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.

Advice for first doctor visit

Thu, 01/16/2020 - 15:13
I have been having strange symptoms for almost 3 years. It started off as complex scenic hallucinations that occur in the dark room - mostly at night. Then after I fall asleep I would be jolted awake and the visions would be everywhere. Everything I see is I front of my vision, not in my head. nothing is scary, most of what I see is familiar: cartoons, people, landscapes, shapes, colors. it’s like a hologram. Also during the day I may get blurry vision, wiggly lines, sizzling in my vision, followed by a sense of confusion, exhaustion, uneasiness. Several times I did not know where I was or why. After these types of incidents I am low, wiped out. Sometimes for days. I call it my spell since it seems to go on for a while and then I will get a break. Once I felt like something was pushing my shoulder down from above and then I could only walk to the left after that. Another time what I was reading switched around and looked like Spanish. I have an oncologist and when I told him about it he sent my to a cancer neurologist just to be sure. MRIs, spinal taps, eeg, balance and vision tests all were normal. Even did a comprehensive sleep study. From that it was proven that I was literally jolted awake, not dreaming when I have these episodes. No diagnosis. I am seeing a psychologist monthly to track my symptoms. No mental illness, no psychosis. I finally decided to get an appointment with a neurologist that specializes in epilepsy since what I am experiencing falls closer to that category. I feel like I am in the middle of an aura. So any advice on what to ask the doctor would be greatly appreciated. Anyone with similar symptoms I would also love to hear from you.


Hope you have been able to

Submitted by Patriotrehab on Tue, 2020-02-18 - 18:20
Hope you have been able to complete your 5-7 day VEEG EMU stay and got some answers! That’s exactly what I was hoping they would do for you. Sometimes they get answers, sometimes they don’t. But, I sure hope they did and I hope they are getting you the right treatment. 

Thank you! I go in tomorrow

Submitted by Suzane2020 on Tue, 2020-02-18 - 18:49
Thank you! I go in tomorrow for the video eeg. I have been having  episodes every night so fingers crossed! 

Hang in, there.  It's not

Submitted by kwmfc0730 on Mon, 2020-02-24 - 20:00
Hang in, there.  It's not easy going through this.  I have nighttime events that are 75 percent better, now, after 3 months of treatment with meds.  I ruled out a bunch of stuff on my own, too. Keep the updates coming.  You are not alone.

Sign Up for Emails

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