Hey Ya'll!

[TexasMommy]

Hey guys, I am new here and also new to the world of epilepsy. I have only been diagnosed for about 2 months now and I just recently turned 21. I have Partial Complex Seizures. I am having issues with several things that I was hoping someone could tell me that I am not alone.

When I first found out, I was caught off guard. I thought the EEG would come back fine since i had been having dizzy spells, but it didn't. I was like a deer in the head lights. I didn't know what to ask, I didn't know what to say... My mom asked how do I feel and I told her I felt numb. No one that i have ever known or in my family tree has ever had this, so I am so very lost. I have been put on Keppera and they are slowing down, but they still happen at least 3 X a week instead of 2-3 X a day. Is this normal? :huh:

I mostly pass out and lose the ability to move anything during my seizures. I don't twitch a lot, but some. I feel very very very tired afterwords. Is that normal? :huh:

I feel embarrassed sometimes because I sometimes lose my bladder. Or sometimes I feel embarrassed just in general for some reason. I know its not my fault, but I can't help it. Is that normal? :huh:

I lost the ability to drive for a least 6 months. I feel so stuck since I can't drive! I feel like my Independence is gone! Since I live in the smack dab of no where and I have to walk 10 miles to get anywhere, so even walking to a local park is a long walk. Any ideas? :huh:

People are trying to relate, but its hard when they don't know my feelings, but they are trying. I have a great support system of family and friends! I just want some guidance. I also am a stay at home mom (thanks to my loving husband who works full time) of a 20 month son. So anyone have any hints on being a young mom who has to deal with seizures would be nice. Thanks for any help guys! God Bless! -TexasMommy! :cowboy:

 

[Endless]

TexasMommy,

Welcome! I'm so sorry about your diagnosis, but if you have to have epilepsy, I am so glad you are in here talking with us.

I'm pretty newly diagnosed, too. Just about 2 months ago. At first I was elated just to have an answer for why all this crazy stuff was happening to me. Then I crashed and had a very hard time with it for awhile. Now I think I've accepted it, but I still get kinda mad or sad sometimes. I wish it would just go away.

The answers to all your questions is yep, among us in here, what you are experiencing is completely normal. I hope that eventually your seizures will be completely under control, though. It's what we all strive for but that doesn't always happen. Read through all the old strings/posts in here, and you'll see a lot of yourself in them. It is incredibly nice to have people around that experience the same things and can help us along.

Example of how you are SO normal: After my seizures, I curl up and sleep for 2-3 hours. If I have several seizures in a day that means I'm napping all day.

Living out in the boonies? I can only imagine how hard that would be. I live in the city where there is ample public transportation, and it's still brutal to get anywhere. It takes forever. There are a few possibilities you might consider, including riding a bike (not the safest either if you lose conciousness), a golf cart if legal to drive on/beside the road in your state, moving temporarily into a metropolitan area (not terribly feasible sometimes).

Hang in there. It's tough sometimes, but it's all going to work out.

 

[dfwtexas]

Hi, you have come to the right place for support, information, venting. I got diagnosed 2 years ago at age 47. I have both simple and complex partials. I went thru denial for a few months and wouldn't talk about it to anyone, but my son and he was at a loss too.
I started at 500 mg Keppra twice a day. I noticed an immediate improvement, but still would have a seizure. Docs will start you on a low dosage and if you still have seizures, you need to call doc...your level may need to be increased. That's common for me, now I am at 1500 mg twice a day. Your doc should also do regular blood work to check your level too.
Look around the site for info about Keppra and also generic seizure meds. You need to learn about pro and cons of all meds and generic too
I don't know if it the fact that I have been embrassed about not remembering things I have done in past seizures, but I always feel embrassed as soon as I realized I had a seizure. It is exhausting after having a seizure, I have my coma like sleep afterwards!
I thought I had a sleep disorder, as I was a sleep walker as a kid and I called my spells "extreme sleep walking!". Never thought my EEG would show seizures. I just learned what part of my brain have the seizures...so it takes awhile to know where to begin.
I am fellow Texan....there's a lot of us here. Welcome, sit a spell and do some looking around. I know when I first started using this site, it seemed like I learned something new every day...actuallly, I still do
jenn

 

[TexasMommy]

:clap: Thank you! Have been taking a look around and I feel at home already! :shake:

 

[epileric]

Welcome TM

You're more normal than you feel. You'll see when you realize what everyone else here does/goes through.

I could never drive so I never lost anything but I used to live in a tiny town of less than 2,000 people with the nearest town being 45 minutes away. To make things harder I lived in the bush a 5 minute drive but a 45 minute walk. In a town that small I never told anyone why I couldn't drive (I just told them it was illegal for me to get a license) so strangers would always pick me up if they were headed my way. Friends would even tell me when they were heading out of town if they saw me & to wait at the side of the road (there was only one road in & out of town as we were on a peninsula). If you're town is as much a community as mine I'd expect you to get similar treatment.

Meanwhile as you think of questions for the neurologist, write them down for your next visit with him. A lot of people would recommend you start keeping track of when you sleep, when/what you eat and basically keep a record of what you do all day & when you have seizures & what happens. It might help you figure out things that trigger them.

 

[valeriedl]

I can relate to some of your problems. I've had epilepsy for about 8 years now.

First off don't be ashamed of what happenes when you have one, it just happens!

Usually after I will have one I get very tired. I'll sleep after it and mostly all of the next day. I'll also get horrible headaches too.

I live out in the country too and I can't drive either. Luckily I have family and friends that try to get me around. I may have to wait till they go to the store or somewhere else until they are going but it's something that I have learned to deal with.

I don't know if you are seeing a neurologist or not or if you are taking any type of meds? At first I was having sezs a few times a day and now it's maybe a few times a month, if even that, because of the meds and the neurologist.

I would try to not cook anything on the stove or in the oven when you are alone, or even not take a shower, or do anything that may hurt you or even cause harm to the baby. Since your child is that young he doesn't know when you are having one or what to do.

Maybe you could have a friend or family member call you during the day a few times to make sure that you are ok. If you don't answer the phone then they know something might be wrong and set up something to do to have someone get over there to check on you. I know that I have family that does this with me since I am home alone alot of the time.

 

[Nakamova]

Howdy TexasMommy, you've found a great site for support and info!

You're in good company here. We're all dealing with different aspects of epilepsy. I think it can be especially hard in the early going after a diagnosis. It's hard to know what's "normal", whether what you're feeling is the epilepsy or the medicine, how much to tell friends about what you're going through...

The majority of epilepsy cases are of unknown origin, so it's not so strange to be the only one in your family to have it. There can be a lot of different primary and secondary causes too. One recommendation is that you keep a seizure diary to record when you have your seizures, how often, how long, and what happens. And if you can, also record details relating to diet, nutrition, metabolism, sleep, hormones, exercise, stress etc. You might identify a particular seizure trigger -- like fatigue for instance -- and then try and prevent it in the future. Some folks here have experience with treatments like diet and neurofeedback that you might want to look into as well.

Best,
Nakamova

 

[TexasMommy]

I am seeing a neurologist and I am taking Keppera 1000mg 2 X day but she is more than likely going to up it, she said it just takes time to get my body used to it. I do noticed that Stress triggers them and so does sudden rapid movement. Is that common triggers? What triggers ya'lls?

 

[dfwtexas]

Stress is a huge trigger. So is lack of sleep. Although I am no longer menstrating, periods/cycle can be a trigger too. I have some photosentivity issues...certain lights, strobes, etc can trigger one for me too.
If you have read on here about keeping a journal, that is helpful to determine what was going on with you that could have triggered a seizure. My neuro says certain music can be a trigger...that there is no hard fast rule on what may be your personal trigger, but it is helpful to know what others have identified as their triggers.

 

[valeriedl]

Stress can be a real trigger for me. I notice usually around the holidays I will have more than usual. That's when I have to try to get so much done - cooking, cleaning and making sure I have enough money to buy the presents for everyone.

 

[RobinN]

Welcome TexasMommy - I am glad that you found your way here. We like to knock around ideas here, and we are open to a variety of approaches.

My daughter who is 18 has seizures. I learned after about three years, that a sensitivity to Gluten can cause an abnormal EEG and also cause seizures.

For my daughter nutrition has been making the #1 improvement in her seizure control. She remains med free, and seizures are less and less frequent. She use to have 6 tonic clonic seizures each month, when on medication. She has not had one in three months recently.

I agree that keeping a journal might lead you to some clues as to what is causing yours. Remember you were seizure free for 21 yrs. Something to keep in mind is that seizures are only a symptom. Meds are like a bandaid on the symptom, many times causing additional problems.

 

[alivenwell]

Welcome! For me, stress is a huge factor. I'm much older than you, but I do vividly remember my 'infant' at that time. It's possible that if you just gave birth, that your hormones may fluctuate for a while.

In your particular case, can your mom stay with you for a while? Or, is she nearby? After my kid was born, my mom did spend time at my house helping me take care of my kid. She was a tremendous help.

 

[Meetz1064]

Hi, hello

and how do you do? It's very nice to meet you. I'm Meetz, and in many ways, I DO know how you feel.

I've had E all my life...ahem, I admit to 21 years, though I'm 45. Running joke with friends and family. Sorry.

I am a mother of 3, and yes, I've done without my license for long stretches as well--although I did it voluntarily, the state didn't suspend mine, as the doc didn't turn me in....I simply took myself off the road for 6 to 12 months each time things were not in TOTAL control.

Even though I live in a Big Ten University town, getting around is still not the simplest of tasks--especially not for my jobs. So I feel for you there.

Triggers for me?? Let's see--food (I'm a celiac, so gluten/dairy are huge issues), lack of meds, lack of sleep and STRESS.

I'm glad to hear that the Keppra is working for you--that's good. Meds work well for some, but on others they do not. I'm an example of one that Keppra does not work on---I had some, um, STRANGE reactions to it. I never do anything normally, though. :roflmao::roflmao:

Have you tried to keep a seizure journal? I have a great list of things to put in it if you'd like to see it--and it would help you and the doc pinpoint things that you may not realize are also triggers for you. Things like your monthly cycle, photosensitivity, hormones.....

Take care, and have fun with that little one. They grow up far too fast. Mine are starting to graduate from college now... Where did the time go?

Something else I want to say before my official welcome. Don't let E rule your life. Try to live as normal a life as possible. The things that you're going through are really common in the adjustment phase. I have 4 kinds of E and when I have t/c's (tonic clonics aka grand mals)....I sleep for 18 to 24 hours after mine. Just pay attention to how your body reacts each time, you'll begin to see a pattern, and learn what to expect over time. That's why I encourage the E journals....to help you do this.

Now, I DO want to welcome you to CWE. Sorry it took so long for me to get to this point. You're gonna find plenty of support here--friends galore, and tons of information to use and learn about E. So feel free to check out all of the nooks and crannies. Mr B has built us an AWESOME home here--the Library and Kitchen are great for finding information, and the Padded Room is the bomb for the days that you REALLY NEED to vent! And trust me, we've all been there a time or two.

Take care,

Meetz
:rock:

 

[Bernard]

Howdy neighbor, welcome to the forum. :hello:

Hey guys, I am new here and also new to the world of epilepsy. I have only been diagnosed for about 2 months now ...

Recommended reading:

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-myths-992/

... I have been put on Keppera and they are slowing down, but they still happen at least 3 X a week instead of 2-3 X a day. Is this normal?

It can be. Epilepsy medications don't work like aspirins or other meds that have more or less immediate effects. AEDs have to metabolize into the blood stream and achieve a therapeutic blood syrum level. Then your body has to acclimate to it.

Sometimes, it takes a while for your body to fully adjust to a new med. You might experience side effects more pronounced during this period. Seizure control might also slowly improve during this period.

Bear in mind though that everyone reacts to individual AEDs differently. No drug is guaranteed to give you 100% seizure control.

... I mostly pass out and lose the ability to move anything during my seizures. I don't twitch a lot, but some. I feel very very very tired afterwords. Is that normal?

Yes, post-ictal tiredness is very normal after either a CP or TC seizure.

... I feel embarrassed sometimes because I sometimes lose my bladder. Or sometimes I feel embarrassed just in general for some reason. I know its not my fault, but I can't help it. Is that normal?

Yes, incontinence during a TC seizure is very common. It's rarer during CP seizures, but it is known to happen.

... I lost the ability to drive for a least 6 months. I feel so stuck since I can't drive! ... Any ideas?

Look around in this list of threads: http://www.coping-with-epilepsy.com/forums/tags/driving.html

... I also am a stay at home mom (thanks to my loving husband who works full time) of a 20 month son. So anyone have any hints on being a young mom who has to deal with seizures would be nice.

One of the biggest (strongest) factors in keeping a high seizure threshold is getting enough uninterrupted sleep. That could be a challenge with a young child. Is he sleeping through the night yet?

Also, I notice that your diagnosis occurred after your son's birth. Did you start having seizure activity after delivery? There could be a hormonal component to your seizure threshold as well. See here for more info: catamenial epilepsy

 

[TexasMommy]

Thanks everyone!

Meetz1064, I as well voluntary gave up my license because my doctor asked me to, but she said that she didn't have to report it if I promise not to drive until we figure these things out.

alivenwell, they did start after I gave birth, but they don't think it's from that, but they are not 100% sure. I have a complex medical background. I had bone cancer when I was 16 (now 21) and so I went through chemo and radiation. They are saying that might have something to do with it, but who knows. I am also accident prone (I'M not sure why lol). I played a lot of sports, so I might had a head injury, I am just not sure. Right now, they are mostly focus on fixing the problem.

Also, alivenwell, I live on a farm surrounded by family. So I have my mom a couple of acres away. She, my dad, my Grammie, my husband, my sister, ect. are ready to drop everything to come help and they do. When I have a seizure, they offer to take my son for the day so I can rest. I have such a great family. They worry, but its because they care. LoL I also have two cousins trained EMTs and my friend who is about a mile away has a head nurse for a mom, so I am surrounded by people who now what to do. :rock:

Bernard, my son is sleeping through the night and I take naps when he does. I was truly a lucky mom because my son starting sleeping through the night at 4 months old! :woot:

Thank you to everyone who says that I am normal... in a way lol :roflmao:

Does anyone here has "Alert Seizure Dogs"? Do they really work? I don't think I am going to try to get one, I am just curious about them and peoples reaction to them. onder:

 

[dfwtexas]

Thanks everyone!

Meetz1064, I as well voluntary gave up my license because my doctor asked me to, but she said that she didn't have to report it if I promise not to drive until we figure these things out.

Actually it is illegal in Texas for your doctor to report you to DPS. My doctor can advise me not to drive for 6 months after a seizure...but that is all the doctor can legally do!

 

[TexasMommy]

Actually it is illegal in Texas for your doctor to report you to DPS. My doctor can advise me not to drive for 6 months after a seizure...but that is all the doctor can legally do!

Umm, I dunno, should i report it on my own? I don't want to get me or my doctor in trouble. I see her soon, should i ask her to report it. I am really new, so I dunno. :dontknow: HELP?! I feel awful now. I didn't know it was illegal. I don't want to get her in trouble.

 

[dfwtexas]

I would not give up my license....once you do, it is Red Flag to DPS if you want to get it back. You can stop driving and just not notify DPS.
I think your doctor was trying to stress importance of not driving....she knows she cannot violate your medical privacy.

 

[TexasMommy]

I would not give up my license....once you do, it is Red Flag to DPS if you want to get it back. You can stop driving and just not notify DPS.
I think your doctor was trying to stress importance of not driving....she knows she cannot violate your medical privacy.

I don't drive. I am a little intimidated to at this point. I still have them 3 - 4 X a week and i am sacred that it might happen while i am driving. So even if is wasn't illegal, I wouldn't. I am scared to hurt me, my son, someone else or worse.

 

[Blondie47]

texas mommy
welcome--you will find so much support here!

My daughter, 14, has simple partial seizures that affect her vision and motor control. She retains her conscienceness during a seizure, but is impaired. She was diagnosed a year and a half ago.

She is a cancer survivor too! leukemia --chemo and intrathecal treatments...she was diagnosed at age 19 months.

You may want to contact your nuerologist about reoccuring seizures.

Take care:e: