[questioner]

This is my first post. Hope to get some info.
My spouse began having sz in his mid 50s he is now late 60s. He is fairly well controlled on many anti sz meds but has occasional staring episodes, been over a yr now.He is amnesic to the sz. Early on he had all the tests,MRI,CAT,EEG etc with no known cause. I know we should feel lucky his sz are so infrequent but driving is the issue. Can driving be a trigger for a sz? not the lights - it has happened more in the daylight. Bcs of my fear re him having a sz while driving he does not drive now. However, I have always had vision problems and driving will at some point be too difficult for me. Would he qualify for VNS, has it been helpful in allowing him to drive. Could he just activate it for driving and remain on the meds? We're in GA, would anyone recommend a Dr /hospital they feel good about. Should he have any further eval to see if a reason can be identified?
Wish I'd found this site 15yrs ago. The sz never get easier.

[Porkette]

Hi questioner,

Welcome to the forum! I looked into getting a VNS a few yrs. ago but I found out that I would have to change the batteries every 3-6 yrs. so I said forget it. The best thing for your husband to do is to go and see an Epileptologist (Dr. specialzing in epilepsy) you can usually find them at an Epilepsy Center which are often at university hospitals. You would have to have your family Dr. refer you to an Epileptologist. I've had a lot of wonderful help with the Epileptologists I've seen over the yrs. I've had sz. for 39 yrs. absence (petit mal), complex partial, and simple parital sz. One thing that I found out that has been a great help is taking vitamin B12 1000 mcg. once a day and cut back on the starch foods and carbs because these foods are also known to trigger sz. for many people. There's a special diet known as the ketogenic diet and this diet helps control a persons sz. by stopping them or reducing them. I've also found that diet sodas or anything with nutra sweet will trigger sz. for me because nutra sweet causes more electrical activity in the brain.
Each state is different in regards to the driving law and epilepsy I live in Central N.Y. and a person has to go sz. free for 1 yr. and have a Drs. written statement that it's safe to drive. I've never been able to drive in my life and I would hate to see how much the auto ins. would be for me if I could drive. There is a possibility that your husband may be photosensity and that means certain colors can trigger sz. for him. I say this because he's having sz. during the day time and it might be to bright for him when he's outside. The best way to find out if he's photosensitive is to do a special e.e.g. where they will flash different color lights one at a time and by doing this they can find out if certain colors or brightness can be causing the sz. Also if you haven't started tell your husband to write down each time he has a sz. on a calander write down what time the sz. happened along with a description of the sz. by doing this the neuro or Epi (Epileptologist) can often see a pattern in a persons sz. as to what days of the month and what time of day or night the person has the most sz. My best advice to you is to see an Epileptologist and get info. about the VNS before you try anything. Take my word the Epileptologist will know much more than most neuros do and they won't be pushing sz. meds either. I wish you and your husband the best of luck and May God Bless the Both of You!

Sue

[Darlene]

Hello and welcome to NeuroTalk. Happy to see you have come to be with us.

I will agree with Sue in what she has told you. I have a VNS, which I got back in 2003. Some what it has help me out. Yes the battery will last for at least 6 years and it will have to be replaced. For the firat few years it was good for me then my seizures started coming back. I was never seizure free, but I was down to about 2 or 3 a month which were lasting about 25 seconds, but was always laying down to sleep for a while. The battery is still working, so when it runs out I am not going to replace it, just turn it off.

One thing I have done all these years is when I am in the theater for a movie, I will shut and turn my face when you have flashing lights.

On the driving, it takes your doctor to summit it into the state. I am like Sue I have never driven in my life. I was 10 when seizures started and now in my 50's. I can say that last December (2009), I was given surgery and I have been blessed with no seizure since. Although, My own want is to wait till next December to get my license.

You are in my thoughts and prayers.

Again welcome, looking forward to seeing you around.

Darlene

[shawn33]

Hi there, welcome aboard. Sorry I'm responding late. I had the VNS for 11 years and it didn't do a damn thing for me. But I knew a few patients that it had their seizures under total control. As for me I had to have the battery surgery every 3 to 4 years, and once every 2 and a half years to 3 years I had to have a surgery on the vagal nerve. the VNS causes scarring on the nerve. It makes it harder for the nerve to be stimulated. So the surgery was to remove the scar tissue and make the nerve raw again so it could be stimulated 100% again. I have the same seizure and him, the absence seizure. Now I'm in a FDA medical research study for the RNS. That's also made by Neuropace. This is a computer chip placed under the scalp, and the wires are implanted directly into the areas of the brain where the seizures come from. For me it's the left temporal lobe. The split second the Responsive NeuroStimulator (RNS) detects ANY abnormal electrical activity. It does a deep brain stimulation. This has helped a bunch of people become seizure free. For me it's helped me moderately well, ALOT more than the VNS ever did. Now during the confusion after the staring spell, I can think my way through it some and not do some stupid things. I know to go and ask a person about if I should do it or not. Some of the seizures it stops them in a split second and I just don't have them. My last epileptologist is a world renowned doctor, I wish I was still seeing him. He told me in the past that if any of my friends neurologist ever have a question they can call him. He's Dr. Christopher DeGiogio. He's a Professor and has a private practice at the University of California Los Angeles (UCLA). Also the VNS, it has the side affects of a horse voice when it's on, and makes it hard for you to breath if you're active and trying to catch your breath. So if he'll be playing a sport or exercising. He'll have to have his magnet with him, or just strapped on top of the VNS. That's also has to have it strapped on his chest if he's in a plane.
Sincerely
Shawn

Originally Posted by questioner

This is my first post. Hope to get some info.
My spouse began having sz in his mid 50s he is now late 60s. He is fairly well controlled on many anti sz meds but has occasional staring episodes, been over a yr now.He is amnesic to the sz. Early on he had all the tests,MRI,CAT,EEG etc with no known cause. I know we should feel lucky his sz are so infrequent but driving is the issue. Can driving be a trigger for a sz? not the lights - it has happened more in the daylight. Bcs of my fear re him having a sz while driving he does not drive now. However, I have always had vision problems and driving will at some point be too difficult for me. Would he qualify for VNS, has it been helpful in allowing him to drive. Could he just activate it for driving and remain on the meds? We're in GA, would anyone recommend a Dr /hospital they feel good about. Should he have any further eval to see if a reason can be identified?
Wish I'd found this site 15yrs ago. The sz never get easier.

[questioner]

Thanks for the input, its very nice to have some feedback from those going thru this. My spouses are very infrequent with the meds, maybe 6mos to a yr but when he has driven (daylight hrs) it seems to trigger a seizure or maybe just conincidence. Has anyone with a later in life onset experience driving as a trigger?

[Porkette]

Hi questioner,

I've never been able to drive since I have never been able to go one yr. without a sz. but there's a possibility that stress or being photosensitive could be triggering the sz. for your spouse. Stress and lack of sleep are the two big things that can trigger sz. for a person. To find out if your spouse is photosensitive the neuro. will have to order a special e.e.g. to be done where they will flash different color strobe lights one at a time during the test and by doing this they can tell if certain colors or brightness will trigger a sz. for a person. I found out that florescent green, amber, and bright white like the sun shining on the snow will trigger sz. for me when they did this test. Here's wishing you and your spouse only the best and May God Bless the Both of You!

Sue

[shawn33]

I know the seizure can happen just randomly. But do his seizures Happen every time there is a little flash of light? If so then he's photo sensative, and any flash of light will start up a seizure. My barbers wife started to have epilepsy when she was 75. What caused her's was a car accident, she went head first through the windshield. The truamatic hit to the head caused scarring on the brain.

Originally Posted by questioner

Thanks for the input, its very nice to have some feedback from those going thru this. My spouses are very infrequent with the meds, maybe 6mos to a yr but when he has driven (daylight hrs) it seems to trigger a seizure or maybe just conincidence. Has anyone with a later in life onset experience driving as a trigger?