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

Luna Marie, Welcome to the group with E, there are MANY of us. I recently asked a childhood GF some questions & she got me to realize I had E since I was very young....but I wasn't diagnosed till 12-13. My one med (lamictal) controlls my tonic clonics (grand mals/GMs) that I didn't find till I was 38. I have complex partials still. I took Topomax once too but had to stop due to side effects too (diplopia, dizzy & headache). Just like someone said, I also get "funny feelings" for awhile after I have a sz. Being forgetful of little things is normal for ANYONE. Yes, we with E forget a little more of the more 'complex things' such as, 'I keep forgetting if you turn right or left, at the gas station' (not imp. but it bugs you).

I'd like to thank all of you who have written me. You have helped me so much. My mood is better, the depression has passed and I'm back to work
with a better, more compassionate understanding of others.

It became very stressful this afternoon and I could feel that funny feeling starting in my stomach but I stopped what I was doing, took a break and went outside in the sunshine just to sit for a few moments. When my break was interrupted, I refused to let that bother me. I guess this will be my life from here on out- knowing the signs of a seizure and taking control. I've always let situations and other peoples' needs control me but I have come to realize if I don't take care of myself, I can't take care of anyone else.

I live in Florida. There is an Epilepsy Center at Sarasota Memorial Hospital which is not too far from where I live. I see my family doctor on Friday and plan to arrange for a referral to that Center and to an epileptologist.

Thank you all for your encouragement and support. I was really in a deep dark place when I signed onto this site. Love & Blessings, Luna Marie