6.6 Pregnancy and Motherhood with Trigeminal Neuralgia

 

By Ally Kubik, MEd, MS, BCBA (USA)

Although many women dream of having children, nobody dreams of having to navigate pregnancy and motherhood with facial pain. I am here to tell you that it is possible. It may look different, but it is possible. I was diagnosed with facial pain at the age of 13 years. As I began to navigate my life with pain, I feared two things: that I would never be able to get married and that I would never be able to have children of my own. Fast forward 13 years from my diagnosis, and I got married. Eighteen years after my diagnosis, I had my first child.

My experience with pregnancy and facial pain may look different than yours. There is no right answer. My experience with facial pain has taught me that, if one thing does not work, try, and try again. My experience with motherhood is that, once you think you have things figured out, you don’t. Although I have had multiple surgeries over the years and my pain is better, I am not pain-free and still require medication daily. My husband has been with me through some of my worst and best times with facial pain. For context, our wedding vows included the challenges of facial pain. We knew that starting a family would be different for us. Before we were ready to have children, I asked my obstetrician about what this process might be like. He referred me to a consultation with a high-risk obstetrician. The high-risk obstetrician shared that additional ultrasounds and tests would need to be done once I was pregnant. This was a scary, but it was also comforting to know that the team would be monitoring my baby frequently. The doctor continued to explain that one of the three medications I was taking was not safe for conception or pregnancy. Next, I visited my pain management doctor, and we went to the drawing board. I opted to wean off the medication without replacing it with either a higher dose of one of my other medications or another medication altogether. I was able to successfully titrate off the medication that was not safe for pregnancy.

Pregnancy with medication is a difficult pill to swallow. (No pun intended.) When my high-risk obstetrician asked me if coming off all medication was an option for me, I explained that it was not. I did not want to risk my pain flaring uncontrollably during pregnancy. In fact, I have never been off medication completely in the 20+ years I have been living with facial pain. Yet, every woman and pregnancy is different. I have spoken with women with facial pain who were able to stop taking all medications while pregnant. It is difficult for doctors to know what is safest. Often, their only guidance is from animal studies. Hearing this scared me. My high-risk obstetrician found some human case studies, but they were limited to women reporting what medications they took and how their child was developing. There was no scientific study.

When I met with the high-risk obstetrician, I asked what I could do if my pain flared during pregnancy. I have a specific regimen of medications that I take if my pain becomes out of control when I am not pregnant. My high-risk obstetrician and I developed a plan for each trimester because certain medications were safer later in pregnancy. Having a plan beforehand was comforting. I knew that I could carry out the plan if necessary. Some of the questions that are important for a pregnant person to ask at their high- risk obstetrician appointment are as follows:

• Are the medications I am on safe for conception and/or pregnancy?
• What does the research say about this medication during pregnancy?
• What extra will you do to monitor my baby?
• What can I do if my pain flares? Do I need to check with you before I take medication?

Often, people ask what their pain will be like during and after pregnancy? For me, my pain was not much different during pregnancy than at other times. Managing pregnancy side effects was key, especially in the first trimester. With my first pregnancy, I was extremely nauseated for much of the first and third trimesters. Vomiting is a trigger for my facial pain, so keeping that at bay was a priority. Determining what would alleviate the nausea and other normal pregnancy concerns often took trial and error. Making sure I was drinking enough water and getting enough sleep was of supreme importance. Being overly tired is a pain trigger for me. Rest and paying close attention to what my body was telling me was paramount.

What about the actual birthing process? My pain management doctor had suggested that I opt for a C-section so that I was not risking a pain flare while “pushing.” I adamantly explained that I had had enough surgery in my life and that I was going to do everything in my power to avoid a voluntary C-section. Prior to my delivery, I created a “cheat sheet” for the labor and delivery staff. It contained a list of my medications, what my pain felt like, my daily pain level, the names and contact information of my pain management doctor and facial pain surgeon, and my pain triggers. (Cold on my face and mouth is a trigger, so don’t even offer me ice chips or an ice pack!) I also included the “cocktail” of rescue medications I take if I have a major pain flare. In addition, I added my surgical history, noting that opioid-based medications do not work. Handing the staff this paper when I walked in to deliver was extremely helpful so that everyone was on the same page. When I was ready to push, we requested that my rescue medications be in the delivery room so that there was zero delay if I needed them. During both of my deliveries, I did not feel like my face pain was any worse than normal.

What about my baby? When I was delivering my first, neonatal intensive care unit (NICU) staff were present because my child had been exposed to medication in utero. The NICU staff checked out my baby as soon as he was born. For my second child, the NICU staff was on-call, not present. My labor was much shorter. It was important to my husband and me that delivery was at a hospital with a NICU, just in case something adverse had happened. We did not want to be separated if there was an issue. Thankfully, there was no need for the NICU staff, but I was thankful that they were there.

Breastfeeding was important to me. Not all medications are safe for breastfeeding, and not everyone wants to breastfeed. Your child’s pediatrician is the best person to ask. Check prior to delivery. There are also websites that can be checked. One, Infant Risk Center (https://www.infantrisk.com/), is a great resource.

Regardless of whether you choose to breastfeed, babies will wake frequently in their early months. This is difficult for someone like me, whose triggers include sleep deprivation and schedule changes. I vividly remember one early morning when I was just gripping the rocker as my son nursed because my face pain was so bad. I thought that it was all going to go downhill from there. I told my husband that I needed to get some sleep that day. We made it happen, and my pain levels retreated. Juggling a new baby is hard; juggling a new baby while experiencing facial pain is even more difficult. I took the new experience with the same attitude: Advocate and rely on your supporters. If someone needs to watch the baby so you can sleep, that needs to happen. If you have to take extra medication, take it. There were a handful of times when I did need to take extra medication, but a quick call to my child’s pediatrician (while I was still nursing) confirmed that it was okay or explained how I should feed my child. I try to remember that I cannot take care of others if I am not taking care of myself. I am terrible at following this advice, even though it sounds helpful.

Pregnancy and motherhood are journeys. No two journeys will look the same. No two pregnancies are the same. The important takeaway from my story is that, if your dream is to have children, you can and should.