Epilepsy

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6 medium

Prolonged aura with seizure cluster

Prolonged aura with seizure cluster

Has anyone had a prolonged aura and you try to "fight off" your seizure because you know its coming? I was at the grocery stote today and i didnt want to fall down and make a big scene so i tried to calmly go to the register and kind of leaned on my boyfriend and seized in line because i couldnt fight it anymore.. it didnt last that long but i was still out of it until we went to the car and i had the rest of the seizure in the cluster.
Does anyone else try to fight the… read more

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A MyEpilepsyTeam Member said:

I would concentrate on something other than the aura. For example if a could see a car I would talk to myself about the car the purpose of the car, the… read more

posted 5 days ago
3 medium

Have your seizures left limbs or body parts unable to move?

Have your seizures left limbs or body parts unable to move?

I had a 9 minute seizure lastnight, very aggressive. Typically I have Frontal lobe and temporal lobe seizures. I had stiffening of the body, jerking, shaking and wretching as if to vomit, did nothing but bile, rapid eye movement etc lastnight 9 minutes at, 9 minutes I was able to collect myself enough to take Ativan. 2mg PO.

My med regime is Onfi 10mg BID and Toprimate 400mg XR at bed time

When I woke up this morning my left leg kept going numb. My toes… read more

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A MyEpilepsyTeam Member said:

My younger brother just started having epilepsy he has the rapid eye movements

posted 8 days ago
2 medium

Does loud noices or music make any of you have sezuires and high aniexty?

Does loud noices or music make any of you have sezuires and high aniexty?

Hello everyone, I was just wondering do any of you have sezuires from loud music in a closed area like my self. Also do you have high anxiety from noice that is unusually louder than usual. I recntly in the last couple of years picked up on this. When someone yells at me in anger sezuires happen no doubt. I ran off one time and hit my head on the wall during a complex partial and dont remember anything. Just woke up with a knot on my head… read more

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A MyEpilepsyTeam Member said:

Loud environments and stress are two of my biggest triggers. Overstimulation affects them too

edited, originally posted 16 days ago
1 medium

Has anyone dealt with this? Has any doctor had a patient with all of this?

Has anyone dealt with this? Has any doctor had a patient with all of this?

Please dear God... Someone help me!

At first it started with excruciating headaches... they think its from a lesion on my brain. I was first seen by a doctor just about these headaches in October 2017 and they are still on going

I am in so much pain that I land up screaming and crying.
At times I go blind, my eye feels like its swollen.
Severe memory loss
On many occasions I have become unresponsive like the lights are on but no ones home..… read more

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A MyEpilepsyTeam Member said:

I know what you r going through and am relieved to see that it's not "in my head or exaggerated" as many people seem to think. I had my first grand mal… read more

posted 29 days ago
5 medium

What are your auras like? And if you've had an RNS or VNS or other surgery do you still have them?

What are your auras like? And if you've had an RNS or VNS or other surgery do you still have them?

My seizures are mostly controlled, but I still have auras. Mine might last for hours of feeling clumsy, kinda slow, a heavy or twitchy left hand at times, and anxiety, maybe claustrophobia. Kind of upset I still have them since it's been almost a year since the RNS was placed. I'd really like to know more about different peoples auras

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A MyEpilepsyTeam Member said:

I have these really odd auras, sometimes they generalize into convulsions but they always start out the same, I get a weird feeling behind my eyes, I… read more

posted about 2 months ago
3 medium

Can you have tonic clonic seizures with your eyes closed

Can you have tonic clonic seizures with your eyes closed

I was just told by someone in an epilepsy group on Facebook that I am part of that if your eyes are closed during a TC seizure then it's not a "real seizure,and the person is faking it" is this right? i no im epileptic im on meds but I'm kinda worried now cos from what people who see my seizures have said is that at the start of my seizures my eyes roll back in my head and my eyes close. I'm really worried ppl are going to think I'm faking wen my eyes are… read more

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A MyEpilepsyTeam Member said:

This type of statement or conclusion may have some quantitative methodology behind it, but the overall reality is not there. It is standardization of… read more

posted almost 4 years ago
8 medium

sleepwalking seizures

sleepwalking seizures

Does anyone else have these?.. my seizures occur from left temporal lobe and I do have a continuous short term memory loss, comprehension problems, stuttering, and issues with leaning to the right when my eyes are closed and my right leg not lifting hight enough when I walk..my seizures started Dec 11 2014 a day after abdominal surgery. Which I've been told by Dr's there is no relation but can't explain the seizures...The sleep walking and not remembering has become worse. I am only on… read more

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A MyEpilepsyTeam Member said:

I sleep walk terrible my neurologist says it's not caused by medication even though only started sleep walk after was diagnosed but it's not of that… read more

posted over 3 years ago
3 medium

Tingling sensations

Tingling sensations

I had a headache, closed my eyes and my arms and legs started feeling tingly.

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A MyEpilepsyTeam Member said:

I get that on my hands and feet.

posted over 3 years ago
5 medium

Why are my seizures getting worse

Why are my seizures getting worse

Is there a reason why my seizures are becoming more frequent and starting to occur in clusters? I'm just worried i'm going to start getting memory loss or damage even though they haven't found anything on scans

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A MyEpilepsyTeam Member said:

Your body may have become tolerant to your medication dosedges and you may need to increase it to reduce/control them better again. I would contact your… read more

posted about 3 years ago
2 medium

support groups

support groups

Does anybody go to support groups for epilepsy? Sometimes I feel so alone. I like that I'm treated "normal" but sometimes ppl forget I do have limitations.

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A MyEpilepsyTeam Member said:

i remind others the only time I have limitations is when I put them on myself(feeling sorry for myself) or if the doctors keep me limited in some way.

posted almost 3 years ago
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