Hi,

It appears you feel good about your neuro team.

Have you talked to the neurologists about the continued episodes?
If Lamictal has helped, it's possible an adjustment in dose may also help, or your neurologist might want to try a different medication?

You have described experiences similar to experiences I have heard others experience/describe, they are also diagnosed with simple partial seizure activity.

This territory is always a bit difficult to clearly diagnose. People have some difficulty in clearly describing their experiences and each person has some different, though possibly similar, types of experiences. It can be difficult or impossible to clearly catch this activity on EEGs, etc. (You know all of this.)

You are asking: "PLEASE HELP."

Are you in distress with these experiences, even though they are less intense with the Lamictal?

Do you feel you are misdiagnosed?

Would a second opinion from a neurologist feel helpful to you?

I hope you find the answers you are looking for and achieve relief asap.

Warmly,
DejaVu

Hi pk,

I've had simple partial sz. for many yrs. and what you are describing sounds like this is what may be happening. I start to see colors in my eyes and get a nervous feeling in my stomach and once in awhile I will smell weird odors like natural gas and deviled eggs. I learned that the minute I start to have a simple partial sz. to tighten up all the muscle in my body and make my hands into tight fists if you do this fast enough it will stop the sz.

You should have your family Dr. refer you to see a Epilepleptologist who is a Dr. that specializes in epilepsy. They know how to treat epilepsy with the least amount of meds, pinpoint the cause of the sz. and help a person become sz. free in many cases.

In the meantime cut back on carbs, starch foods, and nutra sweet these can often trigger sz. for many people. Try taking vitamin B12 1000 mcg. once a day I have found the vitamin B12 helps reduce my sz. and calms the nerves.
I wish you the best of luck and May God Bless You!

Sue

Well they are an amazing team I have and they said they want to exhaust all options before sending me to a seizure specialist or the mayo or Cleveland clinic

Yes the neurology team is awesome and the lamictal has helped and we just went up to 400mg and it seems every time we move up the symptoms come back very faintly then disappear so I'm hoping they do again:-/ I was reaching out for help Bc it seems no one experiences the same symptoms and it's very stressful going through this everyday and it's worse when you see improvement and then Bammm! Here it comes again:-/. Right now they are convinced it's simple partial seizures but not completely 100% confident. I don't get déjà Vu, no weird smells, etc...just a really weird emotional pain that starts in my throat and moves up to temples and I get this stinging sensation where my eyes cringe buttttt my eyes don't physically sting if that makes sense? And my hands tremble but then I can have a continuous type aura feeling in my throat that's faint and last hours:-/ no fun my friend no fun