I get different answers from different people regarding these questions. I hadn't read a book from the age of 15 till I got diagnosed and put on Provigil. I can now read but only if it's really interesting. As I get to the bottom of the page, I find I have little memory of what I just read. I also have a terrible memory and verbal communication is sometimes difficult. I forget words and loose my train of thought mid sentence. My doctor said it is from sleep deprivation, but I wondered if any of you have the same problem and what you do about it. Also, my diet is terrible. I look at healthy food and have no interest. My sleep dr says there is no connection to my narcolepsy, but my regular doctor said it might be possible that my body craves the carbs in need of energy. Any thoughts?
Hi Tired, I definitely eat healthier when I’m not tired, and I often ask myself “Am I hungry or do I need a nap?” Reading is hard, my eyes lose strength to converge properly. If I’m falling asleep I can’t remember the page. And if I’m half asleep and trying to talk, it had better not be important because of the reasons you mention. I just have to nap. And my C-PAP machine seems to help, though I also have narcolepsy.
I have always loved to read but I have big trouble retaining what I have read. It is o.,k. for fiction but terrible for learning. Lots of trouble in school. I also have huge cravings for carbs and sweets. I have same verbal problems but that has gotten worse with age. I just call it brain farts and deal with it. Carbs do not give me energy. They contribute to sleep attacks for me and if I am working, etc. I stay away from carbs. When I don't have some kind of deadline, which is rare, I indulge.
I was diagnosed with narcolepsy 4 yrs ago some of the first symptoms I noticed was my memory wasnt like it used to be at first I didnt think anything of it. However 4yrs later here I am and my memory is so bad that anything of importance is wrote down in my note book I go everywhere with it if I think of questions for the doctor I write them down. I can sit something down and forgot where I put it a minute late important things go in the same spot develope a routine it helps alot. I am now even experiencing problems remembering how to spell basic words. Concentrating I will be doing something if someone talks to me then that task doesnt get completed ive burnt food ive told my kids I would be out to play in 5 mins and get side tracked and an hr has went by this time ive already forgotten about playing ball with my kids. Im still trying to find something to help with my concentration level the doc had me on provigil it did not work for me after a yr he finally switched it to adderall it has helped my concentration it to adderall which I am seeing a difference so maybe ask about that. I also have the same speech problem and conversation problem as frustrating as it is I apologize to who I am speaking to most ppl r very patient I have not found andthing to help this yet and sometimes my speech will get so bad I cant even understand myself. I hope this helps a little bit one thing with narcolepsy that I have found theres not a medicine to help all the symptoms so we have to get creative and try things that can help ourselves like me and my notebook and putting important things in same spot these are nust a couple of things that seemed to help me. Its all about trial and error and not giving up. Rember your not alone I know I suffer from these three things and im pretty sure more do to. Best wishes sorry I wrote a book
angie
The notebook is a good idea Angie. In fact all your ideas are good and managing our conditions is the way forward sometimes. I can’t count how many times I find myself searching for the bit of paper I wrote on when I had something it was important to remember so I am going to search out a notebook which won’t be easy to lose. As for reading a book, it takes months because I fall asleep within minutes of trying to read and if I do read a few pages I have to re-read them next time as I don’t remember them.
My mind is usually all over the place. It has been so ever since I can remember. Between daydreaming, sleeping, and trying to create a normal life, I am constantly fighting for balance. In high school I was better at cramming. I would read everything I needed over and over again just minutes before testing. I would ace my tests, but when it came to finals I was doomed. I couldn't remember much because it was too far gone. I never could understand that and it frustrated me. I love to read and I read, but these days I read more articles than I do books. I can hardly find the time or stay awake long enough to read books like I used to. I tried going back to school a few years ago (actually twice). The first time, I found that I couldn't stay awake to handle responsibilities at home. I was working, a single mother and trying to go back to school. Everything else got in the way of school, because I would fall asleep just minutes after I cracked open my lesson books. The second time was online school. I thought maybe I would have more control over my lessons if I did online (that's how they pitched it). That couldn't have been any farther from the truth. By this time, I was working an entirely different job with rotating shifts and my son was a few years older. The job I had was very demanding and so was my son. So when I added school to it, sleep was all I did when I wasn't working. I tried using my break time at work to study, but that didn't work either. I know I have a lot of knowledge in my head, but it's frustrating when I can't bring it to surface when I need it. I do have to say the notebook idea does work, when you remember it. I used to write my entire daily schedule down and that helped me tremendously. But then I went through a depression episode and stopped. Since then I just write down all important appointments and things I have to do and set reminder alerts in my phone. When I am working on a project, I have to scale and organize everything so I am constantly writing at those times. I even write some of the same things in a different notebook, because I have so many notes that I forget where I put it.
I so admire any mother who holds down a job and studies as well. I am hardly surprised that having narcolepsy would make that impossibly difficult Memedawn.
The question Tired posed about forgetting words and losing her train of thought, namely is this due to just tiredness like her doctor says or is it the narcolepsy?, I would say from what you have all written that it is actually a feature of the narcolepsy. Would you agree?
I would definitely agree. It is the narcolepsy.
Reading and remembering has always been a problem.I ran a successful business for 20 years.My memory skill for dates names phone ect. Were exceptional. Until I was around 38.Thats when I began memory lose.Talking back word Losing my train of thought,confusion.At 42 I was diagnosed with narcolepsy cataplexy sudden drop attacks & memory loss. At 45 Dr discover that my thought pattern never shuts down ,basicly I am wearing out my brain. I would have thought that this was impossible. Ha
Like I always say, you never know what’s just around the corner… That must have been a shock Shan. So many of our members seem to have been showing signs of something wrong by their teens, usually getting labelled slow or lazy because they are teens. Narcolepsy is a cruel disease.
Thank you for your post. We can all now say to Tired that it is her doctor who is giving her the wrong information, though I don’t suppose the extreme tiredness helps.
Can your thought process really shut down? Mine never does, even when I am sleeping or daydreaming. That is actually scary if your brain can actually wear out or burn out. If that is the case, there is a chance where it will be of no use. Now I really have to do some research on this.
I agree sounds like narcolepsy if your doctor will not look into it and hasnt done any testing or hasnt or hasnt looked further into it I would suggest finding a different doctor. You deserve to have answers and receive adequate treatment so u can get the best quality of life possible.
Sounds like my struggles are similar to so many of you. When I said that the doctor said sleep deprivation, he explained that due to the Narcolepsy, even though I may sleep 10 hours, it's like I only got 5 or 6 hours, therefore, I am sleep deprived which causes the forgetfulness and lack of concentration. As for those of you who may be in school or need to learn anything, it helps me to take notes or highlight what I'm reading and then have a notebook in which I re-write the information in my own words so that I can understand. I too, have a notebook as my memory list. I have a small one I keep in my purse and write lists all the time. My kids call me "the Lister" but even though they don't have Narcolepsy, they are now grown and find themselves doing the same thing! I guess it may be helpful for others as well as those of us who have this horrible condition.