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3rd Seizure Now
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MichaelsDad posted:
We are new to this, still bewildered and still scared. Michael is completely healthy his whole life now just approaching his 18th birthday, three seizures in three weeks. At the onset of his last two, his head turns strongly to the left outside of his control, then whole body convulsions for several minutes. Michael is the fourth of eight children. His younger brothers and sisters were so frightened to have witnessed this.

As with many of you, CT, MRI, EEG all normal. He is now taking oxcarbazepine since the ER visit last night. After reading the potential effects of this drug, I almost had suicidal thoughts or actions (well, not really). We've virtually never had anything in our medicine cabinet beyond tylenol. I have an innate mistrust for the pharmaceutical industry. Do any of you know if this drug is really well tolerated?

This is scary for us. I guess I just want to talk to people about this and not feel so alone.
Reply
 
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hawiian_girl_73 responded:
hi.

it is okay tofeel scared. my momamd her friendand college friend wereboth in one mpptel room the night before my college graduation adn I presented them with a GM in teh middle of the night. I was a walking zombie the next morning. Ialso had a broken ankle left from a car accicent I was in 8months prior to that.

2 szs by definifton equals epilepsy, but it is common to have tests to come out normal. Mine did not.I was also heaothy.

I have had szs in restaurants, in stores, wal-mart, ppl's houses, church, my own house (aince I have been married-17 years, but have only been dxd wiht it for 9 years).

szs have no care about when they s trile and tyeh are scary to wathc.

The drug he is now on is Tegratol (carbamazapine), works good on wither types of sz partial or genralized.

I am sure someone will be come back around and tell you more.

I take 400 mgs of Vimpat, 600 mgs of Lamictal, 50 mgs of Topamax, and 2 mgs of Klonopin. Plua I have a VNS or Vagus Nerve Stimulator which cna stop szs by running a very HIGH POWERED magnet over the VNS in your chest under your skin and it should stop the sz from hitting. IT can do thesame for auars. but that is for partial szs who have auras mostly. Some timnes p[eople with GMs can have auras as well. if he can not swipe minself someone in his family can . That can shorten ro stop the sz tehseverithy of it and shorten the post-ictal phase after it is over.

ask the doc to maybe put him in teh EMU so obseve him adn then they will get a etter pictur of his szs and can get him on teh right med or meds.

somtimes wriong meds can also cause unwanted side effects, so he may have to be absoeved.

nancy
 
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dancer86442 responded:
Hi Dad,

You have certainly come to the Rite place. I left plenty of Sites w/ Mom (the Lady you replied to. ). So chek them out.

Want 'alternative' treatments? For more Info & More Opinions visit coping-with-epilepsy.com You don't have to be a member to read their Info. Only if you want to join Discussions.

Dad, keep in mind, "side effects are what we watch for, not what will be." Even Tylenol has Side Effects. And although others' may experience side effects, others' won't. It's the same w/ Michaels' AED (anti-epilepsy med) Trial & Error. Give the med/dose 6 weeks. Proper nutrition plays an important part in helping his med to work correctly, too. Plus, keeps side effects, if any, at a tolerable level.

It's Important your son starts a Journal. More Info under Tips. I realize it can be hard to get a boy his age to do this. But, it will Help Him & his DRS. Please, Stress that point!

OK, younger kids. Teach them Proper Seizure First Aid. There isn't much to it. The main consideration is to remain Calm. Give them each a specific 'chore' they can do to help. Remove harmful objects, time the seizure, roll him to his side, find something to place under his head, video the episode, if possible. Call medics, if the seizure lasts longer than 5 min Non-Stop. Chek out the epilepsyfoundation.org site (also, has info about School, seizure types, triggers, causes, etc.) for books to help educate them. Books for All Ages may be available at your Local Library. Ask the Research Librarian about available books. Recommended reading for adults for over 15 yrs. Treating Epilepsy Naturally by Pat Murphy.

You Are Not Alone, Dad. We will be here to answer your questions & give you All the Support you may need. Be sure to chek our Resources for other Info. Education Is the Key to Coping. For You & your Son & Family!

Love Candi
 
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clarinet2 responded:
Dad,
This is a very confusing time for you and I know as a parent medications can be scary.

I would suggest speaking to a pharmacist on the phone or face to face. Have the pharmacist print out possible side effects of this medication AND what can cause interactions with this medication such as food, cafeineother medications or even vitamin suppliments.

Also ask the pharmacist how this medication should be properly taken, with meals and what time of the day.

I work in a pharmacy office at a hospital and I have learned so much from my fellow coworkers by asking questions.

Each person can react different to medications so not all side effects are the same for each patient.

Questions will be the beginning to learning more about this new journey.

Dana
 
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MichaelsDad replied to hawiian_girl_73's response:
Thank you Nancy. I appreciate your willingness to reach out.

Dad
 
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MichaelsDad replied to clarinet2's response:
Thank you Candi and Dana. Last night I held my boy in my arms while he trembled. His eyes fixed on mine but unable to respond. All of your concern and willingness to share your valuable experiences and knowledge base with me warms my heart. God bless you.
 
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saxofone1 responded:
Hi MichaelsDad,

I submitted a reply not too long ago, but it didn't post. I hope I can recall what I said.

I am currently taking oxcarbazepine 2X/day. I have been on this med since about 2000. I don't recall any unusual or scary problems that occurred. The usual feelings of being drowsy, dopey, sleepy, etc passed after time.

My first seizure was 3/27/75. FREAKED MY MOTHER OUT!!! My initial tests showed no signs of any abnormalities.

Right now, I'd do as the others have suggested. Watch his diet, moods, activities, etc. Ask Mike if he recognizes any similiar feelings prior to a seizure. This enabled me to alert family or others of a "possible' upcoming seizure. Not all this feelings went into a seizure but it did help warn them to be on the look-out. However, not everyone has such "sensations/auras".

Right now is the time to start a journal of all your son's activities. Also, start a list of questions to take with you to your son's next appt. Anything you can thing, ASK IT!!!

I'm the only one on either side of my family that has epilepsy. I think a cousin had a short spell of seizures but she "outgrew" them. My epilepsy came as a result of meningitis I had when I was an infant. Thirteen years passed before the seizures made an appearance. Like I said earlier, blew my mother away.

You are not alone. And neither is your son, michael. Please keep us posted as to what is going on. Does Michael, or any one in the family, have any questions for us?

angie
 
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MichaelsDad replied to saxofone1's response:
Thank you Angie.

Does anyone know anything regarding triggers we are hearing about including food dyes, MSG, Aspertame, Caffiene laden drinks like Mountain Dew, Monster, Red Bull, 5-hr. Energy, etc?

I hear many states have laws regarding seizure disclosure, but is anyone aware of state laws barring driving for any length of time while on new medication for seizures? (we are in Florida)

Is the intense head-turning to the left just prior to seizure familiar to anyone or any other intense pre-seizure involuntary event?

I know this question is really for Michael's Neurologist but can seizures in and of themselves (barring peripheral injury) cause brain damage?

Thanks so much.

Patrick (Dad)
 
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dancer86442 replied to MichaelsDad's response:
Hello Patrick,

In Resources under Hope & Epilepsy, link 2betrhealth, has a list of common Triggers. Aspartame is on that list. And Caffeine can be a trigger for some, too. Moderation or Abstinence. It will take time to figure out what's what. But, this is where a Journal will help speed things up. A Pattern will emerge. But, to know for sure if these things Trigger his seizures you need to go thru a process of elimination. Eliminate a Suspected source for about 6 weeks. Then add it back & determine any 'odd' responses. Since our Systems metabolize differently then others' we can only go by what works for Us. Like meds, what affects one, may not affect another.

Have you visited Coping-with-epilepsy for More answers/opinions?

Head turning. Just a guess. but, it could be his seizures are starting on the rite side of his brain. Be sure to include it in his Journal. Questions for Doctor under Resources, also.
Answer about Brain Damage:

http://www.ehow.com/how-does_4598154_seizures-damage-brain.html

Now keep in mind, my Sis had uncontrolled seizures for over 50 yrs. Her brain is still Sharp. I have had seizures off & on since babe/toddler. I have long & short term memory. Some I am sure is due to meds. But, Epilepsy is known to affect memory, also.

Love Candi
 
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saxofone1 replied to MichaelsDad's response:
Hi Patrick,

I recall times when my mother told the doctors that I turned my head. My epilepsy is located in the right lobe.

As the years passed, I noticed that when my diet was heavy with sugar(sodas, ice cream, etc) that my seizure rate was higher. I learned to do without the sodas and other sweets. It seemed to help with the seizure control and also with the meds.(remember, that is my case. We all are different.)

I was able to recognize possible up-coming seizures due to an unpleasant taste in my mouth. Other auras I experienced were a funny feeling in my stomach(butterflies) and a change in vision(much like someone is pouring water over a camera lens.)

Also, extreme heat or dehydration are known to generate seizure acitivity. How did I end up in Vegas? That's another story. Nothing but heat!!!

I have experienced no brain damage(don't ask my brother about that!!) The meds and the seizures did interfere with my recall and memory.

I forgot to mention to you that I am also taking Keppra XR.

I don't want to start rambling. If you have any questions regarding me, enter my screen name and the disc that I'm involved in might appear. There is one that I started that might interest you.

Cont to be strong for Michael. You'll be surprised as to how much a kid can handle.

Until next time,
angie


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