So I recently saw a new neurologist and he told me more about my diagnosis. I am wondering if any of you have this along with your narcolepsy.
So he told me that my main problem is something he called sleep inertia. As told by basic physics, inertia is basically an object at rest will stay at rest unless acted upon by an unbalanced force. In my case, if nothing forces me to wake up, I would sleep for the entire day. So, I told my doctor that I will stay at rest (literally) until acted upon by my mom. This sleep inertia is what causes me to be tired constantly. Most people with narcolepsy will sleep for a little bit, feel rested for a few hours then crash and nap then feel okay for a few more hours then the cycle repeats. I never feel rested no matter how much sleep I get. So, he changed my meds from 200 nuvigil in the morning to provagil- 200 in the morning, 100 in the afternoon, and 100 right before I go to sleep. This is supposed to help with the sleep inertia. It has sorta helped, but I am also taking serequel at night which is a sedative. I think that once we change that med this will work better. My only issue is that the provagil doesnt even last half as long as the nuvigil did.
So thats a little update on my diognosis and daily struggle. I am interested to know if anyone else has this too.
I had not heard of sleep inertia before. I looked it up on Google -- Sleep Inertia I'll read up on it more later. Tell your doctor the provigil doseage might need to be adjusted, or supplemented with something else.
I am sorry that you are having these difficulties. I took Nuvig.200 in am and then adderall at noon.....along w/ about
4 8 oz. cans of Diet Coke. I did this for 2 yrs. didn't ever work well and the dr. was considering taking my lic.
Now I take Prov. 200 am and 100 at noon along w/ the cokes. It seems to be working better. Enough that I can
still work 3 afternoons as a companion. I also has insomonia and take Lunesta for that and it sort of works. Better than Ambien CR. I have several other diseases that complicate matters for me. I am just so happy to be able to drive for
30 min. interv. and still work. Keep trying. I wish you the best of luck. I haven't heard a bout the sleep I. either.
I cannot feel rested either with taking naps,and I can sleep up to 18 hrs at times if there is no one to help get me motivated enough to get out of bed. I am diagnosed with Narcolepsy, long lasting cataplexy, and full body paralysis lasting from an hour up to 3 hrs, completely unable to move, speak, but i can see, and move my eyes. coming out of it, I have drooping on left side of my face, and mouth, extremely slurred speech. also, diagnosed with some night sleep disturbances ( unaware of) and is called hyper somnolence and insomnia.
I do especialy at ngith any little thing wakes me but not for very long i remember eatin something like a snack w hile in bed then i remeber feeling drop but in between pickin it up i feel like i jus woke from a long night sleep then as i atemp to continue to eat it happens all over again so finally getting up the next morning i find a bed full of food but dont remeber where i got it from cause i went to bed with a cup cake in wok up with chese cake and cookies and wat ever else well atlest that is what it was this morning i cant never seem to get through a hot cup of tea always wiend up with icecold tea without the ice my doctor upped my ritulin to 20 mg from 10 but it jus gets me to get tired earlier at night your not alone
I don't really have any medical information for you, but I can tell you personally I experience prolonged "hypnopompic states" upon waking. Most times when I wake up it is in the middle of a dream, and I can only describe it as the continuation of the dream. I used to be terrified of it, and it is still terrifying if I wake during a nightmare- because it takes a good long while for me to realize I was dreaming. But, the more intense the dream it seems the longer it lingers for me. Sometimes I can't shake it off at all, sometimes it only messes me up for a few hours. Once in a while I get a good sleep in, and I seem to be able to have a normal sleep cycle - or at least I am not constantly dreaming - and I wake up feeling good. My doctor has proscribed me Adderall, and it helps kick me out of the dream state. Though of course amphetamines have there draw backs. If you can get out of bed, and safely do this, I do a little bit of relaxing yoga and Pilates. The physical activity, seems to help me get over it quicker, and the nice thing about yoga and Pilates is there are plenty of things you can do laying or sitting down. So if you need to take a nap your already on the floor, with a nice soft mat beneath you. I'm going to posit a guess that exercise, even mild exercise, releases chemicals that act as antagonists (just like Adderall) to what whatever chemicals are floating around in my brain keeping me in that hypnopompic state. On days I can't over come it at all I just drag myself out to a comfy chair in the sun, and sleep with the sun on my face and a dog in my lap, so its not all bad.
Do you also experience abnormal hypnagogia? I get 'sleep startled' when I am falling asleep. It leaves me feeling like I was just being suffocated. This happens over and over again. Or a disturbing sense of movement, like I am being tilted. I also experience intense hallucinations, that can get pretty frightening if I happen to be in pain. If I have a sharp pain somewhere, I see spider like things crawling out of every dark space. But sometimes the hallucinations can be pretty, and I try to encourage them to go in that direction. I think of coral reefs and stuff... goodbye weird drippy spiders, hello wavy sea anemones.
well your case sounds like mine, and is pretty relatively close to mine. I suffer from narcolepsy and a couple conditions of hypersomnia. Sleep Interia being one of them. But i've also heard stories from my neurologist that most of it is still all bundled into 1 problem. Narcolepsy. The problem with diagnosing and curing narcolepsy is everyone is differnt. Everyone is missing something that is causing them to feel this way. Now they are working hard at harvard at least I think they are.. to find a "cure" instead of a medication we constantly take. A few things my neurologist told me recently that blew my mind.
Narcoleptics will always feel tired, some might not be as bad as others. But, Nuvigil, Provagil, Adderall, ect; are medications to help make it easier to stay awake, that doesn't mean you wont still be tired. You very well could be tired and if your like me the nuvigil just lets u use less of ur brain to stay awake. I use so much of my brain to stay awake I have epilepsy silent seizures. The only Advice i can give you, Is you may have to try to do what i started to do. I snack, I don't eat greasy foods anymore for they make it harder for ur body to digest which in return makes u more sleepy due to ur narcolepsy. I eat grapes when i have a craving, peanuts.. I eat deli meats in small portions. Ive done this for a week now. and i wll say 1 thing. I've felt better doing this then i ever did on medication alone. Now i'm not saying I'm getting a lot done. but for someone whos not on medication with narcolepsy. I'd say im doing quite a bit. When medication gets added to my new diet I can only hope the results are just as good. I wish you the best. Get your mom to make it a routine to help. i got my brother waking me up when he goes to work. For me theres always that period you wake up and ur like.. HOW LONG HAVE I BEEN OUT. i woke up 20 hours after i went to bed today, and jumped out of bed like full panic.. trust me its not fun i know.