Narcolepsy Support Group
A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.
I just wondered if anyone could tell me if cataplexy gets worse over time? I used to find my face would drop when i laughed then my leg started goin limp but now i have to stop walking and like bend over. I havent actually completley 'gone' yet and im really scared as i see this as something that could happen im really independent with two young children. i have explained ity could happen but im more scared of how distressing it will be if i have an attack where i fall right down. they are only 4 and 5. I nearly fell asleep whilst driving today as well. My doctors are not supportive as they know nothing about this condition! Id be greatful for any info anyone has iv been reading the posts and some scare me lol.
It may sound scary, but it is more annoying than scary. My kids are 7, 10, and 12. They have been around me and witnessed many episodes. It doesn't scare them at all. They know it is just something mommy does.
They usually just look at me and go about their business.
I am surprised your doctors let you drive. Mine took my license away from me due to my Cataplexy. One of my triggers is bright light and flourescent lighting. If I was driving and another car had its headlights on, than bam out I would go.
In the end you cant risk your life or your families or even another child because you feel the need to drive. Sure its an inconvenience and makes life hard but how hard would it be to look your spouse in the face every day knowing you hurt someone you loved.
If your just falling asleep than your meds need adjusted. I heard that they wont take your license away if its just narcolepsy, as long as your being treated, but if cataplexy is at work than there will be trouble.
Best to see your doctor and be honest with him, you cant get help if they dont know the whole truth, and if your afraid about them taking away your license ask him if that is a possibility you need to know where you stand with your doctor as well.
Best of luck to you!
My neurologist told me it doesn't get worse. I tend to prefer to listen to people that actually have cataplexy as my experiences of doctors and their knowledge of narcolepsy are not good.
In my experience for the first few years age 14 onward the cataplexy was really bad, it seemed to tail off toward my 20's. Through my 20's it wasn't so bad, just a mild inconvenience. When I hit 30 it came back with a vengeance and for the first time in many years I needed medication. My neurologist does not have an explanation for this (nothing new there then) although it has been suggested to me that maybe stress levels were the cause. Who knows, it got a lot worse.
You should push your doctor/s to refer you to see a neurologist or a sleep disorder specialist so they can run tests and determine exactly what the problem is.
Hope this helps, good luck.
I always used to be such a go getter and now I am at a stop and I cant stand it.
Now here in the states getting disability is difficult to do. You have to jump through so many hoops its insane. Luckly for me my long term life insurance didnt want to pay for me so they hired an attourney to represent me. I also have to add....its humiliating having to go through it, I felt like such a looser but you have to do what you have to do in order to survive.
I wish you all the best on your journey
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