Anyone have epilepsy in parietal, occipital and temporal lobes?

[sah313]

Hi, Im Sarah and from Wales in the UK.

I have simple partial seizures in the parietal, occipital and temporal lobes with no focus and my neurologist told me he had never heard of anyone having it before so im on the search for ANYONE who knows anything about it or has similar.

I have loads of different symptoms from my epilepsy but mostly i see things -all kinds of things! Suppose its like seeing ghosts all of the time except its sometimes objects not people. Would be fantastic if anyone could help me out, never been able to talk about it with anyone who has anything similar.

Thanks for taking the time to read all this!

x

 

[epileric]

Welcome Sarah

I guess having seizures in all those parts of the brain is what makes you unique. I also have partial seizures caused by a lesion on the hypothalamus which is also very unusual.

Meanwhile, make yourself at home. This site has some great reference material (check the library) & some extremely supportive people from all over the place including the UK.

 

[Endless]

Hi, SAH313,

Welcome to CWE!

By "no focus" does your doctor mean they are whole-brain seizures without losing conciousness? Or they are happening in all three of those regions of your brain at once?

My seizures are in the temporal lobe only. I see things, too. The last time it scared me silly. It was at night. I thought I saw a person behind a car in a dark parking lot, then it suddenly disappeared and appeared behind another car, then dissapeared and appeared behind another car, and so on about 10 times. The people were dark and shadowy. I thought I had run into a very bad situation with 10 people at night who were hiding behind cars. But not. It was only a seizure.

I don't have occiptal or parietal lobe seizures. All I can do is point you to a website. Here's more info on those: http://www.med.nyu.edu/cec/epilepsy/types/occipital_lobe.html
http://www.med.nyu.edu/cec/epilepsy/types/parietal_lobe.html

And also good ones on temporal lobe epilepsy: http://en.wikipedia.org/wiki/Temporal_lobe_epilepsy
http://www.epilepsy.com/epilepsy/epilepsy_temporallobe
http://www.med.nyu.edu/cec/epilepsy/types/temporal_lobe.html

I would really like to hear more about your seizures. Are there different kinds?

 

[sah313]

Thank you for replying and welcoming me to the site, its very nice of you. I will be having a look through the library this evening. Cheers x

 

[daisy.girl]

hi...and welcome!!
My EEG showed a grade 2 dysrythmia with spikes in the left parietal lobe....However, after describing my episodes to my neuro, he feels that they are coming from the temporal, parietal, occupital and possibly frontal too.
I am dx with simple and complex partials.
I too 'see' all kinds of things. You can read about my experiences on my profile page 'about me'.
Would love to hear more about your seizures too.

 

[dfwtexas]

My EEG shows my seizures coming from the left parietal lobe and I had generalized spiking throughout the entire right side of my brain. My neuroglist said that seizures from parietal lobe can cause seizures in other lobes of the brain. I have been able to find limited information about parietal lobe, as apparently it is the rarest form. I have both simple and complex partials with my simple partials being visual. Apparently visual effects can be related to the pariental lobe.

 

[seri]

Hi Sarah, I also experience this, constantly hearing things, seeing people that arent there. I find myself in a constant state of fear, i understand that these arent real but it doesnt make it any less scary. I feel like im in my own world at times, like im the only one that can see things properly around me.

 

[sah313]

Thank you all for replying, I was shocked that so many people have similar stories.

My occipital, parietal and temporal lobes on mostly the left side of my brain is where i have the seizures, apart from seeing and hearing things i get problems with: details; words and language (I have to look at the top left corner of a word to read it properly); math and science; comprehension;
order/pattern; perception of objects and places (things and rooms look like they are moving); forming strategies; behaviour; memory; recognition (i find it hard to name objects). I am sure there more things but i cant remember at the moment (just started taking Keppra yesterday and Its making me quite tired).

I don't find seeing things a problem or scary at all, I have grown quite used to it. I do find it awkward when i meet people for the first time and I start seeing birds fly by or a monkey sitting next to them or I answer a question no one has asked. I know there aren't ghosts in my house so when i see an outline of a person standing in the dark in the hallway I know its not there, its just my head playing tricks on me. Its happened for so long I just ignore it. There's no point in being scared, just embrace it and be thankful that you get to see a whole other world to everyone else.

Its been great to hear your stories, I don't feel so isolated myself for knowing other people get the same as me and I can talk about it without any judgement.

Hope your all well and take care x

 

[Nakamova]

Hi Sarah, welcome!

I hope the Keppra does the trick for you. It can take a while for the body to adjust to a new med, or a new dosage, so go easy on yourself. And keep an eye out for side effects. Keppra has helped a lot of folks, but for some it can cause unusual moodiness or "kepprage". If that happens to you, consider asking your doc about taking a vitamin B6 as part of a B-Complex vitamin supplement. It seems to help with the side effects.

Best,
Nakamova

 

[sah313]

Thank you very much Nakamova! Its only my second day on it but i feel great so far, just a bit or slurred speech and feeling a bit tired. I will stock up on vitamin b6 just in case though!

Thanks again!

Sarah

 

[dfwtexas]

I got diagnosed almost 3 years ago and they put me on Keppra. My level has been adjusted several times, but it has been great! November 7th was 13 months of no seizures!:woot:
Being tired was my initial problem too. That took a few months before I got over that. I had kepprage kick in after I had been on it for several months, I think it was related to going on higher dosage. That got better too.
Hang in there...we have all been thur thinking we were all alone...until we found everyone else here!

 

[sah313]

Thanks dfwtexas! Keppra is going good so far, I expected the worst so its been a nice surprise. Bought some vitamin b6 (as recommended by Nakamova) and i thought i would start talking it just in case, cant do any harm to start early! Everyone has been been really helpful and supportive on here.

Congratulations for 13 months of no seizures, thats fantastic!

Take care x

 

[sandi]

You sound as if you've just stepped into my world (LOL)
Hope things get back on track for you!

 

[bluekangaroo333]

My son also seems to have seizures that originate in right parietal, occipital and temporal lobes. They progress to generalised tonic clonic seizures and usually happen at night when the first symptom seems to be feelings of nausea which result in him vomiting. He has only had one seizure during the day, but he reported feeling very dizzy, and the rooms seeming too big before progressing to vomiting and a more generalised seizure. He only seems to have seizures about once a fortnight on carbomazepine, but the doctor is in the process of changing his medication