- It feels like you’re dying — When I get a migraine, I have awful throbbing pain about my right eye that wraps around my head and sometimes goes down my neck. I get dizzy, sometimes I can’t see that well out of my right eye. I throw up. And sometimes my abortive meds fail and there’s nothing I can do except wait for my neurologist to call me back with ideas. It’s scary when I can’t manage my migraines, so I deal with fear and panic on top of the physical symptoms.
- People think I’m faking — Like with other invisible illnesses, people assume you’re faking and have no sympathy whatsoever.
- Doctors and other medical staff have thought I seeking drugs when going to the ER — When my abortive meds fail, I can’t get a hold of my doctor and the pain is severe, I have to go to the ER for treatment. I have been accused of trying to score drugs. Once, I went to the ER and I told the doctor I couldn’t have NSAIDs, which is true, so the doctor goes, “OK, so you’re here for narcotics, then?” It was embarrassing and frustrating, because I was in so much pain.
- I cancel a lot of plans with friends — Migraines spring up fast, and while my meds work quickly most times, I still don’t feel well enough to hang out or go anywhere. I’ve had to cancel on my friends a lot, and I know it hurts their feelings and makes them feel like I don’t want to be friends. Most of my friends now get it, though.
- I missed a lot of work (when I did work outside the home) — When I was working, I had to call out sick A LOT. Like I said, migraines can come on quickly and my meds don’t always work. Sometimes, the migraines last for days (called an intractable migraine). Not only did it piss my bosses off, it made my co-workers resent my absences because they had to pick up the slack. And if you can’t see the illness manifest physically, it’s hard for some to understand.
- The medicine is sometimes worse than the migraine — Right now, I take Imitrex when I start to feel a migraine coming on. Sometimes, it works with little side effects and others it’s just as bad as the migraine itself. It feels like my brain is leaking down the back of my head and neck. It makes me nauseated and very fatigued. I don’t know why I feel such severe side effects at times and not others. It’s frustrating, but I’m going to try a new medicine called Ubrelvy.
- I can’t wear my hair in a pony tail or put anything on my head –– This is not a huge deal, but when I have a migraine, I can’t wear my hair up or wear a buff (to help dry my curls) or have anything touching my head at all. My scalp is so sensitive that even water in the shower can hurt.
- I can’t sing — This might seem odd, but I love to sing. I sing all day long, which seems to really aggravate my kids. But when I’m sick with a migraine, it hurts so badly to sing, which makes me hard for me to put Eli to bed because he requests lots of songs. If I try to sing, the throbbing becomes way worse.
- I can’t always be there for my kids — Sometimes, I’m just down and out. I can’t get out of bed, which leaves my husband to pick up the slack. I hate not being able to play with them or spend time with them, especially because they don’t always understand why I can’t. It’s hard, and I have a lot of guilt about it, but it is what it is.
- I get migraine “hangovers” the next day — After a migraine, I feel like crap. I’m very fatigued, I can be irritable and each of my limbs feels like it weighs 700 pounds. Sometimes, my brain feels foggy, too.
- The medicine can be expensive — The new medicine that I’m going to start costs $1,000 per month. That’s not a typo. I have a savings card, but I’m not sure how much that will actually knock down the price. The thing about this drug is that there are no side effects — I was able to try some samples a couple months ago and I didn’t experience a single side effect and it worked quickly. I’m looking forward to using them, and hopefully, the savings card will help a lot.
If you suffer from chronic migraine, that means you can have 15 or more migraines in a month. That’s a lot of pain and time missed with family and friends. It’s not fun. Thankfully, after I had kids my migraines got a little better but they can still wreak havoc on my life. And one thing I didn’t mention — and probably the most important — is that having so many migraines adversely affects my mental health, and so many people don’t think they are related.
If you know someone struggling with migraines, ask how you can help and don’t ever judge!