M.E.G.'s Confessional

My Mystery Disease is Pompe

It all started with headaches.

on October 17, 2007

headacheheadacheheadache“Man these stairs are a bitch to climb – I’m just so out of shape!”

headaches

 

That’s what I thought. My realization that something was wrong headaches.jpgheadaches.jpgheadaches.jpgheadaches.jpgwith my body didn’t start with noticing the muscle deterioration, it started with headaches. I woke up one day with a terrible headache, so bad that I couldn’t go to work. It wasn’t a migraine from what I could tell even though I had never had one before. I wasn’t sensitive to light or anything, my head just ached. I stayed home but couldn’t get any rest because the pain in my head kept me from sleeping. I finally went to bed later that night but barely slept and woke up the next day feeling just as crappy. This went on for 2 week straight. That’s right I had a headache constantly for 2 weeks. Over the counter medications did nothing.

 

It was time to go see a doctor. Having had a childhood friend die of a brain tumor that started with headaches made me panic a bit about my situation. Having an HMO meant that I saw a different doctor every time I went in. Which resulted in a different theory every time I went in. They prescribed powerful pain killers and told me I had everything from caffeine withdraws to cluster and stress headaches. They even thought there might be a gas leak in my apartment or my place of employment. The gas company came out and gave us the all clear – a gas leak was ruled out as the culprit. They ran all sorts of neurological tests including the dreaded MRI and CAT scan. During all the testing, they finally found something that got rid of the pain for about a day and knocked me out at the same time which at least allowed me to rest while all this was going on., it was some sort of shot that would knock me out with in a matter of minutes – good stuff!

 

The good news was they ruled out brain cancer, the bad news was they still didn’t know what was wrong. The testing and referrals continued. In the meantime I grew weaker and weaker. Getting out of chairs became more difficult, climbing stairs became a chore. I chalked the weakness up to being out of shape and spending so much time in bed when they gave me my magic “headache go away shot” which was now being given to me about 3 times a week.

 

It wasn’t until I was in a routine visit with one of the specialists that he noticed I was having trouble getting out of the chair in the examine room that we were on the path to discovering the MD.

 

No one has ever been able to explain the headaches and now I get them about twice a year and they only last a few days. The best part is I can usually numb them by taking a few over the counter pills.

 

Maybe the headaches were some sort of chemical reaction to the changes going on in my muscles; maybe they were some sort of internal fire alarm that got my ass to the doctor. Whatever they were/are they started this journey and pop up every once and awhile to remind me how it all started with headaches.

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2 responses to “It all started with headaches.

  1. I really do prefer it all started with a mouse over it started with a headache, but as we do not get to choose our situation, it works.
    From your first post about your support sisters, I realize you have probably come along away from the time you first started this blog, but the Monique I met is a wonderful person that people WANT to be around, so do not always think we are riding the elevator with you, sometimes we are doing it to be WITH you. I can count on one hand the people magnets I have met in my life and you my dear are one of them.

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