September #Nchat Recap: Happy Anniversary, #Nchat!

September 7th was the one year anniversary of #Nchat, the monthly Twitter narcolepsy chat I and two other people with narcolepsy host.  When I suggested we try a Twitter chat, I wasn’t sure how it would be received.  It’s really cool to see that people are enjoying the chats and are benefitting from them!  Thank you, Mike and Cat, for helping organize and  moderate the chats each month!  And thank you, Julie Flygare, for signing copies of your book for the giveaway!  Here’s a recap of the September chat:

Q1. Do you have any recurring dreams or dreams with the same theme? #Nchat

A1. Lots of dreams (not HH type) about my dad, we are out driving but he won’t get out of the car with me. Wake up sobbing. #nchat

A1. Yes, always loved ones dying and I can’t save them. Very disturbing. HH are always intruder based #nchat

A1. Once had HH where I thought my hubby’s CPAP stopped working and he was lying there dead. Couldn’t move to help him. #nchat

A1: Yes…and some can be really annoying, while others are really disturbing. #nchat

A1: Since moving into new apt 1 month ago, my HH have mostly been minor, my bf is entering bedroom while I nap, but not really… #nchat

A1. HH is always my daughters being dead. The worst was seeing my youngest at the end of the bed in a pool of blood. Cried for hours #nchat

A1. Yes all the time, Im always falling or be attacked by someone. good times #nchat

A1. I frequently dream about being in school, missing tests, getting lost, not being able to get in my locker. HH are mostly spiders. #nchat

A1. Yep. Chasing dreams. Always being chased and trying to hide in vacant buildings. Not a fan. Not a fan at all. #nchat

A1. Our son seems to go through phases of recurring elements lasting months… Sharks, dragons, usually something scary. #nchat

A1. Recurring HH of someone in the house or a baby crying. #nchat

 

Q2. How do you handle negative hypnopompic/hynagogic hallucinations?  Does a scary HH affect you emotionally? #Nchat

A2. I listen out for the dog, if there’s no movement from him I know me and kids are OK #nchat

A2. The day after a night of bad HH is always rough. Extra groggy and my mood is somber. Definitely causes stress on the body. #nchat

A2. I changed the sound of my doorbell a couple times…. which was cheap to changing locks to getting a home security system. #nchat

A2. Since I often have difficulty going back to sleep after HH, I keep my phone/ipod by my bed to listen to relaxing music. #nchat

A2. I think emotional effects of HH is underrated. I feel adrenaline pumping and I wonder what this stress does to the body.#nchat

A2. My intruder ones are hard to shake, but I must admit I haven’t had bad ones in a year. KNOCKING ON WOOD! #nchat

A2. I blame noises on the cats to keep myself calm. I just ignore the visuals if I can. Tell myself I’m wearing my hypnogoggles #nchat

A2. The first nap I took for my first sleep study I had an HH where i was being attacked a dog, tech had to wake me up early #nchat

A2. The ones where I hurt somebody, or somebody close to me dies, can really mess me up for an hour or two after waking. #nchat

A2. My husband has learned if I wake up crying to just say ‘it was a dream, it was a dream’ until I believe him… #nchat

A2. An HH can completely screw my day up. I do my best to scream out, so that my gf can come save me. #nchat

A2. He has quite cleverly incorporated Ben 10 and other cartoon heroes into his dreams to fight the baddies. #nchat

A2. My daughter sleeps with lights on to help with her intruder HH. #nchat

 

Q3. What situations/factors seem to be triggers for nightmares and/or HH? #Nchat

A3. our son said he dreamt more on holidays – so maybe sleeping in unfamiliar surroundings? #nchat

A3 Previous fights, being overly tired (HH), unhealthy food perhaps?

A3: Mine seem very related to where I’m sleeping and what *could* happen in that space. #nchat

A3. Stress is a trigger. Nights I eat late I have more dreams/HH. Currently off meds including Xyrem so they’re frequent again. #nchat

A3. Stress… scary movies… #nchat

A3. HH have decreased significantly since I stoppdd sleeping on my back. Others have luck with that too #nchat

A3. work stress, since one of the themes is work related. The kind where I solve a problem, in a way that I later find was nonsense. #nchat

A3. Drinking too much, i know i know #nchat

A3. Stress and a certain time of the year for me. I seem to have more episodes of HH when I’m worried about something #nchat

A3. Loss, one of my dogs died. Extreme stress, I lost my house. I lost my job, thx #Narcolepsy #nchat

A3. When he is stress and over tired after school he is definately more likely to have worse dreams / HH #nchat

 

Q4.  Want to win a copy of @RemRunner’s “Wide Awake and Dreaming”? Tell us about a funny dream/HH you’ve had! #Nchat

A4. I have a lot of ‘happy’ dreams about celebrities! I love those ones! Wake up with a big smile on my face! Thank you Brad Pitt! #nchat

A4. Most of my dreams are not safe for #nchat

A4. I was working; a key was stuck on my laptop; it popped off. Except I actually got up and popped a key off my laptop. Oops. #nchat

A4. After a our trip to Ireland, my daughter had a dream that she rode on a flying dragon to defeat some evil people in a castle. #nchat

A4. (not to win- just to contribute)…I saw a giant yellow spider climbing on my husband’s pillow and he woke to my arm in full swing #nchat

A4. Had a great rom-com film dream with James McAvoy last week, with hilarious early days r/ship shinanegans. He’s a great kisser 😉 #nchat

 

Q5. Do you act out your dreams in any way?  Have you ever been diagnosed with REM Behavior Disorder? #Nchat

A5. I talk, laugh, sing, etc in my sleep. I sometimes do things like point or smile. Many times, the movement wakes me. #nchat

A5. My daughter talks a lot in her sleep. Will actually engage in short conversations. #nchat

A5. Yes Im always fighting evil doers or save my dogs and friends from evil. Im a super hero. #nchat

A5. I stood at the window recently and kept trying to close the blinds. They were already closed. #nchat

A5. I apparently have been acting out my dreams. But have not pursued a diagnosis. #nchat

A5. I have been talking in my sleep since I was a kid. I point out that even sleep won’t get me to stop talking! #loudmouth #nchat

A5.  talk, kick, punch and roll in sleep but no REM bd #nchat

A5. I have wondered if I do…but so far the neighbors haven’t said anything. #nchat

A5. My dreams are very much like a anime, im weird thou #nchat

A5. Yes. I was diagnosed with #RBD at the same time as my #narcolepsy. I’ve done a lot of random stuff… #nchat

A5. My daughter talks a lot in her sleep. Will actually engage in short conversations. #nchat

A5. We’ve never seen him act anything out, but before he was diagnosed he’d sometimes wake and seem to not recognize us etc. #nchat

 

Comments

  1. kristina garrison says:

    I am frustrated with the whole thing. My cateplexy is getting worse and fighting with the insurance company is draining. I still have elavated ast liver enzymes….I have even had a liver biopsy which shows healthy but inflamed. I have tried lots of meds that just don’t work. The best I have is 2 sleep attacks on a good day taking nuvigil and a new one called pristique. The anxiety is better but still there. I do a lot of automatic behaviors like laundry. I got a fit bit that monitors sleep patterns in the hopes I could better understand what happens at night. I wake up 7 to 10 times a night. With average sleep of 6 hours. I went on leave from my job 6 months ago after working there for 15 years. I had hope that all would be fine after finding the balance of medication to take. HOPE is dwindling and so my last ditch effort is heading to Stanford in a week. Insurance keeps denying Xyrem. At this point I wonder if my body will reject that too. I have gained a lot of weight and my left side just isn’t working right. I used to teach fitness so being active is not the problem. My insurance company through work has now denied the disabiliy claim twice. Any suggestions on going forward? Feeling helpless and scared at the inpending doom that awaits me. Please shed some light!

    • admin says:

      Hi, Kristina! I’m sorry you’re having such a frustrating time. Have you joined any of the Facebook support groups? How long as it been since you were diagnosed?

      Has your doctor suggested taking a break from the Nuvigil to see if your liver enzymes straighten out? I know it sucks to be without medication for any length of time (BELIVE ME, I KNOW! I’ve been off all meds since August and it’s a HUGE struggle), but if you could at least know if that’s the cause, you could figure out what to do about that particular issue. I know of someone who had serious problems with their liver while on Provigil, which is very similar to Nuvigil. And what’s up with your left side?

      As far as the insurance company denying Xyrem, has your doctor appealed? Does the insurance company give a reason for the denial? I’ve heard of some people being told they had to try different medications before the insurance company would shell out the money for Xyrem since it’s soooooooo costly. PLEASE don’t lose hope, especially since you’re going to Stanford soon. It takes time to find treatment that works, and even then, we may still have to make adjustments in our lives so we can live as fully as possible. That’s why it’s so important to find support, even if only through the online community, and to make sure our medical team is working for us.

      Please feel free to send me an email if you don’t want to keep commenting publicly. stridesagainstnarcolepsy@gmail.com Let me know if there’s anything I can do to help.

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