Most, if not all of the research I have read suggests that symptoms of N+C do not change or worsen over time. I beg to differ! Obviously these articles and studies have not been written by someone who has narcolepsy.
In my own personal experience I can tell you that indeed cataplexy can worsen over time. What was once just weak knees, slack jaw, and wobble neck (for over ten years!), has now made its grand entrance as full body attacks. However, with this new severity has also come an increased body awareness that I rather cherish. I can feel an attack coming, and sometimes I can even "stop" them from progressing to full body attacks. It's as if I am tapping into the intracellular functionings of my body, and either flipping the switch to stop, or preparing for the inevitable collapse. Whatever the end result, the body awareness that precedes a cataplexy event, is deafening.
Narcolepsy on the other hand, seems to wax and wane like the phases of the moon. Some days are good, some days are bad. Most women also note that N symptoms change with their menstual cycle. Whatever the case, there are indeed changes in N+C, it is not constant.
What causes these changes? Stress, life events, medicine, work schedule, child bearing and rearing, diet & nutrition (or lack there of), hormones, exercise, trauma etc. The list goes on and on. We don't know and we don't have answers. Our bodies give us cues, we just need to listen.
Why is this false assumption so readily stated on the majority of narcolepsy information? I have no idea. I think I'm going to have to conduct a little research study of my own to disprove these inaccurate suspicions! ;-)
Cataplexy for me occurred the most often and severe between the age of 35yrs to 45yrs. I was on ritalin and tofranil. I had 3 to attacks every day. Then it started tapering off to maybe 5 or 6 attacks per week. When I was 54yrs old, I went thru the modafinil trials and it was horrible. I lasted 9 months and just couldn't take it anymore because the tiredness I felt was 500 times worse than usual. Then the doc gave me dsysoxin prescription. I am now 74yrs.old and this has helped better than anything else. I stopped taking it twice for a year each time. But had very foggy brain, lethargy, more cataplexy attacks, etc. I have tried many, many non drug ways to be able to live with N. One thing that really helped a lot was to totally get rid of wheat in my diet. I followed this for a year but fell off my diet at Christmas time and I am having a hard time getting back on it. Anyways, my point is that the cataplexy seems to have lessened as I got older. I can even go a couple of weeks without having one. I think I have had N since I was 16yrs. but wasn't diagnosed until I was 35yrs. Sorry, for rambling on.
ReplyDeleteThank you for your comment, it wasn't rambling at all! It is nice to hear from an older generation as to what the future may hold in regards to symptoms of N+C.
DeleteGlad to hear your cataplexy has eased up.
Health & Blessings- Hilary