Hello…
I have been diagnosed with narcolepsy without cataplexy recently and i was wondring is it posaible that i could get worse by having cataplexy in the future? even though iam taking concerta 36 now
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Hey I also have narcolepsy without cataplexy, and yes narcolepsy is a progressive disease therfore it slowly gets worst Because I was diagnosed in 2009 and I was told in 2013 that my narcolepsy had progressed. How had it gotten worse well I am now more tired and fatigued than I use to be I’m taking more naps during the day my meds have changed 4 to 5 times and I also have developed insomnia which Mr doctor told me is a part of narcolepsy I am really irratated and I have developed depression and anxiety, which before it progressed I had none of these issues. I hope I answered your question and best wishes to you!
Than you for sharing…
I have another question, do you think that i should quit driving and get a driver since the time of progression of narcolepsy may differ? because i dont want to drive one day and have a sudden cataplexy or I’m just exaggerating
Thank you…
It's wise for you to consider this. If you normally drive and if you absolutely do not drive if you feel tired, you'll be safer and so will other drivers and pedestrians. Many people with narcolepsy drive if they are able to manage their symptoms. Some people with narcolepsy and cataplexy don't drive at all. Sometime there are laws that restrict drivers with medical conditions so ask your doctor if he has information on this. If not, it will be your decision.
With life in general each person with or without narcolepsy. Will come to a point they need to make a choice on what’s best for them and those around them. With that said… With narcolepsy it progress over time. If u don’t think it will be safe for u to keep driving. Then I would say get someone that can drive for u. But it’s your choice right now 
for u.
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While everyone is different, I've had symptoms (EDS and cataplexy) for 30+ years and still work full-time and drive locally practically every day. I know my triggers (such as eating carbs and my 4-hour "time limit" between down periods) and am cognizant of them before driving. If going out of town I usually am a passenger and reimburse for gas, etc. I'm not a doc, but I've not heard of cataplexy being part of a "progression" for someone who doesn't already have it without some type of serious event triggering it (like cancer treatment or immunizations). Furthermore, cataplexy doesn't have to prevent someone from living their life. For me, the effects of a typical "cataplexy moment" are primarily a pause in and/or slurred speech and noticeable slouch/possible trip if standing or walking; the potential threat of distracted driving (texting, eating, looking for an item not related to driving) is significantly higher than that of my typical cataplexy episode.
You and those around you best know your symptoms and triggers; I recommend keeping a diary (as possible...or consider an automated device to monitor episodes) to document symptoms as well as outside events that may influence them (such as another illness, stress, and/or lack of sleep). Our biases and fears often lead us to make rash decisions that we may regret later. If you choose to recruit a driver while you are still willing and safe to drive then you have just cut off a very significant degree of independence which is MUCH harder to REGAIN (particularly in a state that restricts privileges for us) than to maintain at the current level. If your circumstances changed (financial loss, move to a less populated area) and you did not have access to that labor pool and were not allowed to drive again then you would, literally, be stuck until alternate arrangements could be found and made, possibly for the rest of your life. I don't want to encourage unsafe habits, but it seems imprudent to stop driving now based on what MIGHT happen later...
Regardless of your situation, Good luck! I hope you are able to get some relief from symptoms and continue to improve for many years to come...
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Hi, can you explain what is "cataplexy"? Also, I didn't know that N. gets worse over time. Does it get worse with everyone? About driving. I almost wrecked the car 3 times while driving home with my sister one day. She was yelling at me to "pull over!" I looked at her, while driving, and said,"I just find." All the while I was totally asleep at the time and didn't know it. That was 3 months ago and the doctor said I couldn't drive for 3 months. Since then I've thought about it and I've decided that it is not safe for me to drive because one minute I was awake and the next I was asleep and didn't know it. Not knowing when that could happen again I don't think it's a good idea. Also, one more issue if someone would commit on is my sleep medicine is not working now. I lay awake for hours and it's not helping. I'm so werry (tired) I haven't slept for 2 going on 3 nights now. Could the norc. have gotten worse and the medication isn't working now?
I'm sorry, I can't seem to see Ladybug's reply on this string even when I follow the link from the Narc home page, so couldn't read more than the first few lines of her comment. Cataplexy (without using a formal resource) is the loss of muscle strength throughout the entire body, usually in response to emotion. I liken it to being a puppet whose puppeteer has let the strings slack a bit, then pulls them back up. Although I am conscious and can hear for all but the first second or so, I am unable to speak, stand, hold things, etc. because everything "loses power" momentarily; assuming it's an isolated incident I recover in about 2 seconds and catch myself. I've developed the coping skill of always leaning against a sturdy object/wall/doorway when talking to folks so it will catch me -- but if I'm walking in the open I often trip. Based on what I've read, there is no other illness that has this trait so if you have cataplexy you have narc. One theory for the cataplexy dynamic is that the brain goes into "sleep" mode where we (in theory...I walked in my sleep as a kid, occasionally start to act out a dream now, and talk in my sleep all the time) are not able to move and act out our dreams. I'm fortunate that my cataplexy episodes are brief, and I'm only powerless for a moment. Some folks appear to be passed out or perceived to be seizing, but are generally not in pain (unless they've been injured in the fall) or experiencing illness other than having no ability to control their muscles and being dead weight. I've read historical anecdotes of folks being pronounced dead and buried (even though the autonomic system continues to function normally, so they would have had a heartbeat, breathing would have been visible, etc.). As stated previously, most folks who don't have cataplexy early on will not develop it later...like I will not generally develop hypnogogic dreams. The "progression" is generally of the severity of existing symptoms; personally, I can't rule out complications from stress or other illness and simply the long-term effect of chronic sleep deprivation so I'm not convinced that it is so much a progression of the disease as the wearing down of the body (and mind) from years of the disease. For me, that's a VERY significant distinction...
thanks for the reply
thanks one more question. does insomnia and narc related and do you know how. because I am not sleeping and I'm so tired all the time
Punkin said:
Hey I also have narcolepsy without cataplexy, and yes narcolepsy is a progressive disease therfore it slowly gets worst Because I was diagnosed in 2009 and I was told in 2013 that my narcolepsy had progressed. How had it gotten worse well I am now more tired and fatigued than I use to be I'm taking more naps during the day my meds have changed 4 to 5 times and I also have developed insomnia which Mr doctor told me is a part of narcolepsy I am really irratated and I have developed depression and anxiety, which before it progressed I had none of these issues. I hope I answered your question and best wishes to you!
ladybug said:
Hi, can you explain what is "cataplexy"? Also, I didn't know that N. gets worse over time. Does it get worse with everyone? About driving. I almost wrecked the car 3 times while driving home with my sister one day. She was yelling at me to "pull over!" I looked at her, while driving, and said,"I just find." All the while I was totally asleep at the time and didn't know it. That was 3 months ago and the doctor said I couldn't drive for 3 months. Since then I've thought about it and I've decided that it is not safe for me to drive because one minute I was awake and the next I was asleep and didn't know it. Not knowing when that could happen again I don't think it's a good idea. Also, one more issue if someone would commit on is my sleep medicine is not working now. I lay awake for hours and it's not helping. I'm so werry (tired) I haven't slept for 2 going on 3 nights now. Could the norc. have gotten worse and the medication isn't working now?
Sounds like you have developed the insomnia part of narcolepsy, it’s very important that you talk to your doctor about this so they can help you sleep. I went through the same thing no sleep for 3 nights in a row and i went to see my doctor on day 4 and that is what he told me. He started me on a medication for it.
“Wearing out” happens and recovering is hard. With life’s demands and enticements I’ve wanted to do more. Respecting your own experience and what it tells you makes life workable, right? I think so, too.