I'm new here..

[flossiebe]

I have been searching the web for months, well almost two years now trying to find the answers to many questions that no one seems to know. I was a nurse for years until late in October 2008 I started having these really bad spells where i was spacing out and reaching for things not there and talking stuff that no sence. So I went to my Doctor that said they thought I was Having Migraines. after taking meds for a few weeks and me trying to tell her that wasn't what was wrong she made me an appointment to see a neur. befor my sceduled appt I was on vacation with my husband and woke up it a hospital after have a tonic clonic seizure.. since then I have continued to have them..and my neurologist says I am having more than one type of seizures..so I am currently Taking Keppra xr, dilantin, and ativan..but the seizures continue.. they have run test when they first started but that has been a year and a half ago..and the seizures are getting more frequent.
I am Scared because I feel differant than before and wonder if it's from the seizures or all the meds...so much i want to share but this is my start...thanks to all

[PhylisFeinerJohnson]

Hi Flossiebe, WELCOME!

I don't know what kind of tests you've had, but it seems like you're definitely due for more testing. Here are some of your options:

EEG (Electroencephalogram) – is used by a neurologist to determine whether there are any irregular electrical activities occurring in the brain which may produce seizures. It can help identify the location, severity, and type of seizure disorder. An abnormal EEG does not diagnose epilepsy nor does a normal EEG reading exclude it.

Video EEG Monitoring – can be vital in the diagnosis of epilepsy and epileptic seizures. It allows the doctor to determine:

Whether events with unusual features are epileptic seizures…
The type of epileptic seizure, and…
The region of the brain from which the seizures arise.

Continuous Video EEG Monitoring – studies the brain waves over time with a patient staying in a special unit for at least 24 hours. Antiepileptic medication is stopped for the duration of this test, since the objective is for seizures to occur so the abnormal brain waves they produce can be recorded.

A video camera connected to the EEG provides constant monitoring, enabling the medical team to pinpoint the area where a seizure occurs and track the patient’s physiological response to the seizure. Continuous monitoring can also help distinguish between epilepsy and other conditions. It can characterize the seizure type for more precise medication adjustments, and locate the originating area of seizures within the brain.

CAT Scan (Computerized Axial Tomography) or CT (Computed Tomography) – may reveal abnormalities (blood clots, cysts, tumors, scar tissue, etc.) in the skull or brain which may be related to seizures. It allows physicians to examine the brain, section by section, as the test is being conducted and helps to point to where a person’s seizures originate.

MRI ( Magnetic Resonance Imaging) – this detailed picture of brain structures helps physicians locate possible causes of seizures and identify areas that may generate seizures.

An MRI offers doctors the best chance of finding the source of seizures. Because seizures can arise from scar tissue in the brain, an MRI can show scar tissue and allow doctors to determine the nature of it. The images produced from the MRI are extremely precise. The information provided is valuable in the diagnosis and treatment of individuals with epilepsy.

Functional MRI – takes images in “real time” sequence and faster than the traditional MRI. By providing information about active brain tissue function and blood delivery, it is more precise and is often used to create a “map” of the brain and indicate where language, motor, and sensory areas are located.

PET (Positron Emission Tomography) — is a scanning technique which detects chemical and physiological changes related to metabolism.

By measuring areas of blood flow and metabolism, the PET scan is used to locate the site from which a seizure originates. A functional image of brain activity is important because these changes are often present before structural changes occur in tissues. The information provided by the PET scan is valuable in the diagnosis of seizure type.

MEG (Magnetoencephalography) – this technique has been available for several decades, but it is only recently that scanners involving the whole head have been available.

MEG is most often used to find the precise point in the brain where the seizures start. While MEG is similar in concept to EEG, it does not require electrodes and it can detect signals from deeper in the brain than an EEG.

MEG is quite useful for a mapping of the brain. It quickly provides high resolution images of the brain, used to compare function in relationship to behavior.

Doctors also are experimenting with brain scans called MRS (Magnetic Resonance Spectroscopy) — that can detect abnormalities in the brain’s biochemical processes, and with near-infrared spectroscopy, a technique that can detect oxygen levels in brain tissue.

Resources:

http://www.ninds.nih.gov/disorders/e….htm#152763109
http://www.netdoctor.co.uk/diseases/facts/epilepsy.htm
http://www.med.nyu.edu/cec/diagnosin…onitoring.html
http://www.everydayhealth.com/epilep…roimaging.aspx
http://www.nyuepilepsy.org/cec/diagn…ostic/meg.html
http://www.epilepsyyork.org/diagnosing%20epilepsy.htm
http://www.theuniversityhospital.com…ostictests.htm
http://www.mayfieldclinic.com/PE-SPECT.htm

[Cint]

Hi Flossie,

I know it's difficult to come to terms with, but, that sounds a lot like how my seizures developed years ago. Initially I was having simple partial seizures and complex partial, but the dr. at the time dismissed them until I ended up in the hospital from a tonic clonic.

If you're neurologist has already done testing--EEG, MRI, fMRI, SPECT, etc., and they don't know what's causing the seizures, then maybe it would be of help to see an epileptologist instead of a neurologist.

I do hope you find some relief soon.

[Nakamova]

Hi Flossiebe, welcome to CWE!

The meds can definitely be affecting how you feel. anti-epileptic drugs are powerful -- they have to be to cross the blood-brain barrier, and they can have a huge impact on energy, mood, cognition. Make sure to mention how you're feeling to your neurologist.

Unfortunately, it can sometimes take awhile to find the right med or combo of meds to control the seizures while minimizing side effects. I agree with Cint -- it's worth trying to get the best neurologist/epileptologist who can give you the best advice about treatment options. In the meantime, keep a seizure diary (if you're not already) where you keep track of seizures (oranything that feels weird), and also meds, side effects, and anything that might be trigger. Triggers can be any of a variety of physiological or emotional stressors -- anything from fatigue, to hormones, to low blood sugar, flashing lights, to something in your diet. If you can identify a trigger and avoid it, that's a big plus. The diary can also be useful to show your doctors.

Best,
Nakamova

[flossiebe]

Thank you for your input...the links i am looking into...I have had an EEG, CT, and MRI...I am starting to feel like my current neurlogist is giving up on me because I have no insurance and have been paying out of pocket..He is making me an appointment with a Dr. that only treats seizure patients but i am having a hard time getting in because they on't want to see self pay pts..never thought i would see the day people would rather have insurance pay than cash.what i don't understand is alot can change in a year and a half, why havent they repeated some of the test? my CT, and MRI came back ok but what about now. I have lost a sister to brain cancer at 21 and currently have a brother who is terminal with colon cancer. The doctors don't seem to think its a big deal.I just feel lost ..thank you for your help

[PhylisFeinerJohnson]

THEY DON'T WANT YOUR MONEY AND THEY THEY DON'T WANT TO SEE YOU? Plus, they're not interested in your family history? Screw them and find another doc.

Here's a list of neurologists recommended by eforum members of the EFA, based upon positive personal experiences:

Dr. Donald King, Medical College of Georgia, GA
Dr. Suzette LaRoche, Emory Epilepsy Center, Atlanta, GA
Dr. Joseph Smith, Medical College of Georgia, GA
Dr. David Villasanna, Kennestone Neurology Associates, Marietta, GA

I hope this helps, because your docs certainly don't seem to be helping you!

Good luck...