Thinking about having a baby while also managing a chronic migraine disorder? You’re definitely not alone. This is a fear for many women our age who find themselves deciding what their future should hold as far as TTC with chronic migraine. I am personally one of them, and I’ve struggled not only with the decision to have kids, but also with two years of infertility and early pregnancy loss.
How Do I Know If I’m Ready for Pregnancy If I’m Also Managing Migraine?
This is a tough question that I asked myself many times when my chronic vestibular migraine began. I had just turned 30 and was newly married, but a plan to have children wasn’t far off. We were on top of the world until I returned from a trip to Asia and suffered from odd symptoms such as dizziness, and the feeling like I was walking on marshmallows or that I was moving when my car was parked. Everything progressed to the point where I could no longer drive, and could hardly walk. If I felt constantly drunk, how on earth could I expect my body to carry a baby successfully?
At the time, I was worried about larger issues like a brain tumor and all baby making plans got put on hold until I finally got my diagnosis of vestibular migraine. When I met with my neurologist, Dr. Beh from UTSW, he laid out a plan for me to get my migraines under control. We could try many different types of medications that are commonly prescribed for migraine prevention - beta blockers, antidepressants, and anticonvulsants.
My Treatment Plan for Vestibular Migraine & Pregnancy
It was then I stopped and thought - “what happens if I try to have a baby soon? Can I be on these medications?”. Dr. Beh then recommended a treatment plan that would be fairly easy for me to adjust to pregnancy. I started with a benzodiazepine to help calm my brain, but it was one that I could not continue daily during pregnancy. However, with a low dose, it was expected I would just be on it to help short term and could easily wean off to start trying.
We also began with a beta blocker I wrote a post about earlier this year. With Timolol eye drops, I was able to take a low dose of the medication, and it was also a treatment that was approved by my OB. We hit natural treatments really hard - I started magnesium, riboflavin, and CoQ10 as well as the Heal Your Headache low tyramine migraine diet that’s endorsed by Johns Hopkins.
Consulting with My OBGYN
After a few months of being on my vestibular migraine treatment plan, I was still suffering from daily dizziness, but it wasn’t nearly as debilitating as it had been. I felt comfortable to at least start thinking about trying to conceive. It was then I made a pre-conception appointment with my OBGYN to talk about how to proceed with everything.
I brought all my supplements and medications I was taking to my appointment, as well as a list of things we would discuss.
- What if my VM gets way worse with pregnancy?
- Is there anything I can take during pregnancy if it does get worse?
- Can I continue a migraine diet during pregnancy?
The Rule of Threes
Both my neurologist and my OBGYN told me that there’s no way to tell how your body will react when it comes to pregnancy and migraine. They explained that there seems to be a rule of threes - where ⅓rd of women actually get better, ⅓rd get worse, and ⅓rd appear to stay the same. Dr. Beh’s nurse practitioner, who also sees multiple sclerosis patients, said they often see women improve, especially in their 2nd and 3rd trimester. Occasionally it can even push some patients into remission. This gave me a little bit of hope that I could take my chances and perhaps end up as one of the lucky ones.
One thing that did make me feel better was that my OB was actually thrilled with my migraine diet. Because it's limited on additives and pushes you to eat whole, fresh foods, it's an ideal diet for pregnancy, assuming you're not placing additional limitations on yourself. If you do have additional restrictions, it's best to consult with your doctor as well as a registered dietician to see what the best plan is for you.
Migraine Medications and Pregnancy
My OB and I set a plan that I could take the Timolol drops while TTC and throughout pregnancy as needed. She also recommended that I could do magnesium IV’s throughout the pregnancy if things got to be really bad. I could also take Tylenol as needed and if things got worse, we could discuss medication.
I was actually surprised by how laid back my OB was about taking medication during pregnancy. Her whole stance was that sometimes it’s completely necessary to make sure the mom has a good quality of life. You have to weigh the positives and negatives of potential for birth defects with the overall health of the mother. She had many patients who suffered from debilitating chronic illnesses, like epilepsy, who needed medication to avoid seizures. It was more important to the overall health of their baby that this was controlled during the pregnancy.
She held my hand and assured me that out of the thousands of babies she had delivered, not one had a serious birth defect from a mom who needed medication to handle her chronic illness while pregnant.
Coming Off Birth Control
I held onto that positivity in my heart - telling myself that maybe I would be one of those women who go into remission and that at the worst case scenario, my doctor wouldn’t let me suffer. Between both physicians, I could put a plan in place if things went horribly wrong. That new year, I decided to come off birth control, about 10 months after my chronic vestibular migraine began. Keep in mind that I didn’t even get a diagnosis till almost 6 months in, so it was left untreated for a very long time.
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I had read the Heal Your Headache book by Dr. Buchholz and noticed he had a whole section on birth control and how it can contribute to headaches and migraine attacks months down the road. I knew this could be an opportunity to perhaps make a larger improvement in reducing my vestibular symptoms, which were still daily.
Maca and Chasteberry for Hormones and Fertility
Coming off birth control wasn’t easy and I immediately noticed an increase in symptoms. Two natural treatments that I believe helped me greatly was maca powder and chasteberry.
Maca is a relatively trendy supplement that comes ground and can be added to smoothies. It’s native to Peru and is used to enhance fertility and sex drive. It’s also been found to improve mood and reduce anxiety. And BONUS - it’s been shown to improve brain function and memory impairment, which is a symptom that hit me very hard with vestibular migraine.
Chasteberry (Vitex Agnus-Castus) has also been shown to boost fertility, but can also help with PMS symptoms. The hardest part of coming off birth control for me was an increase in those symptoms. Small studies have shown that chasteberry/vitex can help with increased anxiety, depression, and migraine attacks by reducing the levels of prolactin, a hormone synonymous with these symptoms.
Contemplating Migraine and Pregnancy
I still couldn’t avoid all the stories I heard about people getting worse after they had a baby. Or even that their vestibular migraine symptoms all started after having children. It’s quite terrifying to think I finally have this illness under control, yet I could just set fire to all of my progress by just getting pregnant.
The question I always came back to was “Is the risk of your migraine attacks getting worse a higher priority than not having a family?”. When I put it into that perspective, I knew that I was allowing migraine to control my life and my future. And this was the last thing I ever wanted.
I believe there's a difference between putting yourself first and letting chronic illness completely take over your life, but sometimes it's difficult to know where that line is. If you're seeing a neurologist and an OBGYN that you trust, being open and honest about your desires for the future can help them formulate the best treatment plan for your success. And having them provide that information can help us make an educated decision when we find ourselves conflicted.
Infertility & the MTHFR Gene
What I didn’t expect was to have issues with infertility and pregnancy loss. It took us almost a year to actually get pregnant and the excitement ended in complete heartbreak. I still had hope for us, that this was all just an unlucky event. But with more loss and consciously trying with a huge let down every month, we finally decided to see a reproductive endocrinologist.
So far our journey has been great, and I wish I would have sought out the help of an RE sooner. I even got confirmation that I have the MTHFR gene, which is very common in people with chronic conditions like migraine. MTHFR can also be responsible for consecutive pregnancy loss, especially if left untreated. Part of the reason is that it interferes with your absorption of folic acid, so most prenatal vitamins that just contain “folic acid” you’re not actually able to metabolize it properly.
The Importance of L-Methylfolate with MTHFR
Since folic acid is essential to prevent birth defects of a baby’s brain and spinal cord, it’s incredibly important to make sure you’re absorbing it. It’s recommended that those with this gene use L-methylfolate.
I recently switched from taking the Pure Encapsulations PreNatal Vitamin, which contains part Metafolin L-5 MTHF and part folic acid, to Mama Bird PreNatal vitamins, which contain strictly L-methylfolate. For some with migraine, the probiotic and "orange flavor" may be questionable, but they haven't bothered me one bit. Overall I'm feeling pretty good on it and my skin is GLOWING way more than it did on PE. And you know I love my Pure Encapsulations...
This brings up a whole new topic of managing migraine while taking fertility medications. Let me tell you, it hasn't been easy. I’ll be sharing more about the migraine and infertility link in future posts, but I hope you enjoyed this intro into all the thoughts and emotions that go into the decision to try to conceive with migraine.
Anonymous says
Hi Alicia, I just came across this blogpost and I'm so thankful for it. I'm so glad I'm not alone. I suffered a head trauma a few years ago (fainted in the shower, hit my head on the wall, dislocated my thumb). I developed BPPV soon after the trauma and horrible vertigo daily. I did epley maneuveurs and felt better. I got pregnant a month later. I suffered two miscarriages in the previous years and was elated I had a positive resilt. While initially in the pregnancy I was free of vertigo, started week 22 I got violent vertigo attacks. It was horribly scary. I Kept going to the ER, they gave me meclizine which did nothing. I suffered horrible vertigo the rest of my pregnancy and also during labor. My baby also came early at 34 weeks. It was horrible i could barely hold my baby with vertigo. Now my baby is one year old but I have developed migraine after child birth. My recent diagnosis is vestibular migraine. Its horrible to have this and a small baby. At times I cannot tend to my little one at all. I sometimes get headaches preceeding the vertigo or following, but not always. Eyes feel extermely tired, and pressure builds behind it. Feel dizzy and vertigoey all the time. I feel so sick all the time and in my job I'm on my computer the whole day. I'm really worried feel like I may never get better. After following your story I'm getting some ray of hope but not sure if I'm seeing the correct doctors. I'll try contact the doctors you saw, I'm in Chicago and have been seeing dizzy doc here.
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Alisha says
What an amazing post Alicia, thank you so much for sharing with vulnerability and honesty. I also appreciate you touching on a few things I hadn't really thought of like getting testing for the MTHFR Gene and that whole section. But also so important to talk with our doctors and know we have options... that's been my biggest stress reliever in just thinking of TTC (not yet). I'm looking forward to more of your posts and wishing you the best through this process. I know it's so tough and I can only imagine what you've already been through. Here for you if you ever need anything. Sending you all the love + light.
Alicia says
Thanks, Alisha. I'm so glad we can support each other through this! 🙂
Emily says
Thanks for sharing your story Alicia, I'm sure it resonates with so many of us!! Do you still take the Vitex? I found when I was TTC that it was a massive migraine trigger for me. So interesting (and annoying) how much of a role hormones play in this disorder.
Wishing you all the very best with your journey, it isn't easy but you are handling it so well.
Alicia says
That's super interesting! Have you ever tested it after your pregnancy? I don't still take the vitex, although I was just thinking I should since my PMS symptoms have been really bad since we've been going down this journey. I will say when I took it in my transition off BC I didn't notice it triggered me. Would be interesting to test it out again...but I really just keep up with the maca.
Emma says
Wow, our journeys are so similar. What you said about understanding drug use during pregnancy is so important. Until I got pregnant I was sure I was going to be shamed for even thinking about treating my disease while pregnant. But my OB said the same thing as yours. Finding the right doctor is so necessary. The mental and physical health of the mom is paramount to a safe pregnancy and sometimes that necessitates medication. Women are so much more than simply vessels. Thank you for sharing your story.
Alicia says
LOVE this! I think when the whole world is leaning more natural (which is a good thing, don't get me wrong), it places such a burden on us to be completely perfect. Plus I'm sure if the mom is much happier, that has to count for something, right!?
Stephanie Kelly says
Thanks for sharing your journey, and so sorry to hear about your loss and difficulty TTC.
I have 2 kids (8 yrs and 15 months), but had 3 miscarriages in between so I know how heartbreaking that is. My migraines were rare before getting pregnant, nonexistent during both pregnancies, and then unfortunately have gotten worse after kids. (I just turned 40 so it could be the age factor too.)
Best of luck to you. I so appreciate your blog. It has helped me a lot!
Alicia says
Thanks for your kind comments, Stephanie. I've had so many readers with a similar experience go on to have healthy pregnancies so hoping for the best. And I'm so glad the blog has helped too! I hope you continue to heal and get better everyday. 🙂
Anonymous says
I am in exactly the same boat. Desperately want to get pregnant, but worried about how I will handle it with vestibular migaraine. Plus I already lost a baby at 16 weeks. I hope everything works out well for you.
Alicia says
My heart aches for you. No one understands the hurt you feel after going through that and the fear that continues every time you try again. It seriously takes all the fun out of pregnancy that one should have. I hope you got a chance to read my post about being tired of making lemonade. I'm sure you can relate. I will say I've had so many people reach out who did feel better so there's hope for both of us!