Angie's Challenge: Migraines and Trying to Conceive

Angie has been living with migraines for years. They started shortly after she underwent brain surgery in 2008 for a seizure disorder. Her biggest challenge today is managing her migraines while trying to get pregnant, as many medications are not currently advised as safe for pregnancy. I'll let Angie tell you more...

The beginning of migraine

Tell me your migraine story. When did they begin? Were they immediately identified? How old were you? How did it affect your life?

I started experiencing migraines after my brain surgery in 2008. I was 21 and had a temporal lobectomy to control a seizure disorder. While I had been experiencing migraines for 7 years, I didn’t get treated for them however until maybe 2015. I just always had a headache, every day and still do have headaches every day but they started developing into migraines regularly. There were and are days where I can’t get out of bed because the migraine is so bad.

I always tell people that I know when it’s going to rain because my migraines will start. Most days I can’t even wear hats, headbands or have my hair pulled back too tight or it’ll push a headache over the edge into a migraine.

A long treatment journey

Over time, what treatments have you tried for migraines? Which worked? Which didn’t? What do you use now?

I’ve seen three different doctors now for migraines. My first doctor told me I was probably addicted to Tylenol and that’s what was giving me headaches - but I knew I wasn't addicted to Tylenol, and that Tylenol wasn't causing my migraines. I was trying to utilize the medication to reduce my headaches - but without success.

The second doctor told me to stop eating cheese and chocolate and put me on Topamax and Imitrex. Topamax was to be taken daily and Imitrex is for "as needed use" to take when you feel a migraine coming on. And they both seemed to control my migraines, until I wanted to get pregnant. My doctor helped me to wean off of the Topamax and told me to only use Imitrex sparingly, as it would do harm to a baby.

For the last three years, I’ve been off of migraine medication and just dealing with them because we want to have a baby.

Weather, caffeine triggers, and more

What affects your migraines most?

Weather, any sort of atmospheric pressure or change will immediately trigger a migraine. Certain smells or perfumes, and definitely hormones, I get really bad migraines during my period. Also, honestly not drinking caffeine can cause me to get a migraine. I consistently drink 1-2 cups of coffee per day and if I don’t drink coffee one day I’ll get a migraine.

Practicing self care

How do you care for yourself while suffering from a migraine?

Lavender essential oils in the form of a candle or spray, a very dark and very quiet room, I have a variety of facial mists to help calm me down.

No end in sight

What does migraine recovery look like for you?

I honestly don’t ever see recovery. I think I will just have them forever and that’s how it is. I had a doctor tell me there’s nothing they can do, I’ll just always have headaches and migraines.

An attack from beginning to end

Can you share a story about coping with a migraine - from onset to recovery?

Any time it rains I get a migraine. Today, for instance, it’s supposed to rain later tonight and I can feel the migraine coming. I get a sense where I can’t swallow, it feels like my throat may close and then my ears start ringing. Some days it’s worse than others but it feels like the bones in my face are broken. My teeth hurt, my eyeballs hurt, I can’t see straight and start crying from the pain but crying only makes it worse. I take Imitrex, which slows down the symptoms, but I still need to lay down in complete darkness. With the bad ones I need to take a second dose of Imitrex and put a pillow over my face hoping the coolness will provide some relief as well as the extra darkness, and try not to focus on the ringing in my ears. I kind of just wait it out, crawl into the fetal position, and wait for it to end.

It's not just a headache

What do you wish people knew about migraines?

It’s not just a headache. Not even close. They’re crippling, and just because you can’t see it doesn’t mean I'm not struggling inside.

Wishing for more resources

What do you wish you knew about migraines back when you first began experiencing them?

I wish I had more resources, more ways to treat them that would be safe for pregnancy and trying to conceive so I wouldn’t have to choose between trying for a baby and having weekly migraines.

Advice for someone new to migraine

What advice would you give to a new migraine patient?

Get second and third opinions. Trust your gut, if something isn’t working, speak up for yourself. Don’t just deal with it like I have for so long.