Today, I am a person.
For the last two weeks, I have not been.
I have been shut in a room, with towels and sheets covering my window, making sure no light sneaks through. I have been on sensory overload – light, voices, noise, smell, touch. Any kind of sensation would send me into excruciating pain. I couldn’t eat. I couldn’t drink. Everything I would consume, I would throw up. Even when there was nothing left in my stomach, I would stand over the toilet and retch and retch. I was at a level 10 pain all day, every day. I couldn’t sleep. I couldn’t eat. I couldn’t talk on the phone because I was stuttering so badly. I couldn’t text because my brain didn’t understand words. I couldn’t communicate. I was not a person. I was trapped.
Trapped by migraines – a seemingly simple diagnosis.
But it’s not. It’s so much more.
I have all types of migraines – classic, migraines with aura, hemiplegic migraines…you name the type of migraine, I have it. I also have chronic migraines, which means I have more than 15 migraine days a month.
With all of these different types of migraines, these are some of the symptoms I experience:
1. Sensory overload
3. Spots in vision or distortions in my vision (visual auras)
4. Changing vision (blurry, double)
5. Weakness on my left side
6. Stroke-like symptoms
7. Aphasia (the inability to speak or find words)
8. Muscle spasms and spasticity
9. Hemiplegia (one-sided paralysis)
10. Alice in Wonderland Syndrome (imagine hallucinations)
These are just 10 symptoms I have of many. Note that headache is not on my list. For me, the head pain is not even worthy enough to make my list. There is a headache component to it, but there are so many other symptoms I want to address to change the stereotype of migraines.
When my migraines get really bad, I become “neurologic goo.” That means that my muscles stop working. They all contract until I can’t move. I lose the ability to communicate, to think.
After two weeks with a migraine, experiencing all of the above symptoms and an excruciating headache this time as well, my neurologist sent me straight to the emergency room when he saw me.
What some people might not realize is that there are certain cases when migraines are a medical emergency, such as having a migraine for 72 hours or more or being unable to “break” the migraine, which means it keeps coming back no matter how you treat it. Once you get to the point that you can’t break your migraine, it becomes intractable and status migrainosus. It is crucial to get medical care at that point.
So imagine me living like this for two weeks, heading into the ER, and having the triage nurse, when I told him I had a migraine, repeat back to me, “So, you are here for a headache.”
Let me be clear:
A migraine is more than a headache.
I am often admitted to the hospital because of migraines.
I am at a higher risk for seizures.
I can even have a stroke.
I can have a migraine without a headache even.
So, no, Mr. Nurse. I am not at the ER for “a headache.”
Migraines are a severe neurological condition. Migraines are debilitating. They are disabling. They are so bad for me that I have had my driving privileges taken away and can no longer work.
I am an extreme case of a migraineur. There are many people with less severe forms of migraines, but regardless of what type of migraine you have, how long you have had it and any other extraneous factors….
It is not just a headache.