[SaraEve]

hi everyone!

this is my first post. i was diagnosed with epilepsy in 2003, had a partial occipital lobectomy in 2005 and finally we decided to go ahead with the VNS implant. right now i am at 125 milliamps and i still do not feel as if it is making any difference expect on my voice, which is quite a pain considering i am a slam poet and it does hinder my performance. is there anyone here with a successful VNS story, and how many milliamps did you have to get to before it was considered therapeutic? thanks and have an amazing day!

[Porkette]

Hi Sara,

Welcome to the forum! I haven't tried the VNS but I did have 2 brain surgeries to help reduce my sz. If I may ask to you or anyone around you use a cell phone? The reason why I'm asking is because sometimes I person can be cell phone sensitive which means if a person as far as 100 ft. from you is using a cell phone it can trigger sz. for a person. This has happened to me when I'm at work or in stores and people are using cell phones. Also you might be photosensitive since your sz. are coming from the occipital lobe. I had this problem before my surgery and they found out that certain colors I would see would trigger sz. for me. Talk to your Dr. and ask them to do a special e.e.g. where they flash different color lights one at a time and by doing this they can find out if certain colors are causing sz. for you. I found out that florscent green, bright white, and amber were the 3 colors that triggered sz. for me. I'm glad to hear you are into poetry I've been writing since I was 12 or 13 yrs. old which was many yrs. ago.

Love people not things
Use Things not people.

Here's wishing you well and May God Bless You!

Sue

[SaraEve]

thank you so much Sue! that is something that i am going to take up with my epileptologist the next time i see him! you are amazing and i wish you nothing but good health!

[Porkette]

Hi Sara,

My Epileptologist told me that a study was done and they found that people who have epilepsy are good writers and also very good in the music field. I love both music and writing.
I did want to tell you that you might want to start taking vitamin B12 once a day 1000 mcg. and it may help reduce or stop your sz. Vitamin B12 helps calm the nerves and in turn reduces sz. it has done wonders for me.

Another thing you might want to tell your Epileptologist is how yawning helps cool the brain. I was in a medical study with a neurobiologist who works with people who have MS and epilepsy. He asked me to keep track of each time I yawned every day and write down what time I yawned, and I was to take my temperature every day at the same time and each time after I had a sz. He found that the days that I had sz. my body temperature would be higher even before I had any sz. and I was yawning less on those days. In the 2nd part of the study he told me to put a cold washcloth on my face and neck each time when I got a warning I was going to have a sz. and sure enough this stopped the sz. What happened is the cold water from the washcloth cooled the neurons down in my brain and stopped the sz. I was amazed and I've been doing this for over a yr. now and I've had 96 fewer sz. this yr. compared to last yr. at this time. Give it a try it you want and see how it works. I wish you the best and May God Bless You!

Sue

[Darlene]

Hi Sara

Hello and welcome to the group of loving people. I do have a VNS, which I received in 2003. It help me out some but not as much as I had hoped for. Some say the VNS will only have to get the battery replace, well I am not going to do it. It still is running but I will have it turned off. In 2003 I had surgery and sense then have not had a spell.

Sue gave you some good advice to carry along with. Do keep away from bright flashing lights. This had really bother me cause I had to stay away from fireworks.

My prayers and thoughts are with you.

Darlene