new to site and new to having seizure activity
 

Hello I'm new to the site. First of all I do have to mention I do have an arachnoid cyst located on my left temporal lobe that I've had since birth and was found on accident in 2001 due to a car accident. I had my first what the doctors called simple seizure at the end of April. It happen while I was driving to work, it seem like every thing in my vision almost went white and I was in a movie and I couldn't move really and only lasted about 30 seconds, it had scared me enough to the point where I had to pull my car over to the side of the road because I wasn't sure of what was going on then. On that same day at work about 3 or 4 hours later it happened again, this time I got lightheaded with it which lasted a good hour or so nothing happen after that so I figured it had to do with the fact that it had to do with low blood sugar. After telling some boyfriends family members about what happened and the fact that I have the cyst on my brain they wanted me to go get check out by a doctor, that night I went to the small local er where they did a CT scan and said that it did sound like that I had a simple seizure and that it was probably just a one in a lifetime type of deal and nothing to worry about and sent me on my way. That seem fine at the time as it seem I wasn't getting any more of the seizures for about four more days then I got another one, so I went to a bigger hospital so I could figure out what was going. After spending a few hours in the hospital getting a MRI and blood test done the doctors where confused on why all the sudden I'm having these seizures. Since then I've been referred to a neurologist that specializes in seizures and got a 24 hour EEG done and another MRI done which was about 2 weeks ago still waiting on results been trying to contact the neurologist but with no answer yet. Should I be worried that the doctor could be just ignoring me or really busy. I'm getting very antsy on not knowing on what or why I'm getting them did any one else have to wait almost 3 weeks for EEG results just to know whats going on with them

You can probably ask for a copy of the written report , then you can look it over so you can ask the dr better questions if needed at the follow up appt.

Hi dfphillips,

Welcome to the forum! If I were in your place I would call the Dr. and ask what is going on, usually it takes at the most 2 weeks to get an e.e.g. report and MRI report. If the Dr, continues not to let you know what's going on keep calling and take my word they will finally let you know what's going on.

I've had epilepsy for 41 yrs. along with 2 brain surgeries to help reduce my seizures (sz.) I have found seeing an Epileptologist (Dr. specializing in epilepsy) at an Epilepsy Center the best thing I ever did. These Drs. have much more info on epilepsy and how to treat it than any neuro I have ever seen plus I have had to take the least sz. meds while seeing a Epileptologist.

Just like you I have simple partial sz. along with absence and complex partial sz. When I start to have a simple partial sz. I will see colors flashing back and forth in my eyes, get a nervous feeling in my stomach and sometimes hear one word repeated over and over again when nobody is really saying anything. My Dr. told me that the minute I start to have any signs of a simple partial sz. to tighten up all the muscles in my body and make my hands into tight fists by doing this it stops the sz. and it works great. You may want to give it a try if you wish.

If you haven't started to keep track of your sz. get a calendar and write down what time you have a sz. along with a description. By doing this you may see a pattern in your sz. I often have sz. early in the morning or late afternoon on certain days of the month. I also have noticed when I'm sick or a low pressure in the weather is coming in that I have more sz. not to mention hormones changing each month when I had my monthly cycle.

To find the right sz. med for yourself ask your Dr. to do a DNA test on you this will show what sz. med will work the best for you with the least side effects. I had this done only to find out I'm drug resistant to all sz. meds out on the market right now. I do take vitamin B12 1000 mcg. once a day at this has reduced my sz. greatly. Cut back on caffeine, starch foods, and carbs and if you use a cell phone take note if you have a sz. during or after you have used your phone because sometimes a person can be cell phone sensitive meaning the frequency that the cell phone is using can trigger sz. One thing that can really trigger sz. for many people is nutra sweet or any artificial sweetners so be aware of that also. I wish you the best of luck and May God Bless You!

Sue

thanks for the information I am definitively going to try tightening up my muscles next time I feel a seizure come on. I did get a call from the neurology department today and it did show that I did have a couple of seizures that I was not aware of though I have a follow up appointment with the neuro doctor in a week and a half to go over the results of the EEG test.

I have been keeping track of the seizures as I have an IPhone I found an app that can track them along with writing them down on my calender that I have.

I'm on topamax 25 mg right now for my seizures but I think I might need a stronger dose as since I've been on it I've had another seizure. They have also have tried keppra 500mg but that gave me adverse affects to it and the doctor changed that changed it right it away to trileptal 300mg and had a skin reaction to that.

I'll keep you posted on the results of the EEG test when I go see the doctor in a couple of weeks.

Hi dfphillips,

I have taken all of the sz. meds that you have or are taking for my sz. and I found that keppra increased my sz. and Topamax wasn't strong enough even though the Dr. increased the dosage for me it l still had 23 sz. in one month. Just like you I broke out with a rash from the trileptal. If the Dr. tries to put you on lamictal or tegretol you will probably break out with a rash from these drugs also because they are very similar. This is what happened with me after the Dr. tried to change my meds each time I broke out with a rash. I have found that the best meds for me are the older sz med like mysoline, Diamox, and a good one to take is vimpat. This drug is a newer drug and it has reduced my complex partial and simple partial sz. greatly. I wish you the best of luck and May God Bless You!

Sue