Finally, a doctor who was incredibly thorough (family history, birth, childhood onwards) and very easy to talk to. She listened to the 3 voice recordings I have of people who have witnessed what we think are seizures. She watched the video, asked us lots of questions, took copies of everything and really gave us a chance to talk.
Last week's EEG showed some abnormal activity in the bottom side part of my brain. She didn't explicitly say it but I think she was referring to my temporal lobe. She said it was only minor activity but it matched perfectly with my symptoms (right side twitches, speech issues etc). She is going to chase up the abnormal EEG activity that the first Neurologist dismissed, as well as my childhood notes.
When I explained the 12-18month wait list for a Perth based video EEG, she suggested instead of going to Melbourne for it, she would try and push me through here. As i'm available at short notice (like, hours! The joy of uni) she suggested I may even get in just for a 24hour monitoring in a few weeks!!
She suspects its epilepsy but doesn't want to add Keppra to my Lamictal or up the dose too much further without some iron clad proof. I understand that and I'm just happy I'm finally getting somewhere. I'm upping my lamictal tonight to 400mg daily.
She did say I can't be alone at night and should stay elsewhere because my flatmates sleep right at the other end of the house so wouldn't hear me call out/thrash around etc. She didn't want to give me valium as a safety net/to bring me out of it, instead she said I should just go straight to hospital. Every time. After 5mins of any seizure-type activity....Urghhhhh
So today i'm off to stay with a friend and i'll sleep in her hallway if necessary lol. Luckily we are good mates and my little dog can play with hers. Let's hope I get the video EEG soon!
I'm so relieved something physical has finally been detected! I don't have to feel like they are doubting me anymore.
How is everyone else going?
Last week's EEG showed some abnormal activity in the bottom side part of my brain. She didn't explicitly say it but I think she was referring to my temporal lobe. She said it was only minor activity but it matched perfectly with my symptoms (right side twitches, speech issues etc). She is going to chase up the abnormal EEG activity that the first Neurologist dismissed, as well as my childhood notes.
When I explained the 12-18month wait list for a Perth based video EEG, she suggested instead of going to Melbourne for it, she would try and push me through here. As i'm available at short notice (like, hours! The joy of uni) she suggested I may even get in just for a 24hour monitoring in a few weeks!!
She suspects its epilepsy but doesn't want to add Keppra to my Lamictal or up the dose too much further without some iron clad proof. I understand that and I'm just happy I'm finally getting somewhere. I'm upping my lamictal tonight to 400mg daily.
She did say I can't be alone at night and should stay elsewhere because my flatmates sleep right at the other end of the house so wouldn't hear me call out/thrash around etc. She didn't want to give me valium as a safety net/to bring me out of it, instead she said I should just go straight to hospital. Every time. After 5mins of any seizure-type activity....Urghhhhh
So today i'm off to stay with a friend and i'll sleep in her hallway if necessary lol. Luckily we are good mates and my little dog can play with hers. Let's hope I get the video EEG soon!
I'm so relieved something physical has finally been detected! I don't have to feel like they are doubting me anymore.
How is everyone else going?