Need your opinions on this EEG reading..

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

momof3boys

Account Closed
Inactive
Messages
2,284
Reaction score
0
Points
0
so back in March 2011, when I had my VEEG, my neuro afterwords said that I had "Potential seizure activity" which was his reasoning for putting me back on the Keppra XR, and stated that the seizures he saw me having on video, that were not registering on the EEG, were non epileptic seizures. But, when I was put back on the Keppra XR, the seizures stopped. Which indicated to the psych dr that if they were non epileptic seizures like this neuro said they were, treating them with a anti seizure drug like Keppra xr, wouldnt stop them from coming. And to top it off, I never had simple partial seizures, where I remained consious through out them, and they lasted only a brief time, prior to the VEEG. Where as prior, I was very well controlled for over 10 years with Keppra XR and Carbatrol ER with my seizures, and my last known Complex partial seizure was two months after the birth of our second son, in July 2005.

That being said, with having to deal with the seizure stuff this neuro has put me through, and not wanting to help me with it, I wanted to request my medical records and see exacly what was said in the records.

So I requested them and got them in the mail today.

This is what my records say for my VEEG: March 7- 12, 2011.

"Intermittent left temporal slowing which was mild, she also was noticed to have occasional bursts of generalized irregular theta activity which some embedded poorly formed spike and slow wave complexes usually occuring in in a diffuse pattern".

They also added, which is not correct...

The patient did not have any seizures during her hospital stay, but did have multifple episodes of unresponsive and hyperventilation with tearfulness and generalized body trembling and twitching lasting between 2 and 5 minutes.

Now the correct information should read... " the patient during her hospital stay had episodes of not being able to responde, with tearfulness and twitching on her left side of the her body, lasting between 1 to 2 minutes.

They go on to say...

The patient had approcimately 9 of these. These were not associated with any epiuleptiform activity on EEG. According to the patient, and her mother, who witnessed the episodes, these were not consistent with her usual seizures.

Which they were not because prior to this, I was having complex partial and grand mal, and I was unconsious through them, where as these, I was consious through out.


Then it goes on to say...

The patient was placed back on Keppra but not on Carbatrol and had a 24 hour period of not having any seizures prior to discharge in stable condition.

Well, of course the seizures are going to stop if they are epileptic... because the Keppra was given back to me the day prior, and the seizures that are epileptic, are going to stop becuase Im being given a anti seizure medication to treat epileptic seizures! :roflmao::soap:

The fact is that this neuro never told me anything about having any waves or slow areas on my EEG at all. All they indicating to me was that those little things that came up, were just "potential seizure" activity areas.

So would you think that reading the above statement that what this EEG says, would indicate epileptic activity? Because my whole life, of all the neuros Ive seen, they all have said my EEGs have came back this way and said Ive had Left Temporal Epilepsy and Ive been treated with Anti seizure drugs that worked great for me.
 
I've never seen my EEG (requested them though!) readings, so I wouldn't have the first clue. What I would do though is send them to someone else, along with your personal account/history. Even if it's someone out of state. And get their opinion.
 
Thats what were going to do. I wanted to see what he was not telling me. Even the psych dr who he referred me to couldnt make out why he would referr me to her, and then she finds out Im taking Keppra XR, a anti seizure drug used to treat epileptic seizures, and the seizures since had stopped. Why would I be going to her, and he (my neuro) know the seizures are being controlled) but still say they are non epileptic seizures? She kept telling me she didnt know why he would send me to her? But she saw no reason for me to continue seeing her as to everytime I would see her, I had nothing new to report to her. She would ask if I had any of the seizures he was reporting were non epileptic? My response, "Nope, no seizures since being put back on Keppra XR". She looks at me and has this big question mark look on her face. Her notes clearly states that I have no mental issues, and it states that when i had the reaction to the lamictal, the swelling in my glands were huge, and once taken off that, and put back to my regular dose of Keppra xr, everything went back to normal, that I became a normal, happy human being again!"

That was my last visit with her. That there told her that the Keppra XR again, was doing its job, and controlling the seizures, so whats the point in wasting my time going to her when she and I can clearly see the keppra is doing its job by controlling the epileptic seizures, and I needed no further visits with her.
 
Yeah, that's bizzare, EVERYTHING I've read on NES or PNES suggests that AEDs won't do any good.

I have a very difficult time trusting doctors.
 
Yeah, that's bizzare, EVERYTHING I've read on NES or PNES suggests that AEDs won't do any good.

I have a very difficult time trusting doctors.

Yeap, the pysch dr who that neuro referred me to, said the same thing. She couldnt figure out why he would referr me to her and also see he put me back on the Keppra and see the seizures stopped? :ponder::roflmao:

Then, I am now seeing a new neuro who has heard of this neuro and said that doesnt make sense at what he is doing or saying... so god only knows what is going through this guys head! :ponder:
 
At least your new neuro is willing to question the old neuro. I've had second opinions before where they defend their fellow docs at all costs and circle the wagons, saying things like, "its difficult to know for sure, he has a good reputation, I'm sure he knew what he was doing.."

The fact that the new guy at least will question the old doctor makes him sound like a keeper.. provided he does the other things well.
 
That's crazy! You've had seizures since you were a baby!!

Right, that is what I said! I figure if they have documentation that this has been happening to her since she was an infant. Where is the logic?

And he was so vague with explaining how you had epilepsy, and then suddenly it wasn't epilepsy. No explanations! It just seems so whacky. So many things that are not taken into account, ugh im pissed for you Kristen.
 
Makes no sense and let me say it again NO SENSE.. Slowing, spikes, typical in epilepsy. I have slowing and some spiking myself. Crazy. I am so discouraged to once again hear about someone who clearly has epilepsy which is controlled with an AED all of sudden being told yes, maybe, whatever. So sorry Kristin you do not deserve this.

Hugs to you...
 
wow, yeah of course you wouldn't have the seizures on meds. I'd think they'd do tests off meds to measure how many and so fourth. I'm going to ask my Neurologist about that, cause it wouldn't make sense to do a test if you're taking meds if they prevent seizure activity.
 
Thanks everyone... Its just so darn frustrating with that neuro. His whole office is screwed up in the head in my opinion!
 
Back
Top Bottom