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.

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