Just another thing.

[froggy]

Hi everyone! I'm Jess and I look forward to getting know you, and learn more about all this epilepsy stuff. I'm not new to the medical stuff, I have cystic fibrosis (CF), CF related diabetes, and fibromyalgia, but I've only had 2 seizures so far. All of my tests after the first one in July were all normal and I was told that I had a pretty small chance of having more. But wouldn't you know that a week ago I had another one.

They seem to be of the tonic-clonic variety and I was started on keppra. I will be seeing my neuro again in a month to get their take on things.

I am a little nervous about being home alone now since I'm pretty much useless for the entire day after a seizure. I don't remember much of the day and my BF said that last time I even had difficulty communicating with him. So any advise would be much appreciated.

 

[Bernard]

Hi Jess, welcome to the forum. :hello:

You can be post-ictal for some time after a seizure. During this time, you may or may not be coherent or even remember what if anything you say to your BF. Hope he's the patient sort. It helps.

 

[epileric]

Welcome Jess

I know that feeling after a seizure. Mine usually aren't tonic/clonic but I know that feeling afterwards. I feel like I can talk until I actually do try. Even when marking down my seizure on the computer program, I often have to look at previous days to type in sz for seizures but I feel fine until I actually try to do it.

Meanwhile, check out the nooks & crannies of the site & make yourself at home. If there's anything specific you're looking for, try the "search" option at the top of the page on the right (between "New posts" & "Quick Links").

 

[travel bug]

Hi Froggy:hello:

Welcome to CWE; everyone here is really nice and supportive.

I hope the Keppra works well for you. I've had good luck with it though it makes me sleepy, but it sometimes takes a while to find the right drug, dosage, or combination for the individual. Yet another thing I'll keep my fingers crossed that Keppra's the one. I was lucky, I only had to try one other drug first.

I truly hope that you don't have any more seizures, but just in case, it's helpful to keep a journal of diet; activities including exercise, time on the computer, watching TV...that sort of thing; sleep; glucose levels; etc, so that in case you do have seizure activity, you can possibly identify triggers.

I've only had one tonic clonic, the rest have been simple partial motors, but I've padded sharp corners, moved anything that might hurt me or get broken by me in the event of another TC just in case. It may just be giving me a false sense of security, but hey, it can't hurt

Best wishes!

 

[froggy]

Thanks everyone! I've poked around the site a bit and like what I see so far.

epilepsy.com has a good seizure diary with an app for your smart phone. I've tracked as much as I can remember (much with help from the BF).

My aura seems to be a drunk feeling, worse the closer the seizure gets.

So far no one seems to think that my blood glucose has anything to do with it. I keep a really tight rein (sp?) on my diabetes. Luckily I don't have to take a long acting insulin at night so I've never woken up with a low, and these seizures have happened shortly after 5 am both times. The only common factor that I've been able to determine is that I woke up and shortly after seized.

The first time we were camping, I woke up, saw the sun was coming up so I knew it was 5-ish, rolled over to go back to sleep and the next thing I knew I was in an ambulance. With this last one I had to get up at 5 to start an IV. My alarm went off and I had such a hard time dragging myself out of bed. My BF says I was banging into things and dropping things, which I sort of remember. Then he heard a really loud crash which was me falling. He came running out and found me on the kitchen floor in front of the open fridge and freezer. I have no idea why I would have been in the freezer. I think I bounced my face off the fridge door though. I had a lovely black eye.

I'm seriously considering one of those medical alert systems. But I don't think I will get one unless I have another seizure. With any luck I won't need it!

 

[Endless]

Hi, Froggy,

Welcome!

Sorry about your seizures and your black eye.

Hey - that clumsy thing where you bump into things and drop things - I get that way before I have a complex partial. It's a good heads up.

About being alone. I live alone, too. There are days when I've either had a seizure or an aura all day where I'm not able to do much of anything. For those days I have meals in the freezer all ready to go. I've safety-proofed my house as much as possible so I don't worry as much about hurting myself during a seizure. That includes a new lock on the door that prevents me from going out and wandering around outside during a CP. And I have friends and family who have agreed to call me every day and make sure I'm okay. I agree, it would be comforting to have someone here with me, but that's not the situation. So I make the best of what I have, and really, it's okay.

I'm crossing my fingers that the Keppra will be the right drug for you and your troubles are over. Most people get along just fine with their first drug, after fiddling around with the dosage it controls their seizures, and they are home free. Some people have to fiddle around a lot more, try a bunch of different drugs, etc. I'm hoping that isn't you!

Again, welcome. I'm so glad you found us!

 

[froggy]

I actually live with my BF and his son, but I'm on disability and don't work so I'm home alone while my BF is in school. I'm going to get my neuro's take on this to see exactly what I should do. So far I've purchased a belt clip for my phone so I can have it on me at all times, and taped an envelope on my front door for EMTs that has a print out of my medical history and meds, and I've ordered an new plate for my medical alert bracelette.

 

[valeriedl]

I have a husband that is wonderful, he takes care of me when I have a seizure and won't leave my side until I'll completly out of it. The day after he'll call me several times to check in on me to make sure I'm doing ok. He works in a mill so it's hard for him to talk on the phone unless he's on break so sometimes we'll send text messages to let him know what's going on with me.

I spend most of my day at home alone too. I usually never have grandmal's but I think I have just about every other kind. I don't know if I've had a seizure unless there is someone there to tell me that I've had one. I could go a whole month without a seizure and then maybe have 3 in one week.

Can you have someone call you several times during the day? You said you always have your phone on you, I do too. So if someone calls and you don't answer the phone then they can find a way to go to your house, or get someone there to make sure you are ok. Also if you've hurt yourself then they can get you some help too.

Luckily I have family that is my neighbors and my parents buisness is next door and my retired grandparents live next door to that. If I don't feel right or just don't feel like I should be home alone I can go to one of those places or someone will come and stay with me.

As said above don't do any cooking unless it envolves putting it in the microwave. If you don't feel safe using the oven or stove when you are home alone then don't.

I hope you find something that works for you!

 

[valeriedl]

Also I don't know if you have a pet? One of my cats knows when I have a seizure and will not get off of me until I'm out of it. Usually he'll stay on me for even an hour or so after it. I guess he just want's to make sure his mommy is ok and keep her from getting hurt. He's a pretty big boy, and strong so he's not one that's easy to just push off.

 

[froggy]

Aaaaw! What a good kitty! We have 2 cats but I'm not sure if either of them tried to warn me with this last one. I wasn't home when I had the first one.

 

[luckylady]

have also had tonic/clonic seizures

Hi...I have had those same types of seizures in the past. I've been fighting this disorder and four types of seizures since I was 9. Unfortunately, I know what you mean about wanting to pad everything. I don't have any kind of aura before my seizures, either, which truly stinks, but I had been seizure free for over two years up until about two weeks ago, and then I had a tonic/clonic seizure. It is the reason I am on keppra now, and probably the reason I want to cry a river and then throw a bunch of garbage in it. (That's supposed to be funny, btw.)
Anyway...the best advice I can give you, is to ask your doctor about taking a higher dosage of your meds at night rather than in the morn. The reason I suggest this is because before we got mine under control (with the exception of a couple of weeks ago), I was having them right after I got up in the morning as well. After he (the doctor) had me adjust my meds to where I was taking more of it at night before I would go to sleep (thus having more in my system the next morning), everything worked out wonderfully.
Good luck!
Peace, love, and hope...:e:

 

[froggy]

Oh that's a great idea about taking more at night! Thanks! I will definately bring that up at my appointment.

 

[Dragongiraffe]

Hi There
I just wanted to welcome you too. I am new, am a wife of an epileptic. Hope we get to know one another a bit better.

 

[Meetz1064]

Hi Jess

I, too, am blessed with the tonic clonics. I haven't had one in quite a while, for which I'm extremely grateful, but coming out of them, for me takes a long time--and is usually quite painful.

It's great that you have someone who cares tho. And with any luck, the Keppra will work quite well for you.

Don't forget to check out the nooks and crannies, like Eric said--and then make yourself at home. Maybe Buckeye will stop by with some coffee that isn't burnt--I burnt it again. I make some great tea, but I keep burning the coffee.........

Take care!

Meetz
:rock: