Posted 4/23/2014 8:38 PM (GMT 0)
I am a 39 year old female and I have been having simple partial seizures for 23 years. They were mild in the beginning- just de-ja-vu and occasional nausea spells and only for the 2 days preceding the start of my period. I did not know what they were for years and always felt a little crazy when I tried to explain them to doctors... I was told it might be vertigo, at another point I underwent tests for a thyroid condition--- overall- I didn't get much help from Doctors and decided not to pursue it b/c it didn't impact my life that much. Just before my 30th birthday- I decided to pursue an answer again at my husband's bidding. The seizures had increased and the seemed to spread throughout the month and sometimes I even have seizures up to 20 days in a month and some days I had up to 15 seizures in one day (extreme cases). Also- the seizures still included de-ja-vu's but much greater nausea with occasional dry heaves--- I also realized that they affected my ability to articulate thoughts or answer questions. One such incident happened when I arrived at a client's house (I was a wedding photographer) and when the bride's sister answered the door- I could not articulate who I was and why I was there. It is not that I lose awareness or any physical/muscle movement- and I can continue physically what I am doing (such as cooking, walking, driving)- I just lose my ability to process questions being asked of me and the ability to articulate thoughts... I can say things such as "hold on one moment", "I feel ill"- but if I am in the middle of talking and expressing a thought- I cannot continue. When I pursued the doctor that time (in NYC) - she figured out what it was almost immediately and sent me to a neurologist- who made the official diagnosis after catching a seizure on an Eeg and an MRI revealing what they are calling a structural abnormality in my brain in the left temporal lobe of my brain. I then started seeing an epilepsy specialist -- I have tried 6 different epilepsy meds over the years with ultimately no effects on the frequency of seizures or the intensity. There are still months when I have few and other months that are extreme- I also have had a few incidents when I felt sick for at least 24hours with repeated seizures that were even waking me through the night. The seizures only last a few moments (based on the MRI) but some of the effects can last for upwards of 5 minutes afterward - and I can sometimes just feel what I can only describe as "lousy" throughout the day.
The doctor thinks I am a strong candidate for surgery and I have had a neuro-psyche evaluation and am trying to schedule a wada test. But I bounce back and forth --- b/c surgery seems so extreme and I am afraid of the risks of memory loss and speech impairment- and the thought of cutting into my skull makes me ill. I have lived with the seizures for so many years and have made do- but I am afraid b/c it does seem like the intensity is increasing and they have become more noticeable to others, impacting everyday life-- I am also afraid that someday they will go beyond the simple partial seizure. I remain on Lamictal with the hopes that this would keep such a seizure from happening- but who knows. I have also currently begun to have migraines. I have never heard of surgery success from anyone in a similar situation to mine--- Do you know of any success stories??