ellief,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here to assist you. Look into the following forum on headaches:

http://neurotalk.psychcentral.com/forum32.html

Our shoulders are here for support in many ways. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Thanks for the warm welcome!

Does epilepsy just mean someone that has seizures or is it a disorder where you have seizures? Just trying to understand if there is a difference between "having seizures" and being defined as epileptic.

I had a few more bad episodes this weekend. Fell on the stairs during one, dropped a bag on another, and having jerky tremor during them now. I have another call into my neurologist this morning to hopefully get me OFF amitriptyline and change the gabapentin! My rheumatologist mentioned trying lamictal. Anyone know if that will help fibro too?

Thanks for the support... I feel like I'm crazy and just need to vent on here.

Hi ellief,

Epilepsy means a person is having a seizure disorder another words the seizure happens more than once. When a person just has a seizure it means that they have only had one or two seizures in their life and then the seizure stops. Epilepsy is caused by to much electrical activity in the brain. A good example of this is a thunderstorm. I'm sorry that you had more seizures I was on lamictal at one time I don't know if it will help the fibro but keep your eyes open for a rash and any skin itching. Many people have broken out with a rash after being on lamictal for just a few days. This happened to me and I had tiny red spots on my skin that looked like pimples and my skin itched like crazy. If this should happen to you get off the drug IMMEDIATELY. I wish you the best of luck and May God Bless You!

Sue

Got my EEG yesterday and had two seizures during it.... I'm shocked ... my body never cooperates during tests, so I'm pleasantly surprised something was caught on paper. Diagnosed with Temporal Lobe Epilepsy and started on Keppra. Here is to a new start and feeling better! Cheers!

Hi ellief,

I'm glad to hear that they were able to catch your sz. when they didyour e.e.g. but I'm sorry to hear that you have epilepsy. Just like you I have Temporal Lobe Epilepsy. My seizures start on the right temporal lobe. I was on Keppra last yr and it increased my seizures like crazy plus it made me feel exhausted no matter how much sleep I got. If I may ask did your Dr. tell you what type of seizures you are having? I've found taking Diamox, mysoline, and vimpat the best 3 AED's (seizure meds) to reduce/stop my seizures. Also taking vitamin B12 helps me a lot. I wish you the best of luck and feel free to ask me anything in regards to temporal lobe epilepsy anytime. I've had it for 39 yrs. now. May God Bless You!

Sue

I am happy they have found out about the seizures and have started to have you on meds to control them. I am taking Keppra it has seems to help me. My doctor wants to keep me on it to help with the surgery I had, which has control my seizures. On meds one will work for while others have problems. So take you time to find out what works for you. Please keep us up to date. My thoughts and prayers are with you.

Darlene

I read somewhere that 80% of people will have an [U]unprovoked[U] seizure during their lifetime. I have seen several definitions of epilipsy, and they differ somewhat. All state that epilepsy is a neurological condition involving electrical activity of the brain. Some say that epilepsy features seizures which result in loss of consciousness. I'm not sure that is accurate.
Focal seizures can be localized to a specific area of the brain and typically do not result in loss of consciousness. Complex seizures may have altered consciousness, but not loss of consciousness. Not all seizures are grand mal/tonic clonic with motor symptoms and loss of consciousness.
But, I think in general that epiliepsy is defined as recurrent seizures which must be controlled by medication. (or surgery if medication cannot control the seizures).
I'm happy you have a diagnosis. I hope your treatment is successful.

hi Ellie here's a hug

So strange that this happend as you were getting off the neurontin. In 1999 I saw a neurologist who die the VEEG and it didn't show a seizure but I had a wierd episode not really like what my normal "episodes were like at the time. I have had all kinds of seizures and at that time was hainvg cmplex partial seizures I think where I would end up paralyzed at the end but aware of what was happening. Previously in my life i had had tonic clonic seizures, petit mal seizures etc. So when they did the VEEG they took me off all of my meds cold turkey and I went into withdrawal. I was on amytriptyline for FMS and prozac for depression and the neurontin and I think one other but not sure. It was hell. But after I got through that I started having restless legs syndrome. Now I know that that is a common syndrome associated with FMS but the fact that it happened after I had been taken off the neurontin made me think it was caused by the neurontin or rather the taking off of it.

Also, i did lose t least 40 pounds when I got off of it. Now I'm on it again and have gained weight again--sigh. but it sure helps the FMS pain as does the cymbalta i'm on. I knw this isn't a fibro forum but I noticed you also have it and amytriptylene will also cause weight gain. at the time that I was taken off of everything they ended up putting me on trazodone instead and it works better. Only problem is there is a very tiny chance of it causing seizures which is why my doc now is trying to get me off of it and just use the clonazepam for sleep. My problem is that while the clonazepam helps it doesn't fully work.

Although it does suck that you have epilepsy , I'm glad it was caught on the first eeg you had! i have only had on positive one and that was back when I was 13. I now have tonic clonic seizures again. But that is another story

Take care and I hope your med helps you. We all react to medications differently so this could be the right one for you or you may need to have more than one. I personally can't take depakote(rash all over) and mysoline(hallucinations and severe vertigo) And several other just didn't work like tegretol and the fist one I was on was dilantin and it stopped working while in high school. so, there is always a chance that you may have to change meds over time or in the beginning if this one isn't working. i know it is a major pain but they will find the right one for you so don't give up hope and know that many others have gone through this and are here for you Take care,
Sara