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.
Hi, Thanks for posting, it
Submitted by Anonymous on Fri, 2020-01-17 - 09:56
Hi, Thanks for posting, it sounds like you’ve been through a lot. We are glad to hear that you’re scheduled to see an epilepsy specialist, (epileptologist) to explore this further. It’s important that you review any changes inside effects, behaviors, moods and symptoms with your epileptologist as well. Documenting these episodes in detail, (like you’ve done in your post & with your psychologist) providing a thorough medical and family history (if possible), will be very helpful to review with your healthcare team. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking these episodes you’ve experienced, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other therapies or personal experiences, that may affect seizures and wellness, which can be shared with your healthcare team. Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors' visits, and how to take control of seizures, seizure first aid & safety. Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsyAdditionally, you may always contact our Epilepsy and Seizures 24/7 Helpline: epilepsy.com/helplinewhere trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org.