What Does it Feel Like to Have a Seizure?

"I have a few different types of seizures, and I have names for them all.  The smallest ones I have I call auras. (they are not auras but actually small seizures)  It feels like little butterflies in my chest, or the feeling you get in your chest when you go down the first big hill in a rollercoaster.  I have these almost every day, but I can have a conversation with you and you would not know I was having one.  Sometimes they last a little longer and I have to stop for a minute and then I smile a smile like a Cheshire Cat!!  I also have what I call "zone-outs" because that is what I do - zone out.  Friends tell me that I get a glazed look over my eyes and I will talk to them, but that I look totally out of it.  Sometimes I remember what happens during these periods, sometimes I remember parts of it - and sometimes I remember none of it.  It is very confusing afterwards and I hate it.  There are some days I feel out of it for the whole day, almost like an out of body experience.  I call that a "twilight zone" day.  I used to have grand mal seizures but I haven't had one of those in about 7 years.  I had brain surgery and those are gone - but now I have the smaller ones. 

Trying to explain what a seizure feels like is very hard to do." 

- Lindsay

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"My son Ricarrdo is usually a very calm and sensitive person but after a seizure he changes completely becoming aggressive. It's very difficult to deal with him on those particular occasions and we prefer leaving him alone until he feels a little bit better."

- Derna, Italy

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" I would always have a aura before having my seizure, my aura felt like I was riding a Roller Coaster, I would climb the first hill and go down and up the second hill and right into my seizure, I felt like the feeling in my stomach moved up into my head, making me feel like I was going into a trance, I could talk, walk, and knew where I was, my seizures lasted from 15 seconds to 2 minutes, afterwards I was very tired and could sleep for hours!"

- Jim

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"My seizures are a complex partial seizures. I now feel in my peri-menopause stage much more tired out afterwards. Stronger at times and longer at times. I feel like I am asleep, my eyes are closed at least I think so. Really I am not, my eyes are open but I see complete black. I then start to look, in my eyes that they are opening up to me, but are really already opened. I moan and groan at times. And the past year in half I will now say "OH JESUS", "OH JESUS"!!

And depending how long my seizure is the more of those words I repeat. My family now really knows when I am having a seizure because of those repeated words. There is other times that I may get frightful and look like I am panicking and may big to cry. But that is very rare.

The other rare thing is feeling like I am in a box. Like I am in the TV looking out at everyone. And it is not a complex partial seizure. I know exactly what is going on but I feel like I can not hear as well but am concentrating on what is happening to me as people are still talking with me."

Lisa- Pennsylvania

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"I have Seizures at night while I'm asleep. I don't know I've had one until my wife tells me. My usual initial response is to deny I had a Seizure. After a few minuets, I come to accept the fact I had a Seizure.

My Seizures usually occur in clusters. One followed by another after brief time intervals over a period of 20 minutes or so. I have absolutely no recollection of having Seizures. I also do not experience any warning signs that I will be having a seizure. After the Seizure, I begin to experience physical side effects. Extreme thirst over a period of several hours. Frequent tips the bathroom, very tired, depressed, and irritable throughout the day. I sleep very soundly the next night. For me, a Seizure is like and earthquake. It is impossible to predict. I haven't had a daytime or awake Seizure in a long time, over a year. When I did, I had no warring or awareness a Seizure had occurred unless someone told me. Sometimes I would end up on the ground however I was always convinced I did not have one as I had absolutely no recollection.

The afterwards side effects were as explained above.  

- Richard

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"Kaja has different kind of seizures. This is how she describes them.

Myoklonies:
Its disguising. I get jerks around my mouth. It last for just a few seconds, and I am all awake and can feel it. It is not painful, just creepy. When it is over everything goes back to normal.

Absences:
I usually can`t tell when I`ve had absences. Sometimes I can sense that I have missed something in a conversation, and if they last for many seconds I sometimes get a bit tired afterwards. That`s when I am told they last for 20-30 seconds. During my absences I may continue to do what I am doing, but I am not awake and I don`t know what`s happening. Once I walked in the middle of the road in front of cars. If someone talks to me I can`t hear them. Like Brooklyn I also very often say sorry when I wake up from them, and I don`t know why.

General tonic klonic seizure:
I am unconscious during these seizure, but when the convulsions are over I gradually wakes up. I use to have convulsions for about 5 minutes. When I wake up I sometimes get confused, and I have a terrible head ache. I feel sick and sleeps heavily for 5 - 7 hours. I always have a hangover the next day. Sometimes I bite my tong during seizure and that hurts."

- Kaja, Norway

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"When my daughter had Seizures, both Grand Mal and Petite mal type.( after having vaccines) she would tell me that in her mind she could hear me and follow what I said, but she could not control  or move herself.

She was treated using low crab diet and Hyperbaric Oxygen Therapy and they completely resolved!

See my website for more on seizures: www.hbot4u.com I tell all our patients to use the Atkins diet for seizure control.

Increasing Fatty acids, oxygen and Atkins is the key!!"

Susan Rodriguez CHT
Rapid Recovery Hyperbarics
www.hbot4u.com

"Sarena says she just feels weird sometimes her head feels like it is shaking and sometimes she doesn't feel anything"

- Keena and Sarena, Payette Idaho

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"My seizures are the result of an AVM/aneurism that appeared at the age of 34.  My first one was totally unexpected.  I had been treated successfully for the AVM with a combo of radiation and sealing of the bleed in my brain in 2004.  I recovered well and had been back to work for sometime. 

"Then in 2007 while at work-my first seizure.  I had no idea what was going on. I felt funny, like I had been drugged, hallucinogenic.  My vision was distorted, I felt like I was going to have diarrhea.  I was alone by myself.

"I sat down and tried to calm myself.  Then after I realized that this feeling wasn't goling away, I got my cell phone out to call a friend nearby for help.  With my phone in my hand, looking at the buttons and keypad, I couldn't figure out how to use it! This phone that I use everyday, I didn't know how to make a call on it!  I tried to concentrate on pushing the right buttons, but this simple task was beyond me.  By now, I had walked out of the building onto the street.  Sitting on the sidewalk, I held my phone up to passerby's, wanting some assistance. I remember people looking at me like I was crazy, drunk,  Someone did try to see what I needed, but I found myself unable to talk.  I remember feeling so scared and helpless, sobbing and crying.  And that is the last thing I remember that day.  

"I'm told that someone did call an ambulance, and later in the hospital it was revealed to me what happened.  In the time since then, I have had other seizures, some mild -some not.  But at least they are always preceded by an aura (forewarning if you like).  My last seizure was very mild, and quite some time ago.  I am hoping that Keppra will continue to work well for me.  If I ever feel weird, I just get my phone out ( to see if it makes sense to me)!"

- Emily

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"My son (43) doesn't talk and communication about how he feels is largely conjecture on our part. He has several kinds of seizures so I expect they don't all feel the same.

Aura:
Some clearly begin with a strange feeling in the stomach, if not nausea. Others don't seem to give any warning, but we just don't know. Some are preceded by an extremely happy feeling, others by some visionary disturbance. But he can have these at odd moments without a subsequent seizure so maybe these observations are about mild seizures. There can be considerable build up of tension, usually over a period of days including loss of the ability to fall asleep. If he becomes very insistent about wanting to listen to a certain song or CD, there's usually a seizure somewhere in the not too distant future. Meaning anywhere from hours to days. In this way it is quite possible that he is trying to bring on a seizure, which in turn may bring him relief from something. Or it is an addiction. One thing is clear: seizures are his way of throwing off an illness like flu. If he's ill he has many seizures. We don't stop these with drugs unless the situation becomes life threatening. As the Ketogenic diet apparently had no effect, we are trying him on Ayurvedic medicine. His health is, as a result, excellent and he seems to recover faster from a seizure and feel better able to cope with the world but the seizures have not been curbed. As I understand it, the epilepsy center in the brain is close to where emotional activity is governed. These have become interdependent, so that any drugging might severely dampen his quality of life.  

Seizures:
Tonic-Clonic and milder forms of cramping start on the left side and are accompanied by some, or eventually total, loss of consciousness. As my son doesn't talk (and is autistic to the point of poor intellectual development and other typical problems surrounding autism), it seems like he takes life as it comes and doesn't ask himself why he ended up on the floor, for instance. But we really don't know. One type of seizure is terrible to watch because he seems to be in a state of terrible fright as if he is trying to get away from someone who is murdering him. 

After effects:
These can range anywhere between rapid recovery without a rest period to great tiredness and long periods of sleeping. There can also be a short period of unusual behaviour, like hand clapping or hitting the floor with the flat of his hand, or pulling up his socks."

 - Celestine

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"Seizures come in different types and feel different for everyone. Mine come in the form of an "aura". It feels like a very strong dejvu, like I'm having a living memory. Sometimes I have a shutter or what feels like an electrical current running through me. I am usually fine within moments. At times, after one I will become weepy, exhausted, and think I must reassure those around me. "

- Rebecca 

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"My wife's dog ( Doberman pinscher ) alerts her about 15 minutes before a seizure.  She prepares herself for it by getting in a safe place and lying down.  She sometimes has a few minutes of irritability or extreme emotion before it starts which can serve as a warning, but usually not.  Sometimes she remembers nothing of the seizure but realizes she lost some time.  Sometimes she has a minute or two in which she can not move or speak when the seizure starts that she remembers.  She says this is always very frightening.  Sometimes she is aware through the seizure and tries to speak to us, but it is usually very slurred and we are unable to understand.  She usually does not remember these seizures.  Sometimes she is aware and can speak throughout the entire seizure and is comforted by the presence of us.  She says that as bad as the seizure looks, it does not hurt her except for the accompanying headache and occasional muscle cramp/stiffness in her legs.  In the seizures that she is unaware she gains awareness slowly most times as it is ending and goes from a state of total confusion to normal over a period of about 15 minutes.  She is scared at first because she doesn't recognize anyone ( even family ) or she seems to be in a different time in her life.  As she comes back to understanding what's going on there is a very emotional period sometimes.  Before some seizures there is a period of anxiety and/or slurred speech that returns to normal after the seizure.  Sometimes everything is normal before the seizure, and then after it there is a period of affected speech.  Sometimes speech is affected for many hours, or even overnight into the next day. 

"Because she is a stay-at-home mom the onset of this condition was not as life-altering as it is for some.  Her dog's ability to give her warning ( so far with 100% accuracy ) gives her independence.  She makes the best of it with a good attitude, but can understand how some would feel depressed.  She always has family around to make sure she is safe through the seizures, sometimes many in one day.  It is very rare for her to have a day with no seizures.  I hope this information is helpful to anyone dealing with seizures or who helps comfort someone who has seizures." 

- George in New Hampshire

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"I wish I could help you in exactly what my child feels.  He is unable to communicate.  However, I can tell you what I think he is feeling, as a mom, and just knowing Carson's expressions and cries. 

"Carson can feel some of his seizures coming on.  At times he will cry up to 30 minutes before a big (for us) seizure.  We feel that this cry is a fear of what is coming, and that his body just does not feel right.  As soon as these seizures end, he stops crying.  Some other seizures are hitting the pleasure spot in his brain, he has the most beautiful smile during these (he does not smile otherwise).  Others he hollers out as to say, 'this is weird, make it stop.'  Still others make him gag and have complete loss of his entire body, I assume that these are very painful, after these seizures he usually sleeps for a while.

"It is so hard to watch him go through this, Carson is on 5 different seizure medications and we still can not get them under control.  Carson has anywhere from 30-50+ seizures a day.  His littlest ones last 6-7 seconds and are a quick jerk of his body.  His largest ones are 45-60 seconds and are a full body shaking with gaging and turning blue. 

- Sarah 

Please visit the following websites to learn about Menkes disease and follow Carson's story, my son:

www.carsonbowman.net

www.carsonbowman.blogspot.com

www.themenkesfoundation.com 

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"I don't know when it's coming. It's just BOOM! it happens and I can't stop it. I know I've missed something but I don't know what. And after I'm back I feel tired and confused."

Joshua, (age 6), California

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"My seizures were like memory lapses. During my seizures I always said "help me". I don't remember saying this but thank goodness that I do. This always made people aware of what was getting ready to happen. I know after the seizure that one had occurred only by the expressions on peoples' faces staring at me. I am extremely tired and felt best to rest for a brief time. Thank goodness for the Atkins diet -I remain seizure free after 5 years on this diet!!!!!"

-Wanda, Roanoke, VA

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Note:  Click here for alternative and dietary options
for seizure management.

"I really don't know but it makes me feel kind of sleepy."

- Will (Pittsburgh-4 years old)

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"It feels like I'm going to explode - I get lightheaded & can't talk.  I feel cold & everything starts to sound strange to me."

- Gary

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"I can feel it coming (sometimes) and someone needs to take care of me."

- Anna (Ohio) 

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"When I was a infant, I became gravely ill, I had a fever of 108 degrees, my life was at stake, My Precious Mom was not going to let her Jimmy die, she filled a metal dishpan with ice and filled it up with water, she bathed me in that ice water praying that my temperature would come down, while I was being bathed with ice water I had my first seizure of years of seizures to follow, fifty seven years of having seizures!

"I was in Colorado with my wife and I came down with pneumonia, our family doctor kept giving me different antibiotics and I kept breaking out in rashes, the last was Biaxon, I was feeling pretty good and one morning I took my medications, twenty minutes later I could not walk, the world was spinning up and down and around, I call my wife and she took me to the doctors office, this was seven thirty in the morning, as we pulled into the driveway at the doctors office, Dr Webster and his nurse were getting out of their cars, they both felt that they were needed at the office, I need not to tell you who impressed them to be there early, they took me into the office and checked me over, I was crying like a baby, I did not want for my vision to stay messed up, I knew what good vision was like, Dr Webster told me he was putting me in the ER in McKee Medical Center, the ER doctor checked me over and call Dr Joseph Schmitt, a young Neurologist  in Loveland, as he walked into my room in the ER, I thought to my self, He is too young to know anything! he ask me how I felt when I had a seizure, I told him I got a odd feeling in my stomach, the aura, this feeling worked up into my chest, into my throat, and when it go to head, it was a "bad lightning storm"! He told me that I had "scar tissue" on the brain, the first correct diagnosis in fifty seven years, with one question! they took me down into the MRI and took many pictures, by the time I got back up to my ER room, Dr Schmitt said " Just as I suspected "That is operable, That is operable" Forgive me if have many tears in my eyes!, He told me he was making copies of the MRI's for me to take home with me to my doctor, and told me "if your doctor should refuse to give you a referral, you let me know, I will give you one! as soon as I was released, I was driven to my parents home, I sat down beside my Precious Mom and told her that she did NOT cause my epilepsy, it is being caused by scar tissue! Mom ask are you sure, YES I am Mom, I saw my Precious Mom become fifteen years younger right in front of my eyes, the light returned to her eyes that had been gone for too many years! WE held each other and cried for I don't know how long!

"When my wife and I got back home here in Stockton, California, I made a appointment with my Neurologist to ask for a referral to go to UCLA Medical Center in Los Angeles, I took the MRI copies with me, He looked at them and became angry that I had found out what was wrong with me, He refused me three times, saying I had epilepsy and I had to learn to live with it! I told him, I'm fifty seven years old, I have to learn to live with it?? You are not going to get paid for my last three visits, DO NOT BILL ME!! I came home and called Dr Schmitt in Colorado, he said I would have my referral the next day And I did!!  

"Within ninety days I was at UCLA Medical meeting the doctors, Dr Jerome Engel, Dr Fried and Dr Mullin.

"I returned to UCLA July 22, 1996 to see if I would be a candidate for brain surgery, I was on Video and EEG twenty four hours a day, I was taken off all four of my medications and deprived of sleep, the two factors that cause seizures, the EEG would tell them where in the brain the seizures originated, the Video would also tell them where the seizures originated by the body movements during a seizure, along with new MRI and SPECT and in my case CT Scans!

"In the first week I had one seizure and four auras, I laid in bed for three more weeks on no medication and had no more auras or seizures! the information they received from me was not as much as they had hoped, the first vote was not to do surgery Dr Mullin got and spoke "Jim has not come this far to be denied surgery, we must do surgery to give him his chance of being seizure free" they voted again Everyone voted for surgery even I was considered too old for the surgery! I received the phone call to be down at UCLA Medical Center on Oct 30, I got there the night of the 29th, the next morning more blood tests taken and Chest X-rays  were taken, I gave myself two pints of blood in sixty six hours, I was given the WADA test, where the run a catheter in at my groin up and by-pass my heart into my brain, they deadened the right side of my brain to make sure my speech and memory was on the left side, my scar tissue was in my right front temporal lobe, I passed the WADA test, and on Nov 5,1996 I Was rolled into the ER, I felt like I had been bathed in Sunshine, the presence of Angels, I know that the Good Lord guided Dr Fried's(Freed) mind and hands as he operated on me! I was in the hospital for nineteen days, I was back to work on Dec29,1996, part time and light duty, my doctors did not want me to go back to full time lifting TVs Stereos and the like! 

"I began to counsel brain surgery patients right after I went back to work full time, for UCLA and on the Internet, I have counseled 50 patients or parents of a patient since surgery, 43 here in the USA, 5 in Canada, 1 in Italy and 1 in Singapore!

"I am in thirty epilepsy groups in Yahoo/span as a Mentor, Co- Founder of one group and Moderator of four of these groups!

"I never want anyone who has epilepsy to feel that they are the only one like I did for most of my life, And helped a lady escape from her husband that beat her mentally and physically

"Did I mention that I have been seizure and aura free since date of surgery! Jesus and his Angels are the reason I am now seizure free!!! Heaven gets the PRAISE, but I must not forget the role my wonderful doctors played!"

- Jim 

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