20 Tips for People Diagnosed with Narcolepsy

I was diagnosed with narcolepsy last year and have since then been learning how to manage the disorder. Besides, Google searches, information from my doctor, and online groups, I learned by experience mostly. While what works for each person may vary, narcolepsy is hard to control and deal with for everyone. I thought this list would be good for anyone that has narcolepsy or loves someone that has it to consider, especially if you are just finding out you have it. These are the things that I have learned:

  1. No caffeine after 6 pm or preferably no caffeine EVER. The temporary energy boost is just not worth the plummet afterwards, or affecting your ability to sleep well at night.
  2. No alcoholic beverages at night except on special occasions. It just seems to aggravate symptoms the next day, and it’s not okay to ever drink with certain medicines for N.
  3. Keep a strict bedtime and morning alarm. A routine time for going to sleep and for waking can signal your brain and body go through more normal sleep stages. Of course also getting eight hours is also a must, and maybe everyone’s different on this but I have found I do better if I go to bed by 10:30 pm and rise by 7 or 8 am. So about nine hours is the magic number for me. Any more or less and I’m ruined for the day.
  4. Exercise at least twice a week and try to do stretches everyday. Stretches wake up your body which can also signal your brain it should be awake. Stretches also help with cataplexy I’ve found.
  5. Don’t fight a sleep attack and try to continue functioning. It only gets worse if you don’t give in. Better to take a nap and get it over with. I have gotten hurt, broken things, made situations worse, had huge mood swings, and even had anxiety attacks because I won’t stop fighting it and just lay the heck down somewhere.
  6. On that note, do not ever get in your car if you even think you feel a sleep attack coming on, or if you are feeling disoriented or sluggish. If you get caught out somewhere when it hits you, take a nap in your car before driving if possible. Make sure you are in a safe place, and lock your doors though.
  7. In general, slow down and take care when driving, going up or down stairs or ladders or anything where a slip or mistake could result in an accident.
  8. Write everything down, keep a good planner, I use a regular spiral bound weekly planner, and also have found Microsoft One Note especially helpful with keeping up with large amounts of ideas, plans or projects. Keep a good supply of small notebooks. I also like to keep a sharpie on top of the fridge and a magnetized to do list on the fridge, so I can write on it whenever something occurs to me. If I’m in the middle of something it only takes a second to walk to the fridge and scribble and get back on task, so I don’t get distracted and forget what I was doing before.
  9. Don’t worry about trying to appear normal or about being impolite if you are not feeling well and are not able to participate in a conversation. Just say, I’m sorry I’m not feeling well and keep your silence.
  10. For many narcolepsy medications it is important to take them at the same time each day in order for them to work well. I found this to be especially true for Nuvigil and somewhat for Xyrem.
  11. Don’t get out of bed after taking a dose of Xyrem! You could end up on the floor!! (Yes, that very nearly happened to me.)
  12. Avoid stressful situations as much as possible. Stress aggravates narcolepsy for most people. This means if trying to function while dealing with symptoms is causing stress, you need to let whatever you are worrying about go or stop pushing yourself to get something done. Just let it go and give yourself a break. I’ve been in a crazy cycle of symptoms getting in the way of responsibilities and relationships and causing stress, then the stress causing my symptoms to get worse!
  13. If you have anxiety attacks, pay attention to how you are feeling, and you may discover that you are having sleep attacks, but ignoring it well enough that you keep going. You pay for it emotionally until you finally break from the mental effort of trying to focus and function. If you start feeling unreasonably upset or upset over things that don’t usually upset you, you may just need to take a nap.
  14. Don’t get discouraged if you are doing everything you can and still have bad days. It happens. For me dealing with narcolepsy is like walking a tight rope. One little slip off your routine: a missed dose of medicine, daylight savings, stress, more activity than you can handle, too much caffeine, staying up too late, etc. can throw you off completely for a few days.
  15. Eat healthy and take vitamins. Narcolepsy tends to deprive your body of the restful and restorative sleep stages at night. A healthy lifestyle can help combat the negative effects to your mind and body. Some of my favorite vitamins are biotin for hair, skin and energy, B12 for energy, niacin for heart health (really good to take if you take Ritalin since it can be hard on the heart), vitamin C for immunity, and St. Johns Wort helps keep mood swings away.
  16. To add to that, always eat three good meals a day, and keep snacks handy. Never go hungry, or your energy level will plummet.
  17. Don’t be ashamed to admit you are unable to do something. Don’t be afraid to ask for help, and don’t give up on people you care about that don’t seem to understand. Just because you could push through something and suffer through it doesn’t mean you should. Most people don’t understand even if most things are just as possible for you to do like everyone else, some things can be much harder for you than it is for them. Things like remembering important dates and keeping up with bills and finances have been a problem for me. Also, working certain jobs is questionable if you are able to keep a job at all. It is up to you if you really think you have the strength to subject yourself to the extra effort that will be needed, but realize that even if you have the mental strength and determination, doesn’t mean your body will go along with it or it’s healthy for you to do it. On the other hand, if you think it won’t aggravate your narcolepsy and you’ve got it in you, don’t be afraid to try!
  18. Erase all negative perceptions of you being lazy, ditzy, clumsy, careless, inconsiderate or rude that you developed prior to diagnoses. Those are only wrong assumptions. The facts are extreme, excruciating sleepiness, low awareness and alertness, impaired cognitive function and memory, loss of muscle strength and mobility, anxiety. I still struggle with this all of the time. When I find I’m doing or saying something awkward, I get the urge to make fun of myself to make light of it and say things like “Duh!” or “I’m just clumsy.”
  19. Rule 18 does not mean you should not try to control symptoms, which is best for you and everyone around you! Try to identify what is a symptom or caused by symptoms versus what might be just your personality or a regular human flaw. It helps because if something you want to change about yourself is a symptom then it might easily be countered with a solution. For example, before I got diagnosed I would have moments of extreme anxiety without knowing the way I felt was very abnormal or knowing why I felt that way and freaked out on those close to me. Now I know that when I feel that way it’s because I need to go lie down. If I start feeling agitated, and I don’t know why, I will stop trying to do whatever task I’m on, tell whoever is around that I don’t feel well, shut myself in a quiet room, and take a nap- a much better solution to the problem than having a panic attack and making my family upset. My point is don’t feel bad about how symptoms make you look, but don’t give up trying to manage your condition so that things can be more normal for you.
  20. Life is good. Happiness is a choice, no matter your circumstances. Be happy. Find what uplifts you and cling to it! For me, it is God. When I am weak and feel helpless and lost, He is my strength, my hope and my guide, and where I find my purpose.

-CRC Owens (2013)

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28 thoughts on “20 Tips for People Diagnosed with Narcolepsy

  1. These are great tips, thank you! #5 has proven to be so true for me–fighting off a sleep attack is practically impossible (I used to pinch my arm over and over in class to keep myself awake, and I would always fall asleep anyway). I always put a lot of pressure on myself to perform in grad school and socially as if I didn’t have narcolepsy at all, as if it is something to be ashamed of–thanks for the encouragement and words of wisdom.

    1. Society has a funny way of making people ashamed of disorders and medical conditions- especially when it’s not understood! It has been heartbreaking for me to deal with and see how many other people with N deal with it and most even worse than I have. I have had at least one family member that put in all her effort to educate herself and really understand. Many people don’t even have that. I pray for people with N and other misunderstood diseases for a change! That they do not have to deal with being sick as well as misunderstood.

  2. Just got someone who can understand the condition know how to tackle with it right now iam in india delhi with medications as indral 10mg+amlopress 10mg in morning
    Tryptomer 10 mg before sleep

  3. This is such a helpful article. I’ve only just received my diagnosis, after over ten years of investigations and being told I will grow out of it/am lazy/must be on drugs. It messed with my A-levels, my degree, my M.A. & my marriage. It doesn’t help that sudden stress is also my cataplexy trigger!
    But now I’m taking Modafinil & already seeing an improvement. I’m starting to develop a working routine and I’m overjoyed to be getting my life back. I still get very tired, but often it’s now a workable tiredness, not the undefeatable sleep attacks I’m used to.
    I definitely agree with everything you say about just shutting down situations that aggravate symptoms & taking a nap when required, but it’s so good to have someone else say it. Thank you so much for a positive and useful insight, and I wish you all the very best for the future, both with narcolepsy and life in general!

  4. This is such a helpful article. I’ve only just received my diagnosis, after over ten years of investigations and being told I will grow out of it/am lazy/must be on drugs. It messed with my A-levels, my degree, my M.A. & my marriage. It doesn’t help that sudden stress is also my cataplexy trigger!
    But now I’m taking Modafinil & already seeing an improvement. I’m starting to develop a working routine and I’m overjoyed to be getting my life back. I still get very tired, but often now it’s a workable tiredness, not the undefeatable sleep attacks I’m used to.
    I definitely agree with everything you say about just shutting down situations that aggravate symptoms & taking a nap when required, but it’s so good to have someone else say it. Thank you so much for a positive and useful insight, and I wish you all the very best for the future, both with narcolepsy, and life in general!

  5. Thank you for spot on advice, some of the most accurate and helpful advice both emotional and energy-wise. Very supporting and inspiring tips, especially with such a misunderstood thing as narcolepsy.

  6. Thank you and a million times more! I am not going mad after all! I am still learning how to live with narcolepsy, and it has not been very easy. My faith (Christian) and my husband have been such a great help through the hard times.

  7. I know this is a long shot (2013 date) but I just came across it. I’ve had narcolepsy for 20yrs (I was diagnosed amazingly at 16) I enjoyed your tips very much and could always use a narcoleptic person to chat with by email or Facebook. Enjoyed your article very much πŸ™‚
    Jade

  8. Many of these apply, and its good to hear them said by someone else. Afraid it doesn’t really matter in my world though. Asleep = you are bored with your job, and will do it poorly, and will get fired, again. Asleep = you are disinterested in me (wife). Asleep = is avoidance of your responsibilities. Asleep = you are an unaware parent who doesn’t care. So, where to go with all that?

    I need to talk to more people and hear more things like this. And my wife needs to hear it from a credible source (because I’m just trying to get away with being lazy or something). She will not spend any energy learning about this because she is “already busy being 1.5 parents in our house”.

    I’ll keep tuned in here for more, but where else can I go for more insights and supports?

    1. Search narcolepsy support groups on Facebook! This one I was very involved in for a while https://www.facebook.com/groups/livingwithnarcolepsy/ It is a great place to find support!

      I know what you mean about people’s misconceptions. For some reason people find it very hard to put themselves in a person with N’s shoes. I guess it really does not show the way we really feel, and is frustrating to others close to you. Try to have understanding that it is hard for them to know how to deal with and maybe that will help them put forth more effort to understand you as well. Ask your wife and others close to you to join the same support groups online because they need support and information to deal with this too!

      I am not much on the groups anymore because of my religious views (I believe God healed me of my narcolepsy- many people in the group do not, and were very upset by my claim. I have posted on my blog about it if you care to read it. I just hope you or anyone else reading it knows that I shared the story with the best intentions and in no way consider myself “special” or “superior” because apparently that is what the group that for so long I had been a member of thought. Since Narcolepsy is noncurable, to them, I never had it. I assure you I experienced everything the same as them and hope the best for anyone out there dealing with what I went through and I hope that somehow that they will be healed to. If a person believes, they may be healed. It may not be in the same way that I became healed or that they are not really believing in their heart. I can’t claim to know the mysterious ways things like this happen.

      Sorry if this is more information than you wanted, but every time this article from 2013 is noticed, I remember there is more to my story than this one article πŸ™‚

      PS. Wide Awake and Dreaming is a wonderful memoir of a young woman that got diagnosed while in law school.

      1. Not more information than I wanted, not at all. I believe, I’m Christian. We moved to help in a church plant, and “to shake me out of the fog I’ve been in all my life”. The move was 6 years prior to diagnosis. I know people who have been healed of things. Things that just don’t heal, like N. That is something I could believe for, for myself. You’re waiting for the “But…” but I don’t have one for this sentence. I’m going to leave the end of that sentence alone. My question lies more in you, and I don’t want to be all Doubting Thomas or anything, … it’s really absent from your life now? You don’t take stock in your sleep/wake level thinking about what the next several hours hold and decide to opt out our Red Bull up for it anymore? That would be awesome.

  9. Thanks for the tips! I was diagnosed about a year ago and am in my last year of college- very much struggling through it. I like the last tip of staying happy as that is the most important AND the hardest one for me! Narcolepsy does bring a refreshing perspective to my life but it also does not ever seem to stop presenting challenges, emotionally, mentally, and physically. Thanks for all the comments everyone who commented on this also! love to you all working with this very wild and strange condition

  10. This is such a helpful list of tips. I am in the process of getting diagnosed and treated for narcolepsy. The extreme tiredness in the middle of my work day (among the other typical symptoms of hallucinations, vivid dreams, and sleep paralysis) resulted with me pinching myself to try stay awake and then causing me to have a small panic attack (probably a sleep attack). I just need to give in, take a 15 minute nap, and go on with my day. I can’t wait to find more balance with managing my symptoms. Thanks for sharing your story!

  11. Simply, bless you. It is such a God thing that I happened upon this article and I feel you should know that you’re reaching people. Rule 20 is a perfect example of “last but not least”. I really needed to read it, thank you, and praise God for his constant support.

  12. What is more likely is Xyrem gave you some consolidated sleep so you think your N is gone. N is known to wax and wane. No one has ever gone into remission. Yeah, that’s right, your GOD has never healed anyone of N. It will come back. This is very common after Xyrem, but your N will return, I assure you.

  13. I have been diagnosed for awhile now, but I’m starting to notice my memory is getting extremely poor. Im wondering if anyone else is feeling this way.

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