Seizures and Epilepsy: Frequently Asked Questions

BrainLine
Seizures and Epilepsy:  Frequently Asked Questions

What is a seizure? If someone has a seizure, does that mean they suffer from epilepsy?

A seizure is a a sudden surge of electrical activity in the brain that usually affects how a person appears or acts for a short time. Many different things can occur during a seizure. Whatever the brain and body can do normally can also occur during a seizure. The occurrence of a seizure in the presence of some acute precipitating physiological disturbance does not mean that it will ever happen after the precipitating cause has resolved. When seizures recur without any obvious precipitant or cause, then a person may be considered to have epilepsy.


What happens during a seizure?

Seizures have a beginning, middle, and end. Not all parts of a seizure may be visible or easy to separate from each other. Every person with seizures will not have every stage or symptom described below. The symptoms during a seizure usually are stereotypic (occur the same way or similar each time), episodic (come and go), and may be unpredictable.

Beginning

Some people are aware of the beginning of a seizure, possibly as much as hours or days before it happens. On the other hand, some people may not be aware of the beginning and therefore have no warning.

Prodrome

Some people may experience feelings, sensations, or changes in behavior hours or days before a seizure. These feelings are generally not part of the seizure, but may warn a person that a seizure may come. Not everyone has these signs, but if they do, the signs can help a person change their activity, make sure to take their medication, use a rescue treatment, and take steps to prevent injury.

Aura

An aura or warning is the first symptom of a seizure and is considered part of the seizure. Often the aura is an indescribable feeling. Other times it’s easy to recognize and may be a change in feeling, sensation, thought, or behavior that is similar each time a seizure occurs.

  • The aura can also occur alone and may be called a focal onset aware seizure, simple partial seizure or partial seizure without change in awareness.
  • An aura can occur before a change in awareness or consciousness.
  • Yet, many people have no aura or warning; the seizure starts with a loss of consciousness or awareness.

Common symptoms before a seizure

Awareness, Sensory, Emotional or Thought Changes

  • Déjà vu (a feeling of being there before but never have)
  • Jamais vu (a feeling that something is very familiar but it isn’t)
  • Smells
  • Sounds
  • Tastes
  • Visual loss or blurring
  • “Strange” feelings
  • Fear/panic (often negative or scary feelings)
  • Pleasant feelings
  • Racing thoughts

Physical Changes

  • Dizzy or lightheaded
  • Headache
  • Nausea or other stomach feelings (often a rising feeling from the stomach to the throat)
  • Numbness or tingling in part of the body

Middle

The middle of a seizure is often called the ictal phase. It’s the period of time from the first symptoms (including an aura) to the end of the seizure activity, This correlates with the electrical seizure activity in the brain. Sometimes the visible symptoms last longer than the seizure activity on an EEG. This is because some of the visible symptoms may be aftereffects of a seizure or not related to seizure activity at all.

Common symptoms during a seizure

Awareness, Sensory, Emotional or Thought Changes

  • Loss of awareness (often called “black out”)
  • Confused, feeling spacey
  • Periods of forgetfulness or memory lapses
  • Distracted, daydreaming
  • Loss of consciousness, unconscious, or “pass out”
  • Unable to hear
  • Sounds may be strange or different
  • Unusual smells (often bad smells like burning rubber)
  • Unusual tastes
  • Loss of vision or unable to see
  • Blurry vision
  • Flashing lights
  • Formed visual hallucinations (objects or things are seen that aren’t really there)
  • Numbness, tingling, or electric shock like feeling in body, arm or leg
  • Out of body sensations
  • Feeling detached
  • Déjà vu (feeling of being there before but never have)
  • Jamais vu (feeling that something is very familiar but it isn’t)
  • Body parts feels or looks different
  • Feeling of panic, fear, impending doom (intense feeling that something bad is going to happen)
  • Pleasant feelings

Physical Changes

  • Difficulty talking (may stop talking, make nonsense or garbled sounds, keep talking or speech may not make sense)
  • Unable to swallow, drooling
  • Repeated blinking of eyes, eyes may move to one side or look upward, or staring
  • Lack of movement or muscle tone (unable to move, loss of tone in neck and head may drop forward, loss of muscle tone in body and person may slump or fall forward)
  • Tremors, twitching or jerking movements (may occur on one or both sides of face, arms, legs or whole body; may start in one area then spread to other areas or stay in one place)
  • Rigid or tense muscles (part of the body or whole body may feel very tight or tense and if standing, may fall “like a tree trunk”)
  • Repeated non-purposeful movements, called automatisms, involve the face, arms or legs, such as
    • lipsmacking or chewing movements
    • repeated movements of hands, like wringing, playing with buttons or objects in hands, waving
    • dressing or undressing
    • walking or running
  • Repeated purposeful movements (person may continue activity that was going on before the seizure)
  • Convulsion (person loses consciousness, body becomes rigid or tense, then fast jerking movements occur)
  • Losing control of urine or stool unexpectedly
  • Sweating
  • Change in skin color (looks pale or flushed)
  • Pupils may dilate or appear larger than normal
  • Biting of tongue (from teeth clenching when muscles tighten)
  • Difficulty breathing
  • Heart racing

Ending

As the seizure ends, the postictal phase occurs - this is the recovery period after the seizure. Some people recover immediately while others may take minutes to hours to feel like their usual self. The type of seizure, as well as what part of the brain the seizure impacts, affects the recovery period – how long it may last and what may occur during it.

Common symptoms after a seizure

Awareness, Sensory, Emotional, or Thought Changes

  • Slow to respond or not able to respond right away
  • Sleepy
  • Confused
  • Memory loss
  • Difficulty talking or writing
  • Feeling fuzzy, lightlheaded, or dizzy
  • Feeling depressed, sad, upset
  • Scared
  • Anxious
  • Frustrated, embarrassed, ashamed

Physical Changes

  • May have injuries, such as bruising, cuts, broken bones, or head injury if fell during seizure
  • May feel tired, exhausted, or sleep for minutes or hours
  • Headache or other pain
  • Nausea or upset stomach
  • Thirsty
  • General weakness or weak in one part or side of the body
  • Urge to go to the bathroom or lose control of bowel or bladder

Types of Seizures

There are three major groups of seizures:

  1. Generalized onset seizures: These seizures affect both sides of the brain or groups of cells on both sides of the brain at the same time. This term was used before and still includes seizures types like tonic-clonic, absence, or atonic to name a few.
  2. Focal onset seizures: The term focal is used instead of partial to be more accurate when talking about where seizures begin. Focal seizures can start in one area or group of cells in one side of the brain.
    • Focal Onset Aware Seizures: When a person is awake and aware during a seizure, it’s called a focal aware seizure. This used to be called a simple partial seizure.
    • Focal Onset Impaired Awareness: When a person is confused or their awareness is affected in some way during a focal seizure, it’s called a focal impaired awareness seizure. This used to be called a complex partial seizure.
  3. Unknown onset seizures: When the beginning of a seizure is not known, it’s now called an unknown onset seizure. A seizure could also be called an unknown onset if it’s not witnessed or seen by anyone, for example when seizures happen at night or in a person who lives alone.
    As more information is learned, an unknown onset seizure may later be diagnosed as a focal or generalized seizure.

How are different symptoms during a seizure described?

Many different symptoms happen during a seizure. This new classification separates them simply into groups that involve movement.

For generalized onset seizures:

  • Motor symptoms may include sustained rhythmical jerking movements (clonic), muscles becoming weak or limp (atonic), muscles becoming tense or rigid (tonic), brief muscle twitching (myoclonus), or epileptic spasms (body flexes and extends repeatedly).
  • Non-motor symptoms are usually called absence seizures. These can be typical or atypical absence seizures (staring spells). Absence seizures can also have brief twitches (myoclonus) that can affect a specific part of the body or just the eyelids.

For focal onset seizures

  • Motor symptoms may also include jerking (clonic), muscles becoming limp or weak (atonic), tense or rigid muscles (tonic), brief muscle twitching (myoclonus), or epileptic spasms. There may also be automatisms or repeated automatic movements, like clapping or rubbing of hands, lipsmacking or chewing, or running.
  • Non-motor symptoms: Examples of symptoms that don’t affect movement could be changes in sensation, emotions, thinking or cognition, autonomic functions (such as gastrointestinal sensations, waves of heat or cold, goosebumps, heart racing, etc.), or lack of movement (called behavior arrest).

For unknown onset seizures

  • Motor seizures are described as either tonic-clonic or epileptic spasms.
  • Non-motor seizures usually include a behavior arrest. This means that movement stops – the person may just stare and not make any other movements.

What should I do if I have a seizure? What should I do if I see someone else have a seizure?

What happens during a seizure may vary from one person to the next. The type of first aid needed can be tailored to what happens during the seizure and the person's safety. It helps to think about whether the person's alertness or awareness is affected, and if any physical movements occur that can place them at risk of injury.

  • Always Stay With the Person Until the Seizure Is Over 
    • Seizures can be unpredictable and it’s hard to tell how long they may last or what will occur during them. Some may start with minor symptoms, but lead to a loss of consciousness or fall. Other seizures may be brief and end in seconds.
    • Injury can occur during or after a seizure, requiring help from other people.
  • Pay Attention to the Length of the Seizure
    • Look at your watch and time the seizure – from beginning to the end of the active seizure.
    • Time how long it takes for the person to recover and return to their usual activity.
    • If the active seizure lasts longer than the person’s typical events, call for help.
    • Know when to give 'as needed' or rescue treatments, if prescribed, and when to call for emergency help.
  • Stay Calm; Most Seizures Only Last a Few Minutes
    • A person’s response to seizures can affect how other people act. If the first person remains calm, it will help others stay calm too.
    • Talk calmly and reassuringly to the person during and after the seizure – it will help as they recover from the seizure.
  • Prevent Injury by Moving Nearby Objects Out of the Way 
    • Remove sharp objects.
    • If you can’t move surrounding objects or a person is wandering or confused, help steer them clear of dangerous situations, for example away from traffic, train or subway platforms, heights, or sharp objects.
  • Make the Person as Comfortable as Possible
    • Help them sit down in a safe place.
    • If they are at risk of falling, call for help and lay them down on the floor.
    • Support the person’s head to prevent it from hitting the floor.
  • Keep Onlookers Away
    • Once the situation is under control, encourage people to step back and give the person some room. Waking up to a crowd can be embarrassing and confusing for a person after a seizure.
    • Ask someone to stay nearby in case further help is needed.
  • Do Not Forcibly Hold the Person Down
    • Trying to stop movements or forcibly holding a person down doesn’t stop a seizure. Restraining a person can lead to injuries and make the person more confused, agitated or aggressive. People don’t fight on purpose during a seizure. Yet if they are restrained when they are confused, they may respond aggressively.
    • If a person tries to walk around, let them walk in a safe, enclosed area if possible.
  • Do Not Put Anything in the Person's Mouth!
    • Jaw and face muscles may tighten during a seizure, causing the person to bite down. If this happens when something is in the mouth, the person may break and swallow the object or break their teeth!
    • Don’t worry - a person can’t swallow their tongue during a seizure.
  • Make Sure Their Breathing is Okay
    • If the person is lying down, turn them on their side, with their mouth pointing to the ground. This prevents saliva from blocking their airway and helps the person breathe more easily.
    • During a convulsive or tonic-clonic seizure, it may look like the person has stopped breathing. This happens when the chest muscles tighten during the tonic phase of a seizure. As this part of a seizure ends, the muscles will relax and breathing will resume normally.
    • Rescue breathing or CPR is generally not needed during these seizure-induced changes in a person’s breathing.
  • Do Not Give Water, Pills, or Food by Mouth Unless the Person is Fully Alert
    • If a person is not fully awake or aware of what is going on, they might not swallow correctly.  Food, liquid or pills could go into the lungs instead of the stomach if they try to drink or eat at this time.
    • If a person appears to be choking, turn them on their side and call for help. If they are not able to cough and clear their air passages on their own or are having breathing difficulties, call 911 immediately.
  • Call for Emergency Medical Help When
    • A seizure lasts 5 minutes or longer.
    • One seizure occurs right after another without the person regaining consciousness or coming to between seizures.
    • Seizures occur closer together than usual for that person.
    • Breathing becomes difficult or the person appears to be choking.
    • The seizure occurs in water.
    • Injury may have occurred.
    • The person asks for medical help.
  • Be Sensitive and Supportive, and Ask Others to Do the Same
    • Seizures can be frightening for the person having one, as well as for others. People may feel embarrassed or confused about what happened. Keep this in mind as the person wakes up.
    • Reassure the person that they are safe.
    • Once they are alert and able to communicate, tell them what happened in very simple terms.
    • Offer to stay with the person until they are ready to go back to normal activity or call someone to stay with them.

Seizures Without Any Change in Awareness

Some people may remain fully awake and alert during a seizure and remember everything that occurs. For example, awareness is not affected during simple partial or myoclonic seizures. During these types of seizures, pay particular attention to the following:

  • Usually you don’t need to do anything.
  • Stay calm and reassure the person they are safe.
  • If the person is frightened or anxious, encourage them to take slow deep breaths or do something that is calming or relaxing.
  • Stay with the person until the seizure is over. Make sure that they are fully aware of what is going on before they are left alone.

Seizures with Altered Awareness

Sometimes people may look awake during a seizure, but they really are not aware of part or all of what is going on around them. They may not remember what happens during the seizure or have difficulty talking about it during or after it. The person may walk around during the seizure, but not be in control of where they are going, and they may not be able to protect themselves. These seizure behaviors may be seen with complex partial seizures or clusters of absence seizures. During these episodes, in addition to basic first aid, pay particular attention to the following:

  • If the person has a warning before they lose awareness, help them to a safe place.
  • Stay with the person and don’t let them wander away. Let them walk in an enclosed area if possible.
  • Keep the person away from sharp objects or dangerous places.
  • If the person tries to run or is in a dangerous situation, call for help and hold them back if needed to keep them out of danger.
  • Do not assume that they can talk or that they can hear you and follow instructions. Assure them they are safe and repeat instructions on what they should do next.
  • Make sure that they are alert, oriented and safe after the event before they are left alone.
  • Time the seizure – these types of seizures are usually longer than convulsions or tonic clonic seizures. It may be hard to tell when the seizure ended and when the recovery period begins and ends.
  • If the seizure turns into a convulsive seizure, follow first aid steps for tonic-clonic seizures.

Seizures with Loss of Consciousness

Some types of seizures can affect a person’s awareness completely – they may be considered ‘unconscious’. They are not able to talk, are not aware of what is going on around them, and may not realize what occurred afterwards. If they have a warning at the start of the seizure, they may be able to get to a safe place – otherwise they are at risk for injury during and after the seizure. Follow the steps for care and comfort first aid with attention to the following:

  • Watch how long the seizure lasts – call for emergency medical help if a generalized seizure lasts 5 minutes or longer.
  • Protect the person from injury but don’t restrain their movements.
  • Watch their breathing – turn them on the side to help keep the airway open. If breathing problems occur, call 911.
  • Don’t put anything in their mouth.
  • Know when to call for emergency help.
  • Stay with the person after the seizure until they are aware and safe.
Posted on BrainLine August 10, 2018.

About the Author

BrainLine offers authoritative information and support to anyone whose life has been affected by brain injury or PTSD: people with brain injuries, their family and friends, and the professionals who work with them.

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References

"What Is Epilepsy?” Epilepsy Foundation, 21 Jan. 2014, www.epilepsy.com/learn/about-epilepsy-basics/what-epilepsy.

Comments (126)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

My friends husband as seizure only in his sleep and it happen every 5 to six months they have to to the hospital and they did a lot of test but couldn't find a cause,is there any advice

My son has had 2 seizures in his sleep.. All kinds of tests and it's all normal. Doctor says good sleep and water are very important. So scared he will have another.. I've read that stress can do this but son has a good life, seems happy.. I'm worried for his future..

I rolled over a logging truck in 017 and in 1/1/019 had my first full on seizure ever since I'm on sdi in cal. And have a weird od seizure at my parents house for xmas was talking to myself about the eyes on the bushes while I was staring at the xmas card in my hand. What the hell..?

Recently I've been "spacing out" more than often, my words have become more slurred, great muscle "limpness," very frequent memory lapses, and very agitated.

I fractured my skull when I was a couple of weeks old, but I got cleared.

Surely, there has to be an explanation behind it all right? Or am I just going insane (Which would not be surprising...)

Has anyone ever had a seizure while they were alone and no one to help?
I find that thought very scary.

I had a seizure while home alone, my meditation was on the dresser with my tv, I was scared that if I got up to get medication the TV would fall on me so I just laid still on the bed and said a pray. The next morning I woke up on the floor because I had a seizure now I keep a glass of water on my nightstand and the medication in the bed with me& everywhere I go. The other thing I can think think of is keep objects that can do harm to you away. There really isn't much I know we can do because it can come on suddenly,when I feel the symptoms of it I take the medicine what's until the electricity hits,then I blackout. I wish there was more to help us!

I had my first seizure in November 2016, so I would have been in 7th grade. I was diagnosed with Juvenile Myoclonic Epilepsy. Such a fun title right. I used to always think of myself as an epileptic but to me that title made it seem like that was all I am. I am a person with Epilepsy. Person is the key word. Getting diagnosed help with so many things in my life. It helped me get rid of toxic friends, build better relationships with others, and love life a bit more. I can remember waking up, morning after morning, being just thankful that I did wake up. After November 11, 2016 I had another seizure then March 29th 2017. Then I made two whole years seizure free and was so ecstatic. Then it came for the two year seizure free EEG. I stayed overnight at the hospitals hotel thing and took the test the next morning after having been up all night. I remember doing the test and feeling so confident because I didn’t shake, convulse, or feel any symptoms. I thought I was finally free of this burden, but then saw my neurologist who told my I did have seizure activity and that the only reason I didn’t have a full blown seizure was because my meds were working, Third med’s the charm, eh? I was so devastated but now realize I am Epileptic. But that doesn’t define me in the slightest. I am an A honors student, I want to be a cardiovascular surgeon or a medical malpractice lawyer, I try my hardest, I have a job at 14, and I am a kind person. So no I am not an Epileptic.

I love you comment I am 17 and I recently was driving with my twin sister and friends and had a seizure under the wheel and hit a tree.. I hadn't had a seizure since I was 8 years... and been seizure free for over 6 years if not longer.. so my doctor took me off the meds.. I question that and wonder should I have been taken off of them.. I was so happy to be off of them because I just knew my body was healed from them.. UNTIL.. they did the EEG and was able to capture the seizures.. I am back on my meds and it will take some time for it to work .. my speech is a little delayed which makes me frustrated at times.. my hand gets tighten.. but it comes right back.. I will get through this and I will not let it become me..

My friend had a seizure yesterday morning on the 13th of October she been unconscious for more than 24hrs now yet she's able to breathe on her own, what's the cause of that and is it normal for someone to be out for so long after having seizures

I started to get grand mal seizures when I was 16 so back in 2006 first it started out as one every 6 months than I got on dilantin and it became 2 to 3 a week and some I had 2 seizures in a row one after the other just kept getting worse I thought that they would never stop I was afraid to leave my house in fear of having one out in public I would have an aura before hand that I started uncontrollably looking up at the ceiling and falling backwards felt like that feeling when you go down a roller coaster only it wasn't a good feeling to me. While I was unconscious having the seizures every time I would see myself on an ambulance and I was dying from the seizure which made me panic every time I woke up on an actual ambulance after a seizure I would flip out on the paramedics and demand they let me out I was still out of it but I was panicking because I thought I was going to die. Eventually in 2013 I told my doctor that dilantin did nothing for my seizures but make them worse so he put me on Keppra 500 mg two times a day and I got off the dilantin since doing so I have not had a seizure in almost 6 years though recently this past year I've been having the aura feeling's but I haven't went into a full blown seizure yet I still don't like that feeling though because i am just waiting for the seizure to happen.

I have rare seizures, sadly, and I'm only 21. They came out of nowhere. Dilatin wasn't good for you. My mom told me that because her older friend has seizures. I am glad that you are off of it.

I started having seizures December 2010 that I know of, at least gran mal. I was serving at the the time and having a smoke. I went to stand up, and another server came out and saw something was wrong. I immediately fell over peed my pants and just thought I was in 2007 back in Sarasota in my senior year, when really was living in 9am beach at FAU with a full sholeralship. I hate hospitals but went bv this had never happened. I was born in February 15, 2089. I had a very very abusive more so mentally however, who told me if I left he would feed me to to the gators and no one would find me. I was locked up and my seizures continued when when I finally got away to Sarasota I fractured skull while working. My eegs still have never never done back normal. They even did a 72hr regs which I thought was going to be ok when I returned it, they immediately made me come in stating I was always having petite seizures and 2 gran mals. Some days I can feel something is wrong and I need to be careful. Stress is my main trigger and I'm always stressing out for any reason I don't know why and I have to remind myself to breathe plus my neck down to my back is always stiff. I could do on an on about what I have gone through especially 10days of not be able to walk. It's just so frustrating. I get yelled at by my mom mom mostly bc it "hurts and scares them"" I just want to cry yes I know I have repeated myself but don't really realize it. Just needed to vent I guess to others that understand.... the gran mals are somewhat getting better however I was extremely stressed the week before July 4th and had 5 within 7days. Other than that I have doing better than before just told however I'm always having petite seizures even when I don't know it. I'm happy that things are better I just got a MRI and it came back good. :)

ive had seizures frequently and now they got them under control ive been in hospital two weeks not able to walk yet

Hi in 2008 was involved in a car accident had a head injury was diagnosed epileptic 2009 but i had mild seizures nothing scary or life changing happened i did not take any epilepsy medication,excercised daily and never had any epileptic problem,i had my first born 2012 i was still ok even years later and sudden change was 2018 around July i fell pregnant,it started 1st time around November 2018 i had what is called tonic clonic seizure and it also happened few months after giving birth.i dont have any trigger signs that i know of,what could be the problem and how do i treat it.thank you

I had a grand mal seizure a month or 2 ago even though my eeg proved i am not epileptic and my CT scan came back normal.
Is it possible to have a seizure without any underlying issues and just bad luck?

i don't mean to be offensive, but have u taken any drugs prior (illegal or prescription) or had you made in lifestyle changes, like cutting alcohol? I had seizures when I quit drinking and still have them almost daily since I quit. I also had them back when I was 20 after a small bender of cocaine use. Apparently these things can cause seizures too (though ive been diagnosed epileptic because of the frequency and unexplained reason)

I have fainting spells frequently and one of the times I fainted I had a seizure too (I was conscious although I couldn't see or hear anything but I could feel my body jerking around uncontrollably, I couldn't talk or make any sounds or control my body).

After that I had one episode where I fainted, them came to but my vision and hearing was still impaired, I was able to walk with help from a friend but I lost my vision completely for about 10 mins and hearing was at about 25%. For about 30 mins after this I was shaking and it felt like all my muscles were vibrating, briefly lost all sensation in my arms and legs too. I waited it out and it went away on its own. Later I talked to doctors and they just seemed unconcerned and said it may have been a vasovagal episode.

I do have unusually low blood pressure so I always thought it was that, but now I'm wondering if its a very bizzare form of epilepsy?

When I was 2 I had four seizures in a year. Would that cause me brain damage as I grew up??

Hi, my boyfriend has been diagnosed with epilepsy back in 2013, he had his last seizure last year on Christmas. The weird thing is, he hasn't had a seizure for 3 years before the last time. Is it possible that someone can through an absence of seizure? I really am helping him for looking for the best medication. It's been a year since his last seizure but I'm anticipating for his next but yet I hope he's seizure free cause his last eeg said it's normal unlike his first eeg that showing abnormality in his brain. Can someone explain to me what's going on?

If eeg remains normal after wean off medicines then he may remain seizure free

I caught my first seizure in a chemical plant at 19 years old then I totaled my Honda Accord catching one while driving then catching 3 more that night while in the medical center 3 months went by I brought a truck from a car auction after my grandma co-signed for me a loan to get car insurance just to flip the truck on my mama side taking her to work 1 week after I brought the truck then they diagnosed me with epilepsy and put me on Keppra 500mg they then upped the dosage to 1000mg when I caught a seizure right after getting lab work done I took EEG test MRI test and cat scans and all that came back good they put me on blood pressure medicine and I started catching those seizures in January 2017 at 19 years old I am stilled diagnosed with epilepsy and I don’t catch them as frequently now at 21 years old but I can’t drive or I can’t be 5 feet off the ground I can’t work like I wanna and everything else any advice

I am 42 now but i had my first seizure when i was 41. The hospital said all my test came back good and took me off my prozac and put me on effexor and said that was the cause of it. Now im 42 and just had my 2nd seizure. Spent 4 days in hospital still test came back good except now they are saying i have a prolong qt and abnormal ecg. And this time they put me on Keppra. I still feel weird. My legs get tingling and my eyes flutter and i feel like i can have one at anytime. And when i do have one i black out and remember nothing and coming too in the ambulance throwing up. I alot questions but no answers.

What do I do. I’m talking to my friend via text, phone won’t let me call him, he’s showing signs of a seizure and he is alone at home, thing is, he lives a couple hours away from me, how do I help him? There’s no one we can contact right now

Epilepsy affects people of all ages, races, and ethnic backgrounds. According to the National Institute of Neurological Diseases and Stroke (NINDS), about 2.3 million adults and more than 450,000 children and adolescents in the United States have epilepsy. Some people with epilepsy stare off into space or make strange sounds during a seizure. Some people may undress, laugh, or walk in circles. Read this article and would like to share with the visitors

I was diagnosed with Epilepsy 13 years ago . The first seizure I had was at a school gym and my right arm was pulling me forward and I started to blacked out. The second and third seizure was having dinner with my family and both of my hands were shaking in the air . That moment everything was black and I was a bit confused.

I was given Zarontin to control my seizures and ever since that I never had a seizure before and yesterday I went to the doctor to ask if I can stop the medication . I've been off Zarontin for couple days already and I feel really uncomfortable everywhere I go , knowing that I might have a seizure anytime .

you should not stop taking medicine if you have seizure because you don"t know when it may happen

No, you can, you just have to listen to what the doctor is saying. Brain is a weird place

I’m 21 years old and I have been having seizures for the past 6 months and the neurologists that I have gone too have both said my eeg are normal. I have been having multiple a day and sometimes I will go a few days without one. I have gone thru 4 different types of medicine so far and none of them seem to work and besides that I do not like any of them anyways. I have mostly the full blown fall on the ground shaking and twitching ones but yet I am able to hear everything from that is going on even tho I can’t see or control my body and it is the most scariest thing in the world. To lay there and hear the scared and panicked voices of those that love you and care for you saying “come back Gavin, come on Gavin, wake up Gavin, come on baby,” even tho they are trying to stay calm and be there for you. I just scream in my head to wake up and I get so mad at my self cause I feel so hopeless and just feel awful that I’m putting everyone thru this. It breaks my heart to hear my mother break down in tears or my wife crying over me begging me not to leave her as I lay there having 11 quick seizures back to back. I pray that none of my future children will have to go thru this. I really hope this isn’t a genetic trait. Neither one of my parents or grandparents have them so I hope for the best. I love life and I am thankful everyday that I wake up cause you never know when it will be your last day. Peace, Love, and positivity is my mind set and my focus to get thru this setback in life and in life it’s self.

Gavin, as I am sitting here reading your post you have brought me to tears. My son is 19 and has autism. He is the sweetest child and I never have a problem out of him. He is nonverbal and has the abilities of a five-year-old. I love him so much. He had his first seizure four years ago and the doctor said it could have been associated with an ear infection that he had at the time. The second seizure he had about five months ago; he again had an ear infection. He had another seizure three days ago and did not have an ear infection. I was protecting his head and saying some of the same things that your family had said to you. Somehow I just knew he could hear me, but I was not sure. I wanted him to know that I was there and how much I loved him. Thank you, Gavin, for letting me know that he could possibly hear me. The amount of pain you feel when your child is struggling to breathe is unexplainable, but you have given me some comfort in know that my son can possibly know he is not alone and that we love him. There is no way that he can understand what is happening to him and I know that he is terrified, so I want to give him all the comfort possible. Thank you, Gavin, for giving me hope.

Have any of your doctors talked about conversion disorder? My daughter starting having seizures around Christmas time and can have many a day or a day with none.. Both CT and EEG were normal She will be going for a 3 day hospital study. She does complain about neck and back pain and feels it coming usually

my son started having sezier when he also turned 21.doc,said if he is going to havw them,usually young men start at the age of 21,its because a certain part of the brain is devopling if the sezier trait is there it shows its ugly face at this age.he now stays depressed.he can not work,because he often feels bad.its hard to watch him go threw so many emoitional changes.this in no way is his fault,nor is he or this a bruined.i do pray for you and hope you get better.

I’m 21 years old and I have been having seizures for the past 6 months and the neurologists that I have gone too have both said my eeg are normal. I have been having multiple a day and sometimes I will go a few days without one. I have gone thru 4 different types of medicine so far and none of them seem to work and besides that I do not like any of them anyways. I have mostly the full blown fall on the ground shaking and twitching ones but yet I am able to hear everything from that is going on even tho I can’t see or control my body and it is the most scariest thing in the world. To lay there and hear the scared and panicked voices of those that love you and care for you saying “come back Gavin, come on Gavin, wake up Gavin, come on baby,” even tho they are trying to stay calm and be there for you. I just scream in my head to wake up and I get so mad at my self cause I feel so hopeless and just feel awful that I’m putting everyone thru this. It breaks my heart to hear my mother break down in tears or my wife crying over me begging me not to leave her as I lay there having 11 quick seizures back to back. I pray that none of my future children will have to go thru this. I really hope this isn’t a genetic trait. Neither one of my parents or grandparents have them so I hope for the best. I love life and I am thankful everyday that I wake up cause you never know when it will be your last day. Peace, Love, and positivity is my mind set and my focus to get thru this setback in life and in life it’s self.

Gavin,

Have they upped your medication? Have they taken your blood to make sure you're getting the correct dosage? My son was having seizures for 6 months and it was ok because he was only having maybe 5 a day and they were just a few seconds long. He was on a low dosage of Zarontin and out of no where he had a grand mal seizure a few weeks ago. Since the grand mal they upped his medication a lot and the seizures stopped after about a week. He's been 5 days seizure free and I hope and pray it continues.

Ever since I started having seizures I'd always have this sight of a young blonde haired girl holding out her hand trying to keep me from falling right before I black out. Id always reached for it but my hand would just go through hers. It happened every single time I'd have a seizure. I just want to know if there's a reason to it. I asked my neurologist once, but she didn't understand what I was talking about. Curious if anyone else has seen something like that consistently whenever they'd have a seizure.

Visual disturbances are very common before a seizure. I know they aren't fun, but maybe think of your vision as a guardian. The seizure can't be stopped, but your body is giving you a warning. My adult son just had a seizure, and even tho he missed his flight and the timing seemed inconvenient, it was lucky it happened when it did. He had a headache previously, as well as messed up peripheral vision off and on for a few hours prior. Right before it happened, he looked into the distance and said, 'do you guys see that?' That gave me a split second to realize what was happening, call his name, get his sister's attention and help get him down before he fell. I hope this doesn't become a regular thing, but I look at the aura as a helper. Now we will watch for visual disturbances (and muscle weakness) as a possible alert that something else is brewing

I don't see anything but I smell an awful smell ..sooooo bad ...before I have a seizure. Not EVERY time but mostly before they start. I started having them a year ago ..I'm 61. On 4 meds. Now its been suggested to me ...brain surgery. Neurologist said it's coming from right frontal lobe..easy to get to... But I don't know. That's too scary. I'm getting another opinion.

hello, I saw your post and I just recently started having seizures about 2 years ago. I also get the smell as my "aura" or whatever its called. Its such a hard smell to explain and it doesn't happen every time, but its almost like a burnt egg/cigarette smoke odor eliminator spray (weird i know) and every time I have that smell, I get a grand mal about 30 minutes later. best of luck, I hope they are able too help you

Hi ....I am reading this and am being helped so much. My brother who has downs is starting to have Grand mal seizures and he refuses to take his medicene. He is 53 and never did we think this could be a possibilty. I have known a few good people that have gone through this surgury successfully. A young girl and also an adult male and they both had them come from one section of the brain. They were on emergency meds for 3 years and not one seizure did they have. I am very thankful there is help with this surgury and if my brother had the chance I would encourage it. Best of luck and hope this helps.

Just over 3 weeks ago, I had a seizure in my boss' office at work just as we were starting a meeting. It was Tonic-clonic, bit my tongue etc,. Back and ribs are still sore now almost 4 weeks later-which is frustrating. Feeling quite tired still in terms of energy levels particularly when I am at work. I hadn't had one for 18 years.

When I was younger I remember having these little seizures that would happen everyday multiple times but I never thought they were seizures because I was always aware and it was always a pain I felt in my leg and when I would hit it a couple of times it would go away. I was fine for a couple of years and they would barely happen. I would just get these really bad migraines and get this numb tingly feeling on my hand and arm and get really dizzy. I still get these migraines and it was during the end of high school when they started up again. I’m not sure if stressed caused it but the seizures came back. Seizures everyday, anytime of the day, no matter who I was with and what I was doing. At first it was controllable and just my hands twitching or doing just moving a lot for a couple of seconds and then it turned into minutes and then a pain that I can’t get rid of. Like I said it happens everyday multiple times, but it’s gotten worse with just having thoughts of it happening and then boom it happens and it only last a minute or two. Where I can’t control my hand from moving around and sometimes my leg and when people look it becomes worse and embarrassing. Honestly I don’t understand what it is. I’ve had Eeg’s done I’m the past and nothing has been found. I’m only 20 years old and I’m so depressed because I barely want to go out and do anything with anybody. Nobody understands what this is.

I think i know the feeling. Then i was given Gabapentin for the migraines, and the seizures have stopped immediately. I only take a low dose of 300mg twice in 24 hours, morning and night. It's worth a try.

My 15 years daughter started having absent seizures in 2015, Epilepsy started in 2016, Now in 2018 its attacking her a lot, Neurologist cant see anything when examining her on EEG and other scan. They say her brain is normal. And therefore cannot prescribe any medication whereas she s not diagnosed. She is mostly attacked when she is stressed, did not sleep well, and about to see her menstrual periods. Another Neuro Surgen who also could not see any abnormalities to the brain, prescribed Epillin two years back but now the Neurologist says she must stop taking it as she does not have epilesy, the attack is caused by her weight. She need to reduce a bit. What must we do? Confused?

Many people have epilepsy without it showing up on an EEG. Their seizures don’t happen at the convenience of the neurologist exams. You need to do two things. FIRST) Get an epileptologist. That’s a neurologist that specializes is epilepsy. Not all neurologists know what they are doing. An EEG must be done using a tape measure and markers to be exact in mapping out the correct placement of the contacts before they are glued on. Otherwise you will get a “perfectly normal” reading on someone having seizure activity. Most people don’t know there isn’t a national licensing requirement in the USA to administer EEGs. I’m not sure about other countries. Check the regulations where you live. SECOND ) Take video of your daughter having seizures. Try to get the entire episode. If you can record her telling you if there’s a warning sign that would be great also. Record the entire seizure, do not edit it, including recovery until she is speaking normally. This will give doctors a true time of pre-seizure, seizure time and seizure activity type, and seizure recovery and time. This will be a great diagnostic tool for doctors. If possible try to record more than one seizure before her next appointment. I have epilepsy because of a severe allergic reaction to Tramadol six years ago. I’m 61 years old. It turned my world upside down. But things eventually got better. I have a Service Dog now, he’s amazing! I’m retired, which I am really enjoying. Wishing you and your daughter all the best!

Hi there. I’m so sorry to hear about your daughter. I have grand-mal seizures and I am an epileptic. I was about your daughters age when I was first diagnosed. I am also a psychiatric nurse. Do you have a family history of epilepsy? I have seen several pseudo seizures in my field of work. They are not actual seizures but they mock a seizure when the person is experiencing one. They are usually brought on by stress or strong emotional responses, which can happen around menstruation. There are a few ways you can differentiate the two. First, pay attention to breathing. After an epileptic seizure, breathing is usually slow and there may be a drop in blood pressure, and eyes are are usually open. In a pseudo-seizure, it is typically the opposite, fast breathing and often eyes will be close and eyelids might flutter. Usually both types have a very rapid heartbeat during the episode. I’m not suggesting that your daughter is experiencing pseudoseizures, but if the doctors keep failing to see any seizure activity in her brain, it might be helpful to ask for more information from them on psudoseizures? They are treated differently- usually with psychotropics as opposed to neuroleptic drugs. I hope this might help a little. Good luck!

New neurologist! A lot of epileptics have normal EEG’s. Normal scan results does not rule out epilepsy.

I know what you mean. I had 2 seizures when I was 10 mon old. But I wasn't said to be epileptic till I had a bad one when I was 14yrs. My tests came out normal but The Drs. saw me having one when I was taken to the hospital. They said the seizure wouldn't show up on the tests unless I had one WHILE they were giving me the tests. Between 10 months and 14yrs old I was having them then but was unnoticed. I remember getting a ringing in my ears and holding my breath between those years. My seizures have never been controlled with any medication and Ive been have them for over 60 years. Sometimes I have anywhere from 10 to 40 a day. I just had to learn how to cope and accept it

Very true. I'm 48 at two I fell out of a high chair and hit my head and was knocked unconscious. Dr's could never find anything but as soon as one was witnessed they said they were real. Fast forward and about 18 They stopped. But while pregnant I wound have a few. Then nothing until I was about 35. I was hit in the head and a few months later I began having seizures. Again told there was nothing. They went away for about three years and then i got a migraine and at the hospital i had a seizure. They tested and again said i was fine but they were confused because it didn't seem to be anything yet looked like one. Then three years ago they began every month and they tested again. But this time i had a seizure while testing was going on. They said it showed that I was epileptic and now the last three have been status epilepticus. I kept telling them they were changing. Nobody would listen. But, I'm sure you all know that feeling. We have them but yet they know...pft.

Wow. I’m sorry you have to go through that. What a bunch of jerks(no pun intended). I know exactly what you mean. I had to go through some crap myself with lots of know-it-all doctors that don’t know jack.

Stress can be a trigger. PTSD is what initially led to my seizures. You can't rely on an EEG to diagnose or rule out seizure activity. My sister inlaw has Grand Mal Seizures and her EEGs come back clear. I've had 2 EEGs and only one showed seizure activity. See a different Neurologist!!!

Absolutely. I'm SEVERELY epileptic.
I have looooong lasting Generalized Tonic Clonic (Convulsing), Focal (Crazy eyes & talk like I'm high/inresponse to whomever's speaking but usually makes LESS THAN no sense) & Absence Seizures, though thankfully, USUALLY, WITH AN AURA (AWFUL SMELL & IT'S ALWAYS THE SAME)
*ANYHOW, "EPILEPSY CAN ONLY BE PROPERLY DIAGNOSED WITH IMAGING (AN EEG (THE SLEEPOVER KIND)) IF YOU HAPPEN TO HAVE EPILIPTIFORM ACTIVITY DURING THE TEST." -(MY WONDERFUL, ACCLAIMED) NEUROLOGIST/EPILEPSY SPECIALIST (OUT OF OVER 20 DOCTORS) AT THE UNIVERSITY OF PENNSYLVANIA (AN INCREDIBLE HOSPITAL THAT HAPPENS TO NOT BE MY 1ST NEUROLOGIST & AN IVY LEAGUE SCHOOL AND ALL THAT JAZZ TOO LOL

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