lost newbie

[serendipity324]

hi everyone...i have been lurking a few dAys, reading, gathering info and I just wanted to introduce myself. my name is Marianne, i am almost 48 and the last normal day I remember was arriving to work at 7:30 am on January 24th..I have a clear image of walking into the shop and that is the last vivid memory of that day, actually of a couple days. I had my first grand mal seizure at 9:30 that morning and another later that day in the hospital. I don't even remeber that time before, but I did work,talked with the guys,answered phones, even started a list of girl scout cookies I wanted to buy...but I've got nothing. I don't remember anything clearly for a few days..just bits of things in the hospital. I gather that's all normal. but nothing has been normal since. I struggle for words, thoughts and memory. I get lost. I cant walk straight, i talk funny sometimes, my mind wonders, i am told i babble, they say i zone out, then look like i will cry or that i look scared todeath...i am so not the old me....just a bunch of things I am sure you are all familiar with. I was started on Keppra in the hospital. had my MRI, CTscan and an EEG. the neurologist I met with last week has decided some of the problems I'm having may be related to theKeppra and has started weaning me on Lamictal overthe next few weeks then will wean me off the Keppra. then he will do another EEG over a few day period.
I am really struggling with exhaustion, sleep issues, feeling drugged, shakes, concentration and attention issues. my brain goes feeling like its racing and wirey and bouncy to just plain mush and stopping completely...for lack of better way to describe it. I hate noises now, lights bother me and there are some smells that just do me in.
I don't know if I am in some kind of medication adjustment period..if my body needs to adapt to meds?
I also am pretty sure I had a seizure in my sleep the other night...I don't remember the other ones, but I am told they were pretty intense and lasted long, but I awoke this past Sunday morning to my tongue bitten again. my cheek chewed up,my one arm hurting and just feeling really strange..I can't explain it. I just know I woke up exhausted and feeling strange. I know the doctor couldn't guarantee I wouldn't have anymore while on the Keppra and Lamictal...but I ally got the impression I couldn't..I guess not. :/
anyway, I joined this forum for some info,insight, help, support..I'm scared and I know my family is too. I am married to an awesome guy and our youngest is 23 and still livesat home, the older 2 live not too far away. I have seen them all affected so much already.
thanks for listening...

 

[Nakamova]

Hi Marianne, welcome to CWE!

You describe almost perfectly how I felt after my own first seizures. (They came out of the blue when I was 35). It took awhile for me to recover from the physical trauma and emotional disorientation of the seizures. On top of that, I was put on way too high a dose of meds in the ER, which meant I that I lurched when I walked and was spaced out and inattentive. Eventually, the meds got sorted out, and I got a handle on what happened and on what to do about it. (CWE was enormously helpful in that regard.) So I send a big hug your way, and the promise that as you recover and learn more, you will start to feel better. Be gentle with yourself, and give yourself time to heal. The seizures and the meds can affect your sleep and your metabolism, so in addition to the physical soreness, and "hangover", your body is still dealing with a lot.

Writing stuff down can be a big help. When you get a moment, try and write down anything unusual in the hours, days, weeks, or months leading up to your seizures. Were you under unusual stress? Were you sleeping and eating okay? Did you have any illnesses or infections? Any unexplained symptoms like headaches? Any food allergies? Any changes in diet or routine? Hormonal changes? Often epilepsy seems to be the combination of a predisposition (having a lowered seizure threshold for known or unknown reasons), and one or more triggers that push you over the edge. If you can identify out any contributing factors, you can potentially avoid or minimize them in the future.

Keep track of your medications too. Unfortunately it can be a bit of trial and error to find the right anti-seizure med and dosage. As you ramp up, the body and brain are trying to adjust to the medication, so you may feel shaky until things stabilize. Write down anything unusual in the way that you are feeling, and check in with your doctor to see if it may be a side effect. And feel free to check in here too -- CWE members can offer a heap of anecdotal advice, empathy and support.

Best,
Nakamova

 

[huskymom]

Hello Marianne! Welcome to the party
I, like you and Nakamova, started all the fun after I turned 40. It was really hard to adjust to the meds, and that was at a slow rate. I remember calling the doc and telling him I felt much worse. He asked me to hold on and let myself get used to everything. He was actually right. I have had to change medications several time to find the combo that I am on now, and still I have seizures. Not as often though! Hang in there, women are tough!!

 

[serendipity324]

thank you both so much for the welcome !!
you've both already helped me so much...i feel a little less crazy.

 

[qtowngirl]

Hi Serendipity... you came to the right place! I joined last June and am so glad I did. The range of fellow 'friends' on here are nice to have, no one understands US but US (though you didn't exactly say it I'm assuming you've been given the diagnosis as this is where you joined).
As nakamova and huskymom said, not to worry too much about feeling out of sorts and the shakiness, babbling, etc. Being fine one minute and having a grand-mal the next (and then more) is a huge shock to the system, and along with the instant medication it takes a while for it all to settle down, physically and mentally. Once the right drug and dose is chosen (yay that he's taking you off keppra and on to lamictal - lamictal works great for me even on a low dose, good luck with it), your body just naturally tells itself this is what is happening and the shock starts to wear off.
And please don't feel alone... being 'you' one day and 'whoever this is' the next is common for a lot of us, that first grand-mal has a way of biting us in the ass out of nowhere just when life was swinging along. And like nakamova said, keep track of as much as you can (without overwhelming yourself of course - keeping stress low is a biggie), and take deep breaths often. SO LUCKY for the great guy... they're essential aren't they! Keep in touch on here and let us know how you're doing.