[Oriana]

Hi everyone. I'm new here, and relatively new to seizures. Mainly my seizures began in November of this past year although I had a few several years ago. My doctor has sent me to hospital several times this spring. EEGs, EKGs and MRI's were normal. My seizures are growing worse, in spite of medication (Dilantin 100 mg 3x daily).

These seizures occur mainly at night while I am in bed, although I've had a few at other times. Most often - when I'm fully aware of them - they occur just as I am settling down to sleep. Sometimes I am only dimly aware of them during the night, waking briefly then falling back to sleep. Occasionally they happen when I am waking up. Apparently my limbs shake a lot while I am unconscious, I make strange noises, and, on regaining consciousness I often gasp for breath.

One odd feature is that they frequently happen when I am changing position, for example rolling from my left side to my right. This morning I had a bad episode rolling over onto my back just as I was waking up. Does changing position trigger seizures for anyone else reading these boards who may have night seizures?

It's very frustrating for me right now. No one else I know personally has seizures. As I said, they are getting worse, in spite of the medication. I am in the process of being monitored by a sleep study group but my doctor seems to be at a loss as to what to do with me. I'm afraid to go to bed at night...but I'm exhausted and not getting quality sleep when I finally succumb.

Any help you may provide, I'm grateful. Thank you.

[shezbut]

Hi Oriana,

Sleep is a common time for seizures to hit me, especially in times of high stress.

Personally, I rarely wake immediately following seizures. The few times that I have woken following the tonic clonic, my only way of knowing is when someone tells me. I may feel really tired and weak, but I haven't ever been aware of any jerking motions or frothing at the mouth.

It is possible that you are experiencing non-epileptic seizures due to an unknown source. My epileptologist has told me that many people, both with and without epilepsy, suffer from events which they perceive to be seizures. Tests show no abnormal brain activity during these events though. They are taken seriously by professionals, and not simply thrown to the side.

I hope that your doctor sends you to an epileptologist, to be sure that nothing is being missed in testing and Q's regarding what you personally experience. There are several different Epilepsy Resource Centers in the states. I'm in Minnesota, and many come to Mayo Clinic from all over the world. In California, Stanford University is excellent. San Francisco State is pretty good, as is UCLA. I want to say there's a link that shows Epilepsy Resource Centers, but I'm unsure of how to do computer stuff. (I'm back in 80's on that level, sorry!)

Very best wishes to you!
Shez

[Oriana]

Thank you Shez!

I have both nocturnal episodes of which I'm aware and (as reported by family) episodes of which I'm not aware. Several times my brother heard me making weird noises, came in to check on me, and found me unconscious with shaking limbs. He was unable to bring me around. When I did regain normal focus, I had no memory of the events.

I've also had a few while awake.

The Dilantin doesn't appear to be controlling whatever these are.

I've been thinking of finding an Epilepsy Resource Center somewhere near Chicago. My doctor has had me in hospital a few times for heart and brain tests, but on neither occasion has anyone been able to monitor one of the episodes directly.

I'm currently in the middle of some sleep studies. They are unable to discuss the test results until my doctor talks to me, but they did tell me they found "something."

Again, thank you for your reply. I don't feel so alone in this now. As said, I don't know anyone else with this type of thing.

[shezbut]

((Oriana))

You may want to look into Rush University, in Chicago. There is an epilepsy center team there. I tried to put the link here, but it wouldn't attach.

Hope that you get to see your doc soon for results. Post back to let us know. Best wishes to you!

Shez

[Oriana]

Originally Posted by shezbut

((Oriana))

You may want to look into Rush University, in Chicago. There is an epilepsy center team there. I tried to put the link here, but it wouldn't attach.

Hope that you get to see your doc soon for results. Post back to let us know. Best wishes to you!

Shez

Thank you Shez. I will ask for a referral to the Rush clinic. I appreciate the information.

[bella0809]

There is an epileptologist at Rush who had seizures himself. See if you can get to see him.

1, If the szs are getting worse, why are you still taking the meds?
2, I did have a problem when sleeping on the left side. If I felt a sz coming I would roll over and sometimes stop it,
3 I don't have szs anymore (after 36 years) because I had the surgery, Ask your doc about surgery

[Porkette]

Hi Oriana,
You mentioned that you have sometimes had sz. when you go to bed and then when you wake up and that you are aware of whats going on you may not be having Noctural sz. they may be Myoclonic sz. and that's the type of sz. a person has when they first go to bed and when the first wake up in the morning. This happened to me a few yrs. ago and the sz. led into a tonic clonic sz. (grand mal). I found out that what was causing this was lack of sleep as Shez mentioned and stress. I began taking keppra and the sz. stopped and now I only have absence (petit mal) and simple partial sz. When I had my veeg, and MRI they found that I had bilateral lesions on both the right and left temporal lobe of my brain and that's what was causing my seizures. You might want to try taking vitamin B12 1000 mcg. once a day to help reduce the sz. and be sure that your neuro does a sleep study on you to make sure you don't have sleep apnea. I wish you the best of luck and May God Bless You!

Sue

[Tattoo2]

I had nocturnal seizures a lot. It was prominent early in my epilepsy history. Later I started having simple partials just as I as about fall asleep. Complex Partials during the night would leave me wet in the morning. Later in my history, when I neared surgery time, I started sleep walking and waking up in other parts of the house. I walk with my complex partials anyway. It just started happening during sleep too. To me and my doc, those were all signs of the illness getting worse which means more tissue was misfiing. I had surgry not long after the sleep walking began. I have heard of Rush but do not know anything about the quality of their work. That is important. Maybe some here is a patient of theirs. Tattoo

[shezbut]

Originally Posted by bella0809

There is an epileptologist at Rush who had seizures himself.

Really??? Wow! That's pretty cool. I wonder what kind of seizures he suffers. Hard to believe that he made it through residency.

My regular doctor, internal medicine, told me that she knew a resident with epilepsy (while she was also a resident). That candidate wasn't able to make it through residency due to high stress & low sleep. Which meant no doctorate for him/her.

Shez

[Oriana]

*waves* Hello again. And thanks once more for some excellent answers and comments. I'm taking the medication (Dilantin) because I haven't progressed far with the medical community. My GP had me in hospital for heart and brain tests. I'm now working through sleep apnea tests which should be done next week.

The seizures don't happen just at night. Since they began, they've been predominantly nocturnal but also do happen during the day. I recently had a bad one (described in other thread) early in the evening as I was about to go downstairs. I lost consciousness and fortunately fell backward into my room, not forward downstairs.

To date the seizures have happened: at bedtime, during sleep, at waking, and during the daytime, with nighttime episodes most frequent.

I'm told I "walk" with my feet during sleep. I have restless leg syndrome too.

I'm going to Rush soon. Thank you all for recommending that hospital.