My Life with Craniosynostosis & Finally NO MORE HEADACHES!!!

I was born with Craniosynostosis. I am not going to bore you with all the details of what is, but to sum it up its when the soft spots closed up to early.  In 1985 I undergo surgery on my head to put metal plates in to help the soft spots on my head. The surgery left a scare from ear to ear and also a little dent in the upper corner of my head. Growing up I hated that more than anything. I tried fixing my hair ways it covered both things and didn’t like my picture taken because not only did I notice that but I also felt my eyes were a little uneven. I remembered once setting at a baseball game with a friend looking at my senior pictures and gripping about how they turned out. He told me You know Jacqui, no one cares about those things but you. We don’t even notice it until you point it out. You are here and health and that’s what matters. Don’t worry about the little things.” 

craniosynostosis

Little did I know how right he was. I have dealt with headaches all my life. Some days are better than others, but I always a headache. It was bad enough that I remember one day one of the school’s  Secretary  telling my parents why don’t you just leave a bottle here and sign a permission slip for us to give her the pills(over counter) when she asks. I think she was tired of me requesting to call my parents. 🙂 I never thought much about the headaches then it was a part of my life. I just got use to it. The difference from then and now is I had no responsibility  No body depended on me then and now I have three little ones that depend on me to take care of them. I have my blog. I have the house and laundry to keep up with. I can’t always just go lay down and ignore the world. Something needed to be done. Sometimes these headaches make it where I can’t really move without my head pounding, so I just sit in the chair and fail in the mother/wife/blogger area. I felt horrible and hopeless. I have been to the doctor before when I was younger and was told there was nothing they could do. They didn’t know why I had these headaches. Two weeks ago I had the worse headache ever. I was sick to my stomach and couldn’t get off the bathroom floor. I called my husband crying and asking him to come home. I was lucky during that time my youngest was napping and my oldest was at school. My middle child was laying on the bed (the bathroom is connected to our bedroom) watching TV. So I could lay on the floor and hear/watch her at the same time. I will never forget that moment. I was at my worst and my little sweetheart brought me a pillow, blanket, and my pop from the kitchen. She asked “Mommy are you Okay? Can I help?” That was my turning point. I am the mom and suppose to take care of her not the other way around.I knew I needed to tackle the doctors again. There had to be a reason. There had to be a solution!

There was. I have never been more frustrated and relieved at the same time. I went to a neurologist and he said because of the surgery I had when I was younger it messed with the nerves in my head causing me to have these headaches. He told me there was a pill that will help even out the nerves but I had to take it on daily base. He told me within three weeks I wouldn’t have anymore headaches. Although this was good news it frustrated me so much, because I couldn’t help to ask why in the world didn’t he figure this out 20 years ago!! I have dealt with headaches for the past 20 some years and the whole time a pill could take the pain away! However, that’s the little thing. The big things is the will go away. I no longer have to deal with these headaches. I can now be the Mommy, Wife, and Blogger that I want to be!!

*Random Fact: Yankees catcher Jose Posada also had Craniosynostosis. 

13 comments

  1. Hi! Sure, I don’t mind sharing. My neurologist put me on Depokate and a muscle relaxer. I took the Depokate daily and the muscle relaxer as needed. I still get some headaches, but for the most part they don’t knock me out. I hope that helps! If she needs any other advice or just someone to talk to feel free to message me on Facebook!

  2. My niece has craniosynostosis and she also suffers from frequent dibilating headaches (she is 22 now) could you please tell me the pill the doctor prescribed so I can share this info with her. She is desperate and has been to several neurologists with no relief.
    Thank you so much!

  3. Wow I”ve never heard of them closing too soon. I also get terrible headaches, so bad I can’t move and it feels like my brain is going to explode out the top of my head. I have not found a cause for it but I hope there is a solution. I’m happy you have figured it out for you.

  4. Don’t get me started on Doctor’s and migraine meds. I feel your pain on that one. I’ve taken just about every migraine med there is due to a doctor saying my old fashioned med wasn’t as good as the new ones. All the new ones made me violently ill! I had to find a new doctor to proscribe what works. Hope your meds work!

  5. That’s great news! As frustrating as that has been for so long it’s good to know you have a way to get some relief now. Suffering from headaches sucks!

  6. Glad to hear you’re getting relief! Headaches are horrible, and dealing with them every day is no fun. I know you want to scream “why on earth didn’t you tell me this years ago!” but think about how at least you’re getting relief now.

  7. I had never heard of this and I am sorry that you were so self conscious about your appearance because of it. I am glad that you are finally finding relief though.

    Dawn

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