Just got the Dx
 

So for the last 7 years I have been going to the doc trying to find out what the H is going on with me. Finally the other day I got a dx of epilepsy, specifically from my temporal lobe. But my neurologist even told me he's not convinced it's really epilepsy even though he found 2 sharp waves from my temporal lobe during an EEG.

I have had multiple MRIs, CT scans, X-rays etc.... with nothing found until my EEG. I don't understand why he "isn't convinced"? He said that my symptoms don't necessarily "match up" with epilepsy. But I was under the impression that there were over 40 types of seizures so I find it hard to believe that just because mine aren't typical, that means it's not correct?

This is the process of what happens: I feel really lightheaded, almost like I'm drunk. Usually this comes along with a ringing or high pitched noise in my ear. Then I feel a tingling throughout my head and neck which sometimes spreads over my body. I typically lose my vision completely and it goes totally black. I stay conscious the whole time but feel really surreal or confused. I usually forget what I was just thinking or talking about. This whole process lasts less than a minute. Usually when I feel it coming on I grab something or sit down so I don't fall but I have completely blacked out and fallen and also lost my grip and dropped a glass breaking it. Afterwards I either have a headache or tremors or both. Also, I have always been told that, while sleeping, I say and do very nonsensical things or will just sit up straight with my eyes wide open for maybe 30 seconds, then lay down and go back to sleep.

To others on here who are more experienced with epilepsy, does this really not fit the "profile" of epilepsy?

Hi salukgirl,

Welcome to the forum! This sure sounds like you are having possilbly absence (petit mal) along with aura seizures also known as simple partial seizures. I've had epilepsy since 1972 and just like you it's temporal lobe epilepsy. My seizures start on the right temporal lobe. I had surgery done to help reduce the seizures but when my neurosurgeon cut into me they found that 2 more areas were causing seizures that not a single test would show and this may be what's going on with you. The area(s) that are causing your seizures may be to deep in your brain for any tests to show anything.
My advice to you is to see an Epileptologist (Dr. specializing in epilepsy) You can usually find these Drs. at University Hospitals where they have an Epilepy Center. I've seen many neurologist over the yrs. but I've gotten the most help from an Epileptolgist because they know more about epilepsy and how to handle it. Plus they have always had me on fewer seizure meds know as AED's Anti Epileptic Drugs. I will tell you to stay away from anything with nutra sweet in it like diet soda because nutra sweet (aspartame) causes more electrical activity in the brain which can trigger seizures. Also stay away from cell phones my Dr. told me that is one of the biggest problems today that are causing seizures for people. Cut back on the carbs. and starch foods and eat foods high in fat this is known as the ketogenic diet and it does wonders reducing and stopping seizures for many people it's very similar to the atkins diet. You might want to start keeping a journal and keep record on a calendar of each time you have a seizure, write down what time the seizure happened and give a discription of the seizure also make sure you put down if there's a low pressure in the weather because that can often cause seizure for people. Be sure to write on the calendar when you start and stop your monthly period and take note if you are sick because often people will have seizures if they are sick with a cold or a virus. I found taking vitamin B12 1000 mcg. once a day a big help reducing my seizures the B12 calms the nervous system down. If you are around a lot of bright light or flashing light like strobe lights and you have a seizure you may be photosentive and that means certain bright lights will cause seizures the same thing can happen for some people when they hear certain sound and this is known as audio seizures. I wish you the best of luck and May God Bless You!

Sue

Welcome aboard,

You will fine here a get number of caring ones here to assist you as they can.

I have had epilepsy for years, I finally found a neuro that was willing to help me a few years back. In todays a person in your's and my condition to listen to our condition. If I was in your place I would see another neuro/epileptologist that would liston to you and give you all the time you need. Like Sue said Epilepy Center are a good way to get into. I was lucky to find one in Dallas Texas and ended up having surgery and since then I have not had a seizure since then (December 2009).

When you are out riding in night traffic, wearing a pair of sunglasses will assist you in flashing lights. One thing that would get to me after one is that I would feel so sleepy. When I would lay down I may sleep only 30 minutes and it would feel like 2 hours, but still was draggy for awhile.

I hope I have been some assistance to you. My thoughts and prayers are with you. Please keep us up to date.

Darlene :hug: