Living with a Massive Headache – Every Day

If you’re new to my blog,  Hello!  I am a mother of three humans and two dogs.  I am a wife.  I also try to fit in some running here and there because I love it.  Along with a ketogenic diet, running has helped me curb my chronic migraines.  I was diagnosed around 2007, but they ended in November 2016, one month after I started my keto diet.  But recently things have changed.  In June 2017, I was involved in a car accident and then in September 2017, I started to have DAILY headaches.

In addition to my migraines, I have hemicrania continua.  These ice pick headaches only hit me on my left side, right above my temple and behind my left eye.  My left eyelid droops, and my left side of my nose gets runny.  Only one medicine makes it go away, indomethacin, which is usually reserved for people with gout.  Unfortunately, indomethacin caused me to retain loads of water and weight so I had to stop.

Now I’m stuck again without a solution.  This daily headache makes me really sensitive to noise.  And it’s only certain noises and circumstances.  It’s weird.  Most music is good for me.  But if I try to watch TV with people talking around me, I can’t focus.  I hear EVERYTHING but understand none of it. Asking me to order something off a menu in a restaurant with talking in the background is also not a good idea. The noise prevents me from understanding what I’m trying to read.

I wake up with migraine-ish pain on the left side of my head, and if I hear something, I get a migraine on the RIGHT side of my head, and they hit me quick.  No abortive medicine can help, but I take it anyway.  I have to try to sleep it off.

And… now there is a lesion is my spine and spots all around my brain. I’m in the middle of so many tests and MRIs and going through the process of eliminating diseases and disorders to find out what these lesions mean. Are they the cause of my two disorders, or is this multiple sclerosis (which is what things are pointing). The process is time consuming and so costly, and I grow impatient.

Yesterday, I had a lumbar puncture done. You may know the term “spinal tap?” It’s the same. My experience was super long and painful. I cried a lot from the pain and I squeezed my husband’s hand pretty. I’m currently recovering by laying flat on bed rest, typing this on my phone. Pain. Swelling. Icing up. Wonderful times!

I have new symptoms:

  • Blurry vision
  • Pins and needles in my right leg or my big toe
  • Loss of sensation in my right or left thigh
  • Lower back pain
  • Burning sensations in several areas in my body

So, how do I deal? One hour at a time. One wake up at a time. I remember to smile every now and then, I remember that things could definitely be worse. I watch or listen to shows that have a soothing sounds. If I can, I shut myself in a room and cuddle with my dogs and just be quiet. I breathe. If I can, I’ll walk or run with my dog. I make art. And then I take medicine and pass out.

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