My 12 year old Daughter Dasha has always complained of headaches. The end of February she was at her first track practice of the season and she complained of a headache and dizzness. I thought it was just because it was the practice. When my daughter fell to the ground, and started having seuizer type espoides and went unresponsive I knew it was more. When she awoke she was dylusional almost like a panic mode, holding her head. Rushed her to the ER. Diagnosis= panic attack/syncope
Primary Doctor ordered a full cardiologist work up, everything came back Clear. Referred her to a neurologist appointment wasn’t scheduled until June 13th. Absolutely no physical activity ordered.
2 weeks later she was at my sisters house. Exact thing she complained of dizzness and headache. Had her sit down she went into a seuizer type epoisdes. Rushed her local ER=
Panic attack
3 weeks later she was at school in gym class sitting on the sidelines while her classmates played dodge ball. Complained of dizzness went to the nure, after she was there for a few minutes she went fell into a seuizer- type activity only this time she was patting her head. I asked her if her head her she said yes. Rushed her to Children’s in Dallas TX. Np seen her and told me it was all in her head and ordered a pychratic evaluation, I was furious!! My daughter lives for track and basketball and owns her heart. Her not being able to practice has been killing her. So I knew different. Requested to see a actual Doctor. Diagonals there was seuizers/espilesy. Put her keppra and sent us home.
I than called my primary doctor and told her I didn’t want to wait until June. I wanted a EEG and MRI done NOW. She set it up, we got it done. 2 days later I got the call and said I need to come in for the results. My heart sunk. All I could do was think the worse. Celebular etopia. ( if that right showed up). She said it was nothing to worry about it was chiari. Mother instinct told me to digg further. Somethings wrong with my daughter!!! I called every Neurologist in the state of Texas to get her sooner appointment. I was just about to drive 6hrs, when Cooks called me with a cancelation. We went Thursday. The neurologist told me he didn’t think my daughter was having seuizers. She does has Chiari Malformation type 1 but I was nothing to worry about. He advised me take her off the Keppra and stated his opinion was awful headaches. But he referred her to a neruosur!?!?! Now I might have done my research wrong but it’s headaches the main symptoms? I’m soo emotionally torn on the inside. I know my daughter is sick and I’m just not getting the answers. We go Wednesday to a neurosur in houston tx. question to anyone listening is could these seuizer type espoides be caused by this Chiari? Could her head be hurting soo bad that she can’t handling and it’s effecting her in other neuro ways? Does anyone have a story even similar to mine
Yes! I suffer with seizure like episodes as well. They started in August. I was at first diagnosed with complicated migraines. Then in December I was diagnosed with ocular migraines. Now after reviewing my own medical records and seeing that my MRI SCAN showed a low lying cerabullar (spelling?) tonsil I did my own research. I also suffer from vision loss, trouble breathing and vertigo. I lose my words. Trouble concentrating. It’s getting increasingly worse as time goes on.