Eeg's

[POTLUCK]

Angela-certainly sounds like they may correlate to me. Are you seeing a neuroogist?

[POTLUCK]

neurologist

[issie]

I have the dilated venous malformations in my pons area, close to my brain stem. The docs seemed to be more concerned about that then the meningioma that I have in my left frontal lobe.

I have issues with lights too. I was trying to listen to a lecture last night and had to put my sunglasses on and still couldn't stay. It made me nauseous, dizzy and I just felt awful. It affected my ability to walk straight too. It's very frustrating when it happens. I couldn't concentrate on anything. It was just noise in the background and the longer I tried to sit there - the worse I got. There was an overhead fan that the blades were making the florescent light flicker even more as the blades turned - so that made it worse.

Ha!Ha! Potluck - we knew what you meant. You can go in and edit your responses and correct it there, without it being obvious.

Issie

[Angela]

Yes Potluck, I go to PHX Neuro Associates, my insurance won't allow for mayo clinic. My neuro doc has prescribed an MRV for the head and chest/kneck as he had noticed my kneck is constantly red and slightly also where my kneck veins go up my throat, after I told him about the DVA noted on 2012 MRI deep left temporal lobe (he wasn't aware because he wasn't my neuro at the time). He doesn't believe it is any relation to POTS though, and still doesn't think I have true epilepsy or siezures. I cant imagine that there isn't some type of connection though. I see flashing lights on occassion too and have issues with light especially when motion or other stimuli is going on, gait issues sometimes like Issie, but never tasted blood or smell burning.

[POTLUCK]

I have been to Mayo epileptology. I initially felt my symptoms might be due to Temporal Lobe Epilepsy, and had not even recieved a diagnosis of POTS. Mayo Epileptology ( Neuro ) was not helpful to me. I had to really push them to get them to look at a disc I brought of inpatient video monitored EEG. They wanted to do an inpatient video monitored EEG, yet were ( initially ) unwilling to look at the results of the test done the same year elsewhere. I have more I would like to say, but I think I am limited in what I can say here so I will just comment that I personally do not recommend the Mayo ( Rouchester Minn.) Neurology Epileptology section.

Not having "true seizures" does not mean you do not have "true epilepsy" if it is Simple Partial Seizures which do not have a physical seizure component. These seizures in the Temporal Lobe are very common and cause a variety of effects in different people. ( As they are occurring in different locations of the temporal lobe of the brain. ) As I noted they are not easily detected on EEG ( ~40%) or even video monitored continuous EEG ( ~60%) so it would be hard for him to say you do not have them.

[foggy_brain]

Angela, just saw this, you wrote that you had eeg showing left front lobe brain waive slowing. Same thing here. In my case, it this was interpreted as being either (1) of no consequence or (2) as indicating a local brain irritation leading to brain dysfunction. I was put on valproic acid. That made me dizzy and it was no help. Don't think I've ever had seizures. I would have liked the eeg to be read by another expert but apparently the reading is time consuming, so I wasn't successful. The indication for this eeg was brainfog, which used to be really bad. I was completely beside myself and had to stop working.