Hi all Just signed up today

[malibu1966]

Hi all
I stumbled across this site today. Looking at what I have read so far from peoples posts. There is a lot of valuable info that people are willing to share.

I have had five seizures. The first one they took me to the hospital.
The second seizure I actually let a repair person into the house. I have no recall of this happening other than what my wife has told me.
Later in the day I had my third which my wife took me to the hospital.
My last two seizures I would say were partial consious seizures.
I started out on Keppra 500 mg x 2 / day and now have been increased to 1000 x 2 / day.
My first seizure happened on Aug 6 so I am fairly new to all this. I get the unknown smell arura all through the day. The closest thing I can resemble it to as vanila. I am finding watching tv will trigger dizzy like spells. Or doing something that takes a intence thinking process.
I have also have been told not to drive anymore. Which is very frustrating, not being able to just get up and go anywere or anytime.

I hope to learn more and help me cope with this new way of life.

Thanks

 

[Fedup]

malibu1966

Welcome to C.W.E. there are good people here who will try and help.

 

[N Sperlo]

Welcome Malibu.
Is that Malibu the place, car, or other.

Im on Keppra as well. A side effect is dizziness and often happens when looking at the computer screen. Hopefully that is all you're feeling when watching tv.

Frustration of not driving is dealt with different ways. I had some great family and friends help me through.

I haven't been here long, but nowhere else would I have learned so much and met so many great peole in the process.

Welcome again

 

[lindsayschu2]

Hi Malibu--

I'm sorry this is happening to you. I'm glad you found this site, where others understand what you are experiencing and can offer thoughts and support. Hang in there--you are just entering this process, and there are many med options out there that may work well to address your seizures.

 

[Belinda5000]

Welcome Malibu,

welcome to CWE and I hope were all able to help you in some way.
I've never been able to drive, and I know how frustrating it can be but I can get to most places if there on there on the bus line and in the city.
I don't let my sz's keep me down that's just life, and if I have a sz I have a sz.

 

[motorbill66]

Hi Malibu, I hope that you can be seizure free forever, of course. Five is a low number. Many states will let you drive if you are seizure free for three months. The fact that you have a definite aura gives you plenty of warning. You're "lucky". Many of us have no warning at all. All I get is a feeling of foreboding and flashes of fear and paranoia. Problem is, that's not always there, and I tend to go into denial about it anyway. Who wants to 'believe' they're going to have a Grand Mal?

Anyway, you are going to find folks here who have symptoms with which you can identify and others that seem odd to you. Well, we are indeed an odd lot. These people have made my path through life a much better place. Explore, enjoy, and laugh with us.

 

[Nakamova]

Hey there malibu1966, welcome to CWE!

It can be extra-tough when an epilepsy diagnosis is new, trying to get used to what's going on your brain, trying to figure out whether it's the seizures or the meds making you feel lousy, etc.

One thing that can help is keeping a seizure-symptom diary. It can help you look for triggers (like TV) and patterns (like certain times of day), and it can help you gauge how your meds may be affecting you. BTW, if you find that Keppra is making you moody, try taking a B6 vitamin which can help.

Best,
Nakamova

 

[malibu1966]

Thank you everyone...

I will give the B6 a go and see how my mood changes. I started a seizure diary January 8th this year. Still no rhyme or reason to when or why things are happening. I was only on 500 mg in the morning and 500 mg at bedtime.

I thought I was doing great and was going to ask my nerologist if I could go down 500 mg at bed time.
Three days later after coming back off a cruise ship I had another seizure !!

Now I have been put on 1000 x 2 per day. Does anyone know what time of day is good to take your meds ? How long does Keppra stay active or when does it kick in ? Possibly with all the time changes threw my med scedule off.

Now I am in a state of mind were I am re-adjusting to the dizzy almost semi-stoned fealing. Along with this smell that I no longer can describe. It comes and goes all through the day.

Again thanks to everyone. This site is what everyone with a disability needs. People to lift their spirits up and fill in the blanks when you are newly diagnosed.

 

[N Sperlo]

For reference I am on 2000 mg of Keppra 2x/day.

I take mine around 9am and 9pm. I'm never right on time and that hasn't caused a problem. The alarm goes off at 9 and I may realize I forgot to take it by 10:30.
I've forgotten to take a dose before, I've accidentally doubled the does before, and never had any problems that I have noticed. The Its just best to take it 12 hours apart and routinely to keep the levels equal (unless otherwise suggested), so to answer your question, it stays active.

The dizzy feeling will come and go. I drink and along with a buzz comes the dizzy feeling, so if you drink, expect that.

I had some temper issues and I started taking B6 and B12 in the morning. The difference has been unreal. Works great for me.

Best of luck.

 

[Evamarie91]

Hi Malibu! I didn't see a name for you, so that's what I'll call you. I'm Eva and I mostly lurk around here. Anyway, I'm currently on Keppra. I'm taking 500mg in the morning and 500 mg at night. I also take a B complex vitamin, an extra 100 mg of B6, a calcium and magnesium supplement, vitamin C, and 1,000 IU of vitamin D. So far I've had very few issues with the Keppra. I started off really low- 250 mg once per day, then that dose twice per day, then 250 in the morning and 500 at night, and now I'm at the 1,000 mg per day. I'm pretty sure I freaked out my neuro because I felt weird on my initial dose of Lamictal (I got off that drug) and then broke out in a rash right as I started Keppra (turned out that it wasn't the Keppra, but it still scared me). The poor doctor told me that he had never prescribed such a low dose to anyone before, and he's been practicing for at least 30 some years. Anyway, I did notice some weird moodiness, but I am not sure if it was the Keppra or something else. I just upped my B vitamins and I've been fine.

Keppra has a 6-8 hour half life, and peek plasma levels are generally reached an hour after you take your pill. There isn't really a specific time that one needs to take Keppra. When I started my doctor told me to take it after dinner, so I started taking it around the time that I supposed I'd finish dinner. However, since schedules fluctuate that exact time is sometimes a little before dinner, and sometimes a little after. Since it's 12 hour dosing I usually take my morning dose with breakfast since I tend to have a pretty set morning routine. The point is to just do what works for you. Just make sure you take it at almost the same time every time you take it. You want your blood levels to be as consistant as possible. The only really notable side effect I've had from Keppra is not really appropriate so I won't mention it, but it's just annoying and not something that would make me consider stopping the drug. At least not at this point. For me the control is moderate, but I'm on a low dose and he's not going to up it until I see him again in April and he's convinced I'm not about to die, but all that drama is my fault, so it's really just amusing at this point. Good luck getting everything figured out!

 

[HorseFetherz]

Hi Malibu1966, Welcome to CWE,
Your seizure diary is relatively new, but eventually you're going to look at it and see a pattern emerge. When that happens, it's a great thing, because then you really have something to deal with. Ultimately I hope you will have no more entries to put into it. I put comments in mine like 'had two glasses of wine' or 'under stress because of...' Any detail that I think might have contributed to that particular seizure. Even your diet makes a big difference - don't skip meals. I wish you the very best of luck.

 

[Annicus]

Greetings friend

 

[Suburbmom]

Welcome, I'm brand new too. I had my first Grand Mal seizure when I was 18. My doctor put me on Dilantin, and Phenobarbital where I had occasional breakthroughs although this was often because of a missed dose. As a high school / college student I wasn't great at medication consistency. I improved greatly as I got older with this, and remained on it for 18 years. Then in 2006 I started feeling "not right", its hard to describe but like a drunk, intoxicated feeling. I had Dilantin toxicity so my neurologist took me off that and switched me to Lamictal. This also made me feel dizzy, and just not right but I didn't have any seizures. When I told him this, he cut back the Lamictal but added Keppra. Then took me off of Lamictal completely- immediate Grand Mal so we went back, and now I am on a combo of Lam 300mg/Kepp2000mg. Seven years seizure free, and I had a breakthrough Grand Mal. I was devastated, and completely freaked out. He upped my Lamictal to 500mg, kept my Keppra at 2000mg and added Klonopin .25 to the mix. I have been fine for the past year, but still have occasional days where I feel intoxicated. I have learned to live with my new "normal." I have always had a strong aura before any seizure so I am allowed to drive, although I opt out when given the opportunity.

 

[Suburbmom]

@Belinda5000 I don't want you to take this the wrong way, but I can't read your posts, or posts around yours because of your continually moving flower. It mimics a flashing screen. That's one of my triggers, and might be someone else's too. I feel bad sharing this with you because I truly do not want to offend you but, I find everyone's information so valuable here, I would love to read your posts.

 

[Cint]

@Belinda5000 I don't want you to take this the wrong way, but I can't read your posts, or posts around yours because of your continually moving flower. It mimics a flashing screen. That's one of my triggers, and might be someone else's too. I feel bad sharing this with you because I truly do not want to offend you but, I find everyone's information so valuable here, I would love to read your posts.

Belinda isn't the only one who selected an avatar with movement. Couldn't you just cover those particular avatars when reading thru the posts if it bothers you so? From reading your story, there are many on CWE who have had a worse seizure history than yours, Belinda being one. Myself, too.

 

[motorbill66]

Suburbmom,

The Lamictal "dumbs" are typical of the introduction to this med. I had these same disconcerting feelings and dizziness as well as many on this site when introduced to it. I thought it would just stay like that. But, Lamictal seemed to be the only thing that would work somewhat reliably. It took me about a year and a half or two to start overcoming it and to start 'sharpening up' again. My wife confirms this. I don't know if your reaction is that same phenomenon, but although I objected for a while, I stuck with it. Now I'm coping with the same sort of thing from my latest addition; Lyrica. It is a good medication, and along with a 1/2 gram of Xanax each night, I'm now seizure free for four months. That's a latter day record for me!

300 Grams Lamictal ER
300 Grams Lyrica
1/2 gram of Xanax

 

[malibu1966]

Thank you again !!!

I can see already in less than a week, the site can become some what addictive.
There is so much information and people reply back with positive
thoughts / advice !!

Not working due to the no driving law untill I am seizure
free. I spend quite (most) of my time surfing the forums and other
referenced links about seizures.

 

[SlimBlue]

I'm sure it's been mentioned before, but you can disable avatars/signatures/all images here if they cause problems..

Oh and welcome to CWE malibu1966