I have recently been diagnosed with narcolepsy. For years, I have suffered from EDS muscle weakness that has become worse as I have aged (mid-40's). In the beginning, I blamed it all on being single and burning the candle at both ends (20's); then being a new parent (30's) and then being a single mom to a child with narcolepsy and a preteen (now 40's). I was told I have mild cataplexy. I am not sure what that feels like, but I get this situation like I am not able to walk, move or talk....like I feel as if I am suffocating and then it's like I pass out, but I don't pass out.....it's like I am awake but unable to really move around much. If I struggle against the feeling, my muscles in my arms and legs back and neck tense up and it can be very uncomfortable and it's very scary. After the episodes pass, I am very tired (like exhausted), my arms feel like they have lead hanging off them and it is a struggle to move them and I have trouble breathing --- like I can't get enough air. On top of all of this, I was also diagnosed with POTS, mild asthma and possibly hypothroidism.........soooooo if anyone out there has cataplexy, could they please tell me the body sensations they get before and after an episode. My 10 year old doesn't have cataplexy, so he can't really tell me............
I was diagnosed with narcolepsy just over a year ago. I do suffer from EDS however, my biggest problem is cataplexy. A lot of different things trigger it off for me but the main ones are shock ( a sudden noise like a door slamming or a sudden movement) and anger or excitement.
When I have an episode of cataplexy, I have different body sensations depending on the situation: sometimes, I just fall over (usually if the trigger is a sudden shock) then I can't move for a few minutes although I can hear and if someone opens my eyes for me, I can see too. Other times, the process is slower and it might not affect my whole body. In those cases, either my head suddenly feels like it weighs a ton or my legs or arms become weak and heavy. In any case my speech becomes very slurred and difficult to understand, I feel extreamly exausted physically, my thoughts become disjointed and my body movements become uncoordinated; in short, I appear to the unsuspecting eye like I have had a pint to many. The feeling of tiredness and the coordination problems last longer than the actual episode sometimes up to half an hour afterwards.
As a consequence of these episodes of cataplexy and the fact that most happen outside of my flat, I have mild agoraphobia ( a condition where the sufferer becomes anxious in environments that are unfamiliar or where he or she perceives that they have little control) and rarely leave my flat.
Anyways, I hope I have shed some light on your concerns although I would advise you to have a chat with your gp or even your child's narcolepsy specialist.
I have narcolepsy and cataplexy. The symtoms are usually different for every body. My cataplexy is usually triggered by laughter, surprise, or joy. My knees will give out and i fall over and cant control my muscles until ive calmed myself down. I wanted to comment on your kid having narcolepsy though. It is usually inhereted so if your child has it, its a good chance you do also. im surprised the doctor didnt ask if anybody else in your family has it. Anyway, there is a blood test they can do to see if you have the narc gene. You might still need to do a sleep test, but its a start and since your child has it, if you do have the gene they might just dx you with it.
My cataplexy is triggered by extreme emotion too. Usually when I'm laughing with my husband or very angry or frustrated. My joints feel weak and uncontrolled. Usually, my jaw chatters and my eyes get hazy around the edges. It can also be my knees when I'm walking around or my elbows (which I notice less)
There is not a narcolepsy gene. There is a chemical (orexin or hypocretin) responsible for wakefulness that narcoleptics lack, either from a congenital deformity or an immune response. It is not common for it to be genetic, but it is possible.
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