Newly diagnosed with epilepsy and have some questions!

[alb402]

I recently had an MRI, sleep study, and EEG done d/t having episodes of waking up in the middle of the night confused followed by muscle shaking. The MRI and sleep study were benign (besides mucousal thickening of my sinuses), but the EEG showed independent interictal theta wave spikes in my left parietal lobe. They showed me about 3-4 spikes throughout the whole EEG. During the light portion, I started to develop a bad headache followed by muscle shaking (mostly lower extremities) for approximately 5 minutes. She didn't continue with the hyperventilation portion. If this was a seizure wouldn't the EEG have shown continuous spikes and not "independent" spikes? My other question is: do these theta spikes always mean a seizure disorder? I left the office with Lamictal and was told to come back in 2 months for lab work. I'm hesitant to start the medication if what I'm experiencing are not seizures. They believe the seizure activity is due to head trauma I had at 3 yrs old that caused a seizure.
Also, these "episodes" seem to happen during the week I have my menstrual cycle - I'm wondering if they are possibly hormone related.

 

[Silat]

A seizure isn't always a convulsion, any abnormal electrical activity in the brain could potentially be a seizure, so it's hard to tell whether or not they're seizures at this point in time. What your EEG could have been showing is reactions to stimuli which did not lead into a full blown seizure, aka you had a momentary misfire in your parietal lobe but it began firing correctly immediately after the spike, rather than progressing into a full-blown seizure.

As far as hormones, it's very possible they could be linked. There are lots of women with epilepsy that have more symptoms during their cycle because of the increase in Estrogen, which can cause seizures in higher than normal amounts. It's also possible it could be a lack of the other "female" hormone Progesterone, which in addition to it's reproductive uses also calms the nervous system.

Head trauma at a young age can lead to seizures developing much later on in life, so that is most likely the root cause of your problems.

As far as your medication, there's no reason to be nervous of it. If it helps, that's wonderful, if it doesn't, consult your doctors about a change of medication or trying alternatives to medication. Also, don't worry about being a "burden" on your doctors by being involved in the process, it's your health and it's their job.

 

[Nakamova]

Hi alb402, welcome to CWE!

There are EEG patterns characteristic of epilepsy that can occur during a full-blown seizure, and there are also EEG patterns for epilepsy that can show up between seizures. So you don't necessarily need to have continuous spikes for an epilepsy diagnosis to be made.

The diagnosis can also be based on your symptoms alone. If your symptoms appear highly-suggestive of epilepsy, the neurologist may have feel confident in proceeding with an epilepsy diagnosis on that basis alone.

As Silat says, the head trauma could be a potential cause for your seizures, even with late onset. You may never know for sure -- the majority of epilepsy cases are of "unknown origin." The main thing is to focus on bringing your seizures under control. Give the Lamictal a try -- make sure you follow instructions to taper up slowly -- and pay attention to how you are feeling. Some people experience side effects that go away after the brain gets used to the med, some have no problems at all, some feel it isn't the right med for them. The main thing is to communicate with your neurologist letting him know how you feel.

Hormones are a factor in about 40% of the cases of women with epilepsy. You can read more about what's called catamenial epilepsy here: http://en.wikipedia.org/wiki/Catamenial_epilepsy

 

[alb402]

Thank you so much for your insight and encouragement Silat and Nakamova! I'm a nurse and understand the basics of what is going on - but being told what I've been experiencing my whole life is seizures is so scary to me! I've really been struggling with the fact that I don't know if what I'm experiencing are seizures or just not feeling well/anxiety attacks/allergies. I get a weird headache (almost sinus/allergy-like), feel sort of out of it, then my lower extremities tense and begin shaking. I read that seizures can mimic anxiety attacks and I simply can't differentiate the two.

I know I should try the medication (heck - I educate people on taking their medication all the time). However, I'm also a big believer in doing things naturally and would really like to identify my triggers and see if I can eliminate them without the medications. Especially since my seizures seem to only be partial seizures at this point in time. Does anyone know any good resources for doing this or have they tried doing it themselves? Or is there a good forum about it here? I'm hoping to make an appointment with a naturopathic doctor in the next few months (they're booked through August).

 

[Nakamova]

One way to identify and avoid triggers is to keep a detailed symptom journal. Use it record seizures (even if you're not 100% sure it's a seizure). Note what happens, when it happens, how long it lasts, etc. Also track physical, physiological, environmental, and psychological stressors -- things like diet, sleep habits, hormones, and general health issues and activities. See http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

You may be able to find success with some of the alternative approaches discussed here: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments
and this link also may be helpful:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/