Well here I am again. I wrote one post but then dissapeared for awhile. I’ll retell my story, adding the new details.
My name is Abbi. I’m 13 years old, almost 14. I have a difficult family situation, including most support from both my grandmas, my sister, and sometimes my dad. My mom is almost out of the picture and the stress with her has me emotionally exhausted most times I think too hard. My chiari story is confusing. To me at least. I’ve read posts that make mine seem like nothing. But it’s still hard.
About a month and a half ago, I overdid it. I had a very long weekend. I babysat for 9 hours, got up the next day and worked a spaghetti dinner for 9 hours then babysat for another 5. The next day, a Sunday, I was exhausted. I woke up with a horrible throbbing headache. Medicine for headaches never had worked for me, I’ve tried just about everything. So to try and get some relief, I layed down and took a nap. When I got up a few hours later, my head still hurt. I was at my grandparents house and could hear dinner being eaten. So I got up and went to the kitchen for food. I got about 5 steps and got ridiculously dizzy. I spent the rest of that day and the next in bed. When I had to walk, I held onto something or pressed against the wall. There was no school on Monday, but when I woke up to get ready Tuesday I tried to get out of bed and cried. My head hurt so bad and I was so dizzy I couldn’t stand. My grandma took me into Med express and they did a ton of tests, deciding it was nothing but Virtigo. However, Virtigo being very rare in young people, the doctor wanted an MRI just to be sure that was it. I was dizzy the rest of that week and a couple days of the next. The headache continued. I was terrified to get the MRI, mostly because I’m a horrible worrier. I remember changing into the gown and standing in the room crying for a few minutes before I could calm down enough to talk. Luckily the ladies were amazing and although I found out I’m a tad claustrophobic, it went well. When my MRI results came back, the day we were flying to the beach, I wasn’t at home. My dad called and we had a conversation I’ll never forget. He sounded different when I answered the phone… “I have some bad news for you” he told me. Well, his bad news could be anything from the power went out to someone is dead. I asked him how bad and he paused. “Your MRI results came back” he said starting to get choked up. I waited trying to hold in my own tears, fearing the worst. I remember he said it wasn’t life threatening but it was life long. I don’t remember anything else he said right then. I burst into tears, handed the phone to my grandma and went to cry in my big sister’s arms. If she wouldn’t have been there I’m not sure what we would be done. We flew to the beach, despite the doctor saying planes could cause a more severe headache. Since my headache from a few weeks before never went away, I didn’t much care. We went and the first few days were amazing. Then I had another dizzy spell that lasted the rest of the vacation and then some. The plane ride home was a disaster. I had to hold in tears the whole time, next to a stranger who probably thought i was nuts. I saw my fanoly doctor the day after I got home. She didn’t say much but referred me to a specialist in neurology and we went just a few days later. He did a bunch of movement tests and pretty much said it wasn’t chiari. Honestly he acted like I was making it up. He referred me to an ear/nose/throat doctor and a cardiologist to be sure everything else is in check. Those appointments are in September. Since that day I’ve learned what bothers me more. I’ve never gotten rid of the headache. I still get dizzy. I have trouble focusing sometimes and once in awhile right after I stand up and take a few steps, my visions blackened compleatly. For the most part I’ve kept it to myself because I’m not a complainer. My friends and family don’t understand how bad it really is. They look at me and think I look normal so there’s nothing wrong. They don’t understand why I hate bending down, steps, car rides, noise, light, physical activity. So I push myself way too much. A few times I know it was too much, I felt the symptoms the next day. I was at a wedding. Danced all night with my boyfriend. The next day I wanted to die. I went to a birthday party and ran around a lot. Later that night I got dizzy. I pretended I was fine though. A few days ago I was carrying kids while we were camping. I soon was dizzy with a worsened headache. I went back to the doctor today because I’ve had a terrible earache for the last 2 days. Turns out, my ears are just really plugged. But while I was there and told her nothing has gone away, it’s only gotten worse and new things have happened, she said she really thinks it is chiari. She wants me to get a second opinion. So I will be soon.
It’s scary and it’s hard because nobody understands it. Nobody really knows what it is and nobody realizes how much everyday things hurt me. I stopped talking to my friends about it. I rarely mention it to my family. My boyfriend doesn’t know any more than what I found out at the specialist. He thinks I’m fine now. Because I pretend i am. My friends seem to think I’m over exaggerating. That’s what hurts the most. The judgement I get for not wanting to do the fun things I used to.
Any thoughts or comments, I’d greatly appreciate.