I was recently diagnosed (after a syncope attack) that my eeg showed I had sharp wave activity with phase reversal localized to the left temporal lobe. I also was diagnosed with basilar migraines. I have no headaches, just flashing lights with my migraines. My neurologist told me I could have been born with the epilepsy or been injured someway or had a high fever at some time or another. It could have been all 3 because all 3 have happened to me.

I have been "quirky" all of my life and realize after researching this type of epilepsy I have had "spells" all of my life. I am an artist and writer, very religious (an inter-faith minister) and am a socialworker. My memory seems fine but I am forgetful of little things, like finding my keys or glasses. Lately though I have noticed when I get those strange feelings that afterward I am confused for a period of time.

This came as a shock to me and for some reason - even though I know I have had these spells all of my life, I have developed anxiety and depression. I think it was brought on because of the medication they put me on because I had thought originally "If I have had this all of my life, why should I let it bother me now?." I had to stop medication because of the adverse effects (Topamax) and still haven't pulled out of it. Because I am in mental health field and have treated others with these problems, I know I need help. I thought perhaps if I could interact with others who have dealt with this strange condition and who also, cannot tolerate medications due to chemical imbalances, perhaps it would help me cope. I am also seeking psychiatric help.

In one of my fits of deep, dark depression from the medication and maybe from a seizure, too, I cut off my long, beautiful hair. At least I didn't cut off my ear like Van Gogh, who I understand, also suffered from this malady or as some of the ancients called it "a sacred gift".

Is it a curse or is it a gift?

Welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. There is a great number of dear ones to help you out. We are all here to assist each other as possible.

Again welcome, looking forward to seeing you around. May God be with you.

Darlene

Hi,

Welcome to neuro talk! I've had right temporal lobe epilepsy for 37 yrs. Just like you I started with migraine headaches which led to absence (petit mal) and complex partial seizures. Over the yrs. I had brain surgery done to help reduce my seizures since AED's (seizure meds) didn't help me that much. You should go to a University hospital where they have an Epilepsy Center and see an Epileptologist (Dr. specializing in epilepsy.) It was there that I worked with a neuropsychatrist, and neurosurgeon who found out the cause of my seizures and what meds were the best to take. Start keeping a journal and write down what time of day/night you have any seizure on a calendar and take note if you have been sick or if there's a low pressure with the weather. Also stay away from nutra sweet it has been proven that nutra sweet can trigger seizures for many people because it causes more electrical activity in the brain. If you want to get more info. on Epilepsy and to find a Epilepsy Center in your area you can call the Epilepsy Foundation of America at 1-800-332-1000 or you can check out there website. Here's wishing you well and May God Bless You!

Sue

Thank you for your support and advice.

I have had a terrible time accepting the fact something is wrong with my brain even though my work encompasses working with individuals with dementia. I suppose that may be part of my problem.

There is an Epilepsy Center about 100 miles from where I live. I will get in touch with them. The neurologist who diagnosed me was upset with me and dropped me when I reported the Topamax was sending me into a deep depression. I saw my family doctor and he titrated me off it - called the neurologist and told him what it was doing. For some reason the neurologist felt the Topamax was the best drug for me because it treated both the migraines and the seizures and he refused to treat me anymore. If I would have continued on it, the depression would have killed me -not to mention some of the other adverse effects - especially the confusion and "fog".

Now I am having panic and anxiety attacks. I'm on Xanax and taking a supplement called Epi-Still which doesn't seem to be of much help.

I will do as you say and keep a record. I will also ask my doctor for a referral to the Epilepsy Center. Thank you so much - it helps to know someone cares.

Hi Luna Marie,
I tried taking topamax also and it messed me up causing me to have many more seizures. You might want to try to start taking vitamin B12 1000 mcg. a day. You can buy it over the counter. I've found that taking vitamin B12 has reduced my seizures greatly. Also cut back on carbs and starch foods to much of this type of foods and beverages can trigger seizures. That's why I've gone on the ketogenic diet for my seizures. The diet has worked great controling my seizures and I take a lot less meds. Just like you I live over 100 miles from the Epilepsy center I go to but take my word it's well worth it. Here's wishing you well and May God Bless You!

Sue

This past week I was hospitalized because I had convulsions, chest pain, and a major panic attack. My heart was okay. I came out of the convulsions, but had depression, anxiety and confusion. I was kept overnite at the hospital. The next day I was asked all kinds of questions about my mental state. I am a socialworker, I know what they were getting at. No one asked me about my seizures or wanted to know. As far as they were concerned, I should see a psychiatrist - (even my own doctor).

The previous week I had hurt my hip and groin area. I couldn't stand on my leg, sit or sleep for the pain. The PA at my doctor's office, noting I was allergic to codeine, found a drug that didn't mention codeine as being an ingredient and prescribed it for pain. I didn't read the prescribing information and took it. I trusted him. Well, guess what? He gave me Ultracet and it specifically states not to give to people with seizures or epilepsy or to people who are allergic to codeine. I can't believe it!!!! I am so fed up with this. You have to watch everything nowadays and be your own doctor to protect yourself. Now I'm considered mentally ill. I have written my doctor a fax pointing the error out to him and asking him to make a note of it in my medical records and my history. I never knew people with epilepsy had all these issues to deal with. It is a terrible thing when even professionals don't take the time to make sure we are cared for properly and everything is done to ensure our safety. I'm very angry, hurt and disappointed. I definitely will see an epileptologist. It must be so frustrating and horrifying to have children with this condition and to have to fight every minute and watch every medication to ensure your child is going to be safe.
I guess I am venting - it helps. Thank you so much for your support and just knowing I'm not alone in this thing. I have started on the Vitamin B12 as a sublinqual - thank you. I can't do the ketogenic diet - high bloodpressure and high cholestrol - wish I could. Luna Marie

Hi Luna Marie,
I'm so sorry to hear that you had convulsions and have had a lot of pain. If I were in your place I would take legal action and report this Dr. to the Medical conduct board for not paying attention to your medical records and not asking you about your seizures. Epilepsy can be hard at times especially when others around you can't accept it. I don't feel that you have any mental problems you are just upset about the medication causing you to have seizures plus being tired can cause seizures also. My advice to you is when you get to the Epilepsy Center and see a Epileptologist to also see a neuropsychologist. I had to do this before and after I had my brain surgery the neuropsych was able to tell what side of my brain I am using the most and for what. The thing that I found that was very interesting was that my speech was split on both sides of the brain not just on the left side. Take my word these Drs. at the Epilepsy Center are way ahead of any family Dr. or neuro. I've ever seen in all my life. As far as the ketogenic diet goes you can go on it because it will lower your cholesterol. I lost 80 lbs. in 4 months while on the diet. Here's wishing you well and May God Bless You!

Sue

Luna Marie

You have every right to feel angry with the care you received in the hospital. Like Porkette, I'm 38 y.o. I've had E since early childhood, but diagnosis & treatment didn't begin until my complex partial secondarily-generalized at age 26. Many medications were tried and I never gained control of my seizures. At age 35, I finally saw an epileptologist. My neuro was at a loss and had the good heart and admitted that my case was out of his league.

The epileptologist has been wonderful! He tried a few different medications, dosages, and quickly decided to begin testing (to check surgical candidacy). In March 2006, I had my left temporal lobe resected in hopes to finally gain control. I've hit some major bumps in the road since, and my epileptologist has helped me many times. When he couldn't help, he sent me to those who could help. Epilepsy Treatment Centers are worth the money and travel.

Mayo Clinic in Rochester, Mn. is where I go. Very best wishes and hugs to you!
Take care,
Shez :heart:

Dear Friends:

Thank you for giving me hope. I thought I was alone in this thing and that was what made it so unbearable.

I will certainly follow your advice and Tuesday I'm calling the Epilepsy Center.

Love, Luna Marie

No you are not alone by a long shot. I have had epilepsy since childhood, was diagnosed at age 14, and like you found no help with the meds. Finally after 35 years of seizures and many good years wasted, I saw an Epileptologist. No doc had even so much as mentioned one before so I do blame the general neurologsts for not referring me on sooner when their meds did not stop my seizures. The first seizures I was aware of were sinilar to your strangefeelings I called them funny feelings. Those progresssed to Complex partials at age 14 when hormones and astress of highschool kicked in. Only when i was in my 40's did I get to an epileptologist and it was he whop mentioned sugery. Much of my younger years were not utilized to their fullest, but I did have surgery 10 years ao. I have no lost consciousness since and take one med daily. It made a huge difference in my life when I got to the Comprehensive Epilepsy Center and the Epileptologist. Make sure there is a Certificate on the wall saying that the doc has completed a Fellowship in Neurophysiology, (possibly Electrophysiology)or in Epilepsy. Only then are they a real Epleptologist. Welcome to the club. You are not alone. More than 3 million Americans have epilepsy! It is the most common neurological condition next to headaches. Tattoo