In this post I’m going to talk through some topics that specifically affect women with narcolepsy, so guys you can probably sit out of this one!
Modafinil & Contraception
The first thing i’d like to address is a pretty important one that an alarming number of women with narcolepsy seem to be unaware of: Modafinil can cause your birth control to be ineffective. Obviously this is an incredibly important thing to know as an unwanted pregnancy is hardly something that anyone wants to deal with (especially when you may have thought you were being safe) but many doctors seem to be forgetting to inform their patients of this crucial fact.
To clarify, this problem only affects hormonal contraception such as the pill, nuvaring, and hormonal patches or implants (containing either oestrogen or progesterone). I have heard that some women have chosen to opt for the IUD (mirena) as this is unaffected by this medication, but obviously you will have to talk about this with your doctor to see what options are viable for you. Many women take the pill for reasons other than contraception, and this will also affect what options are suitable.
For a more detailed discussion of this topic, have a read of this Narcolepsy UK article.
Narcolepsy & Menstrual Cycles
My next topic relating to women’s health is just a more general comment on how narcolepsy can be affected by your monthly cycles. As far as I know there have been no studies into the subject, but I have heard an overwhelming amount of anecdotal evidence from women with narcolepsy that their symptoms (mostly EDS and cataplexy) significantly worsen during their period. I would explain this as I would most aspects of narcoleptic tiredness: if it makes “normal” people tired, it will make a person with narcolepsy a lot more tired.
For me personally it usually changes my normal, manageable levels of tiredness into falling asleep so suddenly that I drop cups of tea on myself. It also noticeably worsens my cataplexy. I currently have a hormonal contraceptive implant and this has helped, but not solved the problem (I believe this is due to evening out my hormones a bit, but I couldn’t be sure!)
Pregnancy & Narcolepsy
And lastly, a little bit about pregnancy and narcolepsy, a topic that comes up time and time again on all of the narcolepsy groups that I’m part of. The biggest issue is that of medication. The long-term effects of stimulant medications such as dexamphetamine on an unborn child are currently unknown, and so expecting mothers really have to make a choice for themselves about what seems right for them. Doctors suggest that going medication-free is the most preferable option, however for many women nine months without medication is simply infeasible due to the extreme hypersomnia (and depression) that going without medication can cause. It is possible to decrease dosages to the absolute minimum and make sure that you get regular check-ups with your doctor to check that your baby is developing normally.
**EDIT: New research suggests that pregnant women should avoid modafinil while pregnant in order to prevent “serious harm to the fetus.”
Women with narcolepsy wishing to start trying for a baby should consult with their doctor about planning for the pregnancy first, as it can take time to wean off of certain medications. Suddenly stopping the use of anti-depressants can cause a temporary increase in cataplexy (which can be very dangerous for a pregnancy) and can have similar rebound effects in tiredness with dexamphetamine.
Even for people without narcolepsy, pregnancy can cause an increase in tiredness and make it more difficult to sleep, and so it is often even worse for narcoleptics. However, some narcoleptic mothers have said that being pregnant actually boosted their energy temporarily due to changes is hormones.
As for the actual birth, everything I’ve read seems encouraging. I’m just going to quote the findings of this study of clinicians who deal with narcoleptic mothers:
“The findings from our survey and literature review suggest that the perceived risks of narcolepsy medication during pregnancy to the mother and the fetus usually are overestimated, as the risk for teratogenic effects from narcolepsy medications in therapeutic doses is essentially nonexistent. However, the potential for rare complications during pregnancy and congenital abnormalities cannot be excluded. Most narcolepsy patients have vaginal delivery without complications. In rare cases patients had cataplexy that interfered with delivery, but if caesarian is required there appears to be no increased anaesthetic or surgical risks.”
To reiterate; pregnancy with narcolepsy can be tough but it is managable. It is all about deciding what is best for you personally, so be sure to work closely with you doctor to ensure the best possible treatment for you and your child.
For information on narcolepsy and pregnancy, check out this page from the National Sleep Foundation (USA), and I also really recommend reading this guest post on Julie Flygare’s blog as well as all of the comments for a lot of stories from other women with narcolepsy who have gone through pregnancy themselves.
Hope that has answered some of your questions. If you have any ideas about how to manage the monthly increase in symptoms, or stories of your experiences with narcolepsy and pregnancy, please leave a comment below. It’s really helpful for others to hear your stories!