i was diagnosed with epilepsy aged 8. I had tonic clonic seizures, complex partial and myoclonic seizures. I have been seizure free on medication for several years now. A large proportion of my seizures occured during sleep. I reduced my meds several years ago with the help of my neurologist as i was keen to get pregnant. Lately i have been wakening feeling extremely groggy and tired which lasts throughout the day and my body aches when i waken. I feel some days like i have been hit by a bus. Is it possible that my seizures are returning whilst i am sleeping. Hubby says at times i make funny noises with my mouth and seem very restless. He has never seen a seizure.
I had intractable complex partial and secondary generalized tonic clonic seizures for 13 years, helped only by surgery (had left temporal lobectomy 3.5 yrs ago, also had a brain tumor removed.) Currently I have auras fairly frequently though. A lot, but not all, of my seizures occured at night as well. When I woke up, I also felt groggy, with aches and pains all over my body. I also had bruises, and bleeding as well (when I was in college, I would wake up my next door neighbors at times from all the banging noises I made on the wall!). My mother told me I had a lot of "funny noises" with my mouth as well, kind of like gurgling, and was impossible to wake up after a seizure. Often times I bit my tongue (am currently 31, had intractable ep. from 14-27) during the larger sz. Do you also have that symptom when you wake up? I would not be surprised if your seizures have unfortunately returned, perhaps also a result of alterning your medications. I wish you good luck, though--I hope you are able to find some answers.
You may indeed be having seizures while asleep. As you probably know, reducing the frequency/dose of a seizure med leads to an increased risk of having seizures while your body adjusts to the change. However, awaking feeling groggy and stiff can be a result of many things, none necessarily related to epilepsy.
I suggest talking to the physician managing your condition medication. A sleep study may prove useful, or a 24-hour video EEG (in a hospital) or a 72-hour ambulatory EEG. If your seizures are well-controlled, then seeing another physician to explore what is behind the fatigue and aches would be advisable.
Hope you can get through this and become pregnant.
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