Diagnosis: Epilepsy

[LynnW]

Well, I officially feel like I belong here now. I have simple and complex partial seizures, probably originating from the temporal lobe. (All of you who ventured a guess were spot on! I wish I had a prize to give you)

The Neurologist prescribed Trileptal. He said I must be medicated because I was in GRAVE DANGER if my seizures were not under control. He also said that the seizures will definitely get worse if not controlled. He said I will need to take anti-seizure drugs for at least 2-5 years, and then we'll talk again and he'll tell me why I need to stay on medication. WTF? Does he own stock in the drug companies or something???

So I have epilepsy. Why does that feel more like a label than a diagnosis? I still don't know WHY!! And I'll never be "cured". I thought I would be relieved to find out what my episodes were, but I now find myself very dissatisfied with the diagnosis. I have more questions now than before.

Anyway, I've got to go for now. I'm going to visit my mom, who is in the hospital recovering from heart bypass surgery (she's doing fine - thanks to anyone who sent healing thoughts and prayers her way). (And GUESS WHAT, Dr. Stupid Neurologist? I'm going to DRIVE MYSELF to get there! SO THERE!fft. I'll probably be back later to rant some more. Thanks and peace to everyone.

 

[Bernard]

I have simple and complex partial seizures, probably originating from the temporal lobe.

Not surprising given what you had described.

... He said I must be medicated because I was in GRAVE DANGER if my seizures were not under control.

Must be medicated - not necessarily. Must be controlled - yes.

He also said that the seizures will definitely get worse if not controlled.

That is the normal progression for uncontrolled seizures.

He said I will need to take anti-seizure drugs for at least 2-5 years, and then we'll talk again and he'll tell me why I need to stay on medication. WTF? Does he own stock in the drug companies or something???

The two year threshold was adopted largely because of a study that was done. They (doctors) all follow the same script it appears.

So I have epilepsy. Why does that feel more like a label than a diagnosis? I still don't know WHY!! And I'll never be "cured". I thought I would be relieved to find out what my episodes were, but I now find myself very dissatisfied with the diagnosis. I have more questions now than before.

Welcome to the club. That's the way it is for the majority of people diagnosed with epilepsy I think. Doctors first priority is to arrest the seizures. Drugs are the fastest solution for that. Once they get the seizures to stop, *they* stop worrying about it. It's like putting a bandaid on a large wound to stop the bleeding, but forgetting to stitch it up so it heals properly. They just hope the wound will heal itself in time.

Fortunately, there are a few things you can do on your own to help "heal the wound".

... (And GUESS WHAT, Dr. Stupid Neurologist? I'm going to DRIVE MYSELF to get there! SO THERE!fft. ...

Please don't let your emotions vis a vis the doctor/diagnosis/instructions cloud your judgement on whether it is safe for you to get behind the wheel of a car. If your seizures are uncontrolled, frequent, random and come without warning, you will be endangering other people.

 

[LynnW]

Bernard – thanks for moving the post. I thought I had posted in the Foyer, but apparently not. I guess it was still early, and I was kinda rushing.

I would like to apologize for the statement I made about driving and the stupid doctor. It was a flip remark and I shouldn’t have said it. I was still feeling angry, but unsure of who or what I was angry at. I have chosen for now to direct it at the neurologist. In a short period of time, I have gone from having total control of my life, to relinquishing some of that control to a person who I just met and barely know anything about, other than he went to college longer than me. I did get my prescription filled yesterday, so I am going to follow my sympathetic brother’s advice and “just take the medicine and get over it.” But I will also continue my own research. Bernard, thanks for the links above, they are a great start.

As for the driving issue, I know it has been discussed on this forum before. I have read the threads, and I don’t want to rehash the issue. I do realize that seizures can be unpredictable, and I would NEVER want to endanger others. This is a really tough issue for me.

First of all, we live in a rural part of Kentucky, in a fairly isolated part of the county. There is no public transit. My husband commutes 1 hour each way to work, so during the day, he’s pretty much out of the picture. My family relies on my ability to drive, and it is not an inconsequential thing to make other arraignments, especially on short notice. This morning, the school nurse called to tell me my 8 year old son got sick at school. I had no choice, I had to go pick him up. There WAS no one else.

Add to that the fact that my husband and kids haven’t really bought into the “Lynn can’t drive” thing. They know I *shouldn’t*, but who’s gonna pick them up from dance class? Oh, and by the way, we’re out of milk, could you pick some up? My husband has such a long commute during the work week, that I feel guilty asking him to take over my driving duties. I am working out alternatives, but it will take time.

I hope you can at least understand where I’m coming from. I really love this forum. There seem to be a lot of very knowledgeable, friendly people here, and I hope to get to know you all better. Thanks for listening.

 

[RobinN]

Lynn - I HEAR you... we took the meds that the neuro prescribed. I think the seizures actually got worse. I know for a fact that the side effects had a terrible impact on my daughters life. Additional symptoms, terrible self esteem, social implications etc.

We are actually seeing better control without the meds, and following a good nutritional plan which does include a handful of supplements. Yesterday, we began neurofeedback. However even the Director of EEG Institute did say it is only a part of the picture and that she was very glad to know that we already had a good handle on the nutritional side of it.

Surround yourself with knowledge of the disorder and you will be at a higher place to see the bigger picture. Read Dogtor J's latest posts. There is a wealth of info in that man.

 

[skillefer]

Trust me...I totally understand. I drive too...even though right now, I prollly shouldn't.....but sometimes it's a matter of having to. Trust me...I know...and that's with my family being supportive....

 

[BuckeyeFan]

I am one of the friendly ones. I will leave the intelligence about E to those more qualified. They will be able to give you some guidance on future choices.

In my opinion, you should try the medication for now to get your E under control until you decide what is best for you. Medications do work for many, many people, but other choices do exist. Use the bandaid until you find your longer term solution.

I have written elsewhere here about the anger. I really try to channel it at inanimate objects or at least at appropriate times. Venting about your neuro here is one of those channels. Then when you have your appointments, you might be able to work more calmly with him.

I also understand the driving issue and others depending on you. I guess the thing to think about here is that missed gallon of milk worth risking your life and then your family would have a much worse adjustment. I know "Easier said than done!"

 

[Elaine H]

Hi Lynnw

I just want to say that I so know how you are feeling, I was diagnosed in 1986 with Right Temporal Lobe Epilepsy, and I was determined straight away to learn as much as I could about it. I wanted to know everything, how it started, why it started, and what were the doctors going to do about it? I was 23 years old when I was first diagnosed, but like you were saying, I had what we call "wobblers" I would be staring, or just like miles away, I have so many comments in school reports like.." Physics requires the ability to concentrate, Elaine totally lacks this ability" I was always getting told off for staring out the window, it makes you wonder how many kids are out there now going through the same thing, I feel so strongly that it is such an incredibly misunderstood illness, even now in the 21st Century, teachers, employers, they just don't get it.

I used to go to the specialist, he'd peer over his glasses, ask me how I was, what drugs I was on, and if the drugs weren't working, he'd just say, take another one each day and come back in six months, that was it, no real time was spent with me. Then my mum decided that I wasn't getting the best treatment, and she demanded that I was offered an alternative, and could I possibly be considered for surgery. I had found out that I was a forceps delivery, and they had caused scar tissue on my right Temporal Lobe, so I had a focus, an area that could be removed. It was thanks to mum that I had the tests and eventually the surgery in 2000.

I can sympathise with you about the driving, it may not have been so bad for me I guess, as I didn't drive when I was diagnosed, but during those five wonderful seizure free years, I took my test, passed, got a great new job, and started really living, my partner and I brought a lovely old house, had a few trips to Egypt, Malta, Tunisia, I really started to enjoy life again, and then it came back, and I lost the license, the job, and my newfound independance, I almost wish I hadn't had a taste of driving, I can see my car from where I am now, it's rusting away in the drive.

I am trying to be really positive about this next surgery, I've got Hippocampal Sclerosis, that's why I have such a bad memory, I bet you do too? It's this part of the brain that looks after the laying down of short term memory so they are removing it as it doesn't work anyway. I'm studying Epilepsy Care & Management with Leeds university, and I've nearly finished writing a book about my experiences, mainly in the workplace, I've lost count of how many times I've lost my job due to the epilepsy, and I feel so strongly about raising awareness that I've spoken in The House of Lords and The Commonwealth Institute in London, I've done a lot of tv and radio too, and been in a few magazines and papers, I just want to help the kids of today and tomorrow with epilepsy, it is so misunderstood in the UK, what about in the States? Have you had any prejudice because of your epilepsy?

It would be great to hear back from you, try doing what I do and stick your middle finger up to epilepsy, I've always said that it's not me that suffers with it but the people around me, I'm not usually there if you know what I mean? I try not to let it affect me to much, I have the odd Tonic Clonic seizure, but it's usually like you Simple and Complex Partial seizures. What's a typical seizure fro you? Do the auras/Simple Partial seizures terrify you as much as they do me? Some of them really freak me out!

I've got my dad coming to stay with us for a couple of days, he wants to see me before my op, I unfortunately lost my dear mum just before Xmas, I hope your mum gets well soon if not already? They are so precious aren't they? I just know I'm gonna cry when I see my dad!

I hope to hear from you soon, and you're right, it's a wonderful website, it so makes me realise that it's not just me against the world sometimes, and I'm glad you liked the poem!

Cheers

Elaine x

 

[rfrench]

Hi Lynn!

I can totally feel your pain,I wasn't allowed to drive until I was 33 years old.It can be very difficult coping with not having a drivers license.I was blessed with a wife and family members that took me places I needed to go.Your husband will understand and I understand you are independent and don't want to ask for anything,but what keep me from even thinking about driving was I didn't want to drive and have a seizure and hit a school bus full of kids.
I had to take all kinds of meds too but none seemed to work completely. It wasn't until I had the brain surgery that I am seizure free.
Epilepsy seems to be the forgotten illness.

 

[Elaine H]

Hi Rfrench
I had brain surgery in Sept 2000, I was ok for five wonderful years, and now I'm facing more surgery on June 26th. Tell me about yours? Where abouts did they operate? What type of seizures did you have? I'd love to hear from you?

Cheers

Elaine x