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Jackie Watson

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Hi. My name is Jackie, female, age 50. I had an event on May 13, 2009. I was at home with my 2.5 year old granddaughter. I was also talking on the phone with my sister. I became unresponsive to my sister on the phone. She heard my granddaughter say, Mema its not time to take a nap. My granddaughter kept saying to wake up. My sister called 911. I was transfered to the nearest hospital. They thought I had a stroke. They ran a ct scan, mri and eeg test. They finally said a seizure. I am under a neurologist. I have had 4 abnormal EEG's. I am on my 4th medication. I just had an EEG last week and the dr. said I had 35 seizures during the test. Mine must be silent. No one knows I am having them. I am getting discouraged because I feel like something is going on in the brain. It has to lack something to have so much electrical activity going on. I am so flustered also about the medication. I am scared when I think of long or short term medication. Help! Tell me what you think. I have only passed out that one time.
 
Hi Jackie, welcome to the forum!

This is a great place to get information and support. I hope you feel free to explore and share. I know the epilepsy diagnosis is pretty scary and hard to process, especially at first. Everything seems confusing and scary. I hope you can get some answers and relief here.

The electrical activity in the brain that characterizes seizures isn't a sign of something missing, more that something is out of whack in the electro-chemical system that regulates the neurons. Many things can contribute to this imbalance -- nutritional deficiencies or allergies, head trauma, infections, etc. -- and it shows up in different ways in different people.

You say you're on medication #4 -- is that because the others didn't control the seizures? It seems like that's a lot of meds to have tried in 5 months. A lot of times with epilepsy there's a bit of a "medication merry-go-round" until the right combination of dosage and meds is found. It's no fun, but if there's a chance of finding a way to control seizures, then it can be worth it. A lot of people here are exploring ways that special diets can help reduce or control seizures too. You can search on the site for more info on those topics. In addition, it's a good idea to keep a seizure journal where you record the seizures, and what happens during them, and also any particular things that might be triggers -- diet/metabolism, hormones, sleep patterns, stressors, overall health, etc.

Best,
Nakamova
 
Welcome Jackie,

This forum was made by Bernard out of love for his wife Stacy. That love permeates through the whole forum.

You have a granddaughter who loves you very much.

What medication are you on? You say you are on your 4th medication. What other medications have you been on?
 
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I have been on Ethosuximide- I was flat on my back with dizziness
Then I was on Lamictal - Flat on my back again
Oxcarbaxepine - I was fine with that. After the EEG (27 Seizures)
Now I am on Divalproex- Been on it for 3 days
 
For the first month I was on Lamictal I was dizzy and had headaches, but then as my body got used to it the headaches and dizziness subsided. (Of course if you're flat on your back you can't really wait for your body to adjust). Anyway, I hope your doctors have you tapering on to the Divalproex fairly slowly, and that it works well for you.
 
Are you on both Oxcarbaxepine and Divalproex? Are they both working for you?

I am on Lamictal.
 
I do have a lot of headaches. I always relate them to a neck injury I had several years ago. My doctor knows about this. I also have 2 grown boys. Three days after each of these boys were born, 5 years apart, I had a seizure. The doctors related them to pregnacy. Twenty-six years later here I am.
 
Jackie, I was 53 when I was diagnosed for the first time so can relate. Fortunately, mine have been completely under control since starting Depakote after first being diagnosed. I did have side effects at first but they have subsided for the most part since then. I get migraines too and now they say that migraines are actually in the same family as seizures.
You've come to the right place for support and information and I hope you'll visit us often.
 
Hi! Welcome to CWE....You mentioned that the 2 other times you had seizures were following delivery. Any chance you're going through menopause? Hormone fluctuations like getting pregnant, delivery, even the time of the month can cause some women ho have seizures.

If it is hormonal, there's a chance that by getting your hormones back in balance, you could stop the seizures or at least cut them back.....
 
I had seizures when my last child was born. I was going through menopause. In fact, I hemorraged and went into a coma.

The doctors said that it was due to your neck injury?
 
I am on both right now. They say they will wean me off the Oxcarbaxepine. I was fine with that but after the EEG he thought we needed to try something else.
 
Actually I am back on hormones now. I took myself off of them about 5 years ago. I did go back to the Gyn. and ask to go back on them. I have been back on them now for about 1 month. I just had an EEG and had more seizures than the last one. They said there were more, not lasting as long but more frequent.
 
Have you had more seizures since you went back on hormones?
 
In general (though not always) with hormone-related seizures, when estrogen spikes and progesterone dips, that's when the seizures occur. So you might consider going back off the hormones -- the estrogen in them may indeed be contributing to the seizures. Or you could wait a bit until you are stable on your AED meds first.
 
Yes. I had more seizures during the test. They did not last as long as before the last EEG but were more frequest.
 
Hi Jackie, Welcome. If there's a place to find help and an answer, this is it.

According to the Mayo Clinic:" In general, seizures are caused by abnormal nerve cell (neuron) activity in the brain. The brain's nerve cells normally communicate with each other by sending electrical and chemical signals across the synapses that connect the cells. In people who have seizures, the brain's usual electrical activity is altered. During an absence seizure, these electrical signals repeat themselves over and over in a three-second pattern. "

That could explain your continuous seizures, but finding the right meds, is a form of trial and error. Unfortunately, I've been there, too.
 
I think I need to go to a seizure specialist. Maybe I am looking for an answer that I will never find out. I want to know what is making my brain have the activity it is having. The doctor tells me it is happening all over the brain not just in one area. Is there a chemical I need in my brain that I am not getting and why not if so? I have so many questions. This is so puzzleing to me!!!!
 
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