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=
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?
(Edited by JulesG - Moderator)
Has your daughter had a tilt-table test? She would get connected to various equipment to monitor her blood pressure, pulse, heart rhythm, oxygen, etc. and then get strapped to a flat table. The cardiologist and nurses then tilt the table and monitor her vitals in the effort to recreate the situation in which she's lost consciousness before. She informs them of how she's feeling throughout, which is helpful in that it's a controlled environment and she can say if what she's feeling is like how it always feels. The test is positive is she faints while being vertical -- and the specific type and explanation for the faint is based upon her vitals at the time (i.e. did the blood pressure plummet, the heart rate drop, etc.). The test might reveal that she has POTS (Postural Orthostatic Tachycardia Syndrome), which is very common with Chiari, or a type of Neurocardiogenic Syncope. In short, the autonomic nervous system (which controls blood pressure, heart, body temperature) isn't functioning correctly. This site is pretty good with information about dysautonomia and syncope: http://www.dysautonomiainternational.org/page.php?ID=34.
I have both POTS and NCS and had a similar presentation. My first episode actually occurred while taking an exam. I felt increasingly “not right” and collapsed as I walked across the studio to my professor. I’d only had one other experience losing consciousness (during a high fever in high school) and this was far more scary. I only blacked out momentarily, but as I lay on the floor, partial paralysis progressed from my fingers to my arms and legs. This partial paralysis lasted a few minutes, then things returned to normal again and I was just left feeling weak and exhausted. This continued happening over and over again, so it was thought I was having seizures.
I had both an out-patient EEG and an in-patient video EEG, but both ruled out epileptic activity. Like with your daughter, the neurologist insuated that it must have been in my head or that it was stress...I was LIVID. Fortunately, one of my to her doctors ordered a tilt-table test. I'd never heard or it before and was skeptical. But I did it...and I fainted in record time! It was SO validating when it came back positive!
This continues to be a problem and I know that I simply don't do well standing, which is more the result of POTS; and that I have triggers for NCS like heat (I have severe dysautonomia and a complete inability to regulate body temperature, so I think my body just freaks out!). After one too many embarrassing episodes of collapsing in public, I've gotten pretty good at recognizing pre-syncope symptoms and at the very least getting myself sitting down. There are also some medications that can be taken, or in very extreme cases a pacemaker is considered.
I hope this helps you and your daughter get the answers you need!
Prior to my decompression surgery I would have episodes where I would lose all motor skills. The neurologists thought they were seizures but were complexed that although I would go into a completely immobilized state which I could not move or speak, I was aware of what was happening around me. I had several test done to finally rule out seizures, and was then told maybe a psychologist might help, which infuriated me! Thanks to support groups like this one I had other Chiarians tell me they have experienced these “blackout” episodes too.
Okay true this can be related to condition called pots but it could also be an interruption of signal from her brain to spinal cord. Please see a chiari specialist asap. She needs brainwave function test urgently and tilt table test asap. Which both tests are commonly done at same time. Pedatric chiari specialist I know of new York chiari institute. Anyone besides a true specialist can be a waste of time and money. Good luck prayers