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When Your Rare Condition Feels Like The Boogie Man

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Have you ever been afraid of the dark?  Or cried out to your parents with a trembling voice in the middle of the night, “The boogie man is under my bed!”

Parents know there’s no such thing as the boogie man. Yet, like a knight in shining armor, they run into your room, turn on your light and check your closet and underneath your bed.

In the last year, I’ve struggled with an adult version of the boogie man.

To give a little background: I’ve had migraines since the age of 6.

I remember my very first one, actually. It was so severe and three-fourths of a lifetime ago that some of it’s a blur, but I remember it. My head was throbbing, feeling like a man was in my head, using my brain as a punching bag for his boxing practice. Mom was worried. An icepack sat upon my head, and any time I tried to lift it off the pillow, the excruciating pain intensified… and I cried. A lot.

After my first migraine, I got them enough to have a special prescription to help with the pain, but only needed to take that about once every four to six months — although, because I got them so young and would talk about them as a child, I remember many people thought I was just exaggerating regular and simple headaches.

In 24 years, I’ve seen a few doctors on the subject, ranging from a neurologist, geneticist, and a Sturge-Weber syndrome (SWS) specialist (we’ll get to that in a minute).

All have told me that while some children get migraines, it’s rare for a history of migraines to start in 6-year-olds, even for someone like me, whose family has a background in the area of migraines.

baby lying in drawer cabinet
Crystal as a baby

There’s a topic I haven’t written much about. Some of you know I’ve written about my journey with a vascular facial birthmark, a port wine stain (I’m also in the the process of writing a book, so stay tuned for more information). You may or may not know that my birthmark is way more than a skin pigmentation condition. It’s caused by extra blood chillin’ in some of my blood vessels. And depending on a case-by-case scenario, the depth of this “birthmark” varies (I put “birthmark” in quotes because there is way more to a port wine stain than meets the eye.)

In my case, it does affect the coloring of the left side of my face. However, it goes much deeper than that. It’s in my left ear, in my left nostril, on the left side of my gums, and on the roof of my mouth (once again, only on the left side). It also goes all the way to my brain, and affects my (left) eye. While I’ve had migraines since the age of 6, I was diagnosed with glaucoma at the age of eight. Since then, I’ve had to use eye drops twice a day, doing my best to keep the pressure in my eye stabilized so I don’t go blind. By the time they realized I had glaucoma, I had already lost a little bit of vision — but “not enough to tell.”

Not everyone’s facial birthmark reaches their brain. When it does affect the eye and/or the brain, however, that child may have a second condition: SWS.

But here’s the thing: I have SWS. I’ve just never spent much time writing about the condition because it freaks. Me. Out. My doctors were confident I had it since I expereince migraines and my eye is affected, but they weren’t 100 percent sure I had it. It’s a super-rare condition and they pretty much (admittedly) know nothing about it. It wasn’t until October that I saw a team of SWS specialists (for free) and got an official diagnoses, thanks to The Vascular Birthmarks Foundation and their annual conference.

little girl wearing sunglasses indoors
Crystal as a young girl

Once I had the official diagnosis, and even though all my other doctors were only about 80 percent sure — my chart only said something along the lines of, “likely to have SWS” — just in case any new symptoms were to appear. But with an official diagnosis by one of the best SWS specialists around, I finally felt like I could claim it as my own, and I officially had the right to write about it, even though it still has taken me nearly 5 months to write about it on such level of depth.

There’s so little that is known, but the stuff that is known terrifies me. Google SWS, and it’s not light reading material.

Just like any condition, the severity level varies from person to person, and can include seizures and impaired mental and physical development. Like myself, if the port wine stain touches the eye, you can develop glaucoma. Many people with SWS experience migraines — and that’s the just a small portion of the list of the stuff that is known.

While I have MRIs every couple of years to watch the blood vessels near my brain (and have done this since I was a small child), I didn’t start having questions about my condition until a few years ago. Once I had lengthy list, I went in to see my trusty neurologist. This is how our conversation went:

Me: What’s up, doc? How are you?
Doctor: I’m great, how are you?
Me: I’m doing well, but I have a ton of SWS questions for you.
Doctor: OK, what’s up?
Me: Alright…Question number one! (*Insert whatever the question was.)
Doctor (with a deer-in-the-headlights look): I don’t know the answer to that one…Truthfully, in all my years of practice, you’re the only patient I’ve ever had who has SWS. You probably know more about the condition than I ever will.
Me: Oh, OK. Well, by chance, do you know the answer to this question?  (*Insert question two here.)
Doctor: (deer-in-the-headlights part two)…
Me: Oh, OK. Never mind. Do you know of any neurologists who specialize in SWS, or have more understanding and knowledge on the topic?
Doctor: I’ll find out for you.

And that was about three years ago, and she’s not yet told me of a SWS specialist within my health care’s organization. Even my laser treatment doctor hasn’t been able recommend one to me. And I ask…a lot.

Since my doctor didn’t seem to have answers, I’d turn to Google for them instead. But even then, there was only a 50/50 chance of finding my answers, so I stopped asking — until May of last year, which was when my brain became a hot spot for migraines.

That month is a blur. I just remember staying in bed for many of the days, my head under a pillow to block out the light, migraine medication by my side.  The migraine was a constant, month-long torture, often buddy-systemed by blurred vision, weak muscles and stomachaches. Did you know there is such thing as a “silent migraine“? That means the sensation of the headache may not be felt, but the other symptoms such as blurred vision may be present.

Sometimes with a migraine, I can function. I may have to wear sunglasses inside, but I can pull it off.

But, after about two weeks, they progressed. I started canceling on friends. My weekends were spent in bed. Church was missed. And then I started missing a few days of work, which is when I knew I had lost control of all the pain and my body. Barely functioning with some cool sunglasses swag wasn’t even on the table anymore, and my questions started to build up again.

During my recent appointments with the geneticist and SWS specialists, they all agreed, “While your family has a history of migraines, I’m confident this is your SWS as you started to get them at the age of 6, which is not normal for a child that age.”

Since May, I’ve found myself taking migraine medication two to three times a week, depending. Sometimes it’s more as a preventative measure when I feel one coming on, sometimes because it’s the full, real deal.

And then this week happened. Sunday I had an “I can’t lift my head up off the pillow without crying” migraine, and I just woke up to a similar one a few hours ago.

Crying, I told God, “I don’t like my brain. Wait, strike that, I like the contents of my mind, I’m just really mad at the actual organ right now. Oh, never mind.  You’re God — you know what I mean.”

Until tonight, I’ve thought, “SWS scares me. It freaks me out.” But I don’t think I had officially told that to God.

My assumed SWS migraine symptoms have drastically changed in the last year, and that scares me. Seeing how that has changed, I can’t help but wonder if anything else will change. While most people start having seizures as young children, there have been cases where SWS patients develop them as adults, some in their 50s — and that’s my biggest SWS fear.

In the last year I’ve bounced back and forth between two different “Why me?” questions.

“Why me? I can handle the birthmark. I’m fine with that part. But why do I have to struggle with migraines?” I ask in frustration.

“Why me? Why, out of all the people with SWS who have seizures and other serious symptoms, do I only have migraines and glaucoma? Why, for the most part, do I get to go out and live a life that many with SWS cannot?” I inquire out of curiosity and an odd sense of guilt.

Along with the occasional “why” questions, the fear questions are also triggered.

“Are seizures next?” I wonder.

“Will my migraines worsen?” I fear.

I’ve never been one to play the “if” game very often. Not until this last year, and I don’t like it.

Thinking back to my childhood, I don’t remember being afraid of the dark. I must have been afraid to some extent, though, as I remember falling asleep with the light on for many nights. In fact, I think this was my first round playing the “if” game.

When I went to bed with the lights off, the room was dark, and in darkness, you can’t see. Where there use to be walls, there appears to be an endless amount of the unknown. What if I was thirsty, and couldn’t find my water cup in the night? What if I knocked my cup over during the search? What if something scary lingered in my room, or in my closet? There wasn’t anything scary lingering around in the daytime or with the lights on, but what if that changed as the darkness crept in?

And that’s how my journey with SWS feels. The light used to be on. I knew I had an occasional migraine and I have glaucoma. But when my symptoms began (and continue) to change, and the migraines started to come on a daily basis?  When I have a migraine for two weeks (or a month) straight? The light is turned off and I can’t see anything. I’m afraid of what might be lingering in the dark. I’m afraid of the boogie man.

My life verse has been Jeremiah 29:11, “‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’”

Throughout different seasons in my life, I’ve been clinging to this verse — just like my recent journey with SWS.

I don’t know what my future holds, but whatever it is, my God is “bigger than the boogie man. He’s bigger than Godzilla or the monsters on TV. Oh, God is bigger than the boogie man, and He’s watching out for you and me.” (“Veggie Tales,” anyone?)

I believe He also has a plan for my life, even if I never understand the full plan, and even if I never find the answers to my big “why me” questions.

Follow this journey on The Travelin Chick.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: February 27, 2016
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