hi, i'm new to this website so bear with me. i was diagnosed with partial seizures without loss of conscienceness. i get an aura that will cause dizziness or light-headedness, metallic taste in mouth, strange smell (sometimes bacon frying), nausea but i do not lose conscienceness. i would get this overwhelming sense of fear and anxiety. if you are looking at me you cannot tell that i am having a seizure, at least no one has seemed to notice. i believe that i began having these around the fifth grade but just thought that it might have been caused by playing too hard or having not eaten. i also remember just before falling asleep that i would feel as if i was awake though actually asleep. i was unable to wake myself up. i continued to have these 'seizures' thru out my life and i began to notice that when i became stressed out they would appear more frequently and more severely. they became even more severe at the onset of menopause. i never knew what they were and i never took any kind of medication for them probably because i did not know that they were seizures. about a year ago i had a car accident (my first one ever) and after being talked out of my car, i was taken to the hospital were i was diagnosed with epilepsy. an mri was done of my head which showed that i have 'lesions' on my right temporal lobe. i guess that would explain why i felt a severe strain on my left side the day before the accident. i was put on dilantin, xanax and prozac. i developed dilantin toxicity and my pcp sent me to a neourologist who detected it and weaned my off the dilantin and put me on keppra. i weaned myself off of the xanax and prozac after nine months. i had to quit my job of almost 30 years because the insurance company would not accept my neurologists reason as to why i could not come back to work when they said that i should. i thought my health and life was more important. i still have simple partials that seem to be escalating with time. my neurologist is having take another mri and eeg to determine why i am still seizing and why i have developed headaches daily. i would like to know if there is someone out there who may be having the same type of seizures that i have and what was done for them to stop them. by the way, i am a 53 year old woman who stayed on the go, did everything for everyone who is now basically housebound due to being afraid of having a seizure if and when i am out and about.
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RobinN
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Hi latwife - Welcome to CWE. I am sorry that you find yourself in this predicament. I do hope that you will find yourself some support and compassion here that you don't find elsewhere.
I don't have seizures, my daughter does. However, you and I are the same age, so I can relate to your situation. My daughters are the tonic clonic variety, and she wants to go to school no matter what happens. Sometimes you have to choose to go on with your life, or let the disorder control you.
Have you read anything about neurofeedback? It can train your brain to reroute the information around the area that has been damaged. You might check into it.
I am also curious as to what you do for stress control these days? Do you get exercise?
Have you tried any nutritional changes? There are a lot of therapies other than AEDs that give you a bit of power back over your situation.
Don't give up. You are still young.
I don't have seizures, my daughter does. However, you and I are the same age, so I can relate to your situation. My daughters are the tonic clonic variety, and she wants to go to school no matter what happens. Sometimes you have to choose to go on with your life, or let the disorder control you.
Have you read anything about neurofeedback? It can train your brain to reroute the information around the area that has been damaged. You might check into it.
I am also curious as to what you do for stress control these days? Do you get exercise?
Have you tried any nutritional changes? There are a lot of therapies other than AEDs that give you a bit of power back over your situation.
Don't give up. You are still young.
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Hi latwife, welcome to the forum. :hello:
Why were you put on xanax and prozac? Those are not AEDs.
Why were you put on xanax and prozac? Those are not AEDs.
robinn, thanks for your response suggesting neurofeedback, i will look into it but if you can direct that will help me. i take folic acid 1mg and a multiple of calcium,magnesium and zinc. i have tried others but nothing really helped. i tried different combos for a year as well as tried to make myself believe that i was getting better but now i am starting be honest with myself and others and saying that i feel no better than i did when i was not on medication. as far as exercise, that where i am trying to get to but i help my stepdaughter out by babysitting her son three days a week and that just about wipes me out then it takes a couple of days to recuperate. i trying to get that changed so that i can devote more time to my own wellness. i am married so all that work that goes into that needs to be taken care of. so i have a full life just not enough time to devote to myself and my disorder. any and all suggestions are welcome.
RobinN
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http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/
Suggestions: (please read this as what I would do if I were in your situation)
I would begin with nutritional changes immediately. There are many suggestions around this forum, but going back to the basic healthy diet to start with a blank slate.
As far as exercise, walk around the block (I am a city gal) or down the street each day, with your grandson. Can only be a positive for both of you.
What I was told recently (by a doctor no less) is, if I don't take care of myself I won't be able to be there for the others when I crash and burn.
Suggestions: (please read this as what I would do if I were in your situation)
I would begin with nutritional changes immediately. There are many suggestions around this forum, but going back to the basic healthy diet to start with a blank slate.
As far as exercise, walk around the block (I am a city gal) or down the street each day, with your grandson. Can only be a positive for both of you.
What I was told recently (by a doctor no less) is, if I don't take care of myself I won't be able to be there for the others when I crash and burn.
i do try to watch what i eat by trying to take in more vegetables, grain and dairy products as opposed to meats. the problem is that most foods make me so nauseous that i don't want to eat most of the time. it's pretty cold here where i live at this time so street walking in limited but when the weather is good and i feel good i do try. i tried mall walking but i get so disoriented when i do that. i have to force myself to eat most of the times and i have tried to roller skate again but usually on the days they have my kind of roller skating (over 25/organ music) is when i babysit. i try running up and down the stairs but i have just gotten to a place where it seems nothing is working and my neurologist says that i can carry on with life as before just focus on resting. my body says that no amount of rest will help me to have the energy i once experienced. mind you all of my life i had to push myself to get done the things i needed to do on a daily basis. just feels like with epilepsy (knowing it) and medication that my get up and go has gotten up and left.
welcome
hi latwife!
you've found a wonderful place to be, and great people to learn from. Robin has all sorts of good info, especially about nutrition.......let her be your guide! I'm sorry for the place that you find yourself in. Diet is an important thing.
I don't understand the Xanax and Prozac....unless they were trying to keep you from getting depressed ahead of time? Huh. Weird.
Anyway, I just wanted to stop and say HI. You're in great hands here.:twocents:
Meetz
hi latwife!
you've found a wonderful place to be, and great people to learn from. Robin has all sorts of good info, especially about nutrition.......let her be your guide! I'm sorry for the place that you find yourself in. Diet is an important thing.
I don't understand the Xanax and Prozac....unless they were trying to keep you from getting depressed ahead of time? Huh. Weird.
Anyway, I just wanted to stop and say HI. You're in great hands here.:twocents:
Meetz
RobinN
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You are too kind Meetz...
Please... no guru status here, I am just reading and watching what is helping others with neuro issues and I see for some, the changes can be positive. We were designed to get nutrition in a particular way, and for some reason we have created an environment that is not interested in following what we know to be good for us. Self defeating in my opinion.
You might try... just try.. taking out the dairy products.
I do forget how weather can hamper an exercise plan. Sorry... I live in the land of sun (except we are under a torrential downpour this weekend). I see people walking the malls an I am impressed. I was able to get a lot of energy back with some of my supplements. I take magnesium, COQ10, and EGC (Green Tea extract) it really seems to pep me up on the days that I am dragging.
Has your PCP monitored your blood work. Fasting tests taken over time?
Please... no guru status here, I am just reading and watching what is helping others with neuro issues and I see for some, the changes can be positive. We were designed to get nutrition in a particular way, and for some reason we have created an environment that is not interested in following what we know to be good for us. Self defeating in my opinion.
You might try... just try.. taking out the dairy products.
I do forget how weather can hamper an exercise plan. Sorry... I live in the land of sun (except we are under a torrential downpour this weekend). I see people walking the malls an I am impressed. I was able to get a lot of energy back with some of my supplements. I take magnesium, COQ10, and EGC (Green Tea extract) it really seems to pep me up on the days that I am dragging.
Has your PCP monitored your blood work. Fasting tests taken over time?
i have the minerals that you listed and i will step up on those for a month and see what happens. yes i have blood work done every three months and am told all my levels are good. which is what is worrying me along with the increase of simple partials and headaches. i'm not sure what you mean when you say fasting tests. i will cut back on dairy products even though my cottage cheese and peaches combo 'seemed' to keep me going. to be quite honest i believe that they has got to be a combination of minerals that i can take that will rebuild my gray matter inspite of the lesions. you guys are a true blessing. thanks for your help.
RobinN
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The blood work is done in the morning after fasting all night. That way it is a more true test, so to speak.
The suggestion for dairy is because it is one of the top allergens. It has casein which is used as a glue in some products. Doesn't seem right for us, to gum up the system if we are to be absorbing nutrients through the intestinal tract. Just one way to look at it.
My headaches were totally eliminated with magnesium and COQ10. A miracle for me.
The suggestion for dairy is because it is one of the top allergens. It has casein which is used as a glue in some products. Doesn't seem right for us, to gum up the system if we are to be absorbing nutrients through the intestinal tract. Just one way to look at it.
My headaches were totally eliminated with magnesium and COQ10. A miracle for me.
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Hi latwife! Welcome to the forum. 
By any chance, did you have your blood sugar levels checked? I ask because I not only have seizures, but also hypoglycemia. If my blood sugar drops too low, I can have a seizure. I'd ask my doc to order a test for blood sugar levels. Especially if you have any parents/relatives that are diabetic. Again, welcome!
By any chance, did you have your blood sugar levels checked? I ask because I not only have seizures, but also hypoglycemia. If my blood sugar drops too low, I can have a seizure. I'd ask my doc to order a test for blood sugar levels. Especially if you have any parents/relatives that are diabetic. Again, welcome!
RobinN
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You know what I do? I get a copy of each blood draw and I compare them, and then I ask why something has a different number and if we should be concerned. I have been given decent answers sometimes that make sense and other times ... I guess they just don't know. All I know is they certainly are not doing any of the comparing.
Just a thought.
Just a thought.
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