Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Definition of 'controlled'

Mon, 09/18/2017 - 21:13
I was diagnosed with right temporal lobe epilepsy in January, based on symptoms I documented and confirmation of a spike in my EEG. My neuro put me on 150mg of Lamictal and it's helped, but I still have occasions where I'm experiencing tingling around my head (which I associate with auras) and the kind of anxiety that originally led me to the neurologist in the first place. My second EEG (taken this month) showed the same kind of spiking, but my neuro declared that the epilepsy was 'under control'. I have a background in a hard science, so I was surprised with this diagnosis because I was expecting the EEG results to not show any spiking... Is this a misconception? I'm not terribly trusting of doctors, based on past experiences... and need to do as much research on my own as possible. Otherwise they tend to 'wave off' concerns as inconsequential. So I'd appreciate hearing from others with this experience. Thank you in advance for any replies!

Comments

Have you discussed that you

Submitted by Amy Jo on Tue, 2017-09-19 - 11:53
Have you discussed that you still experience something you associate with seizures (btw seizure auras are actually seizures)?  It could be this doc is a bad fit communication wise for you but know that unless you speak bluntly/clearly (which is not to say rudely), these are busy docs who may think that you are asking/needing something else.There is a different line for everyone. These medications are serious drugs so it's a bit of an experiment with each patient to find the optimal setup balancing seizures and side effects of seizure medications.  If you say you think there's a problem be prepared for more fussing over finding your sweet spot by increasing medication and such. If you want to be very clear, ask to trial a higher dose of your current medication (which is very low given other posts).

I was also diagnosed with

Submitted by Lecia Ann on Wed, 2017-09-20 - 11:02
I was also diagnosed with temporal lobe epilepsy, and was on 150mg of Lamictal twice a day.   My neuro just recently increased my dose to 200mg twice a day as a result of a seizure brought on by the strobe light during my EEG.    The last time I increased my dose it caused a lot of bloating and weight gain.   This eventually tapered off and my body went back to normal.   With that being said, I am for now only increasing to 200mg at night.    Has anyone else experienced the bloating?  Also, he just put me on folic acid.   I took it for only one week and noticed some side effects.   I didn't feel like I could concentrate, and felt nauseous and dizzy.    I haven't taken this week, and have had none of these symptoms.    Not sure if I had a virus or not, so I'm going to try it again tomorrow to see if they return.   Just this morning I was reading about the negative effects that Folic Acid can have on patients taking Lamictal.    It stated that Folic Acid can reduce the affects of Lamictal.   Now I'm confused.      

Try think a little and using

Submitted by just_joe on Wed, 2017-09-20 - 18:41
Try think a little and using common sense..Tests are used for many different things. The EEG shows the electrical output coming from the brain. How many different ailments come from the central nervous system? The EKG or ECG shows the electrical output coming from the heart.. It to has spikes. Some show one thing while others show another. I felt fine but Doc had 4 EKG stripd done because he thought there was something wrong. I wasn't having a heart attack. My blood pressure was fine. all the strips showed the exact same thing. But Doc said if I go to the emergency reeom because I have chect pains and they say everything look good and want to release me I am not to leave. I have an irregular heart beat. I have A-fib with intermittent A-flutter. So different spikes show different things. Yes some spikes in your EEG can be for epilepsy. Waves can too. It all depends on what one is looking for. Alzheimer's. Parkinson's and many other ailments use the EEG. So yes a person can have spikes in their EEG that do not refer to epilepsy or seizures.Now  have you discussed the tingling in your head? Have you told them about you thinking you might still be having some seizures? If not then why haven't you asked them? Adjustments to dosages could have been made which might stop those tingles or seizures. Unless you talk and ask questions you may never know.Controlled is what people want. Neurologists want to help you control your seizures. However it is how one looks at CONTROLLED and understands it. Controlled to some means no seizures what so ever. Ask your neurologist. My seizures have been controlled for many years now. I still have one every 8-14 days and they last a few seconds. I'll take that since the scar tissue causing my epilepsy is in more then one lobe and the last 4 of my neurologists have all agreed with me that I will never be completely seizure free. Controlled yes seizure free NO

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.