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My young adult daughter suddenly has epilepsy!
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TraceyG58 posted:
Hi everyone, so my 23 yr old daughter had a tonic-clonic seizure out of nowhere (we thought) last month while driving at night over a mountain road. Luckily, her awesome boyfriend was with her and was able to get control of the vehicle before something horrible happened. In the next 36 hours, she had 2 more big seizures, one while sleeping and one (luckily also) while getting an EEG in the neurologist's office. Since that occurred, the doctor was able to see that she's having complex partial generalized seizures in the right temporal lobe - I think that's what he said! He immediately put her on a big load of dilantin, and she's been taking that for about a month now. It turns out that she was having partial seizures (the staring, out-of-it for a minute kind) a year ago, but no one realized what was happening, and she sort of brushed them off and then she said they stopped. She recently moved here to our home in Hawaii from San Francisco to live with us and scuba dive, sail, and get work on boats, and now all that's on hold. When this happened, she was on some heavy antibiotics for an ear infection, and a new birth control, and the doc thinks that may have triggered all this activity again and made it worse. Anyway, now of course she can't drive, can't dive, feels like she can't "party" (well, was told no drinking and she likes to have a few beers or cocktails with friends of course!) and is really depressed. She hadn't had any other episodes after the last big ones until a couple of days ago, when she had a few partials while sleeping. (Her boyfriend noticed). The doc upped her dilantin, but is in process of switching her to Lamictal. Anyway, just wondering if anyone out there has good advice for her or us as her parents as to how to help matters. I assume she'll be able to drive again once things are stabilized, but she feels her life is on hold and is having a hard time dealing with the new reality. It's hard here on our rock in the Pacific with no public transport and things are far apart. No one wants to be on drugs forever, is that a given? What are the best treatments for this? I feel like nutrition and proper rest are very important too. It's just such a crazy thing to happen when she's always been so healthy and nothing bad ever really going on! Again, of course we feel super lucky and grateful that it played out the way it did, and many people have WAY worse problems, but it's just so confounding as to why this even happened in the first place. She will have an MRI soon, and we'll see what's up with that. Anyway, thanks in advance for any advice/comments! Aloha -
Tracey
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dancer86442 responded:
Hello Tracey,

Welcome to Epland/epilepsy Community. Well, from what I read, she had a seizure disorder B4 the tonic-clonic AKA gran mal occurred. Rite? It is not unusual for One Type/form of Epilepsy to develop into other Types/forms. Especially if left untreated, I believe, Those 'spaced out' moments known as Absence Seizures, may have Stopped, but, would eventually have reoccurred. But, the DR is Rite, also, in assuming the Anti-biotics &/or B/C could have triggered the tonic-clonics. I was really Pissed Off at my Primary, who Knows I have seizures, yet gave me an anti-biotic that clearly stated Seizure activity as a possible Side Effect. I am fortunate to be on anti-seizure med that has controlled my T/C's for over 25 yrs.

It will take Time & Patience to put the puzzle together as to Why she started having seizures. And it may be a possibility she/you will never know Why. Over 65% of those w/ Epilepsy are diagnosed w/ 'unknown cause'.

What can you/she do? First: start a Daily Journal. More Info under Helpful Tips/See All. If she has a cell phone there is an app that she can use to keep track of seizure activity & assist w/ the Journal, too. Learn Proper Seizure First Aide! Teach all those she associates with. I realize that Epilepsy is Not something Easy to talk about, but, so few ppl Know the proper procedures. There are a Lot of PPL all over the world Trying Hard to eliminate the myths & Ignorance of others'. But, it is Still basically, 'word of mouth' & needs to be shared! So, Proper seizure first aid. Think of the Letters that form the word TRUST. When seizure starts T=Timing. Seizures normally last 2-3 minutes. Anything over 5 minutes call EMT or take her to ER yourself. R=Remove objects from around her that could hurt her. U=Undo any constrictive clothing S=Place something Soft under her Head & Stay w/ her until she fully recovers. T=Talk soothingly or turn on soothing music. Do not attempt to restrain her & Never put any objects in her mouth.

It's Important for her to know she is not Alone. Encourage her to join us or if she has a Facebook acct please search for & Join, National Seizure Disorders Foundation Community.


Life Long medication: No it is not a Given. There are 'alternatives'. But, finding a DR who Believes & initiates 'alternatives' is extremely Difficult, although not Impossible. But, meds or alternatives, it is 'trial & error' for each of us. Diet is one of our Alternatives. You can learn about the various diets some use on this site: http://www.epilepsytalk.com Just use the Search Tool w/in the Menu. No need to join to read Phylis' articles. Then there is Chiropractic Specialists, Yoga/meditation, neurofeedback & most recently, Medical Marijuana as alternatives. Not the Kind you Smoke. Although That can be beneficial for some. It is an oil derived from the plant leaves that is the newest 'finding' & it does not get a person 'High'.

I encourage you & your Daughter to Educate yourselves. Our Epilepsy Center has lots of Good Information. Not to mention Lots of other sites that have as much if not more Info. You can find some of these sites in our Resources & More under Popular Discussions: Weblinks for Epilepsy

Seizures do Not occur on a Daily basis for some. Some have hundreds a day. But, us more fortunate one's maybe once a day/mth/yr. It varies from one Epilepsy person to the next. We are each 'unique'.

I do Hope the Lamictal controls her seizures. Diet plays a role w/ our medications, too. Proper nutrition can diminish &/or eliminate a lot of the Side effects of any given Anti-seizure med. Please use our Drug Info Tab up Top to Learn More & read user reviews. Just keep in mind; Side effects are what we Watch for, not what will necessarily be. Depression: Counseling & Vitamin D3 can Help. Avoid Anti-depressants!

Encourage her. Support her. There is Still Lots of Things she Can do!

Keep us posted. Know I care. Hugs!

Love Candi
 
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saxofone1 responded:
Welcome Tracey,

I have had ep since '75. It stopped me from doing some things put it never totally hindered me. Your daughter will slowly find what she is still capable of doing as well as what she acitivities that she will be cautious of. Epilespsy does not mean that one's life is over.

I have read Candi's post. As usual, she has shared my thoughts. Candi is a wonderful.

You will find this site to be very helpful and supportive to your daughter, family, and you. We are here to help each other by passing on info, answering any questions that we can, guiding one to info sites as well as sharing our personal experiences.

Do you think your daughter would be interested in joining us? It probably would be beneficial to her. Many of us remember our first seizure and the concerns/fears we had.

Please let her know that we are here for her.

angie
 
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jenbayly17 responded:
Tracey,
I am glad you found this group and hope you do make use of the great support you can find here. Candy and Angie just helped me earlier this summer through a rough spot and have made me more aware of triggers that can bring on seizures. There isn't a great age to find out you have seizures but I will say it is hard to be in your twenties and have friends that may not quite understand the repercussions she may have if she has too much to drink. You definitely want to check with the doctors on that subject, I have had different opinions from doctors to pharmacists but I choose to stay away from the alcohol just to make sure it doesn't lower the effectiveness of my meds or cause me problems. Her life is definitely not over and doesn't have to come to a screeching halt. She just needs good support from you and her boyfriend that seems to be concerned and on top of noticing things already. with the support of her family and friends she will get through it. I know it is scary to think of being medicated for a long period of time but don't overthink it too much until you get actual test results back. Taking medicine each day can help control the seizures some and sometimes completely. but it takes time to get the right combination down. Keep optimistic and know that as crazy as life can get with seizures it sometimes makes us appreciate life more in the end. I now think of myself as lucky to have only seizures that I can mostly control in comparison to some that have terminal diseases. I know that is kind of a depressing way to think about it but I try to view it as a way to reach out to others with any type of health concern and help in anyway I can. she will have a new kind of normal once she finds out more from the doctors and gets more direction, but keep coming to us with your concerns or questions. Good luck with everything.

Jen
 
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hula_dancer73 replied to jenbayly17's response:
hi tracey,

I livei n Hawi'i as well on O'ahu,

I had a something similar occur but I was alone, when it happened.

I had a car accident that was caused by epilepsy, but at the time ems and hospital personel were not looking for it or even suspected it. they did exrays thru my mouth to get to my spine and junk like that.

8 months later I did have my fisrt sz. IT was a T/C the night before my college graduation.

They got worse and worse and more and moer frequent. SO my mom complainedabout it and got me a neuro who dxd but had lousy bed side manner, so we left hum, then found another one who was an epileptologist who was way to arrogant and then some, so after he did the VEEG and other oether testing and called me a fake multiple times, we left him and that epilepsy center, Then we were referred to the one I have had for just over 6 years, I have had 3 szs in his office at different ocaddions.

It showed on the EEG along with the VEEG and the other types of EEGGs,so I had my driving taken away, I had hit a tree head on and the one I have now said that that brought out the epilspy more. I can not wowrk.

I was born on Maui,and at 5 moved to the mainland and then at 15 or soething I went to live on O'ahu. Currently at UH oso even though I can not work or drive there are still things out there that we can do.

I have Complex Partial szs out of the left Temporal lobe. Sometiems it will generalize sometimes it won't,

I was implanted with a VNS and it is really helping with the control of my szs. The doc can make adjustments at his end and you can control it at your end.

your sz type is perfect for the VNS. Talk to your neuro about the possibity of one next time. you can stop them, or shorten them.

just a suggestion is all.

mahola

Nancy
I live on O'ahu in West Honolulu-GO UH Warriors!
 
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bonnieboreanaz responded:
Hello Tracy,

I myself had grandmal seizures from when I was about 2 until I was 12. they had a hard time getting them under control. of course this was during the 70's and epilepsy was not really understood by all, so lots of parents did not want me around their children, I really only had one friend she lived next door and her mom worked at the hospital as a nurse with my Mom.
at age 16 I started to have petietmal(Black outs) which I would just brush off as if nothing happened a few excuses from my Mom for missing classes due to the fact I had no clue where I was to go. I would be writing notes in class black out and just continue on after a few seconds like nothing happened. then in my 20's I started to drink and that brought on seizures so I had to stop. She will get her drivers license back but only after she has been seizure free(or they are undercontrol) for 5 years it will say on her license that she has epilepsy and is limited to how much she can drive though. This does not have to stop her life she can go out with friends and out with her boyfriend like normal she just has to take precausions that is all. Diet will help some as well but has to be monotered by a Dr at the hospital at first and afterwards nurses and Drs it is called Ketogenic Diet . Living with Epilepsy can be done but it will take time to get used to. do some research on
http://www.webmd.com/epilepsy/guide/types-epilepsy as well as http://www.webmd.com/epilepsy/guide/understanding-temporal-lobe-seizure-basics also you can get much information off this site as well as support.your Daughter can live a normal life and this may and maynot go away but it doesn't mean that she can't lead a normal life like everyone else and have her dreams come true. encourage her and give her much support there are many new techniques used now a days for epilepsy the MRI is a good idea because it might be just some scar tissue or something else which can be surgically removed. please contact me if you wish. email me.My son is about to turn 21 next month and is starting to have seizures again after growing out of them. bonnieboreanaz@gmail.com is my email look forward to maybe hearing from you and I wish you all the luck and my prayers are with you and your daughter
 
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calliemay98 responded:
Hi Tracey,
My name is Callie.. And I have epilepsy disorder I'm fifteen years old.. I saw that it was posted seven months ago, but can you help me anywhere.. I was recently diagnosed in Vanderbilt.. And it does feel like life is on hold.. I have to go homebound (homeschooled) because of my seizures.. They are that severe and I have been to school maybe a week and a half this entire semester, because of Dilantan and then they put me on topamax and it didn't work either.. Now they have me on Limictal, and I'm not through the full recovery of it, but it helps me a lot.. I warn that your daughter be careful with her emotions because that's what sets off mosts of my seizures.. So, please, take my warning seriously..
 
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hawiian_girl11 replied to calliemay98's response:
Aloha,

Callie, I am not a doc but mking a suggestion that they watch their emotions because that is what sets your szs off is just you.

Everyone is different and everyone's triggers are different emotions may trigger yours off but might NOT trigger hers off.

I take 800 mgs of Lamictal and have NEVER had any problem or problems with it and have been on it since 03.

just because I have not had any problmes with it doesnot mean that the next person won't.

no 2 people are the same and no 2 szs are the same. no 2 auras are the same either.

I also take Topamax, and KLonopin

I have a VNS implant as well. I have a very high powered magnet that comes with it after the surgery and All I have to do is run it across the device that is under the skin and it will either stop the sz from happening or slow it down. IT can stop the aura as well.

nancy
 
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dancer86442 replied to calliemay98's response:
Hello calliemay,


Welcome to our Epilepsy Community.


Go to Helpful Tips & find the Daily Journal Info. Please start a Journal ASAP. This is more than just tracking seizures or noting meds.


We welcome your Input, but, it seems you have Lots to Learn. It is as Nancy says: We can have different triggers. Although your trigger is a norm for Lots of ppl. Even Happiness can trigger seizures in some. Visit epilepsytalk.com to learn about other triggers. You will note her site in tips or Resources. If you do visit, you need not join to read the articles & you can find the article by using the Search Tool in her Menu. Just use the word 'triggers'.


How long have you been on Lamcital? Eat Nutritiosly! Note anything/everything 'unusual' in your Journal. Give the med 2-6 weeks & if you are still having seizures or have intolerable side effects then Insist on trying Another medication. I would like to point out that you have other options. There are 'alternatives'. Diet, (yes, Phylis has an article on that, too ) Yoga, meditation, neurofeedback, even Chiropractic Specialists. But, at your age, I would ask the DRS to check your Hormone levels. Hormone fluctuations can cause seizures to increase b4 & during your Mthly. You will note a pattern if this is the case, once you start your Journal. Do your 'homework' about Catamenial Seizures.


Keep Learning, Keep asking questions. We will be here for you. Hugs!


Love Candi
March 26 Epilepsy Awareness Day Advocate


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