Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Possible Atonic Seizures?

Sun, 01/22/2017 - 20:26
I'm in my mid-50s and have always been exceptionally healthy. I began getting lightheaded when I walked and talked in late July, and was diagnosed with Long QT Syndrome in early August. I was referred to a cardiologist because of the LQTS. I attributed my increasing lightheadedness to the beta blocker I was subsequently put on, but my PCP and cardiologist both assure me that my meds are not the cause. I underwent an echo-stress test and basically fainted after 5 minutes on the treadmill; I was perfectly fine until I started responding to the tech's questions. (I say "basically" fainted because I remained semi-conscious as I dropped to the ground). My cardiologist eventually ruled out my heart as the cause of my lightheadedness and referred me to a neurologist. I had an MRI and blood work, but--for some reason--no EEG. The neurologist, too, ruled out the meds I was taking as well as diabetes for my lightheadedness. My cardiologist referred me to a second neurologist, but their first available appointment isn't until late March. In the meantime, my lightheadedness has progressed to the point where I'm unable to walk at more than a snail's pace--and even then with some difficulty--without at least feeling like I'm going to go down. My subsequent research has me wondering if I may not be having seizures. I realize now that I may have been having atypical absence seizures for as long as I can remember (remaining conscious and somewhat aware of whatever is happening around me, but unable to shift my gaze or talk for up to a minute, with full recovery taking several minutes), but have had them in conjunction with what I thought were heart palpitations so I always attributed my symptoms to (misdiagnosed) mitral valve prolapse. And now I believe that, in addition to atypical absence seizures, I may also be having a type of atonic seizure: pressure on the top of my head and shoulders; aura in my peripheral vision; unable to speak, shift my gaze, or move my body; feel like I'm going to black out; legs want to buckle; chin, cheeks, and wrists go cold; eyes blink as I struggle to remain conscious; and gaze sometimes fixes on the ceiling. I somewhat understand what's happening around me during these episodes, which can last for several minutes, but am unable to respond to questions. I feel weak afterward, and it can take several minutes before I can move or feel mentally strong enough to respond to questions. This sudden lightheadedness has quickly and drastically changed my life. I can barely walk from room to room in my own home without experiencing these episodes. I'm in a desperate holding pattern until at least late March, but wonder if anyone else has experienced similar symptoms and whether they've been diagnosed. I'm doing as much research as I can because my doctors are at a loss and it's now up to me to come up with suggested diagnoses for them to pursue. Do these symptoms sound familiar to anyone?

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.