Seizures and Epilepsy: Frequently Asked Questions

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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)

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!

I have been taking 8 Tramadol's a day for a long, long time. I never knew that they caused this and that makes me think twice as I take anti depressants and other pain meds too. Have not had it, but maybe should consider this and look it up and see if it is something that can happen over time?

May I ask did you drink also?No judgment on my my part..Because I was when I had my seizure...Take carr

I gave birth to my daughter a few days ago and I was told that she was having seizures due to oxygen deprivation Is there anyone out there that has experienced this before and could shed some light on what's happening Thank you

I have experienced the same, and i had to take medicine for 14 years from my birth i.e from 1994 to 2008 and later it never happened but later it came in 2012 ..but I was seizure free until I came to my mature age and started taking drinks etc for fun which resulted in retaking the birth of seizure again, now I am 24 and I recently got seizures again but it was all because of my own fault..

I have had seizures since I was 4 yrs old. They have never been controlled although I have been on nearly every medication imaginable and nearly always multiple meds at once. My dad had seizures although his was related to a car accident they still told me mine was inherited. I started doing some research on this all because I have always felt mine were related to my heart. I get over exerted and EVERY SINGLE TIME it brings on a LOT of seizures. I brought this up to my neurologist and she paid me no attention. Even after I told her the multivitamins I had started taking seemed to stop my seizures faster than my medication. Fortunately my primary doctor has a daughter who has seizures as well so she knows the pain I’m going through. She has set me up with a cardiologist and also a lab test for vitamin b because anticonvulsant medications can deplete your body of so many vitamins. Although neurologists don’t tell you that. Do all the research you can and load your baby up with natural vitamins.

I was diagnosed when I was 5 or 6. The only thing that really worked for me was pot and mental concentration. I took all kinds of medications but as I got older and started to experiment I notice that every time I smoked pot I never had any episodes. I stopped taking all meds and began meditating. I am not promoting the usage of pot but rather just telling my story. Wish you well...

Try marijuana
I have found lack of sleep to be a trigger for petit mal seizures. However, weirdly also when I am asked for directions to a place

I have had grand mal seizures since I was seven. Since then, I was put on medication to prevent them, and have had to change medications over time, from Tegretol to Apo-Divalproex. I also have absence seizures. In 2015, i had been taken off my medication in a time of four weeks and had 2 more grand mal seizures, which were 4 hours apart. I am now 17 almost 18, and I was wondering if I could ever come off the meds and not have any issues, or what my chances are of not having seizures if I do come off the meds for good. My specialist thinks I might need the meds for the rest of my life, but I just wanted to get another opinion. Thanks for the help in advance!

Have you ever thought about being able to drive -- you have to be a few years seizure free before you get your license.

If you have seizures during night you can drive again after one year as long as they are night ones

I’ve too been through the same seizures as you had, unfortunately Tegretol got to adjusted to my blood that Tegretol XR became more helpful. The worst part was the hospital gave me Keppra 1000 mg which changed my epilepsy seizures to walking absent epilepsy called unset focal...cannabis thc has been the most helpful temporary doesn’t cure but sure helps keep these seizures and absent epilepsy to a hold!

My father has just had one today. It's been 12 hours and he still can't speak. He's very unresponsive and in another world... he's in the hospital but what does this mean?

My mum is 74 on meds for stomach problems and cystitis but she had some sort of seisure around 5am due to reaction to meds or kidney infection and 14 hours later is unresponsive agitated and hasn't spoken. How long does this usually last. Very worrying never had this before

That sounds like your father had a stroke.

My daughter had seizures since a baby...the doctors believe she had a stroke in the womb and she had pretty bad seizures for 4 years then they stopped and after a couple of years she was weaned off the meds. My daughter in now 13 and although her consultant said she could still have seizures during times of stress, when hitting puberty etc, she has been clear so far. My question is when I'm filling out school forms, dancing forms etc or when she is having a sleepover with new people I let them know she has epilepsy but is extremely unlikely to daughter hates this ..should I stop or do I err on the side of cautiousness? Tia

I used to work at school, her medical condition is protected by hippa, I put it down. As far as other activities, I'd change the verb to HAD rather than has and mention it privately, asking them to direct questions or concerns to you not your teen. Especially if its not an imminent possibilitu.It helps the adults responsible to be mindful .

If your daughter hates it and stresses over it although it is unlikely stress is a very common seizure trigger. Why err on the the side of giving her a seizure when more than likely she won’t have one? If she has grown out of it which it sounds like she has just let her enjoy her childhood and don’t worry about it. Consider yourself lucky and let tomorrow take care of itself.

I had a seizure on December 16 while I was sleeping. I have no warning when I am going to have one. I awoke with a sore back and a black eye, I must of punched myself repeatedly because the black eye was severe. This is the first time I have injured myself like this

I haven't had a seizure since I was 10 but I had one episode when I was 20. Being that I haven't had a complete seizure in a while does it mean that they're gone?

Hello everyone!

Since the age of 8 i have had seizures and now I am 22 years old. My last seizure was at the age of 14 and slowly over the years i have been lucky enough to lower my medication dosage overtime because of being free of them. I played football in highschool, i was an athlete but school has always been my largest challenge, and i do believe the medication conflicted with my schooling and more. However, now i am at a extremely low dose of 50 mg zonegran and have taking this dosage for 3 years (Doctor says placebo dosage). My neurologist told me i can get off my medication at anytime when i'm ready, but i still have a deep fear of what could and can happen once i'm completely free from the meds. I do believe i have grown out of this terrifying problem but i still have a deep fear of having another seizure. My doctor said my chances of having another  seizer in my lifetime is 10-15%. At this time i believe i must take a leap of faith and move on with my life and see where it takes me. For everyone else,  just know regardless the circumstance of the health issue you suffer, you have a large amount of people who support and back you on this exact issue. So keep pushing, do not let seizures get in the way of what you are trying to pursue in life because we can and will achieve. Much love!

- Dean

My son is 12 and has been diagnosed with a rare form absence status epilepsy. His seizures show no symptoms until the seizure has lasted for hours! The first time he was misdiagnosed was May 28. He played 2 baseball games, hitting, stealing bases and catching fly balls even. The only warning we had was he started acting only tired at first then gradually he started acting confused and from there for 24 hours he didn't know what year it was, where he went to school, or even what grade he was in etc. his motors skills were perfect and he talked to everyone normal the entire time, he just couldn't answer certain questions. The hospital kept him overnight and gave him fluids and in 24 hours he slowly started remembering and they said he was good and sent us home. We know now that he was having a constant seizure the ENTIRE TIME of his confusion! Almost 3 months later he begins having the same symptoms when I woke him up for his 2nd day of school. we are sent for an EEG, which revealed at 10 am he was actually having what the neurologist referred to as the worst EEG he had seen) we then were sent to a different children's hospital where they observed him until 8:00pm, all this time my son passes every test, he is talking and his motor skills are completely normal! They finally begin his EEG around 9:00pm. It reveals he is still in seizure! They are blown away. Say they have never seen an absence case like his and they quickly gave him a big dose of adavan which immediately stops the seizure and he is able to regain his memory immediately. Does anyone have a child who has these same symptoms? I need advice and some direction and I can't find any info about someone having his same symptoms. His neuro doctor ordered a brain glucose test, but when we went for a follow up last week they said the test had been canceled and they had no idea what happened? When I asked if they were going to draw his blood and re do the test, they said that his medicine was controlling the seizures so far so they didn't feel the need to do the test! WHAT?! My concern is what if it is a glucose deficiency? Why on earth would they not check? Especially when they say they have never treated a case like my sons! I'm lost and trying to figure out if we need a second opinion and if so where?

Girl with the fiancé:

I'm a 24 year old male, and just last Friday I had a seizure. I had been taking tramadol for a few weeks (self-prescribed), and yes, overdosing. I had taken 2 on Monday, 2 on Wednesday, 5 on Thursday and 4 on Friday. Early morning I had a seizure and spent the weekend at the hospital. I don't think you should be too worried about your fiancé. The doctors told me the seizure had been cause solely by the tramadol, and found nothing in my brain that indicated it may happen again (unless I go back on the tramadol). I was given no special diet or care. They gave me some medicine for my anxiety (which was the reason why I took tramadol....stupid, I know), and some medicine to prevent seizures, just in case. As of today, I'm still feeling very tired and I'm having a little trouble concentrating, but they tell me it's normal since I had the brain equivalent of my computer rebooting. My point is: your fiancé should be fine in a few days, especially if he knows he's got your support. Just make sure he understands that tramadol is not supposed to be taken on a as-needed-basis. Good luck!

I had problems seeing last Friday and the next thing I know my wife told me I had a seizure and was out for about 15 minutes. I bit my tongue really bad and went to the doctor on Monday because I was feeling very sleepy and like I'm in a fog.

The doctor told me that I need to see a neurologist and have some tests done. The soonest they have open is April 1st for the tests and the neurologist is in June.

I'm worried. My work sent me home Tuesday and told me that "I wasn't all there" and my wife says the same but there isn't anything else I can do?

thank you for this detailed information. my wife recently had a seizure for the first time & this information is surely helpful. thanks

That medicine can make people have them

Hello everyone, I just need a little advice and support.... today my fiancee and I went to Lagoon, a theme park for those who may not know and swam a lot. It was a very hot day, like VERY and after a few hours we decided to take a break and head home for a minute for food and such. Whilst there, he told me he wasn't feeling well and then had a seizure. It was his first ever in his life. He bit his tongue hard and everything. He doesn't have epilepsy, we know that so far, and at the hospital he was given a gorgeous clean bill of health after blood work, CT Scans, the works. No diabetes, no nothing. Previous to all of this he had taken his prescription pain meds, tramadol, for his neuropathy in his legs. He had taken 14. I was unaware of the amount until the ambulance came and was told that it can induce seizures. My concern is how to take care of him now that we're home... I have never dealt with anyone who had a seizure and I'm unsure how to go about home care. Like sleeping, how do I go to sleep when I'm afraid of him having one in his sleep or stopping breathing? Is that a possibility? And are there certain foods he should eat for recovery? What's my best course of action to ensure he has a speedy and healthy recovery, and to ensure he doesn't have another one?? Hes fully himself again, conscious and joking but super exhausted. Its 12am and hes sleeping but I'm really nervous and scared and having a hard time sleeping because of it because I love him so so much.... any advice would be GREATLY appreciated, thank you....

That sounds like it was medically induced... not saying it was but just going by the way you described it. Good to know the ‘diseases’? We’re ruled out but mysteries are no fun either. I had a similar story to yours and let me tell you: my medical case is one big mystery

I've been having grand-mal seizures for past 10 years. I'm 36 now..Yesterday I had one that lasted 4 hours and then sleep all day ..all a daze. No one in family ever had them. I take Keppra and it helps mostly. I get aura's sometimes with nausea others times with a deja vu... Then I become dizzy numb and either passout or go into blank stare into no where. It's scary, and I can't remember crap after that! I'm losing long term memory as time passes and I have more seizures. I feel I've lost my life, I can't remember it. That's what really scares me. Doctors don't know why. I've had seizures standing and slammed face on work desk. Bite tongue horribly and face swollen beyond help. My co workers aware of my health, they helped and got me ER right away. It's important to make them aware. I've had seizures while driving alone and thank God he guided car to safety.. only bruised. When I awoke I was only concerned if I hurt anyone. Thank God one. Keep away from alcohol, I found it gives seizures when on meds. I have a metal heart valve too and on blood thinners and that complication is unbelievable. Just keep a positive attitude it helps.. I've made it due to the will to live. I have other ailments that I work through with help from a supportive family.

Interesting to hear your story. I am 39 years old had aortic valve replacement 2 years ago with the bovine valve, and have been having minor complications sense mostly just sweats, and dizziness. Within the last 6 months or so I think I have been experiencing seizures at night though. The first time I woke up I ripped my large toenail off. The second time I woke up breathing fast , and bit my cheek really bad... I an appointment with a neurologist next week...

Well written. I have shared this with my wife, family and co-workers because they need to know what to do, and what not to do if I have a seizure.   I had my first grand mal seizure at age 16, then eight more over 9 years.  I was diagnosed with generalized idiopathic epilepsy.    Seizures seemed to be triggered by drowsiness.  I settled into the habit of taking Dilantin without fail and went 35 years without a seizure.   I climbed mountains, traveled with abandon, swam in oceans, rivers and and pools, skied, snowboarded, wake-boarded, raced bicycles, married, had children, and have a fairly stressful career though I pretty much just live life moderately and got plenty of sleep.    It's nice what the medication allows you to do.  Two weeks ago, I came in from the garden mid-afternoon with a plan to drive alone by car and boat for the afternoon when I went down for the first of of double-header, two tonic-clonic seizures within a couple hours on the same day.  The medication level was below the therapeutic level for some reason.  I went down hard, turned very blue with a long period of confusion after. The second seizure occurred on a narrow boat dock as I was on my way to the hospital by private boat.   I didn't have a personal floatation device on, and fortunately fell onto the dock and not into the water.  Two weeks later, my ribs are still sore and my tongue is raw and painful. I have few side effects of Dilantin and it is convenient to take once daily.  I just need to make sure I 'm taking the right amount.  I plan to have my Dilantin level checked every six months.  I have started my new streak of days (years) without a seizure because the best way to not hurt after a seizure is to not have seizure at all! 

I had my 1st seizure at work on April 5th 2016. I was on a conference call, got up to go to the door and that's the last thing I remember. those on the conference call heard some grunts/noises, so they called my boss to come check on me. She found me pale and sweaty. I remember none of this. they called 911, ambulance came, then I had a "witnessed" seizure. they did a MRI, all clear, CT scans, and some blood work, all clear. Then again on April 23rd, 2016 I had 3 more seizures that night. I remember nothing. meds have been making me dizzy and or sleepy. head has sharp pains occasionally. I got EEG next week. should I ease of meds? So after seizures I was straight out of it for approx 12 hours and was a major fall hazard from what I heard I'm at on facebook or email. Age 36, brother and dad had epilepsy but grew out of it. I'm working with neuro, i got a bad feeling it's going to be a goose hunt. this no driving is getting old quick. I'm in military, but may not be much longer.

Theres different types of epilepsy as for me i have generalized epilepsy also become unconscious takes me a while to wake up from a seizure my body aches and and i cry i dont remember anything till after a while of being awake but as for me im 21 and i have the mind of a 5 as doctors have said and that the age it works at so i know that that is normal.

My girlfriend started to have seizures about two years ago. She is 26 now. She has gone through a couple of tests but was never diagnosed with epilepsy. After her seizures, she goes unconscious for about 10-30 minutes, sometimes longer but my question right now, is it normal for the person to come out of the seizure and being a different age mentally? I know she's 26, but at that time she may think she's 12 years old and begins to ask questions of who I am and where is her family. sometimes, she may have up to 5 seizures and each time we a different age. Is this something that happens normally?

My sister is having seizures on a weekly basis they seem to be getting more frequent. She finds it hard to speak after and feels very unwell. She is brain damaged and doesn't understand what is happening. If the seizures are becoming more regular does this mean it's very dangerous?