Saw the Epileptologist and it's mostly good news!

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Wobblez

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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?
 
Hi Wobblez,

That's great news that your appt went well & your epitiologist listened.
When your epitiologist suggested that you shouldn't be alone at night, is there any way you could change rooms so your room is closer to one of your room mates.
I hope now you have seen the epitiologist she will be able to get you in for a Video EEG sooner.
 
That's good to hear Wobblez. Appears that this Epileptologist is keeping her finger on the pulse. Her concerns for you sound real genuine and I hope she can help expedite your care.

Best to you.
 
Yes, she seems lovely.

CQ:)...Unfortunately my flatmates are a married couple so they sleep in the master bedroom and i'm in one of the other bedrooms at the other end of the house. That's okay, it's nice to hang out with a good friend for a while. =)
 
Sounds like she's being conservative and playing it safe with your diagnosis and your health -- not necessarily a bad thing in a neurologist. And she's on your side and listens, which is a real plus!
 
It must feel so great to be taken seriously. I'm glad that you have a friend to stay with that understands! You have lots of support from the sound of things.
I hope you can get the 24hr EEG in a few weeks! Here's hoping!
 
CQ:)...Unfortunately my flatmates are a married couple so they sleep in the master bedroom and i'm in one of the other bedrooms at the other end of the house. That's okay, it's nice to hang out with a good friend for a while. =)
Whoops Sorry Wobblez,
I thought you shared with a couple of other single friends lol.
That's good that you have another friend to stay with for a while.
 
AWESOME WOBBLEZ!!
It's amazing the difference between a neuro and an epileptologist ey?! Not that a neuro is a bad thing, but the real E specialist really gives a different perspective, they're so much more 'serious' about the whole thing. Good for you girl!
 
Thanks everyone =)

Thank you everyone. I hope you're all getting somewhere too lately. I do have some wonderful support around me but I think my flatmates were a bit offended by my moving out for several weeks. I had run out of my short term stash of valium and the Epileptologist was insistent that I move in somewhere safer ASAP. it was convenient for my mum to help me pack a few bags and take me to my friend's place the same day as the appointment. I tried to call my flatmate twice but she didn't answer. I feel bad that she is a bit offended but it's not something I can really control. I left her a long note/essay then text her afterwards too. What can you do though...
 
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