It sounds like you have been through quite a bit, and I am very sorry to hear that! Before I get started, I just wanted to say welcome to our community and feel free to post all you like and as many questions as you have stored up. I'm sure you will notice in time that we have many people here with all types of seizures, and full of information to share.

Aside from the hysterectomy part, the types of sensations you have seem to be similar to mine when I have my cycle. They did not show up until this year (I'm 29). I'd assumed I had lost my mind mainly because everything I read stated seizures typically do not hurt unless in the event(s) you injure yourself.

It wasn't until I had an EEG which displayed my seizure activity in my Parietal Lobe. These sort of 'bounce' off of my Occipital Lobe which is why my sensations were so bizarre. I'd have pain, and temporary paralysis (while remaining fully conscious and aware). My pain would be like pins and needles and then shift into an electrical shock type of pain. The numbness normally came before any pain (so in order, numbness/tingling - pins/needles - shocking). During this 'event' my vision would blur, and objects appear to vanish, have halos, etc. Sometimes I lost my vision completely. These events lasted up to an hour at times and ended in a GM seizure. I always woke up much later, and extremely exhausted.

While I know those two lobes caused the sensations, those seizures only came one day before my period started - every single time. I do have 'normal' seizures (complex partial; GM) randomly, but these I always know when they are coming and these are the only painful types.

While some things vary between them along with the fact you had the surgery, a serious hormone imbalance could very well be a culprit here. But I could be wrong. What you should do, if you haven't, is get an EEG done (Make sure they scan you for at least 30 minutes to an hour, and that you are sleep deprived and hungry).

You should get your hormone levels checked, as well as other things (B12, and so on). I'd suggest going to an Immunologist for this so they can do proper and full bloodwork.

So, once you have checked hormones and then your other levels (vitamins and such) along with having an EEG, you should contact an Epileptologist. Explain to them you are frustrated and would like a resolution to improve your quality of life. If your Neurologist won't refer you, ask your Primary Care Physician to do it (they can).

Was your father diagnoses with Epilepsy, or does he have a tumor or any type of abnormality causing his seizures? (Sorry if I missed it and you said it, my short term memory isn't all that impressive).

Anyway, sorry for babbling. I wish you the best of luck in finding answers and please keep in touch and keep us updated.

*Hugs*

Ellie