Do any of these explanations seem accurate in your life? How does Narcolepsy effect you? I am so interested in the opinions of others on how Narcolepsy has changed your life. What is different since you have been effected by Narcolepsy?
Here are some snippets from various sites on the subject. The link to the actual website is included. Let me know what you think, OK?
Long Term Effects of Narcolepsy
From the website of Narcolepsy Network - Click here to go to site.
...The consequences of narcolepsy may be many and far reaching. Sleep attacks and cataplexy in public are embarrassing and can cause serious social and economic difficulties. Cataplexy may interfere with physical activities, and efforts to avoid emotions may lead to social withdrawal. Inability to work and/or drive may result in loss of independence, financial difficulties and a multitude of other problems. In these situations, a person can easily lose touch with others and become depressed...
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The following text excerpts taken from SleepFoundation.org - Click here for the exact page
...The symptoms of (and some of the drugs taken for) narcolepsy may affect your sex life. Sexual problems, such as low sex drive and impotency, may result from severe sleepiness, depression, medications or cataplectic attacks. These problems, especially any resulting from a new medication or changed dosage, should be discussed with your doctor....
...Narcolepsy symptoms can also result in a change or loss of employment, physical restrictions and social withdrawal. Loss of self-esteem, learning difficulties and depression can result...
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Below are a few words from the Aurora Health Care site, from an article intitled "In his own words: living with narcolepsy". The whole article is good. You can check it out, click here.
...I've had to make many lifestyle changes. I had to give up my military career and change jobs. I only swim in shallow water. I'm still a heavy coffee drinker, just not three pots a day. I take regular naps, generally after lunch, around 4, and after supper. I can regulate when I need a nap. And by taking naps, I don't have to take as much medication. Since emotions can trigger cataplexy, I have to walk away from confrontational situations or I may fall over...
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At the website of Health Central, here is what they have to say about the emotional and social effects of Narcolepsy. Click here to go to the website.
...The patient suffers emotional and social difficulties from the uncontrollable sleep episodes and cataplexy. Studies have reported rates of depression in people with narcolepsy ranging from 30 - 57%. (In the general population, prevalence of depression is 8%.) Studies have shown severe emotional and social dysfunction in all areas, including work, relationships, and leisure activities. One study reported that 25% of men with narcolepsy suffered sexual problems. Some experts believe that the psychological and social effects are more serious than those caused by epilepsy (which narcolepsy can be mistaken for)....
There are many opinions about the effects of Narcolepsy on one's life. We all have our own unique experiences and opinions. How does it effect your life? What area in your life that is effected by Narcolepsy do you find the most difficult to deal with?
I am really interested in hearing different experiences, and I would like to post some of them here, with your permission.
Well, everyone, have a great rest of the week, and oh yeah, have any of you seen the film "90 Naps a Day" yet? I got some interesting opinions from some of you who have seen it, and I hope to write a little about it soon. I haven't seen it yet, I am in the U.S, and I haven't found a way to see it, I have only been able to see some clips.
16 comments:
Thank you for the compliment!! Your blog is much more interesting than mine though. I just got out of the hospital today, so I will try to continue mine soon. Mike
Thanks Mike! I am glad you are home, hope it wasn't anything that couldn't be fixed, and either way you will be in my prayers!
I wish not concur on it. I regard as precise post. Specially the title attracted me to review the sound story.
Nice post and this mail helped me alot in my college assignement. Thanks you seeking your information.
Glad it could help with your college assignment!
Via con Dios
Its hard to find real information that i can identify with i live in the UK. so thanks for this blog. I constantly have to educate my GP which is frustrating. I feel like nobody actually gives a s*** about my general health, emotional and mental wellbeing. All they are able to do is try to keep me awake. When i try to explains the scope of my daily difficulties, they look at me as if i am exaggerating and in their eyes i can see they think i should be grateful i am not in a wheelchair. Some have been kind enough to say it.
I have N with cataplexy and just found your site. I have my own, but I gave up on writing about my N a long time ago. Though I'd ask if you or any of your readers had issues with memory due to N? I can't take the meds for it as it gave me heart issues, so I'm looking for something to help my memory. I'm sick of forgetting my day to day life! Anyway, any responses would be great!
I was diagnosed in 2013, but in truth I feel like I have been fighting it since I was a child. As far as something to help your memory, I repeat things and make mental associations with things that mean alot to me. Also brain training games like luminosity are a big help. I know I have this, but I am going to fight it daily. Some days are better than others, I have had some setbacks in my IT career bc of it. But I make it my business to challenge my memory to be stronger.
I was diagnosed in 2013, but in truth I feel like I have been fighting it since I was a child. As far as something to help your memory, I repeat things and make mental associations with things that mean alot to me. Also brain training games like luminosity are a big help. I know I have this, but I am going to fight it daily. Some days are better than others, I have had some setbacks in my IT career bc of it. But I make it my business to challenge my memory to be stronger.
F. Jha'Nae Brady, Thanks for the tip on Luminosity. ive been thinking about giving something like that a try. Sorry to all for taking such a long time to comment! Jha'Nae, you seem to have such a positive attitude and great outlook. I have been diagnosed since 2003 and same as you, I have the good and the bad days...and months...it is a difficult deal but as long as I am here on this earth, I just have to keep trying to make anything that I can better, and do whatever I can do to learn, teach, help, listen...etc. Life is a trip! But even with the crappy thing called Narcolepsy, I remind myself as much as I can that life and everything in it is a gift. Not trying to sound mushy, I really mean what I say.
I wish you nothing but love, peace, and the to keep fighting the good fight! Dont you ever, ever give up!!
I have recently been diagnosed with N w/o cataplexy. At 31, I'm in a state of shock because I now have to change my whole lifestyle. I knew something was wrong for the past 9 yrs but the doctors just told me it's the lack of sleep from school, work, & travel I wasn't getting. I'm currently trying to find homeopathic regimens so as not to rely on the meds. My biggest fear is being a recent graduate, I wont be hired in my desired field but I do have high hopes!!! This article has helped my spirit knowing that I'm not alone in my fight. Thank You & Love to all
Karla, Thanks for reading and I am sorry to hear about your diagnosis. I was also diagnosed in my early thirties and it was a huge shock to me as well. Please be very careful with "natural" medicines and remedies. So many of them have been proven to be fake. I wrote a post on here about them too. I didnt want to have to take meds for the rest of my life either! but with trial and error, I do take conventional meds along with some vitamins and try to eat healthier. Sometimes it is worth it if the medicine works for you and helps you to carry on better with your life. But everyone is different. Just don't give up! Keep trying new things until you find what works best for you! Keep your "high hopes" that u mentioned, and you still, eventhough u have an illness, can do just about anything u want to do. Narcolepsy Network is one great place to find other people online with Narcolepsy, and there are many others that I am sure you will find too! It's good to stay in touch with people who have it and can relate to what you are going through. I wish you the best ever and stay in touch!!!!
I was diagnosed in2003, after my third wreck. I just had my first child. I always had a feeling there was something wrong with me,I would fall asleep as a teen in school, eating,at computers, in cars during conversations... My parents took me to a doctor and they said I was just a bored teenager with no enthusiasm. I went to college and got by on NoDoz pills... Didn't work. So then when I had that accident for the third time...I knew I had to do something. Got checked and FINALLY diagnosed. It changed everything I can't drive when I do...its a chance that I don't get caught Cuz I have my kids with me... I've learned to control it in diff. Ways.
I like your blog I now know I'm not alone.
Elizabeth Gonzalez, I'm so sorry for not replying to your comment sooner. I have neglected this blog for way too long and hope to get back to it this month and keep it updated.
Nope, u are definitely not alone! I hope you have found some of the great online communities and blogs to check out.
Thanks for reading and your comment too!
Go easy,
Ja
I was always falling asleep in class. Always for some reason asleep. My dad would yell and threaten to punch me if I fell asleep in his car again. I was diagnosed 4 years ago, now I'm 24 and realizing that because of my predisposition to Diabetes and other illnesses, my narcolepsy just made things a whole lot worse. My health is declining, and I'm feeling like absolute hell emotionally, mentally, and physically. I've been sick coughing up blood for the last six days and realized later that because you need rest to help your immune system, I'm getting weaker. So in all honesty, now because of it, the odds of me dying before either of my parents are realistic. No cure, medicine isn't working, and depression is way up. To those of you who have just gotten this, I would recommend you start at it early.
I know I'm quite late, but I'm sure there's still others looking for answer who will click on this blog, so here's my story. I'm 23, married, unemployed due to my health. I rely on my husband quite a bit for financial support, among other things. I worked for about 4 years before my health forced me to stay home. Over my childhood, I developed several health issues, which progressed and evolved as I aged. I have about 20 migraine days each month, occasional rheumatoid arthritis flare-ups, occasional fibromyalgia flare-ups if I'm very stressed,and of course Narcolepsy. The most problematic symptoms are fragmented sleep and cataplexy. It's very difficult to be productive, focused, alert or motivated during the day. It takes me about an hour or so to fall asleep, then I'm awake every half hour or so, this goes on for 6-7 hours. Napping is hard to do as well due to sleep paralysis, and I'm also very sensitive to sensory stimulation while sleeping, so if a fan is on in the room, it's MUCH harder to sleep. Not sure if this is part of my illness or just my predisposition. Naps are also very difficult to wake fully from. Often, it will leave me more groggy and trigger a cataplexy episode. Pushing through my symptoms makes them worse, so I just do what I can around the house and take care of my husband after work. Evidently there's no cure for Narcolepsy, but I beg to differ. There's always a cure, we just need to know the root cause first. I have recently realized my health issues are directly connected to my emotional/mental state, and my ailments began after experiencing childhood trauma;sexual abuse, excessive/unnecessary corperal punishment. I could be wrong of course, but I believe these traumas are my root cause to my health problems. It's a slow process, but I have faith things will get better and I will heal my mind, in turn healing much of my body. Healthy diet, enough exercise, and support of loved ones has been crucial to my treatment. I have gone through a lot, and I mean a lot, it has not been easy, and I don't expect it to get easier yet, but things happen for a reason and it's partly made me who I am today. Bless all, I hope this helps someone gain more understand and perspective.
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