scared

[grandote]

Good afternoon! I am Gary's wife-Kay. Please forgive me, I'm very nervous! I've never done anything like this before.

My doctor tells me that I have seizures. I guess that part of me is still in denial! I feel normal. I'm not sure if I think that I should sense that something's wrong or what.

During a period of time when one of my children was ill, some strange things occurred. I had some memory issues. Mom, the finder of lost things, was losing things herself. That was very unusual. I had trouble remembering my age, my phone number and even my house address. The worse was that I lost a period of time! That was very scarey!! I scheduled a appointment and my doctor started me on this journey.

My doctor started me on Keppra. I reacted to that drug and I am currently easing off of it. I guess she'll start me on something else later. I am scheduled to have another eeg in about 2 1/2 weeks.

I'm scared right now. I have no idea what form my seizures take on. I don't know what signs I have, that indicate one coming. So many questions!! I'm really nervous right now especially. Does it get better?!?

Thanks,
K

[Nenne]

Hey, Of course u will be scared, its something new and it is changing ur life, But it does not all have to be bad! Every experience u have make u stronger! U will have days when u are angry and just wanne scream and u will have days when u dont even think about it.

I feel normal and i had sense i was 7, u are the same person as before just with a few extra things...

I cant tell u if it gets better, for me it did when i started u be older and knowing my own body and getting what was going on. Some people will never get pre warnings and some do. The only thing u should think about is to take care of urself, See what u can do and not can do. Every one is different. Every ones border is different. I can for example drink but i cant go to a disco. There is people that cant do crosswords sense it triggers a fit, but they can have a shower without a problem and so on. get to know ur on limits and it will be much more simple And if ur scared talk to people! get a hug!

[skillefer]

Hi Kay! Believe it or not, it can get better. The thing is to be patient. Medicines take a while to work. I had been seizure free for 9 years, when all of a sudden I had one in front of my then fiance. It was a tonic clonic seizure. (I fall on the floor and have convulsions...and according to my hubby, it loks like my arms and legs twist all the way around. ) I thought that he would cut and run. Instead, we've been married now for 5 years. My memory is not the best. But that's because my seizure activity was increased. Memory can be effected by our seizures as well as our medications. I've lost whole chunks of time. My hubby has been really understanding....but it's still frustrating for me. Now....if I want to remember things, I write them down. It's been about a month since my last seizure. I used to have 2 each month. The only thing that changed was that I started taking vitamin supplements.

Your nervousness is probably due to not knowing. So, in order to take back some control, I'm going to suggest that you start keeping a journal. WRite down everything you eat, drink, how much sleep you get, any over the counter medicines you take, and how you feel every day. Also write down if you lose time during the day, and if so from when to when. The more information you can give your doctor, the better job he can do. Also, in keeping this journal, you may find that you see a pattern. For example, lots of us are more likely to have seizures if we don't get enough sleep. Some people are more likely to have seizures if they are overheated or if they see strobe lights/flickering lights/for some even those fluorescent lights in public facilities will do it. Have your doctor check your blood sugar levels. How much coffee/caffeinated drinks do you drink? If you drink a lot, consider cutting back. Take time out to unwind and destress. Spend some quality "me" time. As women, we tend to worry about everyone else and take care of ourselves last....well, just remember, you can't help anyone else if you don't take care of yourself.

Check out the Epilepsy 101 thread. It gives some good basic info on epilepsy. Also, don't be surprised if it takes a couple of tries to figure out which med is best for you. Each person is different. Feel free to ask questions. THat's what we're here for. To support each other. And most of all....remember that epilepsy is NOT the end of the world. Ok? You can have a full and rich life if you choose to. You may have to adjust some personal goals (for example, I have given up my bunjee jumping dream), but you can still lead a fulfilling life.

OH! I almost forgot..... Either write down any questions you have for the doc, as well as her answers....or take your hubby with you to the appointment. My husband goes to my appointments with me. That way, he can remind me if I forget a question I wanted to ask, or if the doctor gives me instructions.

Keep in touch. And welcome to CWE.

[BuckeyeFan]

Kay - Yes, Epilepsy can be a frightening monster at first. It is different than most illnesses, because you can't 'see' its symptoms like a broken bone.

Take heart in the fact that many, many, many people with epilepsy get it under control using various treatments and it is likely that you will as well. I am sorry the Keppra didn't work for you. I have been on it for almost 5 years and it has worked pretty good for me. One other thing to note, few epilepsy patients react the same to any given combination of treatments. A good doctor will realize that and work to find the one that brings you back.

I feel your fear will subside soon, though it may never go away. I have had E for 27 years and I still get afraid at times, but the more I learn about it, the better I feel about my reaction to it. I think you have a good spouse there to help you through this and you will fight it together. My wife has been a great support for me as well.

Look around the various rooms of the website and you will find lots of information and even more kind people. We have rooms to learn about epilepsy, treatments, and life with E. We also have rooms where we let off steam when we get upset, laugh together, and support each other when needed.

Use the search at the top of the page to look up anything you might have questions about. Epilepsy 101 is a great place to start to learn more.

Welcome again,
BuckeyeFan

[RobinN]

Hi Kay -
I don't have E but my daughter who is 16 has been dealing with tonic clonic seizures for the last two years.

My belief is that she was fine for 14 years, so my goal was to get her seizure threshold back up so that she becomes free of them. The meds didn't work for us. However, nutritional changes, bio-identical hormones, and neurofeedback have. She has no side effects from any of these.

I hope you sit awhile and find some good reading material to handle your fear.

[stilldancing_98]

Hi Kay, This just sucks huh? I have it and my son has it. And it is hard to accept. Because its something that feels so uncontrolable. Its in your brain. Its not a cold or a flu. I understand your ache. It is a new life. New people to meet. But I think soon you will find that you may appreciate more. Notice a little more. When I first saw my son have a seizure my ache was there again. Its gone. Life is love and love gets us through anything.I will pray for you.Teresa

[LynnW]

Hi Grandote. Welcome, and make yourself comfortable. I can totally sympathize with your situation. I was diagnosed in March of this year with epilepsy at age 44. My diagnosis journey was a scary and drawn out process. I found out that I have simple and complex partial seizures.

The diagnosis was hard for me. I wanted to know what these strange "episodes" were that I was experiencing, but I wasn't too keen on the answer that my neurologist gave me. And I HATED the drugs I had to take. They made me feel so stupid and dopey.

But now, three months later, things are better. I've been seizure-free, and my body is finally adjusting to the drugs so that they don't affect me so much. I've been educating myself about epilepsy - this forum is a minefield of information. And I also feel perfectly normal. All of us here on this forum are regular people who happen to have epilepsy. Don't let epilepsy define you.

[Bernard]

Hi Kay, welcome to the forum.

... I've never done anything like this before.

"I'll miss the sea, but a person needs new experiences. They jar something deep inside, allowing him to grow. Without change something sleeps inside us, and seldom awakens. The sleeper must awaken."

... So many questions!! ...

Epilepsy 101 - Part FAQ, Part tips and advice

Once you get your seizures under control, it will definitely get better.

[grandote]

I knew that coming off the Keppra, there was the possibility of more seizures. Well, I've had three, possibly four. My husband said that last Thursday, I told him that morning I thought that I had one...I don't remember saying anything about it. My boss told me that she witnessed two within 20 minutes of each other. She said I was just staring and unresponsive. She said my eyes looked funny. On Monday morning, I wrote in because I felt funny. I think that I had one right before I woke. In fact, I overslept that morning and didn't hear my alarm.

Yesterday I called my doctor. She's ordered an EEG for Monday and I see her Tuesday. I asked about driving. She didn't write anything about that one my orders the last time I saw her. For the time being, I'm not supposed to drive. This makes things a little harder for my husband. We're rearranging things and we'll get through it.

My boss worries me. She likes to remind me that it may take a while to find the right meds. She asked me if I had looked into Disability. I'm a little confused as to where she's going with this. In no way, do I feel as though I can't work!

Anyway...I'm really looking forward to seeing my doctor. I've got lots of questions written down and I've been trying to write any funny feelings I get. I'll let everyone know what happens. I feel blue every now and again. All in all, I'm feeling better. Before, I felt like I was running blinding. Now, I feel like I'm heading in the right direction. I've got to be patient and do some things differently.

Thanks everyone!!!
K

[stilldancing_98]

I love your attitude Kay. Remember to walk through fear. Don't run. Your mind sounds very healthy. That is so good. And it sounds like you have some good support. You have some here to.

[Bernard]

... My husband said that last Thursday, I told him that morning I thought that I had one...I don't remember saying anything about it. My boss told me that she witnessed two within 20 minutes of each other. She said I was just staring and unresponsive. She said my eyes looked funny. On Monday morning, I wrote in because I felt funny. I think that I had one right before I woke. In fact, I overslept that morning and didn't hear my alarm.

Sounds like you are having a lot more seizure activity that you are consciously aware of. My wife had the same problem. She used to argue with me when I would patiently wait until her post ictal periods following a complex partial seizure had passed before telling her she had just had a seizure. She refused to believe me half the time.

I highly recommend having your husband present during your doctor visits. He can likely provide a more complete picture of your seizure activity and it's a good idea to have some backup on remembering what the doctor said if you are having memory issues.

For the time being, I'm not supposed to drive. This makes things a little harder for my husband. We're rearranging things and we'll get through it.

Bless him. I've been in his shoes too many times.

[grandote]

Thank you all so much for your replies. I helps me to keep a positive out-look. Sometimes, I feel like I don't have to write anything. It makes me feel so much better to read that other people feel like I do and I'm not alone.

I think that I'm still in denial about what's happening to me. I get stubborn sometimes and I want someone to "prove" that I'm having these seizures. I know that sounds funny, but that's how I'm feeling. My next appointments with my doctor will help me. My husband is coming with me. We've both been writing down questions and concerns.

I don't like the memory loses. That's what really scares me! My favorite Grandmother had alzheimers. That really haunts me right now. I do a lot of thinking about her.

This weekend is going to be a busy one with the kids. Keeping busy is a blessing! It helps to keep the blues at bay...No time to feel sorry for myself.

I'll touch base later. I hope everyone has a great day!

K

[stilldancing_98]

The memory loss is a tough one. After I came out of my coma I did not remember people. Relatives. Somebody, a stroke victim which I also am is told me, when you can't remember just breathe and relax. It's all ok.

[hawke86]

Has anyone ever have a stroke or come close to having one? Just wondering. A few years ago I had one and it was a terrible experience. I have to be extremely careful when I go outside during the day. Not only cause I had a stroke, but also cause of one of the medications I take. I hope none of you people ever sufffered from one. Always drink plenty of water or some kind of fluids.

[grandote]

Hello everyone!

I thought that I'd let everyone know how my testing went. My husband and I went to see the doctor. She was going to put me on another seizure medicine. My husband and I had decided that we wanted proof that what I had experienced was Epilepsy. My doctor suggested a 48 hour EEG.

My testing was June 19th. I looked like something out of Star Trek--All those wires glued to my head. Anyway, long story short, my doctor pronouced my seizures as benign. She thinks that I was very sleep deprived and stressed during my daughter's illness. I'm allowed to drive and no medicines! Hurray!!!

If I hadn't had this forum, I might be still taking anti-seizure medicines. There was so much good information! During a period in my life where I was very scared and didn't know what to think, everyone here help. It taught me to do my own research and always to ask questions.

Love to all!
K

[Bernard]

Wow. That's awesome news Kay!

[BuckeyeFan]

What great news. I sure hope everything continues to work out for you. Please be careful for awhile and let us know how things are going sometime in the future.

[grandote]

I will go back the see the Neurlogist in four months. She'll check me out again to make sure that everything is okay. She stressed that I need to make sure I get my sleep. Sometimes that can be hard with three little ones. I have learned to ask my husband for help with the kids, especially during the night.

It still bothers me that she was going to put me on another seizure medication. If we didn't fight it and ask for some definite answers, I'd be on a new pill with different side affects!

I'll look in every now and again. You all have been like family to me.

Bless you all!
K

[stilldancing_98]

Ihad a stroke when I went into my coma.