Hi! I am looking for some advice regarding Narcolepsy. I am still waiting for my diagnosis, but the sleep doc says that he's pretty sure that it's what I have. I'm struggling so bad with this! My appointment for the overnight sleep study and nap tests the next day are still 3 months away and I feel like I'm going insane waiting. I don't know what to do to stay awake!
2 Hearts
Hi and welcome I don't know much about the condition but there is others in the group that might be able to help with that and I think once you know if you have it or not the Dr. should be able to help with that too. Have you tried vitamins and herbs to help you? I always look them up online to see what can help me for it's not going to hurt at all and so much safer.
Hello and I have already been diagnosed and am under a doctor's care. This condition has taken control over everything I do in life. So if you have it I deeply sympathize with you. I can give a little input as far as my experience so ask anything you like.
2 Hearts
Hi . This condition is life affecting and unfortunatley all you can do is wait for a diagnosis before the doctors can start you on any meds that might help you . I wish i could tell you how to stop the tiredness but there is no trick to it . I went down the illegal route and started taking amphetamines to cope with the overwhelming feelings of needing to sleep all the time but this meant that when they tried me on medication it didn't work because my tolerance was so high . I guess what i'm trying to tell you is there's no quick fix to this and it will have an impact on your life but if you can just keep coping till your diagnosis there are many meds the doctors can try you on and hopefully find one that will help you control your tiredness . Good luck to you , a diagnosis does help even if it just confirms what you already know .
Hi there! I am sorry to hear that you are struggling. I have been diagnosed for about two years and no medication or supplements have worked for me or I was highly allergic. My mom had me try acupuncture and neuro-feedback which has helped me tremendously!! They not only have helped with my narcolepsy/cataplexy, but they have also helped with symptoms of previous traumas like a concussion and sexual assault. Definitely worth looking into! they are expensive, but if your body can be healed in a few years, then that is a whole lot better then being stuck on medication.
LaLa4ever
This condition is real so you are not crazy or lazy. It took me half my life to get proper diagnoses. Regular physicians can't properly treat you. Be persistent you will find the right doctor. The person that figured out my problem was my Boyfriend now Husband. He attended medical school while we were dating. He said I read about people like you. He suggested for me to go to a Neurologist. After my visit and lengthy questionnaire , my DR. decided to have me under go a over night sleep study. I had to fall asleep 4xs for 20 minutes and write if I had to describe the dreams. Out of the 4xs I dreamt 3xs and could describe the dreams. Stay on top of research and your Dr. All doctors do not know or understand the problem. Now they say its Sleep apnea. I'm not over weight and this is a problem all my life. The most dangerous thing is driving and realizing your sleep episode. I made so many excuses for my sleepiness but can't hide no more. So keep searching you will find the answer. B.Well
Have you been diagnosed yet?
I have been battling with this monster for years now. I have managed to live a normal life considering I have a little one to support. I'm here to give any advice I can.
1 Heart
I hate the sense of laziness comes up as I've been told Im lazy at work. Do you take any medication and please tell me how your mind works on a daily basis. Mine feels like some lit a sparkle in my brain and the sparkles are my thoughts.....everywhere but here
Hey, little late to the party. I am 25 with a narcolepsy diagnosis along with cataplexy and a newly discovered epilepsy diagnosis. It sounds like you are feeling frustrated and lost regarding how to stay awake with narcolepsy. Medicine can help a ton, as it has with mine, but I think another thing that helps a lot is monitoring daily activity and being honest with folks around you. My situation changed in a big way when I started regularly going to bed earlier, drinking more water, going to the gym...(the usual healthy stuff docs tell you to do). You can't eliminate the issue but you can definitely work to thrive with it. My situation also changed when I was honest with folks around me regarding what it is like. Folks think they know what narcolepsy is but they really don't so it falls to us sometimes to help them better understand our specific situation. Hope you have found answers in the months following your post!
1 Heart
I was prescribed Adderall 30mg twice daily and it works great. The quality of life has improved 100%