT’s have always been so hard on me – I feel the effect for what seems like weeks after, and it likely won’t give me any ammunition and I just don’t have any energy left to fight them. I’m so tired.

    I got a new job this summer and the stress is unbearable. Yes, pretty sure that’s what lead to the N getting so much worse… so I’ve contacted my previous company about returning, and so far it seems like that will work out. But it’ll take a few weeks/months and doesn’t fix the problem entirely. I left there because my commute was about to go from 5 minutes to 60 minutes. I figured, if I have to increase my commute anyway, why not get a better job? Well the new boss wants me on call 24/7 and makes me take PTO if I don’t work 50 hours a week. That’s right, even if I get all 40 in, unless I’m hitting 50 (plus 10 hours a week commute), I need to take PTO. He keeps reminding me that he gave me fair warning about the 50 hours/week during my interview. True, but he also led me to believe I could work from home (saving the 10 hours commute – ta da, there’s my 50 hours/week, or so I thought). I’ve tried finding a job with a short commute again, but my line of work is 99% in cities – not something easy to find close to home in the suburbs. So anyway, going back to my previous job will be better, but still stressful and I’m not sure where else in my life I can make cuts to save energy. I already do grocery pick-up or even delivery, have house cleaners, etc. And I have no free time to pull from – it feels like my entire life is work and sleep.

    On top of all that, my husband has a very demanding career so he is unable to carry all of my slack (he does try but because of his hours, almost all of the drop offs/pick ups are on me as well as 90% of the meal planning, grocery shopping, and food prep, plus just the burden of mentally keeping everything running). Plus my daughter has the never-ending energy of an almost 3 year old, and I just can’t keep up with everything. So has anyone ever managed to successfully balance a full time career, a family, and N without medicating? Am I doomed to feel like this forever? I feel so beaten down and overwhelmed.

    #8697

    Natdoc
    Participant @natdoc

    Ellpha
    Welcome to this forum. I would suggest reading the posts from ferret I think you may find some great information here.
    Also dont worry so much about the MSLT, there have been recent changes in insurance guidelines governing the use of medications to treat narcolepsy and also in the guidelines for the diagnosis of narcolepsy.
    Remember that these tests are simply guidelines and do NOT replace the diagnosis or opinion of your Physician if they are willing to go to bat for you.
    I wish you all the best

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