Epilepsy Community

Hello,

Welcome to Epland. I'm glad you 'found' us. I have family history w/ seizure disorders. And have learned a Lot in the past 20 yrs. I hope sharing helped you work out some of your angst.

First, let me say: I am not a DR but, from my own personal experience & that of my family & previous posters: "Forget the ER trip!" IF the seizure had been another Over 3-5 minutes, then OK for ER. But, shorter episodes? They can do nothing for her!

It's Good to hear her MRI is 'normal'. As, for EEG that is just 'Proof' that she Does has Epilepsy. So, what to do? First, Start a Journal! Check Journals Post under Tips! Next: Start Educating yourself! Ask questions. I will provide links for you & there are more links posted in our Resources. I believe the ones you should read first concern Hormones & next Diets. Use our Drug Resources to learn more about Keppra. Be sure to read Reviews, too. Keep in mind, Side effects are what we watch for, not what will always be. Also, learn about the Importance of B6 supplement while on this med.

Pick a Good Neuro or Epileptologist ( seizure specialist) Chek epilepsytalk.com site for a list of DRS recommended by others' w/ Epilepsy. Write down questions. Get answers! If not, seek another opinion. You are going to be on a Long Journey. Stay Calm. Keep taking them Deep Breaths! More Later! HUGS!

Love Candi

Good morning, thinkingtoomuch,

Like your daughter, my seizures came out-of-the-blue. It was the spring of '75, 9 days prior to my 14th birthday. I am the only one in my immediate family with ep(a maternal cousin had them for a short period but her's disappeared).

My initial eegs were negative for any seizure activity. This frustrated and frightened my mom. The doctor suspected that it was a delayed reaction to the meningitis I had as an infant. Has you daughter ever had any infections or high fevers in the past?

I think I handled my ep better than my family did. "Tell me what to expect and we'll go from there." Kids have a way of being more resilient than adults.

As Candi says, this is the beginning of a long journey. How is your daughter handling them? I'm sure she has as many questions as you do about all of this. Please log her questions/concerns along with yours.

Also, like Candi, I am not a doctor. Like you, I stumbled onto this site by pure chance. And it has been a pleasure to share with others my experiences living with ep.

Your frustations are understood by all of us. It is ok to be scared. Those who live daily with ep and those who have a loved one with ep(or any medical condition) truly understand what you're saying.

I am currently taking the Keppra XR(extended release) pill in additon to another anti-seizure med.

Candi, as usual, gives some of the most accurate info anyone could offer. And she does it with love.

Belated Birthday Wishes to your daughter. What's her name? Belated Mother's Day to you.

I wish you the best on this journey. Please vent to us as well as the docs. There are no stupid questions

Love and Concern,
angie

Hey, thinkingtoomuch,

With you in your daughter's corner, she's got a fighting chance to handle the future with strength and courage.

sending you hope,
angie

Hello Angie and Candi; My daughter is Aaliyah and her seizure name is Benign Rolandic Epilepsy (I hope I spelled it correctly). She is of course still flying around the house like it is nothing to her. She has not asked about them and she just tells me what hurts when she has finished with the seizure. Matter of a fact she will come and get me to show me she is actually having a seizure (I didn't know you could walk around with a seizure,but she does). She can't talk until the seizure is over, but she can walk and move around somehow. Today, I went to get the Keppra and then the tears rolled out as I saw the side affects. I decided not to give her until I can see the doctor again. I am scared poop-less until I can make eye contact with the man who gave me a drug that can possibly make my daughter kill herself (WTF!!). Sorry, I am so angry at that fact and need to find something that does not cause suicide, my religion looks at suicide badly. Thank also for the web info Candi. I am glad you girls are here and there is so much info including comments about possible side effects with epilepsy medications .

Hi Thinking,

Would you please clik on this site & read the Info about BRE. Tell us if this is what your daughter is experiencing. http://epilepsytalk.com/2011/10/26/defined-40-different-types-of-seizures/

Mite as well read the whole article. Time to Start learning. Phylis has an extensive menu of interesting Epilepsy Topics you may want to read, too. So, please bookmark her site & browse when you can.

Mom, W/ Keppra, suicide is just a Rare side effect. As I stated above, We Watch for signs of side effects. We don't All have Side effects on these meds. Keppra is Most known for episodes of 'mood swings' Anger Issues. So far, no one here has reported feeling suicidal. If anyone did, hopefully, they were smart enough to call the DR ASAP. ALL meds have side effects. Even over-the-counter meds. Would you refuse to medicate your daughter w/ Aspirin, Cough medicine, etc? All Medications are what I call 'trial & error'. We won't/don't know how we will react to Any med till we try it. You do have the rite to refuse that med,. And if your doctor will prescribe another med for her type of seizures, fine. But, there will still be Scary side effects Listed.

The longer Ep is left untreated, the greater the possibility of a change in seizure types. I noted convulsions are a possibility w/ this type of Ep. Your daughter hasn't reached that point yet. And if you treat her Now & get her 'episodes' under control she is less likely to have convulsions. Please keep that in mind B4 refusing this med or another. L(

Way to diminish/eliminate side effects. Good nutrition! But, good nutritin is Essential for people w/ Ep, anyway. This site explains it well. http://hubpages.com/hub/Epilepsy-and-Nutrition

Hope you & your daughter have a good day.

Love Candi

HI Thinkingtoomuch,

Aaliyah is nine and still flying around!!! She sounds like a wonderful young lady.

When I was having seizures, I was able to still move about. I was talking on the phone, cooking, changing bus lines,crossing the streets, etc. I Howwever, I never recalled what I was doing while in a seizure. Somehow my mind kept me safe like I was on automatic. I simply cont doing what I was doing. I could tell that a seizure had happened because of a loss of time, chance of scenery(sometimes clothes), or an unpleasant taste in my throat.

Trying new meds are scary. I have been on several. This is not because the docs were "picking out of the blue" but that my body would become non-responsive to the med and that brought about a need for a change/addition.

I have been taking Keppra since the late 90s. In fact I was part of the research group that helped get it approved by the FDA. As Candi says, meds will have unpleasant side-effects but we all respond differently to the same one.

Trust Aaliyah to tell you how she feels when taking her meds. She's your best resource as to how the meds are working. I think she'll let you know when something isn't right. She's doing that now by informing you of the seizures.

In addition to the articles and resources that Candi has suggested, I would like to add Amazon.com. There are many books to read about epilepsy. Some are designed for the kids.

Please get Aaliyah on something soon. The quicker you do, the closer you will be to finding a med that is right for her.

Have a good day. Hugs to you and Aaliyah.
angie

Thanks for you advise again Candi. I didnt give her the medication, but thank God she didn't have a seizure last night. I will keep trying to get a ride to the hospital to talk with the doctor, but monitor her until I can get there. Also, she is on a vegan run to try to maintain better nutrient.

Thinking,

Did you know there are Diets that Can Control seizures in some.? These diets are mainly Low Carb, High Protein. I'm not sure a vegan run will give her the nutrients she needs. Please read the articles we have in Resources &/or Tips about Diets. There is more info on epilepsytalk.com. Just use her Search Tool to find the article.

I'm glad she did OK last nite. But, keep in mind, seizures can occur tonite or next week. Then again, maybe, none for a mth to a yr. This is w/out medication. You need to find a Medication Or a Treatment that works for her. As Angie said: to be started as soon as possible.

Love Candi

Hey Candi and Angie; again thank God a night without seizures. I am still working on the diet part; she is not happy with the low sugar part of it, but she is happy not to be shaking (seizure). Her seizures are a little bit different. She can walk and show me that she is having one, but the only thing she can't do is talk until she is completely out of the seizure. I am a bit scared for not choosing to medicate her, but I will wait and work with diet, exercise, and herbs. Maybe her episodes are due to the sugars she eats from her brother; her paternal uncle and grandma are type one diabetic. I am watching and recording what is going on with her to report back to the doctor. The day she had the two seizures she had a lot of sugar from her two lovely brothers and she was so hyped up; that is one reason I am trying the diet first.

Hi thinkingtoomuch,

A day without seizures is wonderful!!!

I had a psychatrist back in the 70s-80s who suggested a combo of diet and meds. He asked me if I was willing to give up some of my sugar intake for substitutes(i.e. yougurt instead of ice cream, trail mixes instead of candy bars, mineral waters instead of sodas, etc) It did help decrease my activity but the anit-seizure meds were still necessary.

Because of the side-effects I have experienced in the past 37 years I do understand your concerns/fears. But I must say that the meds are necessary if you are to give aaliyah some relief from the seizures I also must say that the low-sugar diet worked for a while but it is not a guarantee for everyone. We all respond differently. Eventually, the sugar-free method was no longer effective for me which is why I returned to the traditional meds.

I still follow a low-sugar diet. It isn't as bad as people think. There are many low-sugar snacks out there that are enjoyable.

Please think about the medication. This will be the first step towards finding the right one that is theraputic for Aaliyah. Yes, the first med choice might not be the one for her. But that will lead to other possible meds that might be beneficial to Aaliyah. The process of elimination is part of finding the right one.

During my seizures I could walk about but I didn't talk until I had come out of them. I was a zombie.

Miss Aaliyah needs medical intervention now. Please take the first step in finding one. Until the diet shows any probality of success, she needs meds to help stop the seizures. I was put on meds immediately. Other than the typical side-effects(drowsiness, headaches, nausea, etc), I wouldn't be concerned about the other rare problems that scare you.

Seizures are exhausting on the mind, spirit, and body. Fewer seizures with meds(and the possible side-effects) is a lot easier to live with. It has greatly eased the fear of the unexpected for me.

Please take the first step in giving Miss Aaliyah some relief.

love and concern,
angie

Hey Angie; My daughter didn't have any seizures until last summer; only then she had one for abut 3 or 4 seconds in duration including the bounce back time. She had another one on Nov. 30, 2011 it was a bit longer and the doctor noted it, but said it was not time to give any medication. She had the trid seizure on April 4th of this year. My daughter snuck a lot of candy and treats on the day she had the two seizures (Wed. just past May 16th). The next day she was still high on the candy so she had another 4 or 5 second seizure. I am keeping track and she will see the doctor on this week coming to discuss the issues we are having. I am going in for a second opinion as well for her. As of right now her longest seizure beside the one in Nov. last year has been around 4 to 6 seconds. She is able to walk, and move around while she has it, but her face gets a little involved with it. We talk about what she is feeling and how the seizure started to make a map of what is happening. She wants me to video it so she can see what happens. The doctor said to us that her seizures are temporary and they will go away soon, but I know only God knows the truth of this.

Mom

Hi Ms Mom,

My initial eegs were negative for seizure activity. My doc told my parents that the seizures were part of puberty and that I would grow out of them. With this thought the docs still gave me meds. That was 1975!!!!!

Ailayah's seizures sound like my first ones, short. But the difference is that I was totally unaware of what was happening during them. My family/friends told me that my early classic signs were wringing my hands, smacking my lips, or foot-tapping. Always had that gazed/faraway look in my eyes. Time was lost.

As I said earlier, I was able to cont my activities but I had no memory of them. Someone was watching over me for I never hurt myself when I was alone. Something guided me to places or persons of safety when a seizure occurred away from home/friends.

I think it's great that Aaliyah wants you to capture one on the video. If you do, please take it with you to her doctor so that he/she can view it.

I regret that I didn't ask for my lobectomy to be taped.

Good luck on the upcoming appt and on the second opinion. Please keep us updated.

angie

Hey Angie I will let you know what happens when i return to the doctor. Again another day without seizures and also I didn't give her any meats. I made a great big pot of bean (black and brown) with onions and I steamed some carrots to put int the middle of the beans for the sugar element of the dish. She and her brothers loved it; the kids were just gasy. Hopefully the new neurologist will give better reviews on her condition plus she has to see the endocrinologist per her onset of puberty as well, she has a busy summer ahead (doctors appointments).

Mom

Hi Mom,

You have a Smart Daughter! A few home videos may save you a trip to the EMU. Epilepsy Monitoring Unit. There are videos posted on other sites, like youtube.com. facebook.com & other social sites/ organizations groups are sharing a lot of Info too.

You are doing good. Sugar Can be a trigger for seizures. Even artificial sugars can cause seizures. They are Toxic to some people. My Sis had seizures B4 she was diagnosed as Borderline Diabetic. But, she had other 'reasons' too. Hormone Fluctuations. PTSD. Add in Genetics. Well, she is now 56 & Controlled, Diet & progesterone. My daughter has PTSD, Anxiety attacks, panic attacks, Stress, & now, Catamenial Seizures. (Hormone Fluctuations) Hers are controlled after 10 yrs by Lyrica.

Diet! Keep track of that in your Journal as suggested. Beans are Good! Protein! You need to stress the importance of all this to your daughter. I'm sure the DRs will run blood tests to determine what's what, in her case.

One Day at a Time. Time & Patience. HUGS!

Love Candi