Cluster seizures - anybody?

[masterjen]

I have tonic seizures that manifest as simple partial and complex partial seizures, always at night. Sometimes I can have one in a night, or as many as 4 in one night either in a row or spread over 4-5 hours. Do any of you have clusters like this? How common are they?

 

[pita300]

My seizures cluster. even this morning I had 2 in a 5 minute time span. Last weekend I had 4-5 I tend to lose count after 2. My seizures last 30 seconds to a minute and are partial seizures. On really bad days the doctor has given me Lorazepam to help calm them down and keep me out of the ER. I only take one if I have more than 1 seizure in an hours time. Lorazepam is a benzopine and very addictive. I have 10 if I take more than 10 in 30 days then they wont refill the prescription. 9 times out of 10 even when I should take one I generally don't because of how they make me feel.

 

[valeriedl]

When I was first diagnosed with epilepsy, 10 years ago, I was having on average 3 to 5 seizures a week. Sometimes I'd have 1 a day, 2 or more a day spread out over a few hours or I'd have one then another one (or more) a few minutes right after it.

Now I have about 3 to 5 seizures a month and they still will happen the same way. Recently I had one in the am then 2 only a few minutes apart in the evening.

 

[Krista2882]

I get the simple-partial version of status epilepticus. Every one of my simple-partial seizures lasts anywhere from a few minutes to a few hours. I get motor seizures and I could go for 4 hours with my leg constantly shaking. There's a name for it but I forgot what it is.

 

[Cint]

I used to have cluster CP's every month before I had the lobectomy. I would have 3-5 a day for 4-5 days in a row. Then they would dissipate until the next month. But after the lobectomy, the seizures changed from CP's to more TC's. About 1 every couple of months.

 

[karapbara]

I get them at least every week, but lately with this infection I'vehad them every day for the last few weeks. I get all sorts of seizures... hopefully I have enough that I roll out of bed as the impact of the fall knocks me out of it. XD

 

[masterjen]

You mean the fall stops the cluster of seizures?? How does that work?

 

[karapbara]

I'm never sure, but often I'll be shaking on the bed and i shake so violently that I fall off the bed. But it's only when I wake up on the floor it's over. Perhaps I'm knocked out and that's why?
I don't know - seizures are so confusing.
:crying:

 

[jayde-101]

ive been suffering with clusters of tonic-clonic seizure for quitte a few months now while they have been messing with me medication .... i can have any where from 1-5 tonic clonic seizures within a 30 min time span ... but half way through that time span the pararmedics (emts) have been called and have administered diazepam

ive just gotten out of hospital yesterday and i was on a intravenous drip of a drug called phenytoin cause my seizures were getting out of controll so badly sad times

but we have to all be fighters and not let epilepsy get us down

 

[masterjen]

Had another cluster last night, about 4 or 5. Two were full body tonic (Left limbs and whole torso) and the others were only left limbs. This is frustrating because I just underwent a medication increase 3 weeks ago. The previous increase helped so that seizure nights (not all cluster nights) became every 4-6 nights instead of 2-3 nights, but the last 3 seizure nights since the more recent increase have been every 2-3 again. The only bonus to the increase is that the post-seizure effects seem not as bad in that I at least feel up to being out of bed for a little while and my concentration is not as diminished.

I feel badly that there are others out there who also have clusters, but it is nice to know there are others who understand what they're like.

 

[Joannie631]

I have tonic seizures that manifest as simple partial and complex partial seizures, always at night. Sometimes I can have one in a night, or as many as 4 in one night either in a row or spread over 4-5 hours. Do any of you have clusters like this? How common are they?

I have had them to with my new Dr I have them about every 5 days I have about 4 to 5 sometimes more or less seizures. I was seizure free for about 15 years I was on depacote my mycoline she took me of mycoline and was in hospital for 5 days and in the rehab for 3 month's I wish dr would put me back on it to control my seizures i was on this meds for years now she wants me to get the V.N.S I heard and read that the device is dangerous.

 

[Porkette]

Hi masterjen,

Every month I will have 1-2 days of cluster seizures that will happen either in the morning or later afternoon. My Epileptologist told me it was all do to hormones changing. I have found that since I started the cbd oil the clusters aren't so bad and the seizures don't last as long. I have both absence and complex partial. If you are interested try using the cbd oil and see if that helps. My Dr. was the one who wanted me on it. I wish you the best of luck and May God Bless You!

Sue

 

[MAB]

I get the simple-partial version of status epilepticus. Every one of my simple-partial seizures lasts anywhere from a few minutes to a few hours. I get motor seizures and I could go for 4 hours with my leg constantly shaking. There's a name for it but I forgot what it is.

My SPs are the same way, they just go on and on, sometimes for a day or more, in waves, until I am totally exhausted and worn out. I get to the point that I forget how to write and can't even remember how to spell my name.