Girlfriend With Epilepsy

[KNW]

Hey, so I've been dating a girl who is epileptic for a few months. As the relationship has been getting more serious and I learn more about her epilepsy, I've found myself worrying about it a lot. I was completely ignorant of the disorder before I met her, I never understood the dangers or burdens of the disorder, and always assumed every epileptic had defined triggers (the stereotypical flashing lights causing a seizure).

Well she has had approximately 1 seizure a month since we've been dating. And from what I can tell (haven't seen her seize) they are tonic-clonic seizures...she loses consciousness and tenses up. It sometimes results in her shoulder dislocating, and she fell in the shower the seizure before last. I guess she has been lucky that they've all happened at home (and sometimes while sitting on the couch or in her bed), but I sometimes lay awake at night just worrying about what could happen next. And my worrying is only compounded by the fact that I simply don't know a lot about the disorder.

I just want to here some outside experience and perspectives. She is the first epileptic I've known, so I don't really have anyone to talk to about it. Sometimes I'll find myself researching it and worrying (which led me to this forum), and I find comfort when I hear about people living long and relatively normal lives with the disorder. But due to the varying degrees of epilepsy, I don't really have a reference point to gauge these stories.

So what do you guys think? Any stories or reassurance to help comfort me? I just want to be able to sleep a comfortable 8 hours for once, haha.

Oh, and a side note. I get migraines (used to get serious ones about 4 times a week for a year) so I see a neurologist. And one thing we learned about each other within the first week of dating, we see the same neurologist. So I was thinking of asking her if I could tag along to an appointment, or maybe ask our neurologist about the disorder when I see him next (although I'm sure he won't disclose information about the patient to me).

Some basic info to get out of the way:

She is 22 (I'm 23), and she has been diagnosed with it since she was 18. So this isn't something completely new to her, and she's said the seizures were more frequent in the past, but they've been more manageable for the past couple years. But she did say that in the past couple months they have been more frequent--before the more recent seizures she hadn't experienced one in a while (maybe a year? I'll have to ask). One of her triggers is apparently her allergy to gluten, so she eats a gluten-free diet. She takes a daily preventative medication, Lamictal XR.

Some questions:

How severe does her epilepsy sound? I have a hard time sorting through information, I've read cases where the person just goes into a blank stare every now and then, to people who die in there sleep after frequent severe seizures. Does hers sound like a relatively normal case?

How clearly defined are most epileptics triggers? Despite her avoiding gluten and taking daily medication, does it sound like her treatment might not be effective? I'm not entirely sure how severe her disorder was before she took the medication or discovered her allergy. So I think this is something I can ask her.

Thanks, and like I said I just want some outside perspective to help ease my mind. Because worrying while not knowing exactly what you should be worrying about is a pretty crappy feeling.

 

[Nakamova]

Hi KNW, welcome to CWE!

It's tough to give definitive answers to your questions. Each person's epilepsy is so different, there is no "normal" scenario to gauge your girlfriend's situation by. There are over 40 different classifications of seizure disorders. Some folks have only one kind of seizure, whereas others will run the gamut.

Generally speaking, the goal of treatment is to fully control the seizures through medication or other means. But some people are more medication-responsive than others. If your girlfriend is still having seizures, she should discuss her options with her neurologist (if she hasn't already). These might involve increasing the Lamictal dose, or trying a different medication as an adjunct or a replacement. With medication there is a balance that gets struck between seizure control and side effects; it's possible that your girlfriend has already been on and off the "medication merry-go-round" a few times, and her current situation (with only partial seizure control) is the best result.

It's great that she has identified gluten as a seizure trigger, and has adopted a gluten-free diet to help. There can be more than one trigger however, and they can change over time. (They can be similar to migraines in this regard). Once the brain starts seizing more and more, it can get "in the habit" of seizing, and future seizures can happen with less provocation.

If she's willing, you should discuss these issues (treatments, triggers, history, etc.) with your girlfriend to get a better handle on her particular perspective. As long as she gives permission, there's no reason why you couldn't sit in on her appointment with her neurologist. (At times when my memory has been foggy, I've had a friend accompany me to my appointment and take notes). Take your cue from her -- if she doesn't feel comfortable having you there, no need to push it.

It's great that you are trying to get up to speed on her health issues. I hope you feel free to explore the forums here and to ask additional questions as they arise.

Best,
Nakamova

 

[Starfish]

Hello, It's so nice that you express concern for her, nothing means something to an epileptic or anyone for that mater than someone who actually cares. I would be you're stereotypical epileptic, strobe lights = seizures. But even with me the triggers are not always definite. Sometimes little things that normally wouldn't bother you cause a seizure. Sometimes big things that would almost definitely cause you to have a seizure, don't. She has been dealing with this for four years, so I'm pretty sure she knows how to handle herself and be careful of places where she might have a seizure. I think going to the neurologist together might be a bit much. Having a seizure around people, even people you care about is embarrassing, because it shows you when you are most vulnerable. Having seizures is not something people with epilepsy like to "show off." But no matter what the neurologist says about her epilepsy she's the only one who really knows if things are getting better and if she says that they are then they are.

 

[Cint]

HI KNW and welcome to the forum,

It is great to know you are concerned about your girlfriend's health and seizures. As Nakamova stated, there are many kinds of seizures and they effect every person differently as do the medications.

I'm one that has had SP (also known as aura's), CP's and TC seizures over the years and tried many different meds. My 1st TC seizure, I fell in the shower and was severely burned by the HOT water, so she needs to be very careful in the bathroom and kitchen as they are the MOST DANGEROUS places in the home for one with TC seizures. And there were definitely no flashing lights in the bathroom! I was having 4-5 CP a day and maybe 1-2 TC a month, so your girlfriend's sounds not as severe and since she knows gluten can trigger a seizure, then that will certainly help her out. Plus I had tried 11 AED's and have had numerous TC's in public, so I don't see any reason why you shouldn't go with her to the next neuro appt. if it is ok with your girlfriend. I wish my BF once upon a time would have cared so much. Then I would not have suffered so much humiliation.

 

[valeriedl]

I've had epilepsy for 9 years now. I started dating my husband about a year later. At that time my seizures were pretty bad, I was having at least one a week (usually more) and we weren't sure what he was going to do when he saw me have one. I usually only have partial seizures and the first one I had with him I ended up in the ER.

We had no idea what he was going to do but he stuck through it. He started coming to my neuro appts with me about a year into the relationship, he'd even take work off to do so. And as long as she says it's ok then you should beable to go to her's. This would be pretty good for both of you then you can understand what's going on better with her.

This might sound sort of odd but my husband has a son who is in his 20's and we couldn't wait for him to see me have a seizure so he'd feel comfortable being alone around me. We wanted him to see what I actually do during one and not be petrified about what he thinks that I might do.

When I finally had one after about 4 years and he saw that I pretty much get confused about what's going on around me (sort of black out), can't talk right and don't understand what people are saying to me. I know that he feels more comfortable being around me now.