Thank you for submitting your question.
I will answer your concerns to the best of my abilities, but please be informed that I am unable to offer a diagnosis based on your history and list of symptoms.
I am limited in not having the opportunity to perform a full neurologic examination on you, nor am I able to review the pertinent imaging.
This is solely for educational purposes and should in no way be a substitute for a formal evaluation by a certified physician.
Before I answer your questions, please allow me to offer a brief educational segment about nonrestorative sleep.
As you know, many people suffer from different forms of sleep disorders.
Nonrestorative sleep is often characterized by tiredness, lack of concentration, irritability and negative influences on working performances despite having enough sleeping time.
The causes of nonrestorative sleep vary and include primary sleep disorders, such as sleep apnea and periodic limb movement disorder, while others are due to disorders that may result in poor sleep, such as chronic fatigue syndrome or depression.
Regardless of the exact cause, the consequences can be extremely frustrating for the patient.
Based on your information, it appears that you have taken all the right steps to investigate the cause of your symptoms.
You have undergone sleep studies, EEG’s (even a prolonged EEG with video monitoring) and trials of different types of medications.
It appears that all the tests have been inconclusive and not congruent with one particular diagnosis.
What complicates your picture from others is that you also have underlying epilepsy.
Epilepsy is a complicated diagnosis and you of all people know that it can transform and manifest differently throughout one’s life.
I hope that you have formed a good relationship with your epilepsy specialist.
My suspicion is that your symptoms are not nocturnal seizures but rather a sleep disorder.
This is based on the results of the multiple studies you have done which did not capture anything to suggest nocturnal seizing.
You did mention that you had one EEG which was abnormal and showed some spikes, but a lot of patients with underlying epilepsy have abnormalities that are considered to be their baseline.
The fact that you responded well to medications like Remeron also support nonrestorative sleep rather than nocturnal seizures.
A lot of AED’s like Lamictal, Neurontin and Klonopin are used for both epilepsy and sleep disorders through different mechanisms so your clinical response to these medications don’t really argue for either diagnosis.
I really don’t have a definitive way to resolve the disparity.
We see this dilemna occur often in our clinics and we usually continue to try different medications and monitor the patient with routine EEG’s and neuroimaging.
Our end goal is to offer the patient relief regardless of the cause.
Other medications that you may have not tried and should perhaps discuss with your neurologist are discussed in the following chart I obtained from this helpful website:
All in all, please continue to see your neurologist.
I hope this helps.