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Narcolepsy Type 1 (Narcolepsy with Cataplexy)
Hi there. After years of unexplained symptoms, my daughter was finally diagnosed with narcolepsy type 1, aka narcolepsy with cataplexy. I too suffer from hypersomnia, but the cyclical nature and neurological symptoms seems much more in line with Kleine-levin syndrome. Does anyone know if there’s a connection between the two? Also, kleine-levin is so rare I feel like it would be hard to get a doctor the take me seriously. It was hard enough getting my daughter diagnosed with narcolepsy—it took years!
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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.
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?
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2 ReactionsYes. I've never been on that but was on Xyrem. It didn't really help me sleep, I would wake up every hour or two and my cataplexy was much worse when I got up in the middle of the night. I cracked my ribs and always had welts on my head from cataplexy it was so bad. Xyrem made me so hungry but despite getting up every night eating anything I could find I lost almost 50 lbs in the first 3 or so months and kept it off. I kept taking it because I was afraid of gaining it back until the copay went up, then I stopped taking it. Hydrocodone seems to help prevent cataplexy also. I only have problems in the middle of the night and shake it off by the time I've stumbled to my bdrm door. If I don't take it for 2 or 3 days cataplexy comes back. It's only hydrocodone, not codeine or oxycodone that really prevents my cataplexy for some reason. It seems nothing works on me the way it's supposed too.
@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.
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1 ReactionI'm so sorry, boy you have a lot to deal with. The stress will trigger more problems sleeping and with fatigue. I hope you've found a way and time to release some of it like walking, running or a hobby. I know it's tough to find the energy but the stress will build and eventually start causing more health and mental health problems. Do the Dr's think she'll pull through it? Is she handling it well or no? I sure hope she comes through it well. I can't imagine how hard that is on you both. Shutting down for a bit and walking or doing something to burn off the stress is a good thing to do.
Best to you as well. Let me know how you and she are doing. My thoughts are with you.
Oh yeah she's going to pull through for sure. It's just that I'm ounly good for 7-8 hours a day between naps, and I take her (and me) to all our aapontments, and I do all the cleaning, cooking, shopping etc. Next week she starts chemo which takes about 6 hours from leaving the house to getting back. I have to take extra Adderall just to make it or maybe sleep in the car. Not enough time = stress.
@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/
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2 ReactionsThank you! I get it, it's okay. No, not at all spam. They actually do work in our brains to reverse severe fatigue, cataplexy and other symptoms. They gave me my life back for nearly 30 years without serious problems. Of course it's not for everyone. I believe it can do the same for others who manage their medications well and carefully. Thank you for posting them. I understood why the delay 🙂