Where do you start?

Index Support Center Forums Treating Narcolepsy Where do you start?

This topic contains 6 replies, has 4 voices, and was last updated by Natdoc 2 months, 3 weeks ago. This post has been viewed 200 times

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  • #8850
    Participant @dreamworld

    Hi all,

    Brand new to the group. I was diagnosed with sleep apnea and narcolepsy in December and have begun now to explore my treatment options. It is overwhelming: CPAP, mouth pieces, medications (all the many different types). My doctor is giving some guidance, but I feel overall the responsibility has been on me to decide what to do.

    The thing that led me to see a sleep doctor in the first place was all-night vivid dreaming that kept me tired and sometimes disoriented in the mornings. I often have trouble getting out of bed, fall asleep multiple times in the mornings, etc. I’ve never experienced falling asleep at inappropriate times and often attributed my sleepiness to a hectic and stressful job.

    So my question is, where do I begin? My narcolepsy diagnosis was completely unexpected and I am having a hard time accepting that I actually have a condition. Do many of you have similar experience with this diagnosis (excessive sleepiness, but not necessarily falling asleep at inappropriate times)? Where did you begin in assessing treatment options? Medications like Xyrem seem extreme, since I’m still learning to accept my diagnosis.

    Hope to hear your experience when you were first diagnosed and tips for finding treatments that worked for you. Were any of you surprised at the diagnosis/have similar symptoms as me?


    Sleepy RBD
    Participant @sleepy-rbd

    Welcome to the forums…I always feel a bit odd in saying that because of the reason that brings one here. With that being said, I hope that you will find support and information that is helpful to you as you begin to navigate through acceptance and your options while moving forward. When I was looking for answers, I found the experiences of others to be extremely helpful. I searched through research as well as personal accounts. For me, the forums have provided support and knowledge through the experiences of others who have faced similar struggles.
    I’m not sure if you have cataplexy, but that eventually became the undeniable symptom for me. I had “sleep issues” from childhood and just accepted a lot of things as “normal” in that I don’t remember anything being any different in terms of my sleep or sleepiness. Now that “I know what I know” or in light of that, so many behaviors and choices through the years make sense.
    A few things that I have learned along the way…strictly my opinions.
    (Inserting my disclaimer…I am not a medical professional.)
    Although our symptoms may be similar, the severity and frequency of those can vary greatly between individuals. This is true even within my own life in dealing with this disease on different days or during different periods of life.
    What works for one person may not work for another. It seems that each person has to work towards a “balance” of what helps between healthy lifestyle choices and medications. This combination may change through the years.
    Since there is currently no cure, we seem to always be working towards a level of functionality by treating or coping with our symptoms. Some days are better than others. 🙂
    Unfortunately, I think that the way in which narcolepsy has, at times, been portrayed has led to a lot of misconceptions. I wouldn’t fall asleep in random places or at “inappropriate times” as you mentioned either. Perhaps, it was that I wouldn’t let myself fall asleep and I was one of the ones who was fortunate enough to be able to fight that sleepiness through remaining active along with the consumption of too much caffeine. I developed coping behaviors without even realizing it. For years, when I came home from work I would tell my husband how I felt so tired/sleepy. My husband would ask, “Why don’t you just sit down for awhile?”
    My standard response was…”If I sit down, it’s all over.” I knew if I slowed down or stopped, that was it for me. When I did crash, I could fall asleep and be immediately dreaming. My husband could be talking to me one moment and the next I was out.
    I’m not sure that any of the above will be helpful to you, but I do wish you the best as you are searching for answers. You have come to a good site that will hopefully be as helpful to you as it has been to me. Please feel free to ask more questions and keep us updated. Each person’s voice is important on this journey.


    Participant @natdoc

    Hi and welcome to the forums. As I was reading through your post I notice that you said you were diagnosed with sleep apnea and narcolepsy in December. I am wondering how severe was the sleep apnea? was it severe enough to start CPAP? How was your diagnosis made?
    Have you already been using CPAP for 30 – 60 days?
    Do you recall the results of your overnight test and MSLT?
    Im just a little curious, generally it is very difficult to diagnose Narcolepsy in the presence of sleep apnea, and generally speaking at least in my experience, sleep apnea is treated for 30 – 45 days prior to completing an MSLT.
    I hope you find the help you seek on these forums, there are some extremely experienced and intelligent folks here.
    All my best

    Moderator @ferret

    Hi there, sorry you’re here but welcome anyway. I was waiting for natdoc to chip in because there is someone else you just went through something similar to this but their mslt was cancelled.

    Your priority is the sleep apnea and THEN the next step will fall into place. Good sleep hygiene and generally taking better care of yourself will greatly help as well. Lots of info under Non Rx Strategies.
    Keeping a very simple diary of Sleep/Diet/Feeling will also help you to notice patterns for days when you feel good… or not.
    Best of luck in your journey and please let us know how you’re doing. We all learn from each other.

    Participant @dreamworld

    Thanks everyone for their thoughts and responses.

    @natdoc The sleep apnea is only mild, which is why I believe I continued to the MSLT. I fell asleep in all 5 naps, and within 3 minutes for 3 out of 5. This is where my narcolepsy diagnosis came from, is how it was explained to me. My doctor says its fine to start with CPAP for a month and see how much that helps, but that daytime sleepiness will likely still exist if I don’t try something additional on top of my CPAP. I will get started with CPAP hopefully next week.

    Participant @dreamworld

    @sleepy-rbd I really appreciate hearing your experience. It all lines up with my symptoms as well. I’m trying to stay grateful that I have some kind of answer now as to why I struggle in the way I do.


    Participant @natdoc

    Good news that is mild sleep apnea, do you remember the AHI?
    When saying you fell asleep in all 5 naps and in less than 3 minutes for 3 of them, do you mean you hit REM sleep in 3 of the 5 naps?
    I know it may seem inconsequential, however, it does make a difference, not so much in treatment but certainly in diagnosis.
    At least you have a starting point, goos for you please keep in touch and let us know of your progress.All my best

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