The Epilepsy Clinic

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Rae1889

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Okay, so I had an appointment with the Epilepsy Clinic on Wednesday and they were FANTASTIC! I couldnt believe it. I expected people more stuck up and condescending than my single neurologist, it had to be worse with even more of them in the same building. but no... The nurses were awesome, we chatted and literally spent 45 minutes going over my history, and writing down from birth things that have happened that could explain this. She had a cheat sheet with her and asked all these questions. Things like, How were you born? (forceps, suction, c-section etc) Have you ever had chicken pox, measels, etc? Have you ever had febrile seizures or infantile spasms? Have you had menigitis? Head injurys? birth control and which types? allergies? vegan or vegetarian? drugs or alcohol? pregnant ever? abortions or miscarriages? broken bones? big fish eater? family history? absolutely everything. Even what I use to clean with chemical wise.

Then the neurologist saw me and chatted for a bit. Went over his thoughts and then hooked me up for an over night EEG. Well it didnt end up lasting that long, as they ended up having to need it for an emergency, but what he did see he didnt like. He said that compared to my last EEGs, this one was incredibly abnormal. He said the right side of my brain would "go to sleep" even when I was fully active and talking. and would stay asleep for short periods of time. at one point up to an hour. and the left side would attempt to compensate by overworking, or it too would short circuit and I'd have an absence seizure. Anyone heard of this? He wants to know why this is happening, and only with my EEG since the ICU. He also wants to admit me for a week to figure this out. As he isnt sure if I'm going to need another MRI or CT scan because he cant tell what caused this. and if this is the event that put me in the ICU in the first place. I also mentioned the seizure I had that started after I had hit my head on the floor from fainting or possible atonic seizure. and then later had weakness. He thinks now that that could have been a tiny stroke or something else. But mainly thinks this is what put me in the ICU. (as my left side was severely weakened and unfunctional after I had woken up and remained like that for a while. I still have weakness, but not as pronouced.)

So just thought I would share, that I no longer have a #&@()! for a neurologist, I have a kind, caring and helpful neuro-surgeon and a team of nurses. Might I also add that they are at my beckon call!!! I have a phone number to call that is 24 hours, and leave a message that they will get to in between patients. The only downside is that it is a little hard to find.

Google Map 707 McDermott Street Winnipeg Manitoba, and see if you can find it with the street view. I'll give you a hint. it is right after 705! lol
 
Rae,

This is such good news!!!!!

I am so happy you've finally got a good doctor, and he is on top of the problem. You have been through so much.

A few months ago when I read your post about how the ER treated you, I was really mad. But let's forget about them. Now...... You finally found a doctor who has made an accurate diagnosis. Jackpot!!! :woot:

Now, when he gets the seizures under better control for you (which I know he will), that will be the ultimate best!!!

<<<<< Happy Hugs! >>>>>
 
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That's awesome Rae. :woot:

Stacy once had a qeeg and the doc told us she didn't understand how she was walking around and talking to people because her brain was basically in a deep sleep pattern while she was awake. I kidded her that she was a real zombie and we shared a laugh about it. Neurofeedback helped normalize that problem for her.
 
woooooooooohooooooo

that is SOOOOO cool, Rae! I am so very, VERY happy for you! Hopefully, they can get all figured out.
 
Wow, people sure aren't that thorough here!

One day i'll win the lotto and be able to go private lol.

Glad that it's working out for you now, and you're getting better help :D
 
I am very happy for you and it's great to find a doctor that specializes in Epilepsy! I was lucky enough to find out on the 21st that I now I have an epileptologist and will be sent to the epilepsy clinic animals be put in PT and be treated better for migraines which was by adding Zonegran. So far so good.
I hope things continue to go well with you and the service you're getting. I look forward to meeting my epileptologist more. i had her twice before along with her nurse but didn't know it. But I could tell by how they seemed to know much more and spend much more time with me trying to figure outthe causes etc. I realized real quick that my care would be much better. Now I won't dread going to Neuro to see another Neuro each time but now an epileptologist Lol

Very happy for you and keep us posted on what they find and your progress :)
 
Hi Ray, is it hard to get in to The Epilepsy Clinic? Did you need to wait 8 months? I am asking for my wife she needs better help.
 
where in canada do you live if i can ask?
 
hmmm sorry can't help you there, but try chris515, he's there and may know.

in majority of places however (other than ontario of course and possibly montreal), it takes awhile. you get put on a list and depending on the severity of the epilepsy it can take a couple years. trust me, it sucks to sit and wait but on the other hand if you get bumped up that means your E has gotten worse, so it's a tough road either way.
what's going on with your wife? how long has she had E, does she have a specialist, etc.?
 
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