Hi. I was just dignosed with epilepsy about 3 months ago. When I had my first one it lasted for over 30 min and of course I landed in the hospital. I had an EEG done and it showed active seizures. I have partial complex seizures and they have been very hard to manage! I now thankfully havent had one for a week now that my meds keep getting increased. I was up to having them 4-5 times a week and it was taking a hard toll on my body. I have noticed that my thinking and speech is a bit slower and gets mixed up. It has been very difficult dealing with them as I also have thoracic outlet syndrome. The thing I hate the most is I have had a couple of them out in public and I get very embaressed by that. Anyone else deal with complex partial seizures?

Hi tos8,
Welcome to the forum I've had complex partial and absence (petit mal) seizures for 37 yrs. now. I had 2 brain surgeries to help reduce my seizures. Take my word the best thing for you to do is to start taking vitamin B12 once a day 1000 mcg., and keep a journal of all our seizures write down what time they happen along with a discription this will help your neurologist and he/she might be able to see a pattern in your seizures. Also take note if your are going through hormonal changes because this can trigger seizures, bright lights can cause them for some people also.
Complex partial seizures are one of the hardest types of seizures to control and they can sometimes lead into tonic clonic seizures (grand mal). I found the best AED's (seizure meds) for me to take was mysoline, and Diamox, I also just recently started the drug keppra and since I got up to the drug level my neurologist wanted me on I haven't had a single seizure.
Stay away from diet soda and anything with nutra sweet in it because the nutra sweet (aspartame) can trigger seizures for people because it causes more electrical activity in the brain. Take note if you have seizures when there's a low pressure in the weather sometimes this can cause seizures also. The 2 main things that cause seizures are stress and lack of sleep. You are probably feeling a little tired because your body may not be used to the meds your taking yet. My best advice to you is to go to an Epilepsy Center which is often found at a University Hospital and ask to see an Epileptolgist (Dr. specializing in epilepsy) I've gotten the most help from an Epileptologst, they are way ahead and understand the epilepsy much better, and they have had me on the least meds. I wish you the best of luck and May God Bless You!

Sue

Thank you so much sue for all the info! There have been many times I know when I am going to have one, have you ever exsperainced that? and if so how do you try to controle it from happening? Some of them I notice by what usally starts with my hand twitching and this can go on all day and then it leads to my whole body and vision change and loss of balance and then usally within the hour of my whole body twitching and all the other stuff I will have a seizure. Another is its like my brain doesnt feel right, its like its just all over the place. And then the times I dont know when im going to have one at all and it just happens. I am not aware when I do go into a seizure and I cannot get myself out of one unless some one is there with me and knows how to handle it. Some of them im in a deep stare and others my body is drawn up and still in a very deep stare. I cannot talk after I have them and then once I can my speech stays very slurred for hours. We have not been able to time the last couple of them because ive been by myself and the only reason I know ive had one is because I feel like a truck has hit me. I am on tegretol and my nuero doc feels thats the best med for me to be on for this type of seizure. All I know is its been very difficult!

Hello and welcome to NeuroTalk. You will find a greart number of friends here to assist as they can.

Sue gave you some wonderful information on epilepsy. I have had epilepsy for 45 years. One of the many things I have learn is that you have to take a day at a time. What helps one in treatment may not help others. You need to have patience in the actions of treatments.

At this time I am on Lamital and Keppra, and I also have a VNS (vagal nerve stimulator). I am at this time at Parkland in Dallas going through some testings. Hopefully they can come up with a better treatment. I have absence (petit mal) seizures for a large length of time. I now have developed Tonic-Clonic Seizures.

My thoughts and prayers are with you. Again welcome.

Darlene

Hi tos8,
There have been many times over the yrs. that I get a nervous feeling in my stomach and I know it will lead to an absence (petit mal) or complex partial seizure. Back in the 1970's my neuro told me the moment I got the feeling I was going to have a seizure to tighten up all the muscles in my body and make my hands into tight fists for a few seconds by doing this it will sto the seizure and take my word it works great. Another thing you can do is put a cool washcloth on your face and the back of your neck this will stop the neurons in your brain from firing up and triggering a seizure. This is fairly new and I just finished working with Drs. on a medical study with this and it works great. Take my word the stare and not being able to speak is all part of a complex partial seizure, if you are having vision problems this is telling me that the seizure is starting from the optical lobe which is the back of your head where your eyesight is and if you can't speak it's also affecting the left temporal lobe of your brain where your speech is.
I'm no Dr.but it sounds like your complex partials are leading into clonic seizures where you can't control your bodies muscles twitching this is what happened to me and I used to take tegretol but after taking it for yrs. I broke out with a rash. I will tell you to stay away from grapefruit or grapefruit juice while on tegretol because the enyzmes in the fruit will mess up the tegretol. Also take note if you get sick with a cold or virus you might have more seizures because over the counter meds will slow down the drugs going through your blood and it can trigger seizures. You might want to look into taking phenobarbital, mysoline, or keppra for your seizures. Another drug that has worked great for me is diamox. I wish you the best of luck and May God Bless You!

Sue

Thank you sue! I do take tegretol. Im just up to 800 mg a day. Today I very much thought I was going to have one, but I do the cold water thing already, I did it one day while I was in church and thought I was going to have one and since then thats what I try to do, And it does help! Thank you so much for all this info.

Welcome to the forum!! You have come to the right place!! Here you find out the things your feeling or going through are like many of us here. There's such wonderful support here as you have come to find out. :-) Sue and Darlene are such wonderful people here and gave you some awesome advice!! I have had Epilepsy for over 20 years now. I have been on tegretol and the highest dosage I took was 2400. I have had three brain surgeries and I'm just taking my life one day at a time. Just remember that everyone's body reacts differently to meds and to let your doctor know what your going through. Pay attention to your body and eventually you'll start to figure out what makes you have seizures and what doesn't. As you know it's difficult and you'll get frustrated but that's another reason to come here!! There's always someone who will try to help you as much as they can!! You'd be surprised how many of us have either been there or have felt the same you have at one point. Come back and visit us soon!
God Bless!!

I had one of my "big" siezures yesterday in church! I hate having them out in public! I had been siezure free for 3 weeks after upping to 800mg of tegretol a day, thats the longest I have ever been with out a seizure these past 4 months. I went into my normal staring seizure that led into me tightning up and jerking hard. When I go into those it is VERY difficult for me to get out of. I knew it was gonna happen and there was nothin I could do about it and nobody was able to start helpin me until I started jerking because they didnt relise I was having one. I hate not being able to move or talk and its just pich black. It is like you are stuck in your brain. We are gonna see if my dr will put me on another med along with the tegretol because its obvisly not holding me over. These things are so frustrating and embaressing when your out in public!

Hi tos8, They gave you some good information. You're going to like it here and I'm glad to see you. WELCOME

Lorraine

Hi tos8,
I'm sorry to hear that you had a bad sz. in church yesterday. If I may ask when you were having the sz. and jerking around were you aware of what was going on, another words were you conscious? The reason why I'm asking you this is because if you were conscious and realized what was going on you might have been having a clonic sz. and not a complex partial sz. This is what has happened to me after yrs. of absence, and complex partial sz. now I have clonic sz. where I will fall to the floor and only be unconscious long enough to hit the floor and then I'm conscious and just like you I'm jerking around and I can't speak. Since I started taking keppra this past August I have found that the clonic sz. and complex partial sz. have stopped I only have absence sz. now. You might want to speak with your neuro. and look into taking keppra I know it's done wonders for me. Also tell your neuro to order a drug level blood test for you because many times when my drug level was to high while taking tegretol it would trigger sz. for me. Be sure to stay away from grapefruit while taking this drug the enzymes in the fruit will mess up the tegretol and can cause sz. I wish you only the best and May God Bless You!

Sue