Hello, fellow Narkies. I haven't seen any recent posts regarding pregnancy and N/C or meds. If I've missed one by accident, sorry for bringing it up again. I just really need to hear from others who have been through what I'm going through.
I'm 33 yrs old, on 70mg of Vyvanse and 20mg of Lexapro a day for NwC. Diagnosed and being treated for 11 years. My boyfriend and I have been trying to get pregnant for 5 months now. I have weaned myself off the Lexapro, and in the process of weaning off Vyvanse. Per my neurologist, Vyvanse is a class C med, which is moderate risk for birth defects and complications. I hope to be off of all meds in the next 2 months, but will stop immediately if I become pregnant.
I'm terrified of my ability to function without stimulants, as I have a demanding full time job that I love. My neuro said that it's important for me to take scheduled power naps to compensate for no stimulants. Ladies, how did this work for you? What was the hardest part? Any advice? Anything you would have done differently?
I could really use some personal advice and REAL stories, warnings and words of encouragement, as everything I've been reading lately about the risks and failures of getting pregnant in your 30's, miscarriages, complications, birth defects, etc etc etc... along with the risks of my narcolepsy meds... and my fears of not being able to function off my meds... and the fact that despite the fact we've been doing everything right, we haven't gotten pregnant yet... I'm starting to really feel overwhelmed and scared. I'm not discouraged yet because it's only been 5 months of trying, and couples try for years, but I'm 33 and never been pregnant, which already puts me at a disadvantage.
Anyone have a success story to share? :)
I got pregnant at 34. Went off all meds. Worked full time til week 34. My company was well aware of my situation. I took a nap about 15 min after getting to work, then about 2.5 hours later, then again on my lunch break. And when I got home..... My cataplexy has always been pretty mild, so while it was present without meds, it wasn't really a problem. I'm 42 now and really want another one! But, I'm probably crazy! I know plenty of ppl do it, but with narcolepsy? Probably not!! Ask your neurologist if he's heard of something called EHT and if so, if that is something you could take while pregnant. It's a brain supplement and I've been hearing from almost everyone I know taking it that increased energy and better night's sleep are things that started happening for them pretty quickly. I can send you an ingredient list if you want. At any rate, I don't think 33 is too old! Also, if you don't have an app that calculates ovulation, Ovia is a free one that shows the best days to try to conceive
I stopped all med at 27 before I got pg with my first son. I actually did very well during pregnancy. I hated the side effects of med so I never took them again. I have 3 sons now, age 10, 8 and 6. I worked full time through all my pregnancies and still do, med free. It is not perfect, but I am one of the lucky ones who had a lot of support. My kids so far are n-free and have lived all their lives with a sleepy mommy, so it is their normal.
I stopped my stims and stayed on Xyrem. Took me about 5 months to get pregnant once we started trying, and I'm 31. Don't sweat it. My doc said it takes the average couple about a year to conceive. Wish I had more advice about being pregnant, med-free, and working, but it was not a possibility for me. Hope you are able to work it out, though!!
I know for me. Pregnancy alone was trying as causes tiredness in the first trimester especially. I guess my best thoughts would be weighing risks vs benefits. I see so many different thoughts with docs on drugs and pregnancy. My daughters nuero thought best she stay on her seizure med through pregnancy. Family do thought she should come off. As a nurse I fully agree with her neuro as a seizure could harm the baby let alone potential for physical accident. Even thought it is not a daily med. Pregnant women take phenergan all the time which is a cat C drug. Speak to your neuro again and tell him of these concerns.A Cat event involving a fall is unsafe for you and baby. Having to leave your job because you can't stay awake causes much stress. Maybe your neuro could speak with your Obgyn and come up with a plan that will help keep you awake, employed . Free from injury yet as safe as baby and you can be. Congrats in advance
I stopped my meds including vyvance the day I found out that I was pregnant and the first few weeks were to ugh but then it seemed to get easier. Don't get me wrong, I was tired, but not as tired as I imagined I'd be without the meds. My doctor said the hormones may have helped somehow. Like another post said - my last few weeks were a little tougher too. I think the hardest part is now that I've had the baby (11 weeks today) and am exclusively breastfeeding so still off meds. Taking care of him as well as myself can be really exhausting at times but somehow I'm still plowing through. A good support system will definitely help you!
I have NwC and I got off all my meds before we started trying to get pregnant each time. With my first pregnancy (my girl) my symptoms seemed a little better, and my cataplexy went away, until I stopped breastfeeding, and then it came back. However, for my second pregnancy (my boy), my symptoms did not get better, and I had cataplexy the whole time.
If your on Vyvance and get pregnant I don't think you should quit taking your Vyance cold turkey. It would be more detrimental to the fetus than if you take the medications. It would likely put you and the baby in withdraw. Another point to factor in is do the benefits of the medication outweigh the risk. I have N now but didn't during my preganacies. I did however have bipolar disorder and the risk of what may happen to fetus outweighed what would happened to me if I d/c the medication. Preganncy may make it so you need more medication to control your symptoms. You say you have Catapletsy as well, well if you fall asleep while your driving doesn't really matter what medications you were on or not taking to make it safer for the baby. It my opinion it would be more dangerous to d/c all your meds. Think about the full spectrum, your job, you're ability to take care of your bouncing bundle of joy. Sorry to be so blunt. I was an using addict as well when I got pregnant along with the bipolar disorder. I was addicted to pain pills. Pregnancy did kick my ass into getting treatment on my own. It opened my eyes, to what I wasn't able to see before. But like I said before. I was on medications to treat opiate addiction, because going cold turkey was not in the best interest of the baby/ I am now clean 5+ years. I did have a healthy baby girl, who amazes me every day.

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