Epilepsy

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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:

me 2

posted 9 days ago
2 medium

Noise/buzzing in ears?any tips?

Noise/buzzing in ears?any tips?

My Jessica 10 non verbal and has me sitting with hands over 2 ears with pressure and describes it as a bee? Tried ear defenders and cotton balls ear plugs it's annoying her any1 know what she is talking about and any tips please thankyou it is more when under clusters and before a seizure would arrive like days before

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A MyEpilepsyTeam Member said:

I used to take keppra . Due to side effects
I went to briviact .

posted 9 days ago
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:

YES. YES. YES.

posted 25 days ago
8 medium

Positive Romberg test?

Positive Romberg test?

I very quickly failed the Romberg Test (where I put my feet together and close my eyes), as I started falling sideways and the neurologist actually had to catch me within 1 second of my closing my eyes. It feels like when my eyes are closed I have no idea where I am in space, nor where the floor is! Is this a common occurrence? If not, should I be worried?
My neurologist immediately ordered an MRI with contrast after failing that test, so regardless I should have answers within the next… read more

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A MyEpilepsyTeam Member said:

Never heard of it until I looked it up on my ipad

posted about 1 month 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:

i have blown many lights, electrical appliances and computers with seizure activity. Overstimulation of any kind is a trigger for me along with certain… read more

posted about 2 months ago
8 medium

4 year old having problems

4 year old having problems

Hi all, I'm here for some advice, my 4 year old daughter has not yet been diagnosed with epilepsy she just started having a few strange episodes. She becomes really vacant and won't respond , she just stares at us. She started to complain of a head ache and threw up. She then became unresponsive and dribbling terribly , she went limp and closed her eyes . But she had a strong grip on my husband finger the whole time . The doctors mentioned absence seizures at first when she just… read more

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A MyEpilepsyTeam Member said:

@A MyEpilepsyTeam Member like i said sometimes it takes hours, days, weeks, months, or even years for another seizure to happen.

posted 11 months ago
1 medium

CBD vs Ativan

CBD vs Ativan

I have clusters of seizures that take hours to break (100-150 seizures) and i take 2-3 milligrams of Ativan to break the cluster. Anyone know if CBD would benefit me.

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A MyEpilepsyTeam Member said:

I use Ativan and CBD oil, it doesn’t seem to bother me at all. In my case, I definitely need both, especially if stressed or tired.

posted about 2 months 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 2 months 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 4 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
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