Epilepsy & Seizures Support Group

Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...

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Brain & Nervous System
/ Epilepsy & Seizures Support Group

Nocturnal seizures

MaiMai
MaiMai

  I was diagnosed having nocturnal seizures in 2017 after being admitted to the hospital with TIA symptoms. Standard test were ran to determine if I had had a stroke or TIA and test were normal. I then saw a neurologist and an EEG confirmed I had an abnomalty in my electronic brain impulses which indicated seizures, but I had had no known seizures .After questioning me the neurologist concluded that I had nocturnal seizures that manifest differently than epileptic seizure . Mine are very much like what was called night terrors .I woke up crying out and somewhat  disoriented.   Does anyone else have similar symptons and what treatment are you on?  I was on Zonisamide (up to three 250 mg capsules a day). I had horrible headaches and the neurologist kept telling me to keep taking it to see if I could get used to it . Frankly the seizures were easier in the long run to deal with. I weaned myself off it. I went several months without known seizures but beginning to have them again.

Michelef525
Michelef525
I've had epilepsy for 30 years and I'm 38 years old. I've experienced all kinds of seizures tonic clonic petite mal split second seizures and nocturnal seizures. Most of my seizures that I get happen when I'm sleeping. The only way I know I have them is I bite my tongue. I've been on a lot of anti seizure meds over the years. I take lamictal, keppra and vimpat. Vimpat has really help control my seizures during the day. Remember don't ever stop taking anti seizure meds. About 15 years ago I got real angry and flushed all my meds down the toilet. I had break out seizures and found myself in a hospital all alone in an unfamiliar city by myself. That was a wake up call. I know it's frustrating and finding the right combination of drugs takes time. Have faith in your neuro and if you don't get a second opinion. I had participated in Tampa general epilepsy research center long term eeg. My doctor finally got my seizures on videoand that's how my doc found the right drug combo. Talk to your neuro bout long term egg. Good luck
MaiMai
MaiMai
I'm really new to this and I appreciate you sharing. I'm in the process of finding a new neurologist in the Dallas, Tx area. I just want a better understanding of my type of seizures and treatment options. Thank you, again.
Michelef525
Michelef525
No problem.It can be frustrating. Especially if you have multiple types is seizures as I do. And I know it's scary. As scary as it can be just remember you are safest lying down while seizing so it is good that it happens at night. If you ever have any questions I'd be glad to answer. Don't loose faith.
AOKBC
AOKBC
I agree, don't stop your meds. I have nocturnal epilepsy and unless I wake up horribly sore or a chewed tongue, it's hard to know if I've had one. I thought I was fine and took myself off once. I went 2 yrs without one (that I know of), until I had a couple of the worst yet, waking up on the bathroom floor with a concussion and ending up on blood pressure meds to bring it back down after and was in bed for a week, I hardly remember ever waking up. They were bad. For some reason my really bad grand mals I wake up on the bathroom floor. I've moved between so many different meds (Michelef525: Lamictal eww... That had me nauseous and gagging just by thinking of something. Horrible year that was).
Just remember that the medications are better than the effects seizures have on your brain and body.
Khadi
Khadi
I feel for you, so many of the meds for seizures feel worse than the seizures themselves. I think if doctors had to take these meds they would be more careful about how they prescribe them. I have nocturnal seizures and the only thing I take is clonazepam. It is an old seizure drug, often used for anxiety now I think. Anyway, it is a lot less toxic than many of the newer drugs and I don't have any side effects. Neurologists are in the business of prescribing drugs. That is how they are taught to treat epilepsy but it is not the only solution for many people.
There is a great book called "Epilepsy: a new approach" it is my bible. It might be worth it to do some research. Stress, regular sleep, a healthy diet, meditation, bio-feedback...they can all help you control your seizures.
I know there are many people who have to take meds so I don't want to offend anyone with the idea of alternative treatment. But before your body gets used to taking one of these really powerful medications maybe try some other things that have worked for many people.
I am sorry you are going through this, it is really scary sometimes. It helped me a lot when I started doing research. It made me feel like I was taking back control of my body. Good luck xo