Community Forum Archive

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.


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: 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:, you may always contact our Epilepsy and Seizures 24/7 Helpline: 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,

Also, glad to hear that you

Submitted by Patriotrehab on Wed, 2020-01-22 - 18:42
Also, glad to hear that you are seeing an epilepsy specialist. Depending on the doctor though, be prepared. Even without a history of mental illness...they may still suggest that it is psychogenic nonepileptic seizures (PNES) because epilepsy specialists are trained to ‘question’ this much of the time especially with strange symptoms because as my epilepsy specialist told me “they see it all the time” and that I shouldn’t have taken it personally when he suggested that with me even though I had a documented history of over 19 years before I came to him. Women, especially if you have any history of abuse, are the ones accused of it most when they go their first appointment. Be prepared for the possibility of them asking you to do an extended video EEG monitoring in the hospital though. If they suggest that, depending on how frequently your events are...I would probably even suggest that you ask for a 7 day because 24 hours isn’t usually enough and they frequently misdiagnose people with PNES in the first 24 hours. 

Update: saw the doctor today.

Submitted by Suzane2020 on Tue, 2020-01-28 - 15:59
Update: saw the doctor today. She specializes in epilepsy in women. My symptoms don’t fall into the standard epilepsy box but my auras are also not migraines. I’m scheduled for an eeg next week followed by an extended stay at the EMU, 5-7 days. She’s hoping that I will have some symptoms while there so we can either rule out would or verify it. I have been on a mission to rule things out over these last three years and I am stunned that I stumbled across a doctor that has not accused me of being a drug user, alcoholic or psychotic. Glory days! 

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.

Join Our Newsletter

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