Are you absolutely sure you have cataplaxy? If you are on ocassion suddenly losing muscular control or changing levels of physical and mental state this could actually be epilepsy. You need to get the diagnosis confirmed as if it is epilepsy there are likely medications which may help. Go back to your neurologist and ask them the same question you have posted here, as well as querying epilepsy. A good neurologist will not dismiss this suggestion and will either explain your situation better or agree to review the diagnosis.
Hi, my 19 yr old has a blocked vein, and now, after many tests, including a tilt table tests, and MSLT, shows she does not have narcolepsy.
However, until this onset, the Dr was certain, as am I after much research, that she is having cataplectic attacks. However, due to the fact, there are only 4 diagnosed cases in the world, he is changing his mind, and treating her something totally different.
I am looking for someone who has been diagnosed with cataplexy without narcolepsy.
We just want something to help her get her life back to some kind of normal.
I'm one of 7 people dignosed with cataplexy without narcolespy in Texas, so there is a hell of a lot more than 4 cases documented. But it took them 10 years to stop search and testing and most of all billing me to tell me that... why do doctor think this is so rare and impossible?