Narcolepsy Type 1 (Narcolepsy with Cataplexy)

Is there anyone out there with Narcolepsy & Cataplexy? I cannot take any stimulants for my Narcolepsy; they significantly increase my chronic CRPS pain. Muscle spasms result from a stimulant, especially in my face, neck, and jaw. My pain goes off the charts. Chronic migraines set in - even with Botox for Migraines Injections. What nonstimulant medications exist that treat N&C? Also, I suffer from horrific night terrors.

Is there anyone out there with Narcolepsy & Cataplexy? I cannot take any stimulants for my Narcolepsy; they significantly increase my chronic CRPS pain. Muscle spasms result from a stimulant, especially in my face, neck, and jaw. My pain goes off the charts. Chronic migraines set in - even with Botox for Migraines Injections. What nonstimulant medications exist that treat N&C? Also, I suffer from horrific night terrors.

Is there anyone out there with Narcolepsy & Cataplexy? I cannot take any stimulants for my Narcolepsy; they significantly increase my chronic CRPS pain. Muscle spasms result from a stimulant, especially in my face, neck, and jaw. My pain goes off the charts. Chronic migraines set in - even with Botox for Migraines Injections. What nonstimulant medications exist that treat N&C? Also, I suffer from horrific night terrors.

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.

I have type 2 diagnosed this year at 63 (I've had the sysmpptoms for a few years), but you're telling much of my story. Stimulants make me more alert between naps, but doesn't stop them. Next comes Xywav. Have you heard of that?

@sleepstate I just started Xyrem (not Xywav for complicatd reasons) last night and slept well on a low dose. Wow, you can keep that cataplexy. I'll stay with type 2. It's the emotionally rollercoaster that's getting to me. There's a lot of stress at home with my wife having breast cancer. It's hard to get everything done without stressing out. That gives me overload every few days, and I just shut down for a while.

Best to you my friend.

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.

@sleepstate, I noticed that you wished to post a URL with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post are not spam. Please allow me to post it for you.

- The Strange Connection Between Opioid Addiction and Narcolepsy Might Help Us Treat Both https://gizmodo.com/the-strange-connection-between-opioid-addiction-and-nar-1827186672
- Change in brain cells linked to opiate addiction, narcolepsy https://newsroom.ucla.edu/releases/change-in-brain-cells-linked-to-opiate-addiction-narcolepsy
- Opiates increase the number of hypocretin-producing cells in human and mouse brain and reverse cataplexy in a mouse model of narcolepsy https://pubmed.ncbi.nlm.nih.gov/29950444/