Pregnancy for a narcoleptic with cataplexy

By beckyb19 Latest Activity February 25 at 12:12 am Views 3,788


I am 30 years Old, married and hoping to start trying to have a baby soon. I currently take protriptiline 30mg a day to treat my catalplexy and 10 mg of ambien at night. Xyrem has worked for me but I seemed to have built up a tolerance to it so we switched back to my current meds. I also have the other symptoms: EDS, night terrors, and night hallucinations (big fun!)

I have toyed with the idea of switching to xyrem during my pregnancy but am still unsure about how safe it really is especially when weighing my risk of injury from cataplexy with the risks of the medicine. The only time I have not been on medicine was when the cataplexy first started, at that point I was having upwards of 20+ cataplexy attacks a day. My attacks are full body collapse and it takes around 10 minutes for me to fully recover and be strong enough to resume activities.

I would love to not be on bed rest for the pregnancy as I need to work to help my husband with income, plus how horrible will it be to be stuck at home for that long (one of us might not make it out alive) lol. I will do what I need to do in order to have a healthy baby and keep my marriage intact.

With all of that said, my questions are: what medications have you taken while pregnant? Has any one had such severe cataplexy that if you quit your meds, you would no longer be a functioning adult? What precautions have you taken when pregnant to make sure you and your baby are safe from cataplexy attacks? Did you find that your pregnancy balanced things out to help you function without medicine? How much did pregnancy impact your symptoms? I tend to lack motivation because of my EDS and worry abt it getting much worse with pregnancy. Also, was anyone able to be on bedrest for that long and maintain their sanity??

Any thoughts, advice and feedback would be much appreciated. We really want to make the very best decision for our future baby and to keep me healthy and safe while trying to protect her/him. Thank you!!

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