My daughter has been diagnosed with Jeavons Syndrome. We are waiting to see the neurologist and I can find hardly any information on this rare type of epilepsy.
Does not work if doctor doesn’t want read it or believe it
Jeavon syndrome is medicine restiant
@A MyEpilepsyTeam Member
What is :
"Mad diet"?
That's Epilepsy with eyelid myoclonias, or Jeavons syndrome, is an idiopathic generalized epilepsy characterized by the triad of eyelid myoclonia with or without absence seizures, eyelid closure-elicited electroencephalographic (EEG) paroxysms (epileptiform discharges and/or seizures), and photosensitivity.. lots of medical terms.
So eyelid myoclonias are random eye movements usually rolled back into the skull
Eyelid closure is a natural response to this happening but it can be random
Electroencephalographic (EEG) paroxysms (epileptiform discharges and/or seizures) means spikes occur in an EEG, but are not necessarily consistent like someone with epilepsy would have, so another cause, like thyroid issues or neurotransmitters not being uptake by corresponding brain receptors, or being taken randomly.
Photosensitivity is normal with all epileptic and seizure disorder people. Jeavons is not necessarily epilepsy, but has similar symptoms. Only a neurological evaluation with an EEG can root it out, and unfortunately not always. Keppra is a good med for it in high doses, but there are many others that work in tandem to help.
The trick is to have a medical website in which ever search engine Jeavons Syndrome is typed. I googled it and found this article. I hope it helps you out.
z://pubmed.ncbi.nlm.nih.gov/34167046/#:~:text=Epilepsy%20with%20eyelid%%2C%20or,or%20seizures)%2C%20and%20photosensitivity.