Does anyone have narcolepsy without cataplexy?

I have had narcolepsy without cataplexy for 12 years. Its not really uncommon. A lot of people have this some worse than others and some don't even know they have it. In the 12 years, I have learned things about the medication. I was put on a medication called adderall at first every few months they increased the dosage then had to change it and I started on vyvanse, same thing with that medication. I just recently went back to the doctor cause it quit working as well. Come to find out the medication vyvanse caused my metabolic system to start crashing. Now I am having to go through a bunch of tests and try to resolve a new problem. So I am just letting you know to make sure your doctor checks your comprehensive metabolic panel every 6 months. Also check your CBC with platelet and diff… I just want people to know so they dont have to suffer like I am. Take care of yourself.

I have Sleep Apnea, Cataplexy, Narcolepsy, and EDS. I am in the Army and apparently the military knows nothing about Cataplexy and the severity of its symptoms. I am medicated with xyrem now and i can function pretty good, as well as Ritalin for the EDS attacks. The Army is not wanting to give me anything for this disease except about 10% and a ATTABOY. The Army ranks it at 10%. Any suggestions or advise on what to do?

How much time do you have in? Where are you located? I live in Hawaii and am being treated by a neurologist who has bent over backwards to get me the help I need. My husband is in the army and this doctor just retired after 30+ years. He understands how the military operates and he completely advocates for the patient. I have never seen a doctor that puts so much effort on helping his patients. He does what is right for the patient not what the military thinks would be right. Message me and I can give you his info. He might be able to help you. It is definitely worth a try!

I have IH.

Hi LauraL! Yes, that's me. :) I just discovered it. Thanks!

I've discovered that Narcolepsy Network has an online forum/support group. http://www.narcolepsynetwork.org/forums/ Maybe you've found it already—I've seen a few posts from an 818sis on that site, too. :) I've found it to be tremendously helpful. I post there as LauraL.

Thanks, Stacie! Cataplexy is when your muscles give out on you, usually when you are experiencing an emotion. Sounds to me like you should ask your doctor about it, If you're falling asleep on your keyboard mid-sentence. But I'm no doctor. I haven't even officially been diagnosed yet. One more week until my sleep study.

Thanks NorCalGal! I'll check out those sites when I get home (well, maybe after a nap).

Hi my name is Stacie I was diagnosed with narco back in the late 80s early 90s,I would fall asleep at just any time, driving was a bad one even though I just had a good night sleep so I thought. So I saw a neurologist and at that time he told me the good news, an back then they used Ritalin .Well let me tell you, it scared the pants off me when I started taking it. So I called the Dr. because I had never slept at night like that my entire life! You see I had four children, I thought for sure I wouldn't wake up if one of the children would cry out. Well I was told it would be ok that I will wake up, and I did. S ve the problem. My next appointment we will talk just on narco. I hope this doesent sound I'm sorry I just fell asleep and totally messed this whole thing up and don't know how to fix it My face hit the key board again I'm sorry!! I have one question before I mess up again.I should know this but what is cataplexy ? Ok I can't stay awake I better go. Thank you

I've just been diagnosed as well. The sleep neurologist thinks I have narcolepsy without cataplexy. I was also very surprised—but she was the fourth doctor I've seen, and the first one who could make any sense of my sleep study results, so I'm just grateful I've found answers. I've been taking Nuvigil for almost two weeks. For the first week I took 150mg/day (in the morning). It made an amazing difference—within 20 minutes of having taken the medication I felt more awake than I have in months. This week I moved the dosage up to 250mg, and there's more improvement. I've also been trying to take naps at lunchtime (trying being the operative word—laying on a yoga mat in an empty conference room isn't very comfortable, so I haven't yet managed to sleep). The mid-day rest seems to be helping, too.

I admit that I still have more questions than answers about this disease, and I'm still alternating between being really happy that I'm finally getting treatment, and really bummed that I have an incurable neurological disorder. :/ I've just been poking around on google, and I found a couple of resources. Stanford's Center for Sleep Medicine has a great website explaining different disorders. http://stanfordhospital.org/clinicsmedService... I've sent the link to friends and family so they can learn about my condition. I've also found wakeupnarcolepsy.org and narcolepsynetwork.org, although I haven't explored the sites too much. It looks like Narcolepsy Network hosts an annual conference for patients—it's in October in Cleveland, and I think I'd really like to go!

Please do let us know if you find an online support group. Hang in there!

Laura

¡Viva siestas! I spent a year in Paraguay, and the siesta was a life saver, business, and almost everything else closes for about 3-4 hours!

Hi sleepygirl! Thanks for the reply! Those resources would help a lot of us. If anyone knows, please do share!

I have Narcolepsy, and didn't realize that my occasional crooked smile, droopy eye, clumsiness, and dropping things were actually the Symptoms of Cataplexy until I talked to my neurologist. I feel so much better now that I know what has been up with me all these years. A lot of people confuse sleep paralysis with cataplexy, I have noticed. I am looking for a online support group to help me deal with living a successful life despite my disorder. Does anyone know of one? I'm also looking for a book that will help me cope. Any ideas,

Oh my, I had just ask earlier in a reply what is cataplexy and you just answered my question and I very much have it. I get so mad at my self all the time because I'm dropping things so much, my cell phone takes a terrible beating I think it's on the floor more then in my hands. Can you tell me if when you take medication for narco does it help the cataplexy or not?

Thanks, Leslie! That sounds a lot like my story! People have always thought I was lazy, or not getting enough sleep. I've always taken naps, and have never felt "refreshed" after sleeping in my life. There needs to be more awareness of N w/o C, because driving with this condition is extremely dangerous! People look at me like I'm crazy when I tell them my doctor suggested it might be narcolepsy. They figure if I don't "pass out" then I don't have it.

I have narcolepsy without cataplexy. I went years hearing that I was just needed to get on a sleep schedule and force myself to get up. It took driving into the opposite lane for the military doctors to send me on for a sleep study. Lo and behold I have Narcolepsy and Obstructive Sleep Apnea. I finally got diagnosed last fall after telling doctors it was not just a matter of getting up. Good luck! Keep us posted!

IH is Idiopathic Hypersomnia which just means that they really don't know what it can really be other than it shows symptoms of other sleep disorders.

Don,

Hi! Thanks for your response! What's IH? I am going in for a test to confirm the diagnosis on May 1st. So, I'm mot on any meds yet. There should be a support group for us. Is there one that you know of? How does this affect you?

Hi there, I also have Narcolepsy without Cataplexy and have been looking around for other people with the same disorder. I have been tested a few times for a proper diagnose and that's what I have. Although, another sleep doctor said I have IH. Are you currently working on getting treatment for this and what are you taking?

Thanks, Tiff! Do you mind if I ask the age of onset of your cataplexy and how long it took to develop the full attacks?

It's very possible that you could have narcolepsy without cataplexy. When I was first diagnosed I didn't present traditional signs of cataplexy. Cataplexy I have found can be very minor like muscle weakness in the face. That's how mine started now I have full cataplectic attacks. I hope you are one of the lucky ones that doesn't have to deal with cataplexy. My advice for you would be to pay close attention to your body any slight muscle weakness if you are diagnosed could be a cataplectic attack. If you show symptoms follow up with the doctor. Good luck to you!!!

Hi Jamie, thanks for the reply! Can you tell me anything about how narcolepsy affects you?

I have Narcolepsy without cataplexy.

Thanks for your reply! My appointment is May 1st. I'll keep you posted. Is there an awareness group for N w/o C? I'd like to support that.

Great question, thanks for asking. YES, you can have narcolepsy without cataplexy.
I am really glad to hear you are having the complete overnight sleep study followed by the next day MSLT ( multiple sleep latency test ) where they will observe and record how quickly you fall asleep in 5 scheduled naps. They will also note in the MSLT whether or not you fall directly in to REM sleep. This is part of the N diagnostic criteria.
Good to officially RULE OUT apnea! I know many people who have both apnea AND narcolepsy.
…when I was first tested - I was positive for severe sleep apnea and came VERY close to getting the N diagnosis too. But I definately do NOT have narcolepsy - I was just profoundly sleep deprived and once I got adjusted to cpap treatment - all was resolved.

Best wishes to you and let us know how you are doing! Do you have to wait long for the overnight sleep study and MSLT? Some people get in right away and I hear others say they have a 3 month wait just to get in to the sleep lab. Good luck with that.
tracy