Partial epilepsy - atypical

Dear Doctor,
I'm an Italian woman aged 33. 5 months ago I had a seizure that left me with a dystonia in the face. Then things got worst with continuous seizures lasting for hours : the muscles of my face went up and down, like in a series from right to left. I also felt contractions in my arms and feet. I had a permanent headache that nothing could relieve.
Partial epilepsy was diagnosed at EEG, and left hippocampal sclerosis. I was put under Valium and Depakine for 2 days. Relief, at last! But Depakine was abandoned due to polykystic ovaries and I'm now under Tegretol. The seizures persisted and from 600 mg a day, I had 800, 1000 and now 1200 mg. Symptoms were similar, and I felt as if my hand was under aenesthesy. Sometimes I felt vertiginous (very rapid rotation inside my body) with vomiting. My neuro asked for EEG video recording : I had no seizure but interictal independent discharges (spikes) in the left and right temporal lobes were evidenced. His conclusion for now is atypical partial epilepsy and he would like to renew the recording.
I want to add something to this (I'm not sure my neurologist takes this into account). For about 10 years, I've been feeling very bad - at wakeup (no strength, dizzyness, headache), - and 15-20 times a year : seizures that begin with drowsiness, loss of tonus, a sensation of nausea that goes up until my whole chest and neck feel oppressed and I'm craving for air, my heartbeat goes up and my words don't come out. Inconsciousness follows. I don't know afterwards if I've been sleeping.
Please let me know what is your opinion. Mariann

[CCF-Neuro-M.D.-CS]

The last spell you have described could be consistent with a seizure. Perhaps a more prolonged video/EEG recording to capture a spell would be helpful. You have tried a few medications, but there are many you have not used, such as lamotrogine, oxcarbazepine, Keppra, and Topamax to name a few. You could discuss these with your doctor. The symptoms upon awakening due not sound like a seizure. If you have concerns perhaps seeing a specialist at an academic center would be reasonable. Good luck.

[maria1234]

Dear Doctor,

Many thanks for your answer. In the meantime, tegretol was raised and I'm now under 700 mg twice a day.
In fact I was first diagnosed with rolandic epilepsy based upon EEG findings, and in fact, my symptoms are exactly those of RE (also with numbness, early-morning seizures, and so on). But the second neuro I saw does not agree. He says my motor symptoms (essentially face movements, but also arm-hand and leg-foot, speech arrest) do not match with eeg abnormalities (interictal : bitemporal left and right independent spikes) and IRM (hippocampal sclerosis). Have you ever heard about rolandic epilepsy with adult onset :  I should also mention frequent seizures in the catamenial period. Did I mention I had polykystic ovaries? Is it relevant?

I'll follow your advise and see somebody at an academic center.
Maybe you know a prominent specialist in Belgium or France you would encourage me to see.

Best Regards

Marianna

[maria1234]

Dear Doctor,

Many thanks for your answer. In the meantime, Tegretol was raised and I'm now under 700 mg twice a day.
In fact I was first diagnosed with rolandic epilepsy based upon EEG findings and symptoms, and in fact, the latter are exactly those of RE (also with numbness, early-morning seizures, and so on). But the second neuro I saw does not agree. He says my motor symptoms (essentially face movements, but also arm-hand and leg-foot, speech arrest) do not match with eeg abnormalities (interictal : bitemporal left and right independent spikes, T3 field) and RMI (hippocampal sclerosis). Have you ever heard about rolandic epilepsy with adult onset :  I should also mention frequent seizures in the catamenial period. Did I mention I had polykystic ovaries? Is it relevant?

I'll follow your advise and see somebody at an academic center.
Maybe you know a prominent specialist in Belgium or France you would encourage me to see.

Best Regards

Marianna