Brand new, scared to death.

[laurenj813]

Hello everyone, I'm Lauren and I'm new to the forums.

I'm sure this has been posted many times, but please be patient with me. I'm extremely overwhelemed at the moment.

I experienced my first 2 seizures this past week. After the second one, I went to the ER and had some tests run: CT, blood work, heart tests, and was referred to a neuro after nothing showed up on those tests. They're reffering to my seizures as "onset seizures." What does this mean?

I have my first neuro appointment tomorrow and I'm just wondering what I can expect to happen? The nurse who scheduled my appointment mentioned some things about talking and setting me up with drugs and lifestyle management and tests. I know everything I'm saying sounds like word salad, I'm just really overwhelmed.

Thank you all.

 

[Nakamova]

Hi laurenj813, welcome to CWE!

Gosh I remember exactly how you are feeling -- it IS overwhelming, and a lot to take in quickly, especially when you are probably still recovering from the seizures themselves. I'm glad you've found CWE -- members here have lots of info, advice and support to offer, so please feel free to ask away.

"Onset seizures" just means that these are the very first ones you've had, and may or may not indicate epilepsy. An epilepsy diagnosis usually isn't made until someone has had at least two seizures. Because your first ones occurred close together, it's unclear whether they would be considered as two separate seizures. Do you have any idea what may have caused them? Things like fatigue and low blood sugar can be contributing factors, as well as food sensitivities (MSG, aspartame, etc.), physiologic stressors (infection, illness), etc.

The neurologist will discuss with you the likelihood of an epilepsy diagnosis. Often they like to have EEG results before making a diagnosis one way or the other, so he/she will probably schedule an EEG. Usually it's a "sleep-deprived" one, meaning that they ask you to stay up all night beforehand, and then run it first thing in the morning. The neuro will probably also talk about treatment (usually meds). Did they put you on any in the ER? Are you still on them? If so, the neuro will talk about whether you might stay on that med, switch to a different med, or go med-free pending the results of the EEG.

As far as lifestyle changes go, if you had a tonic-clonic (grand mal) seizure, you're probably not allowed to drive for 6 months to a year, depending on the state you're in. Other than that, it's a good idea to be moderate -- avoid stress, get plenty of sleep, eat and drink healthily, etc. If you go on a med, you need to be careful with alcohol consumption, depending on your individual sensitivities. There's more good info here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

It can help to write down any questions for the neurologist beforehand, and have some one go with you to the appointment to help you ask questions.

Let us know how it goes.

Best,
Nakamova

 

[RobinN]

Hi Lauren - Welcome to CWE
I remember being where you are. Thankfully we live in the era of internet information, and connection. It saved my sanity to learn all I could on the subject and bounce ideas around with others.

Take some quiet time and really look back over your life the past few months. Make notes of anything out of the ordinary. Do you mind saying how old you are? My daughters first two seizures were at the age of 14, I was told since they occurred on the same day they were considered as one. Hormones and diet played a huge role in lowering my daughters seizure threshold.

You can expect the ideal scenario at your doctors visits, but then again... ours were not always ideal. Most important is to trust your gut instincts. Trust and verify.

Understand that everyone has a seizure threshold. Yours (and my daughters) have been lowered for some reason. With time and much care... my daughter appears to be seizure free (10+ months) and she remains med free 3+ yrs) .

 

[CelloPhone]

Yeah, "onset seizures" refers to the fact you don't have a diagnosed seizure disorder, so they know to look for all the causes of seizures instead of assuming it's epilepsy (hence all the tests they ran to rule things out). As for lifestyle, things like sleep-deprivation, caffeine, exercise, alcohol consumption, stress, and other common things can be major seizure triggers. So minimizing these risks can reduce the likelihood of having a seizure.

You already had a CT, so the next test will probably be EEG (where they connect electrodes to your scalp with very sticky stuff that takes awhile to wash out of your hair completely (it just feels exceptionally oily, not like having gum in your hair) to monitor your brain waves. It'll probably be sleep-deprived, both to maximize the chances of getting a reading while your asleep and of actually recording a seizure during the EEG. Abnormalities often appear between seizures, but there are plenty of people who have normal EEGs between seizures. The test is painless. They may also schedule you for an MRI, which is fine except it's noisy, which gets annoying. If you're claustrophobic, they have open MRIs that are less confining, or they can give you a sedative. That would be to check for brain structural issues. The CT scan came up normal, though, so I wouldn't worry about a tumor or anything like that. But it could give clues about the nature of your epilepsy, if you have a particular epilepsy syndrome.

The neurologist will also do a routine neurological exam (with more components though than a primary physician would), and ask questions about the nature of the seizures, family history, and stuff like that.