June #Nchat Recap

I have much to update on since my last post almost two months ago.  First, I want to share the June #Nchat recap.  This was the tenth #Nchat and one of my personal favorites!  While we suffer differently as individuals, we have so much in common.  I’m so honored to be a part of the Twitter narcolepsy family.  This chat rejuvenated my fighting spirit.  I think you’ll see why in the answers to this month’s questions.

If you haven’t yet participated in an #Nchat, here are two quotes that sum up why you should consider joining:

“I’m so glad I made it to the #nchat this month!! It’s always a good day when I get to talk to you guys! Talk to you guys next month!”

“It’s like therapy only much cheaper than going to a psychiatrist!”

Q1. What is the scariest part of #Narcolepsy / #cataplexy for you?

A1 wondering how long I can pull this off without losing my mind #nchat

A1. it being a hidden condition.. ignorance and unwillingness of people to learn about N #nchat

A1 Stigma & never finding right treatment combo #nchat

A1. That I’ll have it for all of my life and may never find a solution that makes me function better

A1. Falling asleep at the wheel and hurting somebody

A1. The scariest part fluctuates for me. Right now, it’s worrying my daughter will have #narcolepsy one day.

A1. That ignorance of the masses will cause me to lose my job or driver’s license. Or no better meds will be developed.

A1 my sons hallucinations and full on cataplexy scare the heck outta me!

A1. For our boy it seems to be sleep paralysis while having hallucinations

A1. That I won’t be able to find a career that I will love and be awake enough to accomplish

Q2. What is the scariest part of trying new meds?

A2 side effects.. that’s partly what got us here in the 1st place

A2. Being unsure of if and how long meds will work. Side-effects and cost as well. #narcolepsy is expensive to treat!

A2. For me, its that they will never work and make my life a living hell in the process. Oh wait that’s how it always is.

A2. Side effects and/or lack of effectiveness. And the waiting to see if they do or don’t work. aka starting over.

A2 that feeling that no med will bring back normality. The sense of pointlessness. But I know they do help him a great deal.

A2 Honestly….is telling doc it doesn’t seem to be working & asking if we increase or try something diff. Feel soooooo judged by him

A2. Fear of terrible side effects and fear of potential future costs.

A2. Mostly just wondering (a.k.a. worrying) if a side effect is “permanent” or just a beginner thing that will wear off over time.

A2: I worry about addiction and psychiatric side effects of the stimulants. Scared hypnotics will turn off my autonomic nervous sys.

A2 side effects being worse than the problem they are fixing

A2. That they will make me worse. Sometimes body finds meds difficult to process, which makes me more tired.

Q3. What are some of the worst side effects you have faced trying new meds?

A3. Higher dose of Xyrem gave me gastroparesis, slow emptying of the stomach. Caused me all sorts of problems. Also, anxiety.

A3. For me it’s Xyrem and bed-wetting. Although infrequent. He thinks he is sweaty!!!

A3: Landed in the hospital 4 days 5-16-13 to 5-20-13 taking too much Xyrem on 5-15. Still can’t feel my left thumb.

A3. Nuvigil made me feel like I was two steps away from a heart attack. That was scary.

A3 heart palps :-(

A3. Complete freak outs! Freak out about work, my dogs, my gf. Never able to calm down and breath for a min.

A3- son had horrible headaches. So all he wanted to do was sleep and then sleep off the headaches with nuvigil

A3. Just in the last 3 months: migraines, frequent vomitting, extreme & uncontrollable weight loss (that ppl think is a good thing)

A3. My boy had scary heart palps & pain after starting Xyrem & Concerta together. Settled now. A once off.

A3. Xyrem made me throw up in my sleep a couple of times after upping the dosage for the first time… Not a great confidence boost.

A3 cont. depression, crying, loss of focus, slipping performance at work… yep it’s been a WONDERFUL few months here.

A3. It’s too long now, but my head ached, heart raced and I didn’t feel like myself anymore

A3. And somehow gaining weight, BS

A3. Heart palpitations. Thought I was having a heart attack & called a nurse neighbour to check me over. Scary stuff

Q4. Compare and contrast your feeling from the day you were diagnosed to the present.

A4. Day of Dx, I had hope that meds would work. Today? It’s more about lifestyle changes and working towards acceptance. Meds stink.

A4. Thought I’d be able to get back to how I was before I got so bad, now trying to find a new normal that I can be happy with.

A4 happy that after ~8 yrs I was finally diagnosed & I could finally try to find a fix. Now I’m just pissed because there is no fix.

A4: Relieved to have a diagnosis that makes sense, still very hopeful I will get it under control. More motivated to win than before

A4. Initially relief that we knew what was wrong with him. Since then fear of how he would cope. Now, pragmatism and encouragement.

A4. Day one: Didn’t think twice about it. Today: I have lost everything, deep in debt and barely surviving

A4. Wish I would have learned more, cared more and that I was pushed more to care.

A4. Now I know more, care more and know what I need to make it.

A4: relief from diagnosis. But mostly frustration and anger, a lot of ‘why me?’

A4 I’m happy I know what’s wrong with me, but sometimes it hard to cope with the fact that narcolepsy will never go away..

A4. About the same. But I know more and helped build our #narcolepsyfamily which makes me feel great! But overall- just as upset

A4 Hard to put in words…felt “lost” (yr of no explanation), then “found” (dx), and now lost again (Kubler Stages of Grief, anyone?)

A4. Better feeling regarding cataplexy. I know the triggers now. Actually, I mostly know now when to lay down 4 naps

A4. I have ups and downs. More downs. I wonder what the future with #narcolepsy really has in store for me.

A4. I’m more accepting of myself & more confident in challenging my (rubbish) doc opinion. But the feelings of shame still creep in.

A4. Before I was diagnosed I thought I was just a sleepy person. Now I feel like a disordered person. Sometimes hopeless

Q5. What keeps you positive when you’re suffering the most from #Narcolepsy?

A5. It’s nice when you can talk to people that know exactly what you’re going through. And won’t just call you lazy..

A5. Thinking about previous good days helps me get through the bad days. Knowing I have lots of people to turn to helps as well.

A5: knowing I’m not alone, and their will always be a #narcolepsyfamily member to talk to

A5 knowing I am not alone (even at 300am…I have fellow sleepyheads across the world to check in with at all hours) Hugs!

A5. Sarcasm and humor has helped me tremendously through this whole ordeal!

A5: Faith in God. Narcolepsy forces me to endure, to evolve, to grow stronger. To pour more faith into God’s plan. I’m transforming.

A5. Mostly my news feed of sleepy tweeters that I can read at any time.

A5 My boy can be v negative with low self esteem. He has dyspraxic tendencies too. I try to get him to see positives but its hard

A5. Definitely the #narcolepsyfamily community and my kids. Without them, I’d have no real reason to work through the problems

A5. Yes, I love my #narcolepsyfamily! Probably my best support group, ever!

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