Seizures and Epilepsy: Frequently Asked Questions

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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.

I am 61 also.It is so hard to explain the awful smell and taste.I have been having these for 4 years or so and due to my stupidity I had a seizure due to alcohol poisoning. I quit drinking and they continued yet in no way a grand ma..Sporadically maybe 2 times a times.Do you suggest a more informative way to explain.He thought I had gurd?

I kinda know when I am fixing to have an episode...I feel anxiety and tingling and go into a trance.Then I feel my brain shrink and the most awful smell and taste almost like a body burning .Any suggestions I can tell my doctor..It is almost impossible to explain. PLEASE HELP

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

I had what is being called seizures 2 last Thursday this has never happened to me before. I was at work I remember smelling burnt plastic or hair or rubber something awful both times then I black out and come too (in restraints) guess I’m combative during seizures. Good to know the smell aura happens to others.

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

I had seizures from 6 until the year I nearly turned 18 in 2012 after a brain surgery, and six years on I haven't had one. But my main fear is whether they will come back or not due to 10-11 months of alot of anxiety pains which I still don't understand why I have been getting them randomly but on the positive note. My doctor wants to reduce my medication but if it benefits me then good but we'll see although I don't think I'd cope with seizures again to be honest.

I had my first seizure at 3 months old. I was put on phenobarbitol(liquid) for 5 months until i was hospitalized. The doctor put me on phenobarbitol pills and i didnt have another seizure until i turned 4. I went to bermuda where it is very hot and i didnt have any seizures . The doctor decided to ween me off the medicine. A week after i had my final dose i had a seizure and was hospitalized. Then when i was 8 i had another seizure and had to be hospitalized again after not having any seizures for 4 years. As i got older the seizures would only come whenever it was time to ween me off the medicine. Now im 21 and i have been seizure free for 3years now. I dont know what the doctor has planned for me but i hope that it will stop me from having seizures.

Tramadol gave me a seizure while I was driving and hit a light pole and fractured my spine and got a pretty bad concussion. That stuff is crap and I hope they end up with a class action lawsuit. I have read about so many seizures because of them.

I just had a seizure from tramadol. I have 3 fractures to my face several stitches above my left eye. Tramadol is given to me for pain managements. But this is the second seizure taking this crap . I told them I will not take it anymore . Its scary real scary and if you look up tramadol it even said that it lowers your seizure thresh hold ..this stuff is dangerous do not use more than what your prescribed.

Tramadol caused my epilepsy too !!!! And I only had 3 low dose pills over an 18 hour period. It would have killed me if I had taken it as written: 2 pills every 4-6 hours for pain. Thank God I started having seizures while still at home, before I was able to get in the car to drive to pick up my little girl from school like I was supposed to that day !!!
It happened over 6 years ago, but when I read other people’s stories of car accidents with seizures from Tramadol I get flashbacks of fear. I think how we could have both died that day. Once my seizures started they wouldn’t stop, even with medical intervention with the EMTs, in the ambulance, in the emergency room, and after I was hospitalized. I didn’t gain consciousness for nearly 36 hours. I can’t believe it’s still being prescribed. There are a lot of people with epilepsy because of Tramadol, and just like me, no known history of epilepsy on either side of my family for generations.

I definitely agree there needs to be a lawsuit about Tramadol. It nearly destroyed my life.

That is absolutely crazy! Who knew that a simple medication could be causing such a severe case for so many people! If only people heard this, they would be more cautious about what they take, and what their doctors' prescribe them!

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