Posted in Hemiplegic Migraine

Mind Blown.

I’ve mentioned in past blogs the dramatic lock-jaw symptom I dealt with all summer. Typically, lock jaw means the sufferers’ jaw is locked closed and they cannot physically open it. I’m special and have what I think is the even worse side of that. When my mouth pulls to the right of my face it usually means my jaw is close to locking…open. That means I cannot eat, take oral medications, drink or sleep when the ordeal begins. My jaw quickly began to lock itself open more often than before, and the hardest part is that we have yet to be able to break the cycle on our own. This has earned me countless, almost weekly, ER trips. The last thing I want to do when I don’t feel good, or ever, is deal with the criticizing ER staff and loud, florescent lit department. However, lock-jaw is so painful I usually give in to ER rescues more quickly than normal. We’ve tried waiting hours and even days before hitting the hospital, hoping my home rescues could eventually calm my jaw. On the other hand, we’ve tried going straight to the emergency room because we know that route works and it means we don’t have to pump so many unsuccessful meds into me at home. Long story short, it is one of, if not the most painful symptoms I struggle with frequently.

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Tonight, I was scrolling through Facebook when a post from my Hemiplegic Migraine support group literally stopped me in my tracks. “Asking for some advice…I’ve been in a cycle for 6 days now…where hm comes and goes…but now my jaw with has completely locked up…anyone else have this??? And what have u done” WHAT. I’ve been trying to track these attacks for months, looking for any conclusion that would make this odd symptom make sense. Both of my neurologists have spent time witnessing an attack in person, watching videos or pictures of attacks, working on treatments and trying to come up with some type of explanation. Now, I’m reading yet another post leaving me mind blown of the to-the-T description given by multiple people all states or countries away from each other. How? Just, how?

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The very first response started with, “Mine locked with my mouth open…”. Yet again, that uncomfortable feeling in my gut urged me to read everyone else’s comments. 15 comments followed, each full of unfortunate thankfulness that someone else understood the excruciating pain that isn’t possible to describe. Person after person typing about their personal horror stories caused by reverse-like lock jaw. Seven people shared their need for emergency room trips each time, and the “cocktail” they required was nearly the exact that I require. I immediately had tears in my eyes. How? Just, how?

I’ve said it before, and I’ll say it again, the feeling of someone finally understanding exactly what you can’t put into words is odd, simply put. Over and over again these strangers through a computer get me. I relate to those people and all of a sudden i’m taking a deep breath, I’m reassured that I am not alone and WE will all continue to conquer. I hate that reading about other people struggling through days just as I am is the most comforting part of all this. I hate even more that we’re made to feel alone and crazy to the point that we even begin second guessing ourselves. That being said, I am thankful to have a doctor that does back me up. Though Dr. Diamond didn’t have a straight answer for me about my jaw, she held my hand, looked me into the eye and said, “Hadley, you are not crazy. This is real. We’ve witnessed it. I’m sorry I don’t have an answer for you, but you are anything but crazy.” Do you know how many years I have begged for a doctor to tell me that? Three solid years. Nothing about HM is fair to any of us, but I am SO thankful to have a community to back me up, even if they’re behind a computer screen.

So, again I ask, how? How in the world does a disease ending in “migraine” make me hurt, make me vomit, make me confused, make me blind, make me have seizures, make my body stroke out, make my jaw lock? How? We are begging for answers. We are doing more than our fair share of research. We need answers. Until then, thank goodness for support groups. Until then, we will stay thankful that we are not the only person in the world fighting through this.

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