Brain stem seizures suspected now??

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LJ-Bain

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So I finally got to see my epileptologist today after 6 months and not really knowing his opinions or getting much feedback from him.

Even with all the local neurologists in my area stating I have psychogenic seizures his gut feeling is that they are epileptic but that he still wants me to see the neuropsychiatrist to cover all bases. I thought for sure he had written me off but I guess I didn't give him enough credit!

He thinks that most neurologists are not trained properly about epilepsy. Which is really a very scary statement...

He is putting me on Vimpat now. By itself though which is interesting since I have been almost all but weaned off Keppra. Although I better doublecheck that! I understand Vimpat is usually a secondary drug.

He thinks my seizures may be originating from my brainstem and that he is placing me in an epilepsy monitoring unit where I stay in the hospital for a week or so.

Just trying to digest this all. This has been quite a rollercoaster ride! Thanks all for the support. I'm sure the ride is not over yet!

The MRI results that have been referred to mysteriously by other docs were just the same as always. Right frontal lobe scarring, incidental pituitary gland cyst and no suspected epileptiform lesions. So nothing too serious thankfully! Just no obvious answers.
But at least there is a plan now!
 
:) I knew it LJ. Let's just keep our fingers crossed that there is a good way to figure it all out and that the meds help you live a more normal happy healthy life. Feels like a victory for us all. :).
 
LJ: OMGosh.. could it be that someone is finally very close to have a definitive diagnosis for you!!! I so hope so. You have really be an inspiration to me and I know everyone else in the CWE forums. Stay strong...

Mary
 
Well as scary as it might be, at least it's a diagnosis, I don't have a definite diagnosis, therefore making it harder to know exactly what to do. Hopefully now you'll get the right treatment and things can be under control
 
He thinks that most neurologists are not trained properly about epilepsy. Which is really a very scary statement...

This has been my philosophy about most neurologists and epilepsy, also. I had to go thru a long and winding road and many painful seizures before I got in to see an epileptologist who took me seriously. Treating Epilepsy is very different than most other brain disorders, since there are many different forms of E.
 
What fantastic news!! After being passed around for a long time, it must feel like such a relief. You have really made me appreciate my fast diagnosis, something I never thought about before. As others said, you are an inspiration to all. Hopefully you have put the worse behind you and can now start getting some answers!!!
 
This has been my philosophy about most neurologists and epilepsy, also. I had to go thru a long and winding road and many painful seizures before I got in to see an epileptologist who took me seriously. Treating Epilepsy is very different than most other brain disorders, since there are many different forms of E.

Valuable opinion from someone whose been there done that. Unfortunately though. :( It kills me to hear of the treatment some people have gone through.
 
Cint: The Dr. I see is one who diagnosed epilepsy and surgically treated a man in Canada who had been having seizures for 20 years, 10 daily, and was repeatedly told since tests didn't pick them up it was something he had to live with. He is now seizure free.
It has been said that thousands of people with epilepsy go undiagnosed yet they also say psychogenic seizures are underdiagnosed so there is a conflict in the medical field.
It is tragic really. A long and winding road indeed.

P-Funk: I am relieved! I should have put more faith in this Dr. because he clearly is taking my case on until he feels confident that I am taken care of. They even say that if the monitoring unit is inconclusive and the psychiatrist feels there is more going on that I will then have an intracranial EEG. Yikes. I'm so glad to have a plan in place. It's funny...I don't feel like an inspiration! There are certainly others with a whack more of health issues than me but maybe my case shows that persistence sometimes does pay off!

juliewishes: this all has been such an eye opener for me. I really think it is very sad that when a mental health issue is suspected some health care professionals show a very different attitude towards you altogether. It should not be this way.
 
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