New diagnosis but seizures for years

[Katiered]

Hello, I'm very glad to find such a warm, welcoming group of people out there with so much kindness and caring for others. I am relieved to find you here.

I've been having seizures since I was 14 (at least, my terrible memory leaves major holes in my life. Only major events stay over the years), and now at 27 have finally said the right words to doctors to get into a neurologist wh confirmed temporal lobe seizures.

At first hearing this diagnosis made me feel so much better; my weird feelings and memory problems made sense finally! Now a week after that conversation, and my first week into topamax I've realized that shortly after that feeling faded. Today I realized how depressed I've been. And now I feel quite foolish, I've had these for 13 years minimum, and am feeling so silly for being upset about them now.

I guess I'm just looking to find out how your diagnosis went, how you felt. How your feelings progressed. I've found a lot of information online about everything related to the seizure, but nothing about the feelings surrounding the rest of what this means to you and your life.

I really appreciate your time, and your feedback!

Katie

 

[Chaz1]

Hello Katiered,

Warm, warm welcome to CWE.

It’s such a good question you ask, my Son has E not me, as we drove out of hospital parking lot after his diagnose E I said, so relieved it’s not a brain tumor Son, he looked at me in surprise...then his E journey started at 23 and he is now 27 and well, so many alternatives in conjunction with meds – can help……when you are ready to explore, the info is available.

These E meds take a bit of time to adjust to, watch for anything out of norm and make note of it…for some the 1st med will control the seizures, others, its trial and error. We have found it’s very helpful to keep dairy, just record all out of the norm, any sensation, behavior you name it.

I Have to share this, I found it so informative…..look past the word child….just do…

http://www.theseeprogram.com/html/s_e_e__library.html

Here we learn from each other, we care share and vent and some.

Welcome aboard

 

[qtowngirl]

Welcome Katie,
There are not enough words to tell you how normal your emotions are. Sad, crying, depressed, scared, worried... it's a real mixed bag, before and after diagnosis. I've had epilepsy for 19 years and will do my best to answer your questions.

My diagnosis was about the 3rd most traumatic day in my life. I was 25 and had two tonic-clonics appear out of nowhere. Immediate diagnosis and sent on my way with carbamazepine (tegretol). I was not aware at the time that the 'episodes' I'd been having for 9 years prior to diagnosis were partial seizures, and didn't find out until 3 years after.
Fast forward: a year and a half ago (I'm 34) I found out I needed brain surgery. 2nd most traumatic day.
A few months ago after staying in a seizure unit for 17 days I learned the worst. Originally they thought it was my left hippocampus but after extensive testing realized it was not only part of that but also my entire left amygdala. My left side is a lot more fucked up than I had realized and getting worse by the day. Memory now? Yeah right.
I've always had a fairly successful life, good in school, memory was always very sharp, etc., so they're confident my right amygdala has been helping out for awhile and should mostly perform on its own.
I cry every day. Many times hysterically. And it's maddening, b/c if I had been properly diagnosed at 15 when the partials started (was told by a psychiatrist it was PTSD), the lesion I have developed over the years may just not be there.

I can't say it enough Katie - you cry as much as you need. It may take years to accept that this is your new life - it did for me and does for many others as well. You can learn stuff online, if in the right places, but this is the best place to talk/learn about your fears, feelings, and the rest of it. Thanks for listening, we're all in this shitty boat together

 

[Electra]

I felt relieved in a way after I was tested but really upset too because the hospital never did tests on me until I ended up in emerg after grand mals. I was always told...yeah you have anxiety...go home but I knew something was not right...felt so stupid. I felt unplugged and then plugged back in again; that something was seriously wrong with my brain because this was not normal. I couldn't tell anyone because they would think I was loony. I don't worry anymore. No grand mals lately just partials which I can deal with... But I dislike saying I have E or have a seizure disorder but I do and that's it. I have told my friends and co-workers at work and have a sticker of who to contact if I have an episode or grand mal at work. Hopefully it will all disappear in the near future...fingers crossed

 

[momof3boys]

Welcome to CWE!

well for me, I was just an infant when I was dx'd with epilepsy, at the age of 18 months old. So I dont know what it was I was feeling when I was dx'd. But I can tell you that over the years of having to deal with seizures and take medications, Its been and up and down rollercoaster ride for me.

 

[Katiered]

Thank you so much for your stories. It really helps me understand what other people go through... And it let me cry without feeling terrible. I really appreciate your replies. Thank you all so much

 

[Fedup]

Katiered

I am reading this with interest I would love to answer your question and in a way I suppose I can. I can identify with momof3boys because I was at lest that age and so have treated it as normal, its the medication and the side effects that are the worst but lately its the depression on its own. qtowngirl is right though cry all you want, man or woman never be afraid to cry.

 

[jyearta]

I had seizures all my life, but my parents couldn't deal with it.
.....long story....

I was 18 when I was diag., just married. I'm 60 now.

Back then there was no computer, I had to reply on the words of my Dr.
I found this forum in 2011, Have found so many answers to questions.

Hope you find this forum to help for you also.

 

[MuayThaiFighter]

15 years old I started having some "odd" feelings. Cognitive problems, word recall, just a feeling of being in a dream. Then when I turned 16 these became almost daily, after about 7 months they became less and less. I was diagnosed with depersonilization, a form of depression I think, the psychologist openly admitted she never saw anything case like mine. So I went until I was 21, life was great, memory was sharp. One night I had what I called an "episode" except this was far worse. After 8 months of being put on just about every kind of drug the psychologist gave up. Then I had a breakthrough seizure after a reaction to a certain drug. The seizures became more frequent and im still in the process of finding out what is really going on.

I'm 25 now and I feel totally different, my brain is in shambles, its hard to except that what I thought was such a small thing at a young age was something totally different. You have every right to be depressed and even pissed off. Everyone wants a name for the face of their affliction.

 

[Nakamova]

Hi Katie, adding my welcome to everyone else's. As you can probably tell, CWE is a special place, with members who are great at filling in the blanks...for all of us.

I'm lucky I think -- my path to diagnosis was pretty straightforward. I had a tonic-clonic seizure out the blue when I was 35. An EEG showed "classic" abnormal brainwaves for epilepsy, and that was that. I did resist the diagnosis at first, and I've tried going off meds a few times. Been through the usual stages -- denial, anger, bargaining, depression, acceptance. My seizures have been controlled by meds for nearly 5 years now, which makes it easier to "accept" epilepsy. And CWE has been a big help in providing perspective, information, and support.

Best,
Nakamova

 

[arnie]

Hi Katie, I had my first witnessed GTC sz when I was 24, but then in retrospect and talking with my parents and such I realized I have probaby had spilepsy most of my life, but typically with nocturnal szs so no one to see them. Probably also the majority of them were only partial szs so they wouldn't have drawn as much attention. I tended to hang out by myself a lot as a kid, too.
Anyhow, for whatever reason my hospital stay, starting on meds, etc. didn't seem to really bother me a whole lot. My family and wife were very supportive, and since I could tell that my wife was really freaked out by it I suppose I tended to downplay however I might have been feeling about it. Even now, 30 years later, she still gets scared even of my partials so I try not to talk to her much about them, and I'm glad that she doesn't see most of them. I'm on meds that keep the big ones at bay and don't have lots of side-effects, and I'm really busy with lots of things in my life that I enjoy, so I guess e is just a part of my life. Probably a pretty big part, but I don't feel it limits me. This is a great place to be to talk with others about e and not worry that they are not going to understand. Find out all you can about e and the meds your docs want and don't be afraid to be very involved in your own care. Best to you! Carry on!