New with no idea how to handle this diagnosis

[Mommy_BLCSPC]

Hi everyone!! I found out almost 7 years ago that I have Epilepsy. The first doctor I saw told me very little about what was going on. He kept saying he didn't want to lake me. I switched doctors, but waited 5 years before seeing anyone. I spent those 5 years telling myself I was really just crazy and needed a good shrink and a good happy pill, and then everything would be ok.

I found out from my new neurologist that I have Frontal Lobe seizures. He told me I need to stop lying to myself and come to terms with it for my own sanity and safety. After hearing that, I decided to go online and do some research on the topic. Unfortunately, all I have found is that it is complicated, confusing, and their are no definitive answers to any of my questions.

They think I've had this my whole life, but because of crapy circumstances growing up, no one noticed. After my oldest son was born, I started getting such excruciating headaches that I really thought I having a stroke at only 23. That's how I got diagnosed with Epilepsy.

Because of my own unwillingness to accept my diagnosis, they have gotten worse. I now start with the pain in my head, then it progresses throughout the day, and ends up being a full blown tonic-clinic seizure.

I seem to have other issues that fit the description of Frontal Lobe seizures symptoms, but they could also be explained by mental health issues. Now that I've accepted that I am Epileptic, I'm afraid to ask my neurologist about it, and possibly find out I'm not really Epileptic, just nuts.

I am all alone in my battle, with little to no support. I am praying someone on here will understand, and/or have some suggestions on what I should do to handle this crazy mess of confusion.

I have read a lot about it online, and it scares the crap out of me. I have been on Trileptal and now Lamictal, but have seen very little in the way of results. Then,I think maybe that's because I'm crazy. Please help. I'm so scared about all of this, and so confused.

 

[Cint]

Have you seen an epileptologist instead of a neurologist?

More info on frontal lobe epilepsy:
http://www.epilepsy.com/epilepsy/epilepsy_frontallobe

 

[Fedup]

Mommy_BLCSPC

I am sorry to say this but it does not sound like you have accepted the fact you have epilepsy, it sounds like you are saying ok I got epilepsy how do I get rid of it. It does not work like that, you need to stop and realise once you have epilepsy you have it for as long as it takes there is no quick fixes. You want to believe more that you are nuts and by doing this you will drive yourself nuts.

There are a lot of people here who have had this all there lives others a few years or months it makes no difference we are all still scared. Everybody here understands your situation we have all been there and we wanted the same answers you do, there are no quick fixes, you need to sit down with a cup of coffey and think I have been told I have epilepsy so I have to make the best of a bad situation, I am going to need a little help but I can do it. Ask all the question you want we will try and help.

 

[Mommy_BLCSPC]

Thank you both for the replies. Cint, I didn't know such a thing existed. I will try that if my neurologist hits a wall and can't help anymore. Right now, I have one I really like.

Fedup, thank you. I really needed to hear that. I think hearing it from someone who knows what it's like makes it more real.

One of the hardest things for me to understand is how it seems like I have 30 different types of seizures. Our like they get progressively worse over the course of the day. Any ideas why this happens?

 

[Fedup]

Mommy_BLCSPC

Why does it happen and to understand, there are so many reasons that can be given for this happening, so which one do you want but in truth does it matter. Right now you have epilepsy and you need to get to terms with this first then look for reasons, there is head injury, it can be sever trauma, the stress at the time the list goes on. Until you get good control over your seizures the ones not controlled will seem worse, so to speak its the easy way of putting it. Do not forget there is the chance they can get better. But first tings first sit back and realise what you have, say it and mean it then accept you have to live with it, but its you who will beat it not the other way around. Its your life, you run it.

 

[qtowngirl]

Mommy_BLCSPC
You want to believe more that you are nuts and by doing this you will drive yourself nuts.

couldn't agree more. Fedup, well put.
mommy if you were given an epilepsy diagnosis that means you have epilepsy. you take that home with you from that appointment and that's it, the beginning of a new life. there is no trying to get out of it or making excuses that maybe it's not really E. unless you had a very incompetent neuro at the time then you have it, and as fedup said, time to start believing it. the longer you don't the worse your seizures are going to get. take charge!
and welcome to the forum, it's the best place to be.

 

[BrandonA]

I understand how you feel, it can be an emotional roller coaster when you have them. Not to mention the physical effects it can have on you. take each day and do what you can with it. Sometimes you may not feel well, but when you do, take advantage of it! You can do it, we all can. Be sure to see someone who is a specialist in epilepsy, they will do the most good for you.