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Momof3boys80

Seizures only during sleep

Hello! I'm new to this site...I don't have Epilepsy myself, but my 8 year old son does. I came here hoping to find some answers...if anyone has had any experience with this. My son had his first seizure when he was 23 days old. He started out with Tonic Clonic seizures and progressed into Grand Mals. The only thing that has remained the same, is they only happen while he's sleeping. I am fortunate enough to live in the Cleveland area...with access to some of the best hospitals in the US...and no one has been able to give me an answer. Doctors have never been able to pinpoint an exact location for the seizure activity. He's been through countless EEGs, MRIs, PET and CAT scans and no answers to be found. And his seizures have been changing so drastically. When they progressed to Grand Mals...it was always the same..he would wake up, let out an ear piercing scream and go into seizure activity. Now, it seems as if he's aware that they're happening, and trying to get up while they're occurring. He is currently on Triliptal..after starting out on Phenobarbital and Topamax, and he's had breakthrough seizures on all meds.

What I'm wondering is this...has anyone out there had any experience with this? With seizures that only happen during sleep. Either personally or with a child/loved one. I would appreciate any feedback! Even if just to share your story! Thank you for taking the time to read this!

Comments

Re: Seizures only during sleep

Hi Momo. I am new also and a mom except im  the one with the seizures. I have grand mal and abscence and they have been in my sleep alot for the past year and in my sleep here and there throughout my life. I was told I had epilepsy when I was only having the absence seizures at around 12 yrs old. My life has gone from one seizure to adding on another, to getting worse due to body changes and on and on. Mom, make sure you find your own reliable resourses to help continue. You have to also take care of you in order for your baby to be strong. Change doctors if need be. love always

Re: Seizures only during sleep

My daughter is 6yrs old. She has been having seizures here and there since she was about 6mo old. Her seizures are always at night and had been within the few minutes range until last year when she was 5. Her seizures ramped up in pain scale and duration. Also she seemed to be awake during them and trying to talk to me and move. Her seizures last between 10 min and 15 min long. In the begining of a seizure she is pretty aware but then around the 3minute mark the her pupils get REALLY big and she seems to become confused and not making sense anymore. She always goes back to sleep after a seizure. She doesn't seem to have much memory of the seizure and I haven't really told her anything about them. We call it 'that shaky thing'. She has been diagnosed with 'Benign Rotundic Seizures'. She has also had EEG's and MRI the haven't 'found' anything.  Until her doctors believe the seizures are causing her harm I won't put her on anti seizure meds as the side effects and possible organ damage freak me out.

Re: Seizures only during sleep

Thank you Sage and Sheez the replies! That is the same thing my son is doing...trying to talk and move during the seizure. They only last about one to five minutes though. He always goes right back to sleep after the seizure too and after about 5 minutes, I'm able to wake him up. He never remembers anything happening. I have argued with doctors about meds...I fought to the bitter end about not putting him on Depekote. The side effects of that one really freaked me out. When he was on Topamax, he couldn't sweat...which was a side effect from that. He seems to be doing well on Triliptal...we just still have breakthroughs. As for diagnosis, our first neuro came clean and said he had told us Epilepsy because he couldn't put another name to it. Every Weds. the department heads would discuss my son at their meetings, and no one could come up with any answer. It's heartbreaking and frustrating to watch your child go through something you have no control over. I do find comfort in knowing that there are people out there who understand the situation!

Re: Seizures only during sleep

My daughter has always slept with me. I had read that people who have epilepsy have a higher instance of stopping breathing in their sleep. Does your son sleep with you? Do you use some type of pad to alert you to his seizures?

Re: Seizures only during sleep

I keep him in the same room with me...There have been times during his seizures that he's stopped breathing which is one of the most terrifying things that has happened. I used to have a cat that would alert me to his seizures. He would meow very loudly and lay with my son and rub all over him...I knew they were coming when he did that. Now, his breathing alerts me. He breathes very rapidly and deeply and that always wakes me up.

Re: Seizures only during sleep

Hi.  Momof3, I noticed you say you are from the Cleveland area.  I am in the same area and we are going to our first appointment with a neurologist in the middle of May.  My 10 year old has what look like seizures only while sleeping, usually around an hour after falling asleep.  Our pediatrician called it Night Terrors 1 1/2 years ago and again last year at her well visit.  Finally, they have decided we need to see a specialist.  I'd love to talk to someone with experience with all this.  Let me know if you might have some time.  My real email address is hrb_tutor_cleveland@yahoo.com.  Anyone with related experience, I'd love to hear from you. Thanks so much.  Best wishes to all of you.

Re: Seizures only during sleep

Hi momo,

I'm a 28 y/o male. i've been getting seizures since i was 17 y/o and only during sleep. doesnt matter if its nap during the day or sleeping at night. i only get seizures while sleeping. i also only get them while not on my meds. i know this because there have been times i've gone off my meds (i'm taking 400mg of dilantin). 

none of the doctors (4 in total) can figure out why i get them. i've done every test possible and still no clue as to what is causing my seizures. 

i should also mention that i have sleep apnea which my doctor says has no historical connection to seizures but i feel like the lack of oxygen to the brain could possibly be something to investigate. 

my doctor is currently researching new meds for me to go on because he says dilantin is not something i should be on for an extended time. i personally hate the way dilantin makes me feel, it causes mood swings and just makes me feel slow and depressed most of the time. my nerves are a mess while on the meds and my hands start to shake every so often. i'll keep you posted once i get the new meds. 

Re: Seizures only during sleep

I'm sorry to hear! I know how frustrating it is when you see so many people and no one can figure out what's going on. Just make sure you speak up! If you feel that the lack of oxygen could be causing a problem, talk to your docs and make sure you let them know you'd like them to dig further into that...I've had to do that myself. I know the Topamax was awful, and I was so happy when they switched his meds...and yes, please let me know how things go when you start your new meds! I wish you all the luck and hope they can find an answer for you!!

Re: Seizures only during sleep

Hi,

I am a male and am 50 years old. I too get seizures only during sleep.

I had my first seizure when I was 21 and was wrongly diagnosed for having worms in my stomach etc. etc.

I was dianosed with this type of eplilepsy when I was about 22.

I am on  pheytoin sodium 200mg(Epsolin,Eptoin,Dilatin) in the morning and pheytoin sodium200mg alongwith  Gardenal(phenobarbetine -60mg) at bedtime.

I too had attacks if I missed my medicines(during sleep only).

During these 28 years of my taking these medicines, I have noticed that apart from taking medicines, regular and uninterrupted sleep(rest to your brain) is much necessary. 

PLEASE NOTE THAT AN AFTERNOON NAP OF 45 TO 60 MINUTES IS REFRESHING AND HELPS IN KEEPING ATTACKS AT BAY. I MEAN REGULAR DAILY AFTERNOON NAPS.

Please keep on taking on your medicines and try this regime with atleast 6-7 hours sleep at night.

You may add some vitamins and calcium at intervals to you regime.

May God bless you

Raj