New here.

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

O

onedayatatime_0212

New
Messages
9
Reaction score
0
Points
0
Hi. I'm new here. I've been diagnosed with epilepsy since June 2013. I've had three tonic-clonic seizures and so many complex partial seizures, I don't even know. It's been really difficult learning to cope with all this. My seizures started on a very stressful day. I was having my final exams at the time. I didn't realize I had a TC seizure when I came to. I was already dressed before my seizure occurred. I just thought I fell asleep, and how careless it was of me to that. I went and gave my final even though I was so groggy, and sore. I didn't even realize I bit my tongue, I felt something but I thought I had a blister. I came home, I was so tired I went straight to sleep. I was so exhausted I didn't bother even checking my tongue in the mirror. I had another TC seizure. My roommate only heard me make "weird noise." I checked my tongue in the mirror and it was all bloody and I realized I had a seizure. I knew it but I couldn't believe it. A week afterwards, when I was visiting my parents I had my third TC seizure, and I had to go the hospital in an ambulance. I hated it so much. I found being waken up by strangers i.e. the paramedics extremely overwhelming and scary.
I was put on 1000 mg of levetiracetam.

Then one day I felt like everything was dizzy, my heart started palpating and I was confused, and felt like I was going to fall down, and started to breathe heavily. I called my neurologist right away. When I went to see her, she said it sounded like I had a panic attack. This made me extremely angry. I knew I didn't have a panic attack and she told me to see her after three months. I now know these were complex partial seizures.
I would continue to have multiple episodes of CPS per week. Up to 4-5 times at worst or 1-2 at best. One day it was so bad I finally made another appointment with a different neurologist . She increased the dosage of my medication to 1500 mg.
Since then I haven't had any CPS while awake. I wonder if I just had one in my sleep. I know the best way go figure out is have an EEG in a sleep study or maybe an ambulatory EEG. I was asleep and wanted to wake up but I couldn't. I couldn't move or open my eyes and it felt like my head was spinning and everything was black. After it passed, I opened my eyes and have a dull headache on the right side of my head.
I don't know if I'm being paranoid. I feel crazy and stupid.
Life had been difficult since I can't drive. And having to depend on people is difficult. I'm finding it extremely difficult accepting all this. I know I have epilepsy, I understand that.
I have to study for my boards but I find it difficult to even just read for too long. I decided to take a "break" until my seizures are stable. I worked so hard in school. What was the point?

I don't understand how to live with this.
Anyway, sorry for writing so much. And anyone reading... thanks to listening to me rant.
 
Hi, Oneday! Welcome to the forum!

I'm sorry things have been so rough for you lately. Seizures are scary enough, without all the unpredictability they throw into the mix.

Just a guess here, but maybe your first doctor didn't explain her whole thought about your incident where you felt dizzy, heart was palpitating, etc. Anxiety can be a side effect of levetiracetam. It's not unreasonable to think that since that experience is a new thing for you, it might be the medication. If you have more of these episodes or if they are worse be sure to call your new neurologist. It might point towards the need for a med change. It sounds like your new neuro thinks it's a seizure, though, so it may be a moot point. Inability to concentrate (read) could also be a side effect of your med. Next appointment also be sure to mention you want your mind sharp for school. That might also influence which drug you are prescribed.

Here's a link to the side effects:
http://www.drugs.com/sfx/levetiracetam-side-effects.html

Not driving is a serious bummer. It makes life hard. Try to line up friends for emergency rides if you can. Especially to places that aren't bus-ride-friendly, like Costco/sams club, or to have medical procedures done.

Hang in there. It does get better. The seizures are better controlled. You learn accommodations to make your life and school easier. Speaking of accommodations, when you go back to school meet with the student accommodations person - she can help you with things that will help you keep on track, like perhaps extra time to read and take tests.
 
Welcome, and I hope you find some answers and support here. This place is a godsend! I know things are tough right now but I assure you, they will get better. In time, you will adjust to any limitations you may have now and after you find a med/dosage that works for you, your seizures may get under control. When I was diagnosed last year I mourned the loss of my neurological health, and adjusting to the "new me" was hard. My seizures were completely out of the control and was referred to a surgeon for temporal lobe surgery. But, after a change in meds and dietary/exercise lifestyle I've been seizure-free for 6 weeks. You just need to find what works for you....which can really be quite a challenge.
I wish you well and hope that you feel welcome!!
 
Hi Endless and BrandiBrat.. Thanks for replying. I truly appreciate it. Yes, those episodes I described are confirmed partial seizures. My heart no longer accelerates when I get them because I'm used to it now. The first time though I was freaking out because I didn't know what was happening. Usually the PS happen when I'm awake, I'm not sure about what happened when I was sleeping but I plan on talking to my neurologist about that.
As for not concentrating on reading, that's because of these headaches I get, which I know can be a side effect of levetiracetam... my neurologist says it's due to my seizures and hopefully once under control, my headaches will also get better.

And Brandibrat... I've been grieving over the "loss of my neurological health" as well. I understand I have a life long, chronic condition now. And I don't care I need to take medication... I just hate it when I get these partial seizures. I feel so weak and helpless afterwards. Who wants to feel helpless? My first two TC seizures I was around/in bed... But my third I was cooking at the stove, and my family says I wandered away from it and starting seizing... sometimes I think what if I didn't move... I don't even remember moving...I'm like I could burn my face or something. You know? I feel like I'm in complete mercy of my environment. It depresses me a lot. But I've seen that keeping a routine of sleeping on time, taking my medication on time, really helps me a lot.

Thanks for being awesome and replying. This helps a lot.
 
Partials can be scary. I started having simple partials, the complex, and it was almost ten years after I was diagnosed before I ever had a tonic clonic.

I see you already get it. One day at a time. That's a good way to go at it. Its scary and not being able to drive is a straight up pain in the ass. I work three jobs and only one is within walking distance.

Be sure to get everything taken care of and come back at it with a running start. It is possible to live a normal life.
 
Hi and welcome!
sorry that your going through a hard time. I know how scary it all can be.
It not so bad once everything is under control.
hang in there!
 
Thanks everyone. These words of support help. My family tries their best to be supportive but I guess they don't know how. They freak out more than me. They want me back to being my old self. It's going to take time.

And my neurologist says I need to be seizure free for 6 months before I can drive. Right now that feels like forever.

But yes, I'm hanging in there. One day at a time. I wrote most of this stuff down when I felt my lowest and most depressed. So really, thank you all for your kind words.
 
Hello onedayatatime I truly understand what you're going through even thoug I am not on a dosage as high as yours. And I understand what you mean about working so hard and how scary it is to be surronded by people you dont know. I hate this also so much. And it's not fair I agree. I honestly believe that God has the final say and that you are a beautiful person inside and out but on this Keppra make you appear to the world as a monster. I will keep you in my prayers and pray so hard that you are blessed and that you may never need this medicine every and confuse the doctors as to the extreme that they dont know why you were ever on it period. In the mean time take care and pray!


Sent from my GT-P5113 using Tapatalk
 
Hi Tierra. Are you on Keppra yourself or someone you know? Are you talking about the side effects of keppra like mood swings, aggressiveness, depression, and etc...


Thanks for your prayers!
 
I can relate. I was having complex partial seizures that were misdiagnosed as panic attacks also. During mine I'd scream and run around. I'd had no memory it had even happen unless something was knocked over or I was in another room in my apartment that I hadn't been in before or if I went to bed I'd wake up on the couch. Meds did nothing. I had MRI showed a blood vessel malformation that was leaking. I was removed but left over blood and scar tissue leaving me with simple complex that effect all my sense but I'm alert. Looking back my parents remember me having absent seizures but just thought I was a day dreamer. It's been a trial and error with meds over the years. I can't drive or work yet either. Good days and bad days. I keep a journal to keep remind me of the good days I have. Helps when you're having a bad day.

As my cousin says, welcome to the club. Best wishes.
 
Last edited:
onedayatatime_0212 said:
I've been grieving over the "loss of my neurological health" as well. I understand I have a life long, chronic condition now.
Click to expand...

*tears*
welcome, and hugs. you wording it that way really got me. E has been with me almost 20 years and i've felt that way several times, but never put it in those words. having recent brain surgery brings instant emotion (ha who knew?!) and your posts are touching, mostly in the sense that though new to it all, you 'get it.' big high-five for accepting up front that it's a life-long disease, and a shitty one to be dealt, but it IS possible to enjoy your life in many ways.
best of luck with it all and keep us posted you!
 
qtowngirl, can't take credit, I was quoting BrandiBrat. But yes, I definitely understand. The biggest irony is that I've studied epilepsy in class before... Never did I think sitting in class that it was THIS horrible and that it can change your life so much... and I guess I bring a lot of emotion is that my family doesn't understand me at all, want me back to my old self but I've changed you know. They don't get it. My friends listen but they don't get it either. Sometimes I just feel crazy.

What I didn't mention was that my first neurologist thought I was having pseudoseizures because it was a stressful time. And then she was saying my partial seizure might have been a panic attack. And like I said that made me angry because I knew I didn't have a panic attack. It was completely different. So I ended up having so many partial seizures for 3 extra months... until one day it was so bad that I just called the neurologist and ended up seeing her partner who I like a lot better. It's important for a doctor to listen completely to what you're saying you know and not just write the patient off...
 
Thanks for all welcoming me.
And I know I mostly sound down but I'm not like that all the time, I'm venting a lot here because I feel like people can understand and relate. :)
 
onedayatatime_0212 said:
Thanks for all welcoming me.
And I know I mostly sound down but I'm not like that all the time, I'm venting a lot here because I feel like people can understand and relate. :)
Click to expand...

we do understand, and will continue to.
don't worry about feeling down, is just a standard 'up then down' part of epilepsy emotion.
and yeah i noticed after brandi's comment, so kudos to both of ya, but really your stuff as a whole was impressive. you really seem to grasp it, and are willing to do what you need, accepting this is your new life. pat on the back my dear, not an easy thing to do.
 
Hi everyone. I continue to keep having complex partial seizures. My neurologist switched me to keppra 2000 mg just a week ago and today recommended that I take 2500 mg/day--- 1000 mg in the morning and 1500 mg in the evening.
I'm beginning to feel extremely depressed. I feel like this will never end. I keep having seizures. I'm trying my level best to be positive. I know keppra has a side effect with messing with your moods and depression. But this isn't the keppra, it's me. How can I not be depressed if I can't even be seizure for longer than a week? I feel extremely upset.
 
You must log in or register to reply here.
Back
Top Bottom