Severe cataplexy


I just found this site a few weeks ago and think it is great. My cataplexy is not triggered. I am taking effexor and experience attacks even when I am at home by myself These episodes lasts a good 20 minutes and always include hallucinations.

I would love to speak with someone who experiences these prolonged attacks.

Thanks--Margie 65--diagnose 12 years ago

Margie I also have severe cataplexy with sudden drop attacks.I was one of the people chosen for xyrem trail study,13 years ago.I was having a lot ,the tasting showed I was having sometimes 48 an hour. It took years with treatment not to have so many.Xyrem works , my last surgery they took me of xyrem for one night. The next day after surgery I stertad to have a lot for no reason,like before.Today with xyrem I have very few although sometimes I can feel them slightly my hands shake or my mouth quivers .When I look at my hand and arms you can’t see them shake,I can just feel it.I still have some that make me fall to the ground without warning but I have to have over done it that day .My biggest trigger is laughing or doing things that are fun. This stopped me from doing things when I first found out what was wrong with me,as time went on I realized I did more things when they were bad and didn’t know what was wrong with me. I tell people I with what could happen so they are not frighten and I am back to swimming ,biking,etc. My Doctor at the clinic told me about another patient ,she was 64 years old and was in a wheel chair because she had so many cataplexy.with the use of xyrem she is walking again.There is hope keep on fighting. My life is different now ,but I am happy.

I also have severe cataplexy, ranging from slight facial twitches to full blow drops to the floor. Laughing is the fastest trigger for me but I’ve found that I can recover or hide it efficiently. Where anger or sorrow, leads to longer episodes that I difficult to pull myself out of. My 7yr old son is more used to it but my 4yr old screams and shakes me, tries to get me to hold him. He will learn like his brother in time…but I don’t wish that on any mother to have to lay there conscience yet unable to comfort.

Can you give your 4 year old a plan, “what to do when mommy drops” so that instead of panicking he has something specific to do, like cuddle up to you and sing a particular song, something really long like ‘One man went to mow, went to mow a meadow…’ and tell him he has to see how far he can go with the song before you are able to give him a cuddle back? Maybe if it has a play element to it an episode might be less frightening for him.
Perhaps your 7 year old could do the same to help his little brother. Just a thought. It’s an awful situation to be in.
Christina, can you introduce this point as a new discussion which I can then share with all members many of whom have brought up/are bringing up small children and must know the problem.

I’m new here and not quite sure how to ‘open a discussion’. I barely could find the discussion page. Lol. I will figure it out, give me a little time to scratch my head about it. My littlest boy is behind learning wise as compared to other kids his age. He is a ma ma’s boy bad! having him around me during an episode unfortunately provokes me worse. my 7yr old is my hero(: he helps with his brother a lot. I muster strength to say I’m sick and to go get his cars to play with. He also likes to rub his satin blanket on my face sometimes during an attack, which calms me down. I love satin too! Lol. I don’t have very many attacks that severe anymore, I can tell when they are coming, so I usually have a few seconds to give instructions and sit down before I drop. Having a companion dog has been a life saver for me and my children.

Sorry Christina. Go to ‘Discussion’ on the purple menu bar. Thrn click on ‘+Add’ which is top right. Type in your question and scroll down to Add Discussion or Post Discussion - can’t remember which. Click on it and all done.

Fortunately I am not as savier as some of you and I hope and pray you find your answers that you seek. I deal more with the Narcolepsy side of things but I have had the occasional Cataplexy attack along with a Narcolepsy attack. Its like they go hand in hand sometimes. I also get the sleep paralysis when I’m sleep deprived. That’s when I get the most saver hilousinations and they suck. Have you kept a diary of your events, frequency, what you are doing or eating to see if there is a coronation between every day activities to see what the triggers are.

I have all 4 symptoms, sleep attacks, cataplexy, hallucinations and sleep paralysis. I’ve found that I tend to do much better on a extremely low carb/no sugar eating plan. Its hard enough staying awake after eating even am daily meals, carbs knock me out fast! Lol.