Cluster seizures

[lind126]

Hi, I am new to this forum. Two years ago I was diagnosed with temporal lobe epilepsy based on symptoms but eeg only shows light disturbances. I had epilepsy tl seizures until I was in my 20s as a consequence of febrile seizures when I was child. A year ago I started having very differentkind of seizures - cluster seizures that can last upto 10 days. These consist of episodes in which I feel extremely dizzy, nauseous and see double with other vission distortions (inability to focus). They last between 30 to 90 seconds and can occur multiple times a day or even multiple times an hour. The main trigger is lack of sleep or increased stress. The seizures are quite debilitating and leave me exhausted at the end of the day. Does anybody else experience anything like this?

Thanks for reading and any replies.

[LottieLou96]

Heya there,

I'm no expert by any means, far from it.

But could these be simple partials. Often seizures, particularly partials come in clusters. They could be a different presentation of your to epilepsy. I hope you get the treatment you need and speak to your epilepsy nurse maybe about these episodes. See what they think? Bc they can be extremely exhausting, I would have episodes of simple partials a few times an hour, then complex partials 3-5x a day and it would usually end once I blacked out (unsure.if it became generalised) I come to very postictal and worn.

Hope you get the help you need x

Lottie

[lind126 in reply to LottieLou96]

Hi Lottie. I will definitely bring it up with him as the lamotrigine does not seem to be helping. I didn't know that seizures could come in clusters, I really thought I was going crazy.

Thank you!

[LottieLou96 in reply to lind126]

Haha, 😂 your not going crazy, I defs thought that at first... Are you at a titrated high Lamotrigine dose or are you still increasing it? Some of the side effects of it also have blurred, double vision and nausea as well.

[lind126]

I have been taking it for two years now. Not sure how high the dosage is (100 mg twice daily).

[LottieLou96 in reply to lind126]

Not ideal then that it doesn't seem to be helping. Hopefully your ep nurse has answers and everything gets under control x

[AnxiousCanadianChic]

I was diagnosed with epilepsy 8 years ago after having a few grand mals. I had NEVER had any sort of seizures before that. I was put on keppra which stopped the Grand Mals but then I started getting simple partial seizures. Mine are also caused mainly by lack of sleep and stress. I used to get them in clusters but now I don’t. I’m on clobazam for them but I can’t say that’s what made me have them less as I still had clusters when I started the meds.

Mine start by me feeling weird.. nauseous/dizzy and “weird” like pins and needles? I can’t really describe it. Then for about 30- 60 seconds I can’t communicate properly. I can see, hear and speak but when I speak, I’m told I either sound like I’m speaking another language or start randomly talking about something weird. I can hear but it’s all jumbled and I can’t understand. I can see but if I try to read something, it’s just jumbled letters.

After my episodes I still feel off for awhile, I would say I’m not 100% until about 20mins have passed.