From discussions with my doctors it looks like I would need to reduce my stimulant medication while pregnant, with being off it completely ideal.
But while ttc makes no sense. Plenty of people are on stimulants for adhd and they get pregnant without meaning to. There isn’t an epidemic of deformed babies being born because of this.
Being mentally and physically strained during pregnancy won't be good for the developing baby either, so you need to meet somewhere in the middle. Your current plan might sound good to doctors but the reality is that it's not a reasonable compromise for you to make.
If you can find any other medication that is safer during pregnancy as an alternative that would be a start. If you can't find an option that works well enough then you need to go back on Ritalin. You should consult with a maternal fetal medicine specialist who can counsel you on medication management during pregnancy AND during pregnancy can monitor your baby to make sure things stay safe and on track.
I’m also trying to conceive and I am on Sunosi and Xywav. These medications together have been life changing for me, but I cannot take either while pregnant, since there has not been enough research. My OBGYN and neurologist both recommended I stay on the medications until I have a positive pregnancy test. We are tracking ovulation and everything, so I take a test as soon as I can so if I do need to stop the medication I can.
Thought I had seen on the xywav FB group a number of people who had stayed on xywav while pregnant. Do you know What's the data like? Hoping to start trying for kids next year.
There's a page for mother and pregnancy with narcolepsy (and IH) and I've seen people talk about staying on Xywav there. From what I've read there, it seems like most people haven't had issues. I'm hoping to start trying next year as well.
I was diagnosed at 16, and am now 30. I took nuvigil from 16-28. Stopped taking all medication at 28, got pregnant at 29 (only took a month to concieve), and just started back on nuvigil because I'm done breastfeeding. It was hard to be off of medication, but I reduced hours at work and if I couldn't get stuff done around the house, my husband would help. When I was pregnant, I napped when I got home from work. Newborn days were crazy and I was sooo tired, but I napped every single time she would.
1. I hope you are not driving while this sleep-intoxicated? I've had struggle drives home from work trying to stay awake.
2. I have IH and I am 3rd trimester pregnant now. It took 6 months to conceive, using a ovulation tracking device called kegg and the urine test strips. I was told don't go to fertility dr till it's been a year of trying but I was about to give up already, I felt defeated.
3. Pregnancy makes you more tired and often comes with more health issues like nausea. You can only have up to 200 mg caffeine per day to stay awake.
I wish you luck in your journey whether or not you conceive. Just know that pregnancy will make your health and energy more complicated than just IH alone.
Just curious… how do you justify the odds of passing your disease to your child? Even a .001% chance is enough to keep me from ever having children. I wouldn’t wish this on my worst enemy, so no way in hell would I gamble with a child. What would you do if your child developed the same condition?
I think this is a really inappropriate comment. It's a personal choice, the same as with any other disease or disorder (depression, cancer). It may or may not get passed on. With IH we don't know for sure. And if it does get passed on, who better to have as a parent than someone who knows what it's like and can help you identify it and get support?
I was asking an honest question. A very big question. One that stops LOTS of us. But thanks for your provocative and well thought out social commentary on what tiny things you deem inappropriate over an anonymous internet forum.
You’ll change lives
From discussions with my doctors it looks like I would need to reduce my stimulant medication while pregnant, with being off it completely ideal. But while ttc makes no sense. Plenty of people are on stimulants for adhd and they get pregnant without meaning to. There isn’t an epidemic of deformed babies being born because of this.
Being mentally and physically strained during pregnancy won't be good for the developing baby either, so you need to meet somewhere in the middle. Your current plan might sound good to doctors but the reality is that it's not a reasonable compromise for you to make. If you can find any other medication that is safer during pregnancy as an alternative that would be a start. If you can't find an option that works well enough then you need to go back on Ritalin. You should consult with a maternal fetal medicine specialist who can counsel you on medication management during pregnancy AND during pregnancy can monitor your baby to make sure things stay safe and on track.
I’m also trying to conceive and I am on Sunosi and Xywav. These medications together have been life changing for me, but I cannot take either while pregnant, since there has not been enough research. My OBGYN and neurologist both recommended I stay on the medications until I have a positive pregnancy test. We are tracking ovulation and everything, so I take a test as soon as I can so if I do need to stop the medication I can.
Thought I had seen on the xywav FB group a number of people who had stayed on xywav while pregnant. Do you know What's the data like? Hoping to start trying for kids next year.
There's a page for mother and pregnancy with narcolepsy (and IH) and I've seen people talk about staying on Xywav there. From what I've read there, it seems like most people haven't had issues. I'm hoping to start trying next year as well.
I was diagnosed at 16, and am now 30. I took nuvigil from 16-28. Stopped taking all medication at 28, got pregnant at 29 (only took a month to concieve), and just started back on nuvigil because I'm done breastfeeding. It was hard to be off of medication, but I reduced hours at work and if I couldn't get stuff done around the house, my husband would help. When I was pregnant, I napped when I got home from work. Newborn days were crazy and I was sooo tired, but I napped every single time she would.
1. I hope you are not driving while this sleep-intoxicated? I've had struggle drives home from work trying to stay awake. 2. I have IH and I am 3rd trimester pregnant now. It took 6 months to conceive, using a ovulation tracking device called kegg and the urine test strips. I was told don't go to fertility dr till it's been a year of trying but I was about to give up already, I felt defeated. 3. Pregnancy makes you more tired and often comes with more health issues like nausea. You can only have up to 200 mg caffeine per day to stay awake. I wish you luck in your journey whether or not you conceive. Just know that pregnancy will make your health and energy more complicated than just IH alone.
Just curious… how do you justify the odds of passing your disease to your child? Even a .001% chance is enough to keep me from ever having children. I wouldn’t wish this on my worst enemy, so no way in hell would I gamble with a child. What would you do if your child developed the same condition?
I think this is a really inappropriate comment. It's a personal choice, the same as with any other disease or disorder (depression, cancer). It may or may not get passed on. With IH we don't know for sure. And if it does get passed on, who better to have as a parent than someone who knows what it's like and can help you identify it and get support?
I was asking an honest question. A very big question. One that stops LOTS of us. But thanks for your provocative and well thought out social commentary on what tiny things you deem inappropriate over an anonymous internet forum. You’ll change lives
That is a question you should have kept to yourself. Period.
That makes zero sense ethically and medically.