Saw neuro - ramblings

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sjconner

sjconner

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I saw my neuro today. At the end of January, he referred me to the epilepsy unit at the University of Colorado. I am waiting for them to contact me about scheduling my "vacation".

I am nervous about going. Partly because I will be going by myself. Partly because I really don't have other people to describe what happens during a complex partial seizure. Most people don't realize what is going on, even my DH. I usually get "why didn't you say hi" or "Susan". Even the oncologist didn't recognize one. I don't generally know it unless I realize that I am doing the wrong thing, there are gaps in my memory or I am in the wrong situation. I am having more memory gaps. They have been really short - I can't find stuff 20 seconds later, Mrs. Conner you already asked that question, mom you just said that, notes to self make absolutely no sense, I just told you that, etc.

I finally gathered the courage to flat out ask my neuro what he thought about anything and everything. He said that I have epilepsy and probably some PNES. (I am going to check in with the clinical psychologist in town.) He thinks that they will see stuff when I go the the epilepsy unit. I am increasing my lamotrigine. I am also taking carbamazepin. They don't play well together; he wants to up my lamotrigine level back to where it was. This will be the last change (YEA!) until he gets info back from the epilepsy center.

Thanks for reading my rambling. I feel the most comfortable expressing this with you. Nobody else I know gets it.
 
Are you being seen at the University of Colorado Anschutz Medical Center (spelling?) in Aurora? If so I just got a referral there myself--I finally asked for a second opinion, and my dad, who is a cardiologist, asked around in his physician network and came up with their chief of Nuero as the best neuro in the state. If that is where you are going they are a really good practice and you will be in very capable hands. Either way, good luck and I hope you make good progress!
 
I understand what you mean about being on edge about everything. I had my 2-week VEEG done on my own too. Usually my Mum would come with me for things like this, but not for this. Maybe because she figured I'd be in good hands or something. My brother visited twice for a couple of hours, and 3 friends came by one day. But, I kind of understand as the center was so far out of the way.
My seizures are nocturnal, and I live alone, so I've never had any witnesses except for my Mum once or twice when she was staying with me.
I was also worried about PNES being at least part of the issue, because prior EEGs have been normal, my first neuro I had two years ago said the seizures are atypical and therefore likely PNES, and I have been having incomplete control on medication. But, I didn't fit the profile as per a psych. exam that everyone gets there, and two conferring epileptologists confirmed that the seizures fit frontal lobe even though the EEG didn't show anything during the 3 seizures I had in those two weeks.
The video portion is SO valuable to the diagnostic process. Try not to fear it. Just because your neuro. thinks some are PNES doesn't mean he is right. The video and EEG will set them straight. Good luck!
 
I go to the Univ of Co. Anschutz Medical Center for my seizures and for my diabetes. They ARE the best in the state. In the Neurology Dept. there are 4 epileptologists. I had my 2nd VNS battery just last April at this facility. There are also neuropsychologists, I had testing done in this 5 years ago because of my memory problems. You are in good hands.
 
Cint said:
I go to the Univ of Co. Anschutz Medical Center for my seizures and for my diabetes. They ARE the best in the state. In the Neurology Dept. there are 4 epileptologists. I had my 2nd VNS battery just last April at this facility. There are also neuropsychologists, I had testing done in this 5 years ago because of my memory problems. You are in good hands.
Click to expand...

Cint have you seen Dr. Mark Spitz or John Corboy by chance?
 
I'd call and see about getting things done instead of waiting for them to call you. It's better to get it over with than worry about it. Also they will be able to figure out what's going on and how to treat it.

During most of my complex partial seizures I blank out, anywhere from a few seconds to a few minutes. I don't know what's going on then and I may not know what had happened before it too. Sometimes I'll just stare and other times I'll do things. I loaded the dishwasher once and another time I scribbled all over a crossword puzzle I was doing. If I talk I may talk back not saying the right words or just slurred speech.

When I start to come out of it I'll be asked questions. Who am I, where am I, I'll be showed something and asked if I know what it is. My husband asked me what his name was once and I called him by the cat's name.

During a simple partial, or aura as some call it, I don't black out but I get confused or disoriented. I know what I'm doing but can't figure out what I'm doing. I'll be asked questions, know the answers, but don't know how to say the word.

What everyone does during a seizure is different so just because this is what I do doesn't mean you are going to do it too.

Try to have someone visit you every so often if you can. I hope every thing goes well.
 
Thank you for all the support.

I called the University of Colorado ... they don't have my records. The neuro's office mailed them to the right address. One of the receptionists is going to fax them. I am so tired.

On the plus side ... I started graduate school last month. I have 100% in everything! So far it is not as hard as I thought it would be. I am taking 3 classes to give me 7 credits this semester. My boss is sorta leaving me alone. The science teacher teaching in the room next to mine has been great support.
 
So, your neurologist's office did mail your records? Did they get you an appt set up at the Univ. of Colorado?

Great for you for starting graduate school!
 
They mailed my records (to the right address @ Univ of CO). I called today and the univ did not have my records. My neuro's receptionist is going to fax them. I will call the Univ at the end of next week to see if they received them.
 
How frustrating. If it's not one thing it's another, right?
 
I wouldn't wait till the end of the week. I'd call them either Monday or Tuesday. It shouldn't take a week for them to get the paper work. Keep nagging them if they don't have it, both offices. They'll get sick of hearing from you and hopefully it will be done sooner.
 
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