December #Nchat Recap

The December #Nchat covered various topics from raising awareness to managing symptoms during the holiday season. Some common themes I noticed:

There are so many ways people work to raise awareness. It makes me wonder how much more we could get done if we worked together on initiatives as a group instead of one person here, one person over there and yet another person over somewhere else. It’s hard when you’re one of approximately 50,000 people in the United States that has been diagnosed. We’re spread out, and it’s sometimes hard to find other people with narcolepsy near you. Not everyone broadcasts it!

People with narcolepsy are sometimes afraid of requesting accommodations from their employer because they feel their employer does not understand. (It is clear that some really do NOT understand and are less willing to work with a PWN.) I need to find and post more resources about this topic. I have talked about requesting workplace accommodations before. You can read my thoughts here.

Living with narcolepsy does not just affect the person diagnosed. It affects our loved ones, too. Without careful attention, relationships can suffer. Cataplexy and sleepiness can also cause intimacy issues – a decrease in libido and/or the inability to enjoy intimate moments due to cataplexy attacks at rather inopportune times. (That was the best way I could word this without being overly risqué!)

We hope you’ll join us for another #Nchat on January 5th at 5pm Eastern. Here’s a rundown of questions asked and some of the responses gathered.

Q1. What have you done as a person with #narcolepsy to raise awareness of the importance of #sleep?

“I started a blog year or two ago, and have since connected with the online world and my local children’s hospital to discuss it.”

“Well besides complaining about narcolepsy on twitter not much. But there are some big things in the works, oh and I help run #Nchat”

“Putting myself out there, raised awareness with friends. Including a friend, that used to tease what was probably C & is now a doc.”

“I founded–and organize–LA’s first Meetup group for people with Narcolepsy.”

“I just held a party with auction items, fact sheets and narcolepsy trivia for my birthday. We raised over $800 to the cause!”

“I’ve also used brochures by @NarcolepsyNtwrk to send to school staff to raise awareness about narcolepsy in children.”

Q2. If you work or go to school, how do you get though each work/school day? Drugs/naps etc?

“I get through each workday with a combo of naps, medication, and healthy, active living.”

“Nap before work, nap after work. Short breaks for naps on bad days”

Q2a. If you don’t work, how hard is it to maintain a sleep schedule?

“Prior to practicing good sleep hygiene, I was sleeping 14-16 hours a day and still tired. Now I’m at 9-10 and am more awake.”

“I wake up at 5:45/6 every day. It can be brutal but it helps me stay on track. Melatonin or sleep pill at night.”

“No job + No sleep schedule + massive depressing = sleeping for 24 hrs and not knowing why.”

Q3. Do you have accommodations in place at school or work to help you get through the day? What are they? Were they are to get?

“I have an understanding that translates to accommodations, either given or offered and accepted. By keeping boss in the loop…”

“I work for my grandparents, so it was easy to arrange for accommodations. They really are good about understanding what I need.”

“I provide Dr notes, explain it’s a neurological disorder, partially managed by short breaks in a quiet room.”

“Does free coffee all day count? I was told I knew I had it when I started so I can’t retro-actively ask for help.”

“I had an IPP in High School, worked wonders for exams + naps. College is less helpful, teachers know, just no accommodation.”

Q4. Has your illness caused any intimacy issues between you and your partner? If you are not in a relationship, do you tell those you’re dating up front or do you wait?

“My hubs is the calming voice I need when I’m going berserk about things not going as planned. He’s my best cheerleader.”

“[I] had a GF straight out dump me for having some sleep attacks while listening to her…. big solo cello performance….”

“Lucky for me, I have had no issues ever. However I’ve never moved in with any of them…which would be a true test!”

Q5. How do you manage your symptoms during the holidays? (One of the moderators had FIVE Thanksgiving dinners!)

“I do less than I first want to. Pace myself. Take time to reboot – lie horizontal, be quiet, in a safe space.”

“Nap before parties or events. Helps keep me calm and collected during events.”

“Honestly? I stay away from eating heavy meals. I snack all day instead. Always have. When I eat huge? I sleep huge. So I avoid it. I also wear uncomfortable clothes/shoes to parties where falling asleep would be a no-no. Like a company party. Pain=no sleep”

Comments

  1. Kathryn says:

    I experienced major Cataplexy 25 years ago and by the grace of God, met with an extremely informed neurologist that diagnosed me with full blown Narcolepsy & Cataplexy. I’ve fallen asleep in every situation thinkable, and experienced thousands of cataplectic attacks. In 1998 I became addicted to Vicodin and didn’t get help until I was a full blown oxy-moron 8 years later. In 2011 I became homeless in -25 below weather,and finally secured my apartment in February 2012, settled in and only went out when I had to. Now when I go out for any reason, the cataplexy manifests itself when I attempt to speak to someone. Yesterday at the laundromat I saw a woman having a hard time folding a blanket, & when I cheerfully asked if she’d like some help, it was all I could do to keep standing. Is there anyone that has any information on the progressiveness of Cataplexy or Narcolepsy? Thanks :) .

    • Heather says:

      Hi, Kathryn! You have been through a lot! I am happy you are in a safe place. I’m sorry to hear you are socially isolated due to cataplexy. My neurologist told me that the sleepiness does not get worse but the cataplexy can progress. I beg to differ on the sleepiness not progressing because I have noticed a progression in that over the last several years. I heard that Dr. Mignot said something about narcolepsy being a progressive disorder at the Narcolepsy Network Conference, but I wasn’t there in person to be able to accurately relay the information. Let me see if I can find some information for you and get back to you on this.

      In the mean time, do you think it’s the anxiety about the possibility of having cataplexy attack that could be a trigger? I wonder if some relaxation techniques and behavioral therapy might help with some of it? (I say this because I’m about at that point as well when it comes to stress.)

      • Zavis says:

        One of my best friends was diesnogad with narcolepsy a few years ago after he got fired (from a temp job) for falling asleep during a meeting. It seems very difficult. I’m not a full-on insomniac, but I’m definitely over on the can’t-nap, can’t-sleep side of the spectrum.

        • admin says:

          Narcolepsy is difficult from time to time, but it isn’t the end of the world. As a person with narcolepsy, I also have periods of insomnia. Those are terrible as well!

    • Myrzagali says:

      my husband has been fnillag asleep during meals, during watching tv, while conversing, and is dizzy. His doctor has been treating him with Citalapram at twice the recommended dosage (per FDA)for his age and I wonder if that has anything to do with his condition. He is deteriorating and our doctor doesn’t seem alarmed. He told me to drive my husband if my husband wants to go somewhere and he tells me he is tired. I was insulted at his lack of grasp of the situation. I am attempting to get help, not stand in the way.Is there some homeopathic treatment available? The doctor is a pill pusher. Thank you sincerely.

      • admin says:

        Has your husband been tested for a sleep disorder? SSRI’s can definitely make a person drowsy and dizzy. If your husband has been diagnosed with narcolepsy, he needs to make sure he’s keeping a good sleep/wake schedule, staying away from heavy meals full of sugar and carbs, and getting some exercise each day.

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