Chronic migraine and motherhood is similar to the movie “Groundhog Day” where Bill Murray’s character was stuck reliving the same day over and over again. He woke up in his Bed and Breakfast to Sonny & Cher’s “I Got You Babe” on the clock radio every morning knowing that he was trapped in a time loop of which no one else was aware. That’s what it felt like when I woke up every morning suffering with chronic migraine which began when I got pregnant.
Migraine was nothing new to me. I’ve had episodic migraine (defined as less than 15 headache days per month), since I was 13. Excedrin Migraine and the puke-and-rally method successfully got me through high school, college, law school, and then my job as a lawyer. Episodic Migraine I could live with because it was part of my life to which I had adapted. But chronic migraine and motherhood, was another story.
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Unfortunately, chronic migraine with daily attacks meant that before I even opened my eyes, I already felt the tingling sensations in my temples. It served as a warning that the pain was planning to make an appearance, just like it did the day before. Upon getting out of bed, I felt extreme fatigue and weakness from the daily pain, medications, and vomiting. Usually by the time I reached the living room couch each morning, the tingling sensation morphed into something stronger. Even though I had come to expect the same thing every morning, I still felt disappointment and anger each time yet another migraine attack began. I needed a day off from pain! How could I possibly make it through another attack? But it didn’t matter how hard I pleaded, eventually the shuddering pain began to pulsate through my head, cruelly wrap around my eye and echo in the back of my head causing gnawing pain in my neck.
The abortive medications like Excedrin Migraine and Imitrex eventually stopped helping, but I was taking them anyway desperate for relief or hoping to take the edge off the pain. Everyday felt like I was stuck in a very bad dream I couldn’t wake up from. Or maybe it was my version of the Groundhog Day.
Chronic migraine and motherhood
What made this experience even more terrifying was that I was responsible for caring for my two babies. By the time I was stuck in a daily cycle, my son, Liam, was 2 years old and my daughter, Ella, was 6 months. Spending all day long with a crying baby and a rambunctious toddler while in a state of constant pain tested my sanity. I couldn’t lay down in a quiet dark room, which is what my body needed, because I had to take care of someone else’s needs instead. The days were a blur while I focused on feeding, changing diapers, singing songs, reading books, doing puzzles, while mostly in a fetal position on the floor. My husband came home to crying children and a crying wife. He cooked and cleaned and cared for the kids when I could not. While he could help me in the evenings, I was on my own during the day and in the middle of the night, breastfeeding my daughter and rocking her to sleep, all the while my head exploding. He was patient and kind and reassured me that once the pregnancies and breastfeeding were behind me I would go back to being myself.
Daily migraine attacks
After I gave birth to my youngest, Ella, I tried two different preventive medications, first Popranalol and then Topamax. I continued to experience daily pain. I contacted my headache specialist a few times a week, desperately pleading with her for help. We had exhausted all of my options which were safe while breastfeeding. Until then, that’s what kept me moving forward – the idea that once I was done with pregnancies and breastfeeding, I could try a different treatment plan that would finally end this 3 year nightmare which began after my first pregnancy.
I was having daily migraine attacks which meant I had no chance to recuperate from the hell migraine put my body through each and every day. Every morning I wished for bedtime and a chance for respite from the pain, yet every evening I dreaded falling asleep because it meant I would wake up to yet another day filled with pain. Every night I prayed asking God to help me because my kids deserve a mother. I was stuck in my own personal horror show. My own Groundhog Day. And I didn’t see a way out.
I called my boss at work and told him that I couldn’t come in to work anymore. At the time I was working a few mornings a week while my in-laws were kind enough to watch my kids. But by the time I managed to get to the office I spent all my time in the bathroom vomiting from head pain. As I talked to my boss, who is one of the kindest people I know, his only question was “How are you feeling emotionally?
Emotionally I was breaking. Physically I was already broken. I decided I had no choice but to stop breastfeeding my daughter in order to give other treatments a chance. I had enough pumped and stockpiled breast milk in a borrowed deep-freezer to last my daughter another 2 months. The fact that I felt guilty about stopping breastfeeding when my health was falling apart seems silly now. But mom guilt is real, my friends.
It got worse before it got better
Once I stopped breastfeeding, my headache specialist put me on a birth control pill to help regulate my hormones. I was so desperate and miserable that this new treatment plan felt like the light at the end of the tunnel. So when I started feeling worse –much, much worse–I didn’t think that the pill was to blame. Some specialists believe that taking a continuous combination birth control pill can reduce the frequency of menstrual migraine. And for some patients, they can! Others, like Dr. David Buchholz, in his Heal Your Headache book believe that the pill “often acts as a fuel, rather than a blanket, on the fire of migraine.” He clearly feels very strongly about this issue. In my case, Dr. Buchholz was right on the money. After a week on the pill I was experiencing 24/7 pain.
I was vomiting even more now, so much that my throat was bleeding. I have a vivid memory of walking down the narrow hall in our old house and holding onto walls because my legs could barely keep me upright. Every time I moved my head I felt as if something inside my head was shifting. I cried myself to sleep. I prayed to God. Thinking back to that stretch of time, I do not remember my kids. All I remember is being in pain. In the darkness. In despair. For the last three years I have waited for this moment: I was no longer pregnant and no longer breastfeeding, I was supposed to be getting relief. But instead I got worse and it broke me. Whether it was the constant pain, the hormones, or both, I felt like I could not emotionally handle life anymore. I was in a dark hole that I could not climb out of. I felt hopeless.
Help is on its way
My mom came to stay with me for a week. I remember her asking me if I needed her help and all I could do was cry. She took time off from work and came to take care of me and my kids. My mom took me to the appointment with my headache specialist who agreed that it was finally time for Botox. She wrote a letter to my insurance company outlining a whole gamut of preventive medications that I failed. I had to wait for the insurance company’s approval and the expected timeline for the actual procedure was three months out. Meanwhile, I truly did not know how I was going to make it until the following day. My doctor also recommended a chiropractor who worked in her office and a neurologist for nerve blocks. But the appointments for both were months out. She also suggested that I speak to my primary care physician about Lexapro (anti-anxiety/anti-depressant medication).
And yet I left defeated. So many options, but all were so far away that they did not help to relieve my anxiety. Having my mom with me was everything. She tried to convince me that I would not always stay this way and that we would find answers. Every time I looked at her, tears welled up in my eyes because I knew that she was afraid just as I was.
I trusted my gut and quit the birth control because I felt it was making me worse. I started Lexapro and I noticed that within a few days I finally stopped wanting to cry.
When my mom was not with me, my mother in law came to watch my kids so i could retreat to my dark bedroom and regain enough strength to be able to face the day. Then my sister came to stay with me from Philadelphia for a week. She’s a ray of sunshine in our family. Always seeing the positive side in any situation and she tried to fill my heart with positivity and optimism. She tried to get me to see the light and squeeze hope into my hopeless body drop-by-drop. I kept hearing that I won’t stay this way forever, but I didn’t believe her. No matter how much I wanted to, I truly believed that this was my life sentence; that I was going to be chained to my couch, home bound forever, not being able to care for my kids.
The turning point
It was through Facebook that I found support of the other migraine warriors. The turning point for me was joining Migraine Strong. I learned that my daily intake of Excedrin Migraine in addition to Imitrex, which I took to help me cope with my pain, was actually feeding my pain cycle. In fact, in addition to chronic migraine, I was also suffering from medication overuse headaches (a.k.a., rebound headaches). I read Heal Your Headache book by Dr. Buccholz and decided that it was time to end my rebound cycle. It was time to take control of migraine. And all of a sudden, just like that, hope was born within me.
I consulted with my headache specialist who agreed that my the hormone fluctuations were fueling my migraine, which has been exacerbated by the rebound headaches. She prescribed a Medrol steroid taper to help make the pain manageable during the attacks. I stopped all abortive medications which included Excedrin Migraine and Imitrex. My mom came back to stay with me to help me take care of my kids during the “detox” process. It was very difficult but we somehow got through it one day at a time.
I also began a migraine diet (Heal Your Headache). Well, really, my husband did – who had to learn how to cook with maybe ¼ of the ingredients he used to! I was getting enthusiastic telling my family about my discoveries. They were so happy that I sounded hopeful.
I was able to get all my appointments moved up by constantly checking for cancellations, like a telemarketer with a lead. I received Botox, occipital nerve blocks, and began chiropractic treatment. Things were lining up and for the first time, I felt like I was on the right path.
I was still getting migraine attacks, but I could not take any medications. The only way to escape the rebound cycle is to stop all acute medications. For how long? Nobody really has the magic number. I went without using medications during a migraine for approximately 5 months! This helped my cranky neurons to calm down and my brain heal.
Current migraine treatment plan
I am on two preventive medications, Botox, monthly Emgality, as needed nerve blocks. Supplement and meditation are also part of my routine, as well as the Migraine Strong treatment pie.
I still get migraine attacks although they are now episodic in frequency. Places with too much noise and stimulation trigger an attack, which is hard to avoid with little kids. I have not been to a movie theater in years. I have not drank alcohol in over 5 years which sometimes makes it hard to fit in when everyone knows that all moms love wine! When attending events with kids, I can only handle one a day. Every day, I’m cognizant of what I need to do to keep my mommy brain from becoming the migraine brain. And this week I learned that a simple cold with sinus inflammation could cause a week long migraine flare. And then, I could be doing everything right, and still get an attack, because migraine does not play fair.
Migraine is and likely will always be part of my life. Accepting that has been a large part of my healing process. But I am the one who is in control of the disease now. I have many pain free days which I spend with my kids (who are now 4 and 2.5) and husband. I can drive again with the kids to visit my family. I can go to Target – it’s really a magical place for moms! I can go out with friends. I can read books. I am grateful for every little task I can accomplish without assistance because it shows how far I’ve come. I am working again as a lawyer a few days a week while my kids are in pre-school. I became an active member of the Mom’s Club in our town and have met the most wonderful moms, who don’t seem to care that I can’t drink wine!
There Is Hope
And as Bill Murray’s character transformed into a better person and escaped Groundhog Day, I have too, escaped my Groundhog Day. I became a better version of myself in spite of and as a result of migraine. I joined the Migraine Strong team to help others find ways to control this crippling disease. There is hope. If anyone is proof of that, it’s me.
Photographs by Mayya Hyatt.
16 thoughts on “Surviving Chronic Migraine and Motherhood”
Just wondering how much topomax and amitriptyline you take.
Hi Lori, I take 100mg of Topamax and 10 mg of Amitriptyline. My understanding is that often it is better to add a low dose of a second preventive instead of starting a new one if you are not getting the desired effect. Thank you for reading.
Thank You for sharing. I am a new father and I will be the stay at home parent. I’ve had a bad migraine every day all day for the 3 weeks I’ve been home with our newborn. It’s not fun and I have all the feelings you expressed. And getting up 2-3 times a night and being tired all the time only makes them worse. I’ve had a few doses of Botox and 4 doses of Aimovig. I’ll likely stop with the Aimovig if this latest does doesn’t work and I’ll give Botox one more chance. No abortive meds work for me. I’ve just ordered the Cefaly machine to help prevent migraines as I’ve heard people have had some success with it.
FYI, I took 100 mg of amitryptaline at bedtime for about 18 years for tension headaches. I would say that it worked for the most part and it also serves as a great sleep aid. I decided to go off it after I developed migraines. I slowly went off of it last June. I was not prepared for the withdrawal issues that happened when I went to 0. I was miserable for 3 months. I couldn’t work. Without it in my system, the chemistry of my body was completely in shock. My taste buds have been completely altered (which is bad since I’m a chef!). My gastro intestinal system suffered as well. Most doctors do not warn you or even know about the problems that occur when you are on certain meds for a long time. I hope this information helps you.
Hi Eric, Congratulations on becoming a father. I am so sorry you are suffering during a time that’s meant to be joyful. How were you feeling 3 weeks before this migraine began? I’m wondering if the stress and/or sleepless nights could have triggered it or exacerbated it. Do you have a neurologist/headache specialist? Could you ask them to prescribe a steroid taper to see if it would break this recent cycle?
Have you ever tried a migraine diet?
Feel free to join our closed FB group and maybe other admins and members will have more ideas. Hang in there, Eric. Keep fighting.
Marina, what a beautiful story. Your strength and courage are inspiriting. I cried near the end, not because of your pain, but because of you triumph. Tears of joy for you. I was talking with a friend the other day discussing how far I am come since I am been diagnosed. I told her that I did not feel egotistical in saying that I felt I was pretty amazing to make it this far. I am more inspired by your story than I can express in words. You are simply amazing.
Hi Nancy!!!! Thank you SO much for your heartfelt comment. It is truly amazing what we go through. We should and we deserve to feel amazing about how far we’ve come. I believe every day is a progress in the right direction even still.
I hope my story reaches people who are really struggling and helps them realize that there is a way out, it’s just a matter of finding it. That no matter how hard and dark the road gets, there’s always hope.
And I’m so happy to hear that my story inspired someone like you who is making progress.
If you are not already a member of our Migraine Strong FB group, I think you would make a lovely addition. And if you are, please say hi 🙂
Thanks for always inspiring others with your words 🙂 You are a star!
How did you get through law school with your migraines? I’ve finished my undergrad and have looked at and super considered Law School, but with my hemiplegic migraines being so bad, there would be no way I could do it. You are an inspiration for me! It’s so hard to live a normal life with these migraines
Hi Taletha, During law school my migraine disease was episodic. Thankfully I was able to abort my attacks using Excedrin at that time. However, irregular sleeping schedule, late nights studying, stress definitely affected migraine. It’s a very difficult environment to be in for a health individual and definitely a challenge for someone with chronic illness. If you are considering it, discuss with your doctor what other options you can try to get your disease under control. Feel free to join our closed Migraine Strong FB group. We have a few lawyers there. Many members have learned to control migraine using the Treatment Pie. – Marina
Hi Marina! I’m in Canton. 🙂 It’s great to know you are so close. Let me know if you ever get together for a momgrain meetup. 😂 Your story sounds a lot like mine. I’ve been on this spinning wheel of migraine hell for a few years now. Like you said worse after kids, but have been getting them since I was a little girl. I just started natural progesterone (prometrium) and it seems to be helping a lot when I stay on track with diet and exercise of course. I just became a yoga teacher since mediation and yoga has helped me so much with stress and the daily grind.
Tara, what a small world! I would love to connect and chat. Momgrain meetup sounds lovely. I’m marinaml371 on IG and i’m also an admin at Migraine Strong FB group. Please shoot me a message! – Marina
So happy you got your life back! I’ve been fighting with chronic migraine for ten years now. The last year and a half they’ve become intractable. I undetstand what you mean by Groundhog Day. I wake in pain and go to bed in pain. I also have a 4 yr old. It seems that my IUD has made mine worse. I have been diagnosed with medication overuse headache. When you get your episodic migraines now, are you able to take acute medicine or do you just let it pass on it’s own to avoid the rebound cycle again?
Hi Angie! I’m so sorry you are struggling. 🙁 I do take acute medications now and I am just mindful of how much I take. For me the birth control significantly made my migraine attacks worse. Discuss with your doctor whether it’s worth experimenting with your IUD. If you have been diagnosed with medication overuse headache, please take the step to get rid of the cycle. It is not easy, but neither is living life where taking medications brings on attacks. It’s such a vicious cycle. Join our Migraine FB group and we would be happy to help you. Get your doctor on board. Steroids, nerve blocks, and commitment to stop taking the meds is a start. I wish you all the best and hope to talk to you again. – Marina