Looking for support
 

Last week I was in and out of ERs, hospitals, and doctor offices. I had been turned away, left with not answers, and then finally told I was having seizures by a neurologist who was paying attention. No one quite knows yet what it causing them or what exactly I have. My family is freaking out and I seem to be the only one who is staying calm and seeking answers. I was not put on any seizure medication because they do not know yet if it could be epilepsy or what. Im not sure what to think of it all or why the doctors have always been so quick to turn me away. After almost two years Ive finally been told what is going on with me to a short extent. Im supposed to see a different neurologist in April to try to rule out epilepsy. They think it could be that or it could be a type of nonepilectic seizure brought on by stress or extreme emotional upset.

Im only 23. I have a 2 year old son. I just want to know whats going on. During the last seizure I had I blacked out and stopped breathing....twice. Im scared to death that this could kill me before I reach my answers. I dont want my child to be without a mother. Im so confused and being so strong for my family but at the same time I need someone to talk to that is outside of the family circle. :confused:

Hi ZandersMommy,

Welcome to the forum! What you need to do is ask the neurologist you see to do an e.e.g. along with an MRI, CT scan and a SPECT or PET scan these tests will show what's going on in your brain and if certain things like sounds or different color light is triggering seizures (sz.).

I've had epilepsy for 42 yrs. now and had two brain surgeries to reduce my sz. Over the yrs. seeing many different neurologist I found I made out better seeing an Epileptologist at an Epilepsy Center. These Drs. specialize in Epilepsy and know how to treat it as well as pinpoint the cause of the epilepsy.

I have learned that lack of sleeps, stress, lack of oxygen, difficulty at birth, drug or alcohol abuse, a bad scare, brain tumors, MS, or family genes are the main things that can cause epilepsy.

Start taking vitamin B12 1000 mcg. once a day, cut back on caffeine, carbs and starch foods and stay away with anything that has nutra sweet in it like diet soda. Get a calendar and write down any time you may have a sz. write down what time it happened along with a description also write down when you start and stop your monthly cycle because often hormonal changes each month will trigger sz. for some people. By writing things down the time you had the sz. and the type of sz. your Dr. may see a pattern in your sz. which can be a big help to you and the Dr. If you want to get more info. about epilepsy or find Drs. in your area call the Epilepsy Foundation of America at 1-800-332-1000 and they can help you our also check out epilepsyfoundation.org this has peoples questions along with types of sz. and much more. Here's wishing you the best of luck and May God Bless You!

Sue

Nice to meet you!!