Decision - to medicate?

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tuna_fish9

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I'm new here - I could definitely use some advice!! It's so interesting to read everyone else's stories, so I guess I'll share mine (sorry it's so long!)

I'm a 20 year old girl. In 2003, I had a single grand mal seizure. I was referred to a pediatric neurologist. My EEG at the time showed no spikes, but general bitemporal slow waves, so I had an MRI, which came back with no problems.

Since I just had the one t-c, my neurologist recommended not medicating, which was definitely a good idea at the time.

Since January this year, I've been experiencing what my new neuro (outgrew the old one, unfortunately) thinks are simple partial seizures. 60+ twitches each day, mainly down my right side, plus 3 or 4 BIG jerks each day(the jerks are only down my right side). The jerks are noticeable enough to make me feel awkward - there's nothing like accidentally kicking someone, or unintentionally drawing on the table with a Sharpie!

I had another EEG this spring. This one showed the same bitemporal slowing, but also spikes in my left anterior temporal lobe (grade 4 disrhythmia, which I don't quite understand). Again, I went for another MRI, which was normal.

My neurologist believes that it's partial epilepsy. I saw him last in July. He ordered another EEG, and I will see him next on September 1st. He told me that we will decide (assuming the newest EEG shows the same spikes) whether or not to start treatment at the next appointment. He has no strong preference for medication vs. no medication, and told me he would leave the decision up to me.

I've been trying to weigh the consequences of treatment against the consequences of not treating in my mind.

- Right now, I'm not driving - I know it's not safe, for me, and for everyone else on the road, too. I really would like to be able to drive, though
- I'm in university, and I live away from home, with 3 roommates. For a lot of my day, I'm alone (walking on campus, working out, etc)
- The twitches and jerks seem pretty constant. I've been keeping a journal - they seem constant regardless of sleep, stress, menstruation, etc
- I do worry a bit that I'll have another grand mal; my neuro says there's no way of predicting that though.
- I feel awkward with the twitches and jerks. I don't like it when a kind stranger on the bus asks if I'm alright, or when I accidentally hit someone with my arm.

On the flip side:
- I understand that starting anticonvulsants is a long, long road.
- What if, in 5-10 years, I want to get pregnant?
- Side effects? Drowsiness, weight gain, etc?

I would really, really appreciate any advice, stories, etc, any of you might have. It's a big decision for me to make, and I want to make sure I've covered all my bases before I commit to anything.

Thanks for reading my super-long story!!

Una
 
Hi there Una

and Welcome to CWE!

Actually, that wasn't too long of a story, so don't stress :)

Those jerks you mention sound like a form of myoclonic seizures. I can understand how you'd feel awkward--have you ever thrown a book across a room yet, during one?:bigmouth::roflmao: LOL. I have. Should have seen the looks I got.

It sounds to me like you're making some pretty smart decisions. I would suggest a few things to add to your journal, though. Keep track of what you eat. How much, what, when. Also, keep track of things like computer/TV/video game usage. How much, when, etc. The reason is that some people are actually photosensitive....and that photosensitivity can be a trigger for seizures.

There are AEDs that are safer than others for use when pregnant. I've had 3 full term pregnancies, and 3 miscarriages. That is something that you need to talk to your neuro about. Side effects are common, and different for each med. That said, side effects will vary person by person, too.

If you check out www.rxlist.com, you can quite often get a lot of information about the meds that you are taking. Remember, you won't always get EVERY side effect. Some people don't ever get any side effects at all. For example. Keppra sometimes has a side effect called "Kepprage." (really big mood swings) Kepprage, though, can be managed, normally, by taking a dose of Vitamin B6 every day. Some people (*ahem*) have VERY strange reactions to Keppra.........reacting like an Energizer Bunny on speed, or seeing things in triplicate while they're spinning at the same time, but NOT have any issues with mood swings. (What can I say? I'm not normal.)

There are a variety of diets that can be used to help with seizure control that you can look into here on the forum.........the GARD, Ketogenic, LGIT and the MAD (Modified Atkins Diet). Something else to look into is Neurofeedback. It essentially helps to retrain the brain so that it doesn't kindle (seize over and over again).

Feel free to check out all the nooks and crannies here. You'd be surprised all the information that you're going to find. And the Padded Room is great for venting when you really need it. Trust me, we've all been there at one point in time.

Good luck, and take care.

Meetz
:rock:
 
Welcome!
I had to make this decision too. The thing that changed my mind was having a seizure at college. I've had seizure since age 6 but not medicated due to Mom's fear of meds. Born three months early, long story dealing with meds..
Anyways- I lived- Thank God- and was on many meds for various things. I started Tegretol XR at age 12-13 for a few years but stopped becuase I was not really serious about it and it was making me sleepy- kinda said "forget about it, I don't care, I'm sleepy all the time." So we stopped meds and seizure began to happen again but they were smaller complex partial seizures and absence seizures. Easy to deal with at least while around those who knew I had Epilepsy. But when it came to college, college internship, working around clients in voc. rehab setting- those people had no idea and it started causing embarassing troubles. By this time I had been on medicaitions for several years- started medication seriously, religiously and taking care of myself for the last 3 years now. It has changed my life since not having as many seizures as before. I had no idea what my life would be like without smaller seizures until I had close to none.
Now my seizures are getting in the way again and they are longer and cause more trouble on my body. I could have a grand-mal anytime but I try not to think about it- but I surely dont want to find out.

The decision should be based on how often do you have seizures?
How do you function in everyday life with seizures happening?
Can you work without seizures becoming troublesome or in the way?
How do others respond to you?
What would it be like if they were reduced or gone?

Meds: usually a medication can be tried for a short time and if you find they are causing trouble to you or making you sleepy etc, you can ask to be taken off meds. You are not totally stuck on them once you start. There are risks and advantages to taking meds or not taking meds. Its all up to you and what you find most important.
Talk to the neurologist and ask what he would suggest based on your situation, your life, what you do during the day, working, socializing etc.

Please take care and be safe-
Crystal
 
Thanks for the replies!

Crystal - that's exactly it! I don't think I'd even be considering drugs if I were staying at home with my (very watchful!) parents. I'm finishing up my undergrad (honors neuroscience), and I'm living on my own. My roommates are fantastic, but I really don't want to burden them with the responsibility of keeping a close eye on me. Especially considering my grad school applications are on the horizon, which may take me even farther away from home - the UK is seeming like an interesting option right now!

Since I'm studying behavioural neuroscience, this has actually been a pretty interesting journey for me! It's one thing to look at the literature behind the kindling model, but a whole other to be looking at my own EEG graph!

Where this whole deal will take me, I'm not sure, but I'm just doing my best to stay logical and level-headed - just like I am when I'm at school!

Una
 
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