What It’s Like Living With Chiari Malformation

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Chiari malformation (CM) is a rare, mysterious illness and very hard to deal with. It’s hard finding a doctor who is knowledgeable and has experience treating it, hard finding information on what’s happening to your body and harder to explain to people when you don’t even know what’s happening.

When I was diagnosed with CM I became obsessed with researching every medical site, blog and chat room. My body was in chaos and I desperately wanted to know if other people were experiencing the same “weird” symptoms. Every case is different. Reading other people’s experiences brought me comfort because I was able to relate and understand this was real and “not all in my head.”

Please remember this is my experience with CM.  Everyone is different.

Tension headaches at the base of the skull and work their way into a full migraine, neck and shoulder pain, even full body pain (depending on the severity), dizziness, face pain, hair and scalp pain. There’s pressure in my eyes, vision changes, tingling on my lips – and sometimes my mouth. There’s a ringing in my eyes, insomnia, numbness and tingling in parts or all over my body. I experience nerve pain, skin pain/sensitivity, internal pulling sensations, brain fog, loss of concentration- speech/thoughts, forgetfulness and loss of sense of direction and judgment. I have body fatigue and weakness, sensitivity to light and sound, irregular temperature changes, stress, anxiety and depression.

Because of what the body is going through, it’s difficult working out, getting out of bed, working, doing day-to-day things,

Lastly, I wanted to give a couple of examples on how I describe my body flare-ups. For those of you that have experienced a hangover, times that by 10. And, if you shake a coke bottle hard enough to make it fizz and build with pressure, imagine them together… and that’s my body.

Another example is: imagine a circuit board with a few loose or damaged wires and the system messes up or crashes. Now throw water on it and watch the shocks of electricity come to life. Imagine them together, and that’s my body.

I have no control over it. Any second, minute, hour, day or night it can go from good to bad. People seem to have a better understanding when they have something to visualize. You’ll find yourself having to remind people and it sucks, but at least it gets easier describing it in your own way.

So if you’re looking for some kind of comfort, I hope this helps. And remember – you’re not alone.

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