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My young adult daughter suddenly has epilepsy!

Fri, 08/09/2013 - 19:20

Hi everyone,

So my 23 yr old daughter had a grand mal/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 occasionally 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?  Reading about all the side effects of the various drugs - they all sound horrific.  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

Comments

Hi Tracey, give our folks a

Submitted by Anonymous on Mon, 2014-03-31 - 10:10
Hi Tracey, give our folks a call at 1-800-332-1000 anytime 24/7 for assistance with your situation. You can also contact the Hawaii affiliate at 866-528-3058. Best wishes to you and your daughter.

I sent my now 23 year old to

Submitted by Mother of a daughter with epilepsy on Mon, 2017-11-13 - 23:19
I sent my now 23 year old to college and now she is home with seizures...they are unpredictable and uncontrollable... She was living a very independent like in Nashville now she home in Los Angeles and it's hard because this is new to me...plus she is so young...this is very hard to watch

HiMANY DOCTORS AND HOSPITALS

Submitted by regis on Sat, 2018-07-21 - 07:49
HiMANY DOCTORS AND HOSPITALS FOR 10 YEARS.  SON FINALLY SEIZURE FREE ON CANNABIS.

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