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    Has Anyone Heard of Sleeping Seizures?
    cuiling posted:
    Nine years ago, I was a normal, healthy 19-year-old kid. About two weeks before my 20th birthday, I had my first seizure. I didn't know it then, but my life was going to change forever. I'm turning 29 next month, but I'm sorry to say that seizures are still a major part of who I am.

    I've never officially been diagnosed with epilepsy, but I've been to my share of doctors. The problem with my condition though is that I only have seizures when I'm sleeping. So, no doctor wants me to come in and go to sleep, so no doctor has ever seen one of them. I actually had one doctor tell me, "I see some epileptic tendencies here, but you looked like you were falling asleep. It doesn't count."

    Eventually, we found one doctor who said that he'd read about this type of condition when in med school. He said it is called "Sleeping Seizures."

    Basically, every time I go to sleep, I run the chance of having a seizure. I've had probably hundreds of seizures in the past nine years. I've bitten my tongue so badly that it is shaped like the inside of my teeth now. I'm missing half my taste buds. I even had a seizures at 30,000 ft one time! The flight attendants were ready to die!

    This past week, I had four seizures in 24 hours. It pretty much wiped me out and stole this week away. This was the first time that I've ever really thought that I wasn't going to make it. For a while, I was so out of it that I thought I'd already died. This week has been really scary, and I don't know how to help my family. If I die, they're the ones who are going to suffer, and I want to help ease that pain as much as possible.

    I have no idea what triggers my seizures, but any advice would be great. I'm scared and don't know what to do.
    dancer86442 responded:
    Hello Culling,

    Welcome to our Community/family. I have advice. I have 'experience'. The majority of my seizures were at nite. These are known as Nocturnal Seizures. I thought they were All Convulsive/tonic-clonics aka gran mals. I learned recently, that I still have Nocturnal seizures in my sleep. Buut, there is No Physical activity & I don't chew my tongue. My Sister & Daughter have Nocturnal, too. My Sister went 52 yrs w/out treatment. Preferring to 'cope' w/ seizures, as opposed to taking medication. My daughters' started at 27, same age I was. You can clik on my pic or ID to read my Journey.

    Advice: A Videocam/audio baby monitor. (chek your yard sales or thrift stores) Or go to Radio Shack & purchase some 'spy'cams'.

    Shoot, hon, 1 seizure would knock me down for a week. I don't know if I have had multiple. Was/is someone w/ you to witness your seizures? To Aid You? Do they know proper seizure first Aide?

    Although seizures can kill you, it is very Rare. Although there is not enough Awareness about SUDEP, we can only Hope a Cure will be found soon. Preventive measure. Use an anti-suffocation pillow at nite.

    We do have Ways to Control our Seizures. We have Options. And it is a shame no Dr has ever 'listened' to you. So, let's find a Dr. A specialist. Visit for a list of Neuros & Seizure Specialists ( Epileptolagist ) These Drs are recommended by others' w/ Epilepsy or Seizure Disorders. Once you get the proper tests done, then you can decide on treatment.

    In the meantime, use our tips & Resources & the Epilepsy Health Center to learn more. Knowledge is Power. And Sometimes, you need to know as much or More than your Dr. You Are Your Own Best Advocate! You Know something ain't rite. I Know something ain't rite!

    Helpful Tips on the rite: Read Journal Info! Include Any possible Head Traumas, Major Illnesses (especially those w/ High fever) Family History of Diabetes or other Illnesses. Keep asking questions. Continue to seek our Support & know we will be here for you. Thank You for sharing your Journey. Anytime you want to rant or 'chat' we will be here. I Hope my reply has Helped. Please, keep us posted. Hugs

    Love Candi
    Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
    cuiling replied to dancer86442's response:
    Thank you, Candi, for your reply! I'm not a teary-eyed, kind of girl, but I've been so emotional this week! I feel like crying simply because someone out there "gets it" and can relate. (sorry, I'm not normally like that!)

    I don't usually sleep with someone. I did when I first started having them. I used a baby monitor and everything, but I eventually put an end to that. My explained to my family that I was going to live my life even if my head was having a civil war up there each night. So, I've been on my own for several years now. Usually, I can tell if I've had one, but this time was really different. I honestly remember almost nothing of this past week. It is like it just flew away.

    You mentioned that your seizures wipe you out for a week? How do you cope? Have you ever had a panic attack? Last night, I slept with my mom, but I literally cried myself to sleep. For some reason, I was 500% certain that if I feel asleep, I wouldn't wake up again. In hindsight, of course I did wake up, but that was one of the worst nights of my life. Have any of you had days or evenings like that? How do you deal with it? What about your jobs? What do you do when it impacts your professional life?

    I'm sorry if I'm asking "stupid" or beginner questions. I was talking to my mom about my condition, and I feel that we, as a family, have tried to pretend nothing is different for so many years. It is me more than them, but I've refused to acknowledge that I might need to be more careful than "normal" people.
    dancer86442 replied to cuiling's response:
    Hello Culling,

    Oh Dear, WebMD is messing w/ my Smiles and the link. that I posted. How weird. All those extra letters and emoticons really messed up our posts. You can find the link to in our Tips or Resources, though. Look for Topic 'Comprehensive List of Drs.....' on Phylis page. There is no need to join to read her Info.

    We all think we are alone until we find Support Groups. I know I wish I had called the Epilepsy Foundation when I saw their fliers all over the visiting room at the hospital. I wouldn't even look at them. Figured if Docs couldn't help, how could a group? Man, was I Wrong!

    I personally have never had a panic attack. But, when my Daughters' started the Drs did diagnose her w/ panic attacks/anxiety. Issues. But, she fought them tooth & nail and they finally placed her in an Epilepsy Monitoring Unit at her hospital. They were then Convinced that she had Epilepsy. She gave them a 'seizure show' & then some. Kept the Nurses and Drs on their toes, anyway.

    OK, you gave up the baby monitor. Did it have video?? Honey, that would have been Proof enough for any Dr to take you seriously. So, get another Monitor! Since your Mom has witnessed these seizures, then take her w/ you to any appts./Consultations. It helps! I sure wish I had had witnesses w/ me long time ago. Maybe they would remember everything I was told. Cuz, I don't recall What they told me. Took me 15 yrs, after diagnosis, to find out what a seizure even entailed.

    I coped the only way I knew how back then and Still. I slept! I took Epsom salt baths to relieve muscle pain (supervised baths!) Ibuprofen for aches & pains & headaches. Chewed tongue? I learned the magic of warm salt water rinse. From my Sis. I learned to Accept what was happening and to seek medical help to make it Stop. I was 'coping' ,but only thanks to the Support of my Family & my Best Friend. She is Family, too. Then, I found Hubby. Then I found this Group! I was astonished by the number of people who had Information. I was able to Piece together the Puzzle of Epilepsy. There are a Lot of Myths & Ignorance surrounding us. But, by sharing our Journey, we are making our voices heard. There are currently, 65 million people or More living w/ various Types of Epilepsy. Over 45 Types! Sometimes, more than One Type!

    Common Sense Rules! You Learn your Limitations..Your Triggers! You could start w/ avoiding Gluten products. And other products, as suggested in Journal. Nothing is 'Different' We are Still Normal People! Some of the Most Famous People, Past & present had/have Epilepsy. We are 'unique'! I only cried Once. The day my squad graduated, I was released from the AF. I didn't cry Because I had Seizures. I cried because I had Hoped for a different Life. In retrospect, if it had been a 'different Lifestyle' I would never have met the people I have met in my Daily life & in my groups. I don't think about tomorrow morning. I Thank God when I do Awake. I try to think positive. After all, it takes brains to have epilepsy. Wink! Take a Deep breath. Learn about Pursed Lip Breathing. It is recommended for people with Epilepsy/seizure disorders. Jobs? Well, there are people who succeed in working, knowing their limitations & triggers. Working w/ management for accommodations & understanding. According to Employment Laws they Cannot fire you due to your seizure status. You are protected by Laws. Others' have more Severe Issues, Having Hundreds a day. Or Less. They apply for Disability or SSI. But, Epilepsy doesn't define them. It takes Strength & Knowledge does Help! Keep in mind: When it comes to our Disorder AKA Disease, No Question is Ever Stupid.

    My Mom & Sis were in Denial. I know seizures were never discussed in our House. Educate your Family, also. I'm running out of letters. I hope I was Helpful. Hugs

    Love Candi
    Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
    saxofone1 responded:
    Hi cuilling,

    Welcome to the family. You are still the "normal" girl you were prior to your 1st seizure. Having a medical condition does not take us out of the "normal" society. Most people have something that they feel takes them out of the "norm". Your's simply happens to be ep.

    I feel that how you handle/live with ep is a personal choice. I've handled mine since '75 by being a stubborn girl who refused to be controlled by an over-active brain. I learned what I was able to do w/o setting off "additional" seizures. There is nothing wrong with limitations. I say "additional" cause there have been circumstances that may have contributed to seizures(carrying a full load at college, high sugar intake, stress factors, etc).

    I have had one, maybe two, seizures that frightened me. I have also had a few that took me away from college a few semesters. Though I have never experienced the Nocturnal seizures, I do feel your frustrations. My initial doctors didn't believe them to be true seizures cause nothing showed on my tests for about 1.5 yrs.

    My story, like Candi's is available to read. The young lady beside me is a dear friend who walked me through the preparation/expections for brain surgery. We had the same docs who thought we would be a good match.

    Don't quit on yourself. "Normal" is a state of individuality. Do what you are able and continue to find what is needed for yourself to continue to a progressive path.


    Candi, as always, is on top of things. She shares many of our thoughts.
    cuiling replied to saxofone1's response:
    Thank you, both of you, for your replies. As already mentioned, this is the first time since Day One (almost 10 years now!) that people have taken me seriously or that I've been able to talk to people with similar experiences. It is really nice!

    By my nature, I've always been a stubborn, willful personality, so ep was never "in the driver's seat" until this time. Does anyone know what makes one seizure different than another? I have no idea what I look like or do during an episode, as we've never recorded them. I'm kind of afraid to see myself that way, if that makes sense. I remember going online and watching a video of a lion having a seizure. I just sat in front of my computer and cried. Thinking of myself that way isn't easy.

    I have noticed another difference with this time(s). I am a bit of an artist. I have been since I was young. However, last night I was trying to draw a picture of a friend's little boy. On an average day, that would be no problem. It would look fine and come together easily. This time, it looked nothing like the kid! Is it possible or typical to lose skills? Is there a way to prevent that in the future?

    I've also noticed that my Chinese has been impacted. (I grew up in China, and now I work here as an ESL teacher.) People have needed to repeat questions or sentences over and over this week. I've also noticed myself "missing" words that I KNOW I knew.

    What are good ways to help prevent this in the future?

    Thank you, guys, for replying. I cannot actually express how touched I am to be able to talk with people who understand! This is incredible!! Thank you!
    saxofone1 replied to cuiling's response:
    Hi cuiling,

    Happy to be able to spread some support or lend my ears(this case eyes) to you.

    What makes one seizure differ from another? I would say it has to due with origin of the seizure. Where in the brain did the seizure begin. Since we have regions in the brain that are for specific functions, I would suppose that wheneve that area is disrupted that the outcome is going to be somewhat different than when another area is disturbed.

    My initial seizures were recognized to be simple seizures, aka petit mal. Initially, I was simply daydreaming. But when the actions changed, the docs had to take another look. According to my mom, and others who saw them, I was smacking my lips, pulling at my clothes, turning my head to one side, tapping my toes, etc. Those physical actions told the docs that I had something other than simple seizures. Since I was having no convulsions, it was concluded that I had complex partial(now called complex partial). It was about that time that something showed on the EEG. The area of the brain that showed seizure activity didn't generate simple seizures. That seemed to fit my personality better since I was never a simple person nor was I an extremist. Unless it came to how my room was kept or how my clothes matched.

    As time passed, I was changing clothes, taking phone messages, or changing bus lines during my seizures. I have no recall of such actions. My brain shifted to automatic drive.

    Worried about losing your skills? This could be dure to the seizure location or some of the meds. I had trouble with short term memory. Test time was frustrating. Some meds slowed down my reflexes thus making it difficult to learn sign language. Don't think my difficulties are sure to happen to you cause we all react differently to the same meds.

    What meds are you taking? Discuss these concerns with your doc as well as the pharmacy.

    I hope I'm making sense to you, cuilling. Use my email to chat whenever you wish.

    How's my wording, Candi?

    take care ladies,
    dancer86442 replied to cuiling's response:
    Hi culling,

    Angie did a Great job in explaining why the difference. From what you have said so far, I wonder if you are having multiple Types of seizures. I would blame our meds, but, I know Epilepsy can affect each of us differently, too. Besides you haven't been treated yet. So it is safe to say it is Epilepsy related. Some people w/ Ep can speak several languages & no Issues. Some, have a Hard time, like you, figuring out specific words that we Know we know. But, having to ask a question more than once? This could be another form of Seizure activity. Known as Absence Seizures. These are very hard to notice, unless they last awhile. But most last 1 second up to 3 minutes, sometimes more. Or they can occur repeatedly. Or as we like to say: Back to Back. Meaning there is a break between each incident. Basically, it means you are blanking out, zoning out at the time. When it stops or you come back to 'norm' you pick up where you left off, but, have no recall of people talking to you. But, unless someone is told what signs to watch for, they have no clue, as witnesses, as to what just happened. Sometimes, these incidents can leave you very tired or Confused. To learn more about Types of seizures & symptoms you should visit our Epilepsy Center Highlighted in Blue below. See if any symptoms are familiar &/or have been repeats of similar incidents.

    I would say your Mom is your best source of Info, for now. Ask her to read the Info, too. See what she says. And write it down & ask a trusted co-worker, to 'watch' over you & take note of similar 'out of norm' incidents. I have Never watched a Seizure film of any kind. Why? Because I know we all experience them differently. And I personally, do not care to watch myself have one. It's enough to Know what seizures are & what can occur during certain Types. has another article you can Search for. 45 types of Seizures & symptoms.

    Prevention: You have Options! You can start by getting tested & diagnosed properly. Then, it's up to you. Medication or 'alternatives'. But, treatment should/ will depend on Type of seizures & frequency. And All Treatments are 'Trial & error' for each of us.

    Losing Skill? This would be a great question for a former member who is an artist. I will ask her. She quit WebMD, but, is now my Friend on Face Book.

    Culling, I am Proud of You for sharing your Journey & asking questions. You wouldn't believe how many people Don't or Won't 'share'. They prefer to remain Lurkers. But, I don't really mind, as long as they are 'listening' & Learning from those who Do Share. Maybe one of them will come Forward to let you know 'You ain't Alone'. You Never Were!

    You are stubborn & willful. The Info you Learn will be Good to know when it comes to dealing w/ Drs. So, keep asking questions. Seek Professional Help. Once More! Be Persistent! If need be.

    Love Candi
    Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
    cuiling replied to dancer86442's response:
    Seriously, you guys are incredible. I wish I had discovered a caring community like this years ago! I can make a promise though that you'll be seeing me around!

    I don't know about when I'll be able to get examined, next summer would be the absolute earliest. My job here is not very flexible about just picking up and leaving, not to mention the cost of flights! I am a bit nervous about "admitting," or rather having a doctor confirm, that I'm epileptic. I'm nervous that if I admit it OFFICIALLY then my life is going to be altered beyond recovery. Things like driving are going to be totally out, right? So, in your opinions, is it worth it?

    I don't know about absence seizures. I'd never even heard of them, but I'll look into it. How do you explain things that are "off" to a classroom of children? I've muddled through for ten years, yes, but this time was worse than before. I teach about 70 different kids every weekend. Starting last semester, my students began to notice and comment on my memory and concentration problems. I've been teaching since 1998 (I was 12!), and that has never happened until this past spring. How do I maintain control and respect while forgetting even basic things?

    Once again, thank you for responding. This has been a TOUGH week, but this website has lessened a bit of that hardship! THANKS!!!
    saxofone1 replied to cuiling's response:
    Hi cuiling,

    I too wish I had had this support back in the 70s when my ep began. My mom certainly needed some support.

    Whenever you do get an official diagnosis of epilepsy, you will never be an "epileptic." You will ge someone who has epilepsy. The term "epileptic" is a descriptive word that unfairly puts limitations on those of us who have epilepsy. We are expected to be able to only do so much. Much else is supposedly out of our abilities. That assuption is totally wrong and prejudicial.

    Kids. Wow, kids!!!!! I started doing volunteer work with kindergardeners back in the mid 80s. I was taking a break from college. They were wonderful and very supportive. When a student asked me why I wore my medic alert bracelet, I simply gathered the class together. I explained to the kids, using words that they understood, what ep was. Yes, they had questions to ask me. "Can I catch a seizure like I caught my brother's cold?" "Are you contagious, Miss Angie?" "Are you taking your meds like the doc said?"

    I remember explaining seizures like a power failure/shortage in the brain. The kids understood and stayed on the alert since that day.

    Teach them early so that you can possibly eliminate some of the myths that are centuries old about ep. You just might be surprised about their reactions. If you show fear, then the kids have a reason to be afraid too.

    I never learned to drive since my seizures started about a week before I turned 14. Without a car at my disposal, I learned to get around on the bus, commuter trains, by foot. Not driving didn't stop me from getting to where I had to go. Soon people were asking me where places were and how to get to them.

    Yes, ep might take some things away from us. But we must make those adjustments so that we don't become the "epileptic" that society thinks we should be. This is also a time to test your inner strengths. Big adjustments but it can be conquered with a strong heart and will.

    You know your kids better than we do. How do you feel they will respond to you talking to them about ep? Check Amazon for books about ep and kids. There are several.

    BTW, after my brain surgery, a 5-yr old wanted to redo it for me. He planned to put a computer chip in and have me programmed as he wanted. His twin would often greet me with "I took your brain out last nite, Miss Angie, and made a brain sundae. I gave you my dog's extra brain!!" They kept me laughing.

    Have a good day,
    dancer86442 replied to cuiling's response:

    I sure wish you Wouldn't wait a Yr to se a Dr. I understand Why, but, a lot of things w/in your head can change if seizures are not treated. You have been noticing those changes. Any more changes could make your seizures, if that is what is happening, Worse. Then again, w/ EP you never know. My Sis went untreated for 52 yrs. I worried about her, but, trusted her Hubby to Handle any activity. But, it is Scary to think that the end result was she started having Severe Suicidal Thoughts. Which finally made her fess up to her Homeopathic MD. And get treatment.

    Are there no Neuros where you live? Why would you have to fly? As for Driving. If you truly are experiencing 'blank' moments, you should Restrict yourself from Driving! It only takes 2 seconds of 'inattention' to have a wreck. There are enough 'crazies' out there driving. Don't be one of them! I will admit there are Lots of ppl who continue to drive despite Seizure Diagnosis/incidents. But, there are others' who have lived to share the Horror of awakening to serious or not so serious accidents. Even More stories from family members, of ppl w/ Epilepsy who didn't survive. We had a Lady here in BHC, AZ who just went to the store for some necessities. She took all her kids w/ her. Plus, was PG. She & her kids never made it home. She only went a few blocks to the store & stayed on the back roads. But she had an absence seizure & drove off a private boating dock, into the Colorado River. May she & her children RIP! Now, you know the consequences! Are you ready to take the risk? Lots of ppl w/ EP say who cares? Others' do not pay attn. to the road at all times & wreck, too. But, we are Not other People. We aren't just changing the radio station or talking on a cell phone or other Stupid stuff. Not if we Want to Live! You teach children?? Is this what you want to teach them? Oh, my Teacher had seizures & died cuz, she was driving?? Possibly killing others'. Am I scaring you? I Hope SO! But, I apologize. Driving is just one of many 'stupidity of others' w/ EP' Issues that I tend to get riled about.

    I don't use the word Epileptic to define myself either. Others' do, though. I don't care what anyone calls it or themselves. Although Angie has 'good reasons' as to Why Not, too. . To me it all means the same. But, You should see the War that breaks out in other support groups over proper terminology.

    Angie did a great job of answering your questions. I see no need to repeat her advice. I would advise that you take note of any authors/Titles you find on & take them to the Research Librarian at your Local Library. May save you the Cost of Amazon Books. I do Hope you reconsider seeing a Doc ASAP! Know I Care! Hope you had a Good Day!

    Love Candi
    Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
    dancer86442 replied to cuiling's response:
    BTW: Driving Subject: Just becuz, you do have EP does not mean you will Never drive again. Each State/Country has it's own DMV Laws. Seizure control determines When they Can drive again. Could be 3 mths up to a yr depending on where you live. can tell you what your State Law is. But, keep in mind, the UK did a study on this topic & concluded that 1 yr seizure free was the best Option.
    Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
    saxofone1 replied to dancer86442's response:
    Good morning C and C,

    Hope your day is starting off with smiles.

    Candi, I understand what you're saying about "epileptic" vs "having epilepsy". Coming from the black community, I had to fight for my identity of being "angie" vs being an "epileptic". I had a personal battle within my race so that I was recognized for myself, not an overactive brain. Though I did have support within the Black community, I also had my biggest battles there too.

    Cuiling, do you live near an EFA(Epilepsy Foundation of America)? If so, think about asking them if they have a support group. Posssibly check a local hospital.

    I live in the Vegas valley and participate in a monthly group that is managed by my doc. It does a world a good to be able to share stories with people who fully understand the seizures, meds, etc. But for right now, we are your support group.

    Thanks Candi for your supportive words about my posts.

    Hang in there Cuilling. Many answers seldom come when we're looking for them.

    cuiling replied to saxofone1's response:
    Hi Angie and Candi! Once again, thanks you for responses. I'm going to attempt to keep this short-ish, but we'll see.

    First, driving. Thank you, Candi, for your concern. I don't blame you, and would probably react the same way in your shoes. However, I'm not actively driving at all right now, so don't worry about that. I don't have a Chinese driver's license, so that isn't a big problem right now. I just have a car in the States, and the thought of never driving that again is a bit sad. (it's a '62 Ford Falcon Ranchero. original bench seat and pre-power steering. gotta love the classics!!) So, I'm not driving right now. As far as the future, I understand how all it takes is one time to hurt yourself and others.

    Second, EFA. I'm doubting that there are any of those where I live. I'm in a smaller city in the middle of China. I'm kind of in the middle of nowhere. Seriously, Mt. Everest is not that far away for me!

    Third, I don't know about visiting a doctor here. I've been to some around Asia, but Chinese doctors are not known for their good educations. Not being prejudice or anything, just being realistic. Another problem is that I might not be able to get a visa if I am "officially" diagnosed. China is VERY particular about the who, what, when, where, why, and how of their visas. If I got "kicked out," I don't know what I'd do! This is more my home than anywhere! I've been here since 1998!

    Lastly, chatting. What websites, if any, do you guys like to use for real-time chatting? China blocked Facebook, so that one is a bit difficult for me. But, I'd love to "meet" both of you in real-time!

    Thanks again!!! (if you ever visit China, let me know! i can help you visit and do all kids of stuff!)
    dancer86442 replied to cuiling's response:
    Hi Culling,

    I had a feeling you were out of State. China? As an Army Brat, I can appreciate living w/in another Country. Although we never did make it there. Germany, Okinawa & Hawaii (B4 it was a State) were & still are fav memories. I don't recall much of my Youth. Or the places we were.

    OK China! Are you aware that Acupuncture is an 'alternative' for people w/ Epilepsy. My Sister is using this method & she Loves it! (She has EP too) But, it is like pulling teeth to get her or my daughter to admit, if they are still having seizures. Anyway, I'm thinking you could go in for that & no one would have to know Why. Since Acupuncture is used for many ailments.

    Chatting? I wish WebMD would go that route. But, unfortunately, all I got is Face Book. But, I am thinking. I do know of an Epilepsy Radio Show that is listed w/ Google Plus, another one, but, would have to locate it again. to see if it's facebook related. The Google site is run by a Good Person. Well worth listening too. Plus, you can call or type in questions for them. I'll send you the URL when I find it. I know it ain't me you will be talking to, but, it would put you n contact w/ others' who know what they are talking about, too. Never can have toooo many Opinions or Friends w/ EP in this World.

    Have a Great Day OR Nite, whichever it is. Hugs!

    Love Candi
    Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.

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