Hi, @rebeccamiller -- sounds like stimulants have not been at all ideal in your case for narcolepsy, due to increasing your chronic complex regional pain syndrome (CRPS) pain.

I'd like to offer some Mayo Clinic information on narcolepsy, here: https://mayocl.in/2rx7Wjk. Information on night terrors can be found here: https://mayocl.in/2FMVSgs.

I thought you might like to meet some others on Connect who have talked about narcolepsy, like @oldkarl @plshelpmyfatigue @jimhd @disneyfan @scottsdalehealth26 @kdubois. Hoping they may have some ideas for you on nonstimulant medications for narcolepsy. @darlia and @hopeful33250 may also have some input.

My sister-in-law has narcolepsy, and she has been taken off of driving for any distance more than around town -- she was having trouble with a longer commute to work and experiencing symptoms. How has driving been for you?

Hello @rebeccamiller and welcome to Connect!

Your post certainly presents a variety of problems that make it hard to treat your narcolepsy. I see that Lisa, @lisalucier invited me to this discussion.

I have Parkinson's (PD) and people with PD usually all have sleep problems with vivid night time dreaming and often "thrashing about." Sometimes when I wake up I feel tired from all my activity during the night so I have some understanding of what you might be experiencing.

Have you had a thorough work-up with a neurologist regarding the night terrors, narcolepsy, etc.?

You are not alone. I too have severe narcolepsy with cataplexy. I take generic Effexor. This has helped reduce cataplexy episodes. I can’t imagine CRPS on top of N/C issues. Bless you.

You are not alone. I too have severe narcolepsy with cataplexy. I take generic Effexor. This has helped reduce cataplexy episodes. I can’t imagine CRPS on top of N/C issues. Bless you.I also have night terrors, sleep paralysis and reality dream issues. The scariest for me, beyond Cataplexy has been sleep paralysis awhere my breathing is blocked and Ihave to struggle through paralysis to get to a position where I can catch a breath.
I had to see 6 different providers before finding a doctor who understood what Narcolepsy 1 is. We are currently working on meds to stabilize symptoms. So far the best treatment has been self isolation, which stinks! I have been limited in driving and advised not to swim or use public transportation indepently, due to associated risks.
This onset at age 49 and it has totally changed my life and who I am.

I also have type 1 and have never tolerated or responded well to stimulants or antidepressants, often having severe and life threatening side effects. I was diagnosed 35 years ago at 23yrs old. My Dr a neurologist started me on Codeine with low dose ritalin after doing a study. It worked really well for years without any problems or side effects. Over the years I have built a tolerance which should be expected with this medication. I have been at 7.5 mgs hydrocodone for a few years, it's barely helping at this point. When working well it clears the severe fatigue, heavy brain fog allowing for much clearer thinking, better decision making, better communication with others, far less depression and anxiety, the list of benefits is ongoing including preventing cataplexy. I have not experienced any serious addiction problems or withdrawl in the countless times I've ended up unable to get my medication over the years. The biggest problem is getting a near adequate doses is nearly impossible with all the regulations and the fear the government has put in Drs over opiates. It's extremely upsetting when you have gradually been reduced to living completely isolated in a bed in such deep, thick, painful fatigue and knowing it doesn't have to be this way and wouldn't with adequate medication. Not only that, I need to move back near my kids. My old Dr's have retired or moved out of state, I'm absolutely terrified I'll end up unable to find a Dr willing to work with my medications. Without them I simply cannot take care of myself, keep my house up, keep track of finances or even carry on conversations with my kids. My fatigue is just so deep. Stimulants have triggered really horrible side effects or don't do much to help. I've been off the hydrocodone as long as 9 months. Most recently it was 3 months. I was in the worst condition physically and emotionally that I have ever been in at the end of the 3 months and just cannot imagine having to live the rest of my life like that, especially being 58 yrs old. I think it's just terrible that I have to worry about being able to get the only medication that has worked well for me for most of my life. We should be able to have what works or have a Dr willing to find what will work. Seems the healthcare system has been getting more and more difficult while quality of care continues to decline taking patients ability to live with some quality of life down with it. Pain patients are being left to suffer horribly as well. It's down right cruel what is happening! Looking into why and how opiates help to reverse severe fatigue, cataplexy as well as other symptoms of N1. I believe they should be on the table and considered for those who cannot tolerate stimulants. While not for everyone they very well could give so many back their lives! I tried to post links to research into this, it won't let me.