I discovered that i have narcolepsy without cataplexy around 5 months ago and after doing another PSG and MSLT it showed my AHI of 17.2/h. What i wanna share and maybe ask is how a real narcolepsy feels? because i dont wanna sleep anymore i just got sick of the sleepy feeling i reached a point now where i dont socialize or get out anymore it feel like its gonna consume all of my energy that i need to just stay awake; laying on my bed ofcourse. I even postponded this semester of my medical college just to get back on tract but it seems that it would take longer then i thought. I used to take concerta 36mg but it only worked for a week and my doctor duobled it to 72mg two pills a day but i got this extreme loss and confusion feelings so i started now on modafinil 400mg for over 2 months but i still feel the same as before but not as bad. As to my AHI it could be the reason why but the problem is i dont like putting on a mask that keeps me from moving as i want even small ones didnt work with me cuz sometimes i might open my mouth and then the leak happens.
Summarizing what I just said lol
1- have anyone got this feeling of being sick of sleepiness or just asleep all the time and kept on fighting to stay awake?
2-how long does it take to get back on tract as to normal mental and physical functions?
I get tired of everything :)! Feeling tired, trying to pretend I'm not tired, my mask, my meds... Then I remember that periodically I get frustrated, and that I have to be kind to myself because frustration or dissatisfaction is normal for me. The good news is that invariably I decide to start fresh and I'm okay for another three months or so.
The mask/CPAP machine takes time to get used to. It can make a big difference in your wakefulness. My mouth used to open very often but it doesn't happen anymore. It's annoying being attached to a hose sometimes :). I understand.
#1.Yes, I get sick of being tired and having to go down to sleep...but I got use to it.
#2. Another 4 or 5 months may help you to adjust and start to feel better.
Currently using a CPAP machine and often bite guard, wrist splints at night. I think the CPAP machine helps, takes time to get use to. I was able t train my self to keep my mouth closed and use "nasal pillows". A longer "hose" might help, I use a 10' hose instead of an 8'.
I'm not on any meds but I think your diet and supplements are very important. My diet is gluten free, organic and many supplements. Some of the supplements that may be important and helpful would be: D3, K2, magnesium, Vitamin C.
It's also helpful to just do what you can, give your self credit for doing what you can and be thankful for small things.
I have been sleeping away my free time for 30 years and heck yeah I’m sick of it. Finally got an official narcolepsy diagnosis this last month after being misdiagnosed by a quack several years ago. Got my first box of Xyrem today. Dear God I pray it helps.
I think cpap only works on obstructive sleep apnea but in my case its a high possibilty being central sleep apnea because i have done a gastric sleeve surgery three years ago and i became severely deficient in many of my vitamins levels like B12,D and C
I am wondering if I should try xyrem, I am trying to figure out how to go about getting a prescription for it. Is it something that I have to go back to a sleep specialist for or can I request it from my family Dr.?
Boris said:
I have been sleeping away my free time for 30 years and heck yeah I'm sick of it. Finally got an official narcolepsy diagnosis this last month after being misdiagnosed by a quack several years ago. Got my first box of Xyrem today. Dear God I pray it helps.
For me, I have to be multi tasking almost all of the time or I will feel the urge to sleep. If you schedule a nap or two it may help and otherwise, plan things that keep you going without tiring you out. For me, when I am watching a movie, I have to be playing a game on my phone quietly as well or I will sleep through the movie. if I get tired while studying I stand up and read my text book or play a quick game and then go back to my studies. If I allowed myself to stay home and not do anything, I would end up sleeping the majority of the day.
Abdullah said:
And will exercise improve my symptoms of being lazy or i just have to wait some time ?
HI Abdullah, I asked my doctor about central sleep apnea and she said that a regular CPAP machine and mask helps about 50% of the time. There is another type of mask that is available if the first type doesn't work. It both pushes and pulls air so it helps to breathe for you. Both kinds take time to adjust to.
All I know about Xyrem is that it's highly controlled medication manufactured by only one lab, I think. You must get a prescription for it from your sleep specialist. It seems to me that you would need to treat the apnea first. This is a very important question for your doctor.
I just spoke with my dentist about the oral device that is supposed to help with sleep apnea and she said she would send in the pre-authorization to see if my insurance will cover it. My problem with the cpap is that I almost always fall asleep before putting it on, and it can not help me if I do not have the chance to use it. Does anyone have any experience with the oral device for apnea?
Hi I am having the experiences I don’t want to sleep I don’t even want to sit still cause I will fall asleep so I Wat I do is keep moving like the multi task thing but sometimes I move too fast gotta be more careful cause I forget Wr I put things or start to uncon
Sorry unconsciously walk n talk I’m up every hour on the hour every night so frustrating n maybe if I had all of my medication then it will be different/ however digesting listen to music up beat loud run the TV or keep lights off if u want to sit do be fore u get tired that way will achieve Wat ur doing at least most of it
Froggzz, I fall asleep before putting the mask on, too. I have a new letter from my sleep doctor (I waited a year to see if I'd still want one because of possible cost) for the dental appliance, which has to be made by a dentist who is certified in making them. I haven't followed through on it yet. Let me know what you find out, and I'll do the same.
Froggzzz said:
I just spoke with my dentist about the oral device that is supposed to help with sleep apnea and she said she would send in the pre-authorization to see if my insurance will cover it. My problem with the cpap is that I almost always fall asleep before putting it on, and it can not help me if I do not have the chance to use it. Does anyone have any experience with the oral device for apnea?