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Epilepsy and sleepwalking

By March 30, 2010 - 3:17pm
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I was wondering if you could help me I have had epilepsy about 3 years and this has always been day and night. I have tonic clonic seizures both day and night and at the minute they seem a lot better in the day but more frequent at night I have also started to sleepwalk as well (usually after a seizure) I was wondering does this happen to anyone else and is it part of my epilepsy? I do really strange stuff like get dressed, eat, clean, get stuff ready for the next day but the other day I was really embassed because I woke up outside with no clothes on freezing bringing the washing in! Does this happen to anyone else and is it part of my epilepsy or something else? I used to do it as a kid but it is quite frequent at the moment I keep waking up dressed!

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EmpowHER Guest

Since I was a teen I felt like I was doing strange stuff. I always woke up in my bed nobody ever said anything to me so I thought I was imagining things. As I got older I still felt I was doing things at night,playing soul caliber I just felt this sudden urge of nightmare. I am going threw a lot of testing now I have epileptic and other stuff. A lot of stuff I think back on being a teen seeing a cop when I woke up from my bed wondering.

October 13, 2015 - 9:41am
EmpowHER Guest

When I was young I slept walked. I have epilepsy also. In my late teens I would sleep walk . while I was sleep walking I would fix cereal. The cold milk would wake me up every time. I would also walk out side and the cold ground wake me up. In my mid 20's I started having grand mal seizures at night. My seizures have gotten worse I am now 36. I walk around in a dream like state before and after my seizures. It sucks!

November 30, 2013 - 6:49pm
EmpowHER Guest
Anonymous (reply to Anonymous)

This is what seems to be happening to my mom, for about a year she has been doing the whole sleep walking thing,only she doesn't fix things she will break lamps or bang her head on the walls then she will have what seems to be a grand mal seizure following it and wake up with no recollection of what happened.
Being that she is a single mom of three kids, 2 in elementary and 1 in high school, we need to figure out what is going on yet the doctors say they don't find anything..lately I've become more worried because my 8 year old brother is starting to sleep walk and run himself into walls like she does.
I think this is a genetic thing and I was wondering if you know a diagnosis of what you are dealing with?
Thank you all help is appreciated

August 1, 2014 - 9:59am
EmpowHER Guest
Anonymous (reply to Anonymous)

the docs should be able to confirm with a sleep deprived EEG. Both the seizures and the sleepwalking are genetic. Watch your mom to see what might be triggering the episodes. She can control the sleep walking--- if it's just sleepwalking by telling herself she wants to stay in bed. I had the same problem, it took me 2 years but since she has kids she'll be able to fix it quicker than I did. Hypnosis may help too, it didn't work for me but others have said it does. Watch for triggers for the 8 year old. He can become epileptic, triggers are low sleep, strobe lights, antihistamines. Just avoid triggers as best as you can.

March 17, 2015 - 6:29pm
HERWriter Guide

rainbowbritest88 - For assistance with the cost of medications I suggest you check out the following nonprofit organization which has consolidated multiple assistance programs into one place: http://www.needymeds.org/
Good luck to you! Pat

September 27, 2010 - 5:22pm

i had luckily just had that talk with my room mate 2 days befor so she knew what to do, ive never done the sleep walking thing tho. i was diagnosed with epilepsy when i was 7, just had the small ones tho, they said i had grown out of them when i was 12 but when i was 14 they came back worse, so for the last 10 years i have had grand maul seizures. when i am on my depakote (wich also the dosage hasnt changed in years, i take 250mg 3 times a day) i dont have any epileptic fits, the only thing i might have is the eye rolling thing when i am really tired, but i am unable to afford my medication anymore since i have no insurance. for the last 4 years i have just been monitoring my sleep, making sure to try to maintain stress and have done what i could to control the seizures, befor this last one it had been a year and a half. do u know how i can deal with this traumatized feeling i get afterward? any suggestions besides the obvious of get counseling or somethin cuz again i have no insurance, i work at a gas station 50 hours a week, i need to figure out some way to deal with this at home and on my own or with my husbands help....please help

September 27, 2010 - 12:57pm
EmpowHER Guest

i am also epileptic, i have grand maul seizures and this same thing happened to me the night befor last, i am not used to this tho, i normally have then when i am woken up from a deep sleep or when i am really tired etc, but i was aparently convinced i had to get ready for work and i was tellin my room mate i had to go to work...wich i didnt and then i had a seizure, i dont recall any of this but i can tell i had a seizure by how beat up my body feels. i am now scared out of my mind cuz its never happened in my sleep, how do i deal with this? after every seizure i have i get traumatized where i am scared to do anything and i want to go to sleep so bad that i cant, i cant relax for like a week after my seizures and being in my own home scares me cuz i get flashbacks of them, i am always worried that i am overthinking it and that i am going to send myself into another seizure by stressin over it. my husband wishes i could get over it but he doesnt realize how scarey it is for me, i wake up in my own home and dont know where i am or what month it is, how do i get over this? i usually go stay in hotels for a week afterwards but i cant do that anymore. please help

September 27, 2010 - 7:55am
(reply to Anonymous)

Hi Anonymous,
Thank you for your post, and for finding EmpowHER.
Are you or have you ever been under the care of a doctor for your seizures and sleep walking? What did they say? When is the most recent time you had an episode before this one? You may want to call the doctor to tell them about your symptoms and anxiety.
Pat Elliot, a fellow HerWriter and Patient Advocate had some good information about dealing with seizures and sleep walking in her comment. Please read it above.
From the Mayo Clinic Website, here are things someone close to you can do when you are having a seizure. It may be good for your roommate to know:
- If you see someone having a seizure, call for medical help.
- Gently roll the person onto one side and put something soft under his or her head.
- Loosen tight neckwear.
- Don't put anything in the mouth — the tongue can't be swallowed and objects placed in the mouth can be bitten or inhaled.
- Don't try to restrain the person.
- Look for a medical alert bracelet, which may indicate an emergency contact person and other information.
- A grand mal seizure lasting more than five minutes, or immediately followed by a second seizure, should be considered a medical emergency in most people. If this happens, emergency care should be sought as quickly as possible.
Here' s hints on when to seek medical further medical advice:
- When the number of seizures experienced increases significantly without explanation.
- When new signs or symptoms of seizures appear.
Here is more information about Grand Mal Seizures from that Mayo Clinic website page: http://www.mayoclinic.com/health/grand-mal-seizure/DS00222
Good luck and let us know how you are doing.

September 27, 2010 - 12:10pm

Thank you for your response it has been very helpful, its nice to know I'm not the only person doing this!
I really appreciate all the information
Donna xx

April 1, 2010 - 1:41pm
HERWriter Guide

Hi Donna - How frightening that must have been to wake up outside with no clothes on. From what I was able to find on a number of patient support forums you're not alone in dealing with both epilepsy and sleepwalking.

The EmpowHer reference page on sleep walking provides a lot of helpful information: https://www.empowher.com/media/reference/sleepwalking

There is a more detailed clinical explanation in this report from MedScape's clinical reference service: http://emedicine.medscape.com/article/1188854-overview

The university of Alabama did a study of sleep walking and epilepsy. The report states: Recent studies of epilepsy show that clinical manifestations of nearly all seizure disorders are linked to sleep physiology.In nearly 80 percent of cases, seizures occur predominantly during sleep or on arousal from sleep...Simple parasomnias, such as sleepwalking and sleep talking, tend to be more common in children and occur less frequently as the brain’s sleep mechanism matures,although they can resurface during periods of psychological stress.

Please let us know if this information is helpful and keep us posted on your progress. Hopefully if you do walk outside in your sleep in the future you will have clothes on, but more importantly, you will remain safe.
Take care, Pat

March 31, 2010 - 5:27pm
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