How many seizures a day do you have?

[wowthissuxass]

I was diagnosed June 4th 2008 after having three T/C's in a span of a few hours. I had been having Deja vu's, and night tonic's but never put two and two together. I know, what an idiot!

Since then, I have been on 3000 a day of keppra, and have cycled through maximum doses of Lamictal, and now Trileptil. During this entire time I have continued to have partial seizures everyday.

I have myoclonic jerks, whatever the tingly ones are called, occasional deja vu's, one instance of status elipticus, and a few episodes of extremely strong auras that put me down for a while. Last week I awoke to a bitten tonguer. Luckily it was not bad, but it was a clear indicator of the nights activities. Between the little twitches, and the tingly ones, I have at least 5-10 a day, and sometimes many more.

For those of you who are not under complete control, how many do you experience a day/week/month, etc?

 

[epileric]

For me when I"m doing well I average about 5 or 6 partials a week. This past week that's increased to 11 in the last 7 days. I have had it worse though, my record is in the low 20's in a full day (about 15 hours). When they do get like that though I know the chances of having a T/C are higher though that is usually pretty rare.

 

[Belinda5000]

I can have between 4 and 16 seizures a month.I can have 20 a day sometime, I just haven't been doing good lately. just little better my sz's have been been more severe had them less often I think.
I've just started a new med diamox a little over a week ago, and I've cut back on my clonazepam by 1/2 mg.
Belinda

 

[joan]

My son on meds can go, so far, 18 mos without a grand mal. We are trying for 2 years as we speak. We are at 7 1/2 months.

My daughter? UGHHHHH her worse day, her myoclonics, we stopped keeping track after she hit 2,000 that day. Her "normal" day of myoclonic probably 30 - 40. On Keppra .. We consider any day with under 10 myoclonics a good day* We do get a "few" non myoclonics day, rare but they do happen. Those are GREAT days lol

Im not sure if were onto anything but when I see my daughters first myoclonic of the day I go into "FIXER" mode and do everything I can to remove stress, be sure shes eaten, do whatever I can do so it doesnt lead to a grand mal. To date, shes only had one helluva grand mal.

I wish you all well
joan*

 

[Heather]

I still have partials daily (appox 1-5). They're very mild usually though. Usually only lasts a few seconds. When they're intense, usually 2-5 minutes. I've always had partials daily, no matter if my CPs or TCs are controlled or not. I used to have CPs, TCs and nocturnals, when I was going to my former neuro. Those are all controlled now. My seizure control now, is prob better now than it's been in more than 10 yrs and due to keppra, is still getting better. Keppra has been my wonder drug. Lamictal helps to, but keppra helps the most.

I didn't know I was having nocturnals until they stopped and I stopped being so tired I felt like I was drugged, sleeping through my alarm clock, my mouth being chewed up, headache all day long, etc. Then it clicked. So don't feel bad.

 

[flinnigan]

My husband thought I was having 5 or 6 month but when we looked back it was more like 8 - 10. I've had 2 today. To me a even a few a year is not acceptable. I was surprised to see people here whom I thought where controlled still have occasional. And the fact that the something as simple as the flu can cause breakthrough seizures is also not controlled as far as I'm concerned.

Medicine, diet, stress control, hormone treatment, surgery etc. are not cures nor even controls in my book. We're all too sensitive to these things to consider these controls they're all just treatments until something better comes along.

Until there is a real cure I won't be happy. I refuse to die as young as my father did. It's time for research dollars and a real fight for answers.

What can we do as a group. The squeaky wheel gets the oil. It's time for us to get oiled.

 

[nicholas:)]

Hi-ya!

I averaged 60+ a month from Feb 2010
I went on Tegretol in May this year and have averaged 14 fits a month.
I started Clonazepam at the end of Sep and have only had 4 this month!

I'm pleased the fits are down but I don't like some of the effects of the meds - I suppose you cannot have it both ways!

 

[momof3boys]

So far, Ive been doing pretty good! My last seizure was about a month ago. It was when I was sleeping. I am use to having simple partial seizures, my last one being in March when I had my first VEEG done. But since then, Ive been controlled pretty good on 3000mgs of Keppra XR. Last month I had a scare when I woke up seeing i had bit my tongue, and had a huge headache, I was sluggish and tired, and alittle confused. I didnt get much sleep the night before, plus I had alot of stressful things going on at the time. That was my last known seizure.

 

[Aubrey]

I suppose I really should not complain. This site frequently makes me feel bad about doing so. I have maybe a T/C once every couple of months. I have learned what some of my major triggers are but not what to do to cope with them. My partials are a little more frequent - I get caught having them once every couple of weeks only. They are stress induced as well. I take 600 mg of Lamictal, I just switched from generic to brand, and I also take 300 mg of Zonisamide. This is a lot fewer partials than I was having for quite some time, I used to have between 2-15 a day.

 

[LMReggcellent]

I probably have 2 or 3 grand mal seizures each month, but for all I know I could be having more that aren't witnessed and that I don't suspect. I have somewhere around 10 partial seizures every week. That's a huge increase from what I was having two years ago. I've finally learned how to deal with it.

 

[Tigrlily]

My epilepsy was well under control for 4 years then last february i had my first sezuire again in the hospital and ended up breaking my ribs

I've been having about 3-4 a week i'm on 3 diffrent medications for it keppra 4000mg a day, topiramate 600mg a day and clobazam 30mg a day.

I had a really bad one on tuesday ended up fracturing my nose and the doctors at A&E thought i had broke my jaw as well and they were shocked when the x-rays come back fine. Just got swollen lip, half my front tooth missing, swollen jaw, swollen tongue and my nose is swollen cause it's fractured and some other cuts and bruises. xx

 

[petero]

seizures per day - it's hard to tell
today I've had a few periods of what I'd say are complex-partials

but over the past few days I've been seizure-active
although it's hard to pinpoint because I live alone, and I'm still not really sure what constitutes having simple seizures

but when I have complex-partials and tonic-clonics I definitely know

today has been the bottoming-out out-of-body detatchment type of jabbery, which I'd assume are the complex-partials of some degree

I had a T-C just a few days ago

overall on average I'd say 2-3 times a week of seizure unbalance, of various types?

I'm still not exactly sure though unless it's a tonic-clonic

 

[petero]

I probably have 2 or 3 grand mal seizures each month, but for all I know I could be having more that aren't witnessed and that I don't suspect. I have somewhere around 10 partial seizures every week. That's a huge increase from what I was having two years ago. I've finally learned how to deal with it.

it sounds like we're on a similar timeline
but I'm still figuring it out
this website has really helped

 

[keaze]

How many

I had 60+ complex partial seizures a day (i was keeping count) every day for 6 years before i was correctly diagnosed. My first neurologist diagnosed me with tourettes. Yes tourettes... What an idiot!

All those seizures took their toll on my brain.

I'm relatively controlled now but still have night seizures.