hi (: new to the idea of epilepsy (long!)

[Gretel]

I'm Gretel; a 26 y/o female, married to a young Navy sailor and a mother to 5 fur kids (3 cats and 2 dogs).

I have my share of medical problems which have been with me since childhood; from food intolerance's and immune deficiencies, to psychological (several types of learning disabilities, anxiety, and a clear-cut case of ADHD).

However only 5 years ago I started suffering from occasional migraines w/ aura, symptoms very "classic" in nature. A year went by of no treatment until I could not handle them anymore. I was experiencing a migraine w/ aura 3 x a week, as well as experiencing migraines w/o aura, migraines w/o the headache (aura only), and chronic headaches. I would have some-kind of headache or migraine episode every day of the week.

I saw a neurologist after that, was put on Depakote ER and the migraines started to subside, and then ceased! I was on it for a year and by my neurologists orders I stopped it.

A year passed, and my migraines returned full force, as well as new symptoms started to become prominent.

Not only was I having classic migraines w/ and w/o aura, I was having migraines w/o the headache (aura only), and complete episodes of altered (and at times loss) of consciousness. During these episodes I would feel like I am in a altered dream-like state, like I know I am there but I don't, and I will do things I have little to no control over. My most famous is rummaging and wandering. As well as talking in gibberish. After the episode I am fine, tired, but completely aware. Sometimes I know what happened and sometimes I don't.

I saw a different neurologist who agreed on the Migraine diagnosis and put me on Topamax. After a few visits, and a few awkward episodes that are too disrupting to ignore I straight out asked my neurologist about seizures.

Considering I saw a neurologist for Simple Partial and Absence seizures when I was a teenager (19??), and was diagnosed with Pseudo-Seizures after 1 "failed" EEG (I had bad social anxiety at that time which I think altered their attention), he was reluctant to do/say anything. However after describing my own episodes in detail, he became interested fast and ordered a sleep deprived EEG scheduled in 2 weeks. He also told me even if the EEG is negative, he wants me to see a Epileptologist no matter what.

I was happy to hear that my matter was taken seriously, but at that same time reality hit me because he told me he "legally had to tell me I could not operate a vehicle, and under the law he had to put it on my record". I wasn't sure whether to laugh or cry? onder:

Either way, I am happy to find CWE. I have a lot of questions about Focal seizures themselves as well as Epilepsy as a whole, and a lot of information to find. I will most likely do more reading than posting, because I'm sure my questions are a bit juvenile!

 

[Belinda5000]

Hi Gretel,
Welcome to CWE you can have a migraine after a seizure a migraine can be an aura.

Topamax I've been on that one for quite awhile.

You have to go a certain amount of time sz free in every state usually 6 mnths before you can drive , you can check with EFA in your state or your doc.

If you don't know something always ask and post as much as u like.

I've had E 50 yrs.

 

[N Sperlo]

Hi Gretel.

A juvenile question here? We have a lot of questions, but I wouldn't call any of them juvenile.
I've lost my right to drive a few times, but I'm beyond that.
Ask whatever questions you want, and someone will answer, I'm sure.

Welcome

 

[Nakamova]

Hi Gretel, welcome to CWE!

Partial seizures can be tricky since they are often misdiagnosed as other disorders. But it sounds like your current neurologist is on the right track, and it's encouraging that he's scheduled an EEG. It's also encouraging that he wants you to see an epileptologist regardless of the EEG results. Many people with confirmed epilepsy (especially partial seizures) "fail" on their EEGs. Many neurologists assume that a negative EEG automatically rules out an epilepsy diagnosis, but this is incorrect. Good epileptologists are trained to use clinical data (such as your actual symptoms and how they respond to medication) to make the diagnosis. A positive EEG can play a confirming role in the diagnosis, but it's not the "gold standard" for such a diagnosis.

You might be interested in these links for more information about partial seizures:
http://www.coping-with-epilepsy.com/forums/f22/invaluable-article-simple-partials-auras-13324/
http://www.epilepsy.com/epilepsy/seizure_simplepartial
http://www.epilepsy.com/epilepsy/seizure_complexpartial

I'm sorry to hear about your loss of driving privileges, but it's important to be safe if you are experiencing a dream-like altered state (which def. sounds like a complex partial seizure). Here's hoping the epileptologist will help you get seizure control, and you will be able to drive again in the future.

 

[Gretel]

Thanks!!

Belinda - thank you for the info! And the welcome

N Sperlo - Thank you as well. I'm a bit self-conscious about asking questions in a territory where I know NOTHING about. The world of Epilepsy; everything from the terminology, to the medication, to the doctors are very new to me.

Nakamova - Thank you for the Welcome! And yes, I have been pseudo or incorrectly diagnosed with quite a few doozies, and I am thankful to be heard. Its more than just encouraging, I am outright grateful. Especially considering my fist neurologist diagnosed me with psychogenic seizures because of a "failed" EEG and I was dismissed. I am glad to be reassessed and properly treated.

Thank you so much for the links. I read them all, and found the most valuable article the Invaluable article

I still have quite a few questions and concerns, one to which I just made a topic in the Peer Support forum. Its quite a simple and embarrassing question, but it's one i have been mulling over for a good while.

Thanks again everyone for the welcomes! It's definitely a sign that I landed in the right place

 

[kaelieh]

I have migraines and epilepsy but I developed seizures and had one generalized tonic-clonic before I developed migraines. I hadn't had a seizure in years when the migraines started and the epilepsy was back with a vegenence, more frequent sezuires than before and in clusters... Topamax was my life saver, I was migraine free for four weeks, now I've had two in three weeks. Took me out for the day but the recoup wasn't as bad.

Welcome, to the forum. I love this place. I hope your doctors find you some answers. The not knowing is what irks me the most.