Hello,
This is my first post and I'm sure I should probably have posted in the new member forum first but I kinda wanted to get down to business. I have been diagnosed with complex partial for eleven years. I was diagnosed in Texas but moved to Idaho seven years ago. I thought I was able to trigger control my seizures but it turns out I wasn't. The neurologist that I currently have is "skeptical" of my diagnosis but is not ordering any more testing. He is treating with Lamictal on a trial by error mindset. I have had several breakthrough seizures (both tonic clonic and absence) and what they believe is a stroke, but again they are treating without being sure because the CT scan was inconclusive. I live in an area where Neurologist are hard to come by and the few here are in a monopoly clinic associated with a hospital with questionable ethics. The closest other Neurology Clinic is thirty minutes away across state lines. I am extremely frustrated because I feel like the doctors here don't believe my symptoms are real but the doctors that I might want to see are so far away. I am just trying to find out if there is anyone else who has an issue with limited resources and if so, how are you handling it. I feel so alone.

Welcome leisea.

Someone will be along to help.

Hi Leisea,

Welcome to the forum! I've had epilepsy for 42 yrs. I have absence and complex partial sz. (seizures) and it was a hard time finding a good neurologist for me that understood my case. I finally started seeing an Epileptologist which is a Dr. who specializes in epilepsy and that was the best thing I ever did. These Drs. can pinpoint the cause of a persons sz. keep them on the least amount of sz. meds to help control the sz. and if the person is interested they can look into having surgery done to help stop or reduce the sz. You may want to see if you have any big hospitals or University hospitals near you because this is where you will find these Drs. and they work at an Epilepsy Center with a team of Drs. neurosurgeons and neuropsychatrist all of these Drs. work together as a team to find the best treatment for a person. Before I had the surgery I would have 300 or more sz. a yr. both absence and complex partial. Then I was told to cut back on starch food and carbs and that helped reduce my sz. but besides the surgery what really reduced my sz. was taking vitamin B12 1000 mcg. once a day. You may want to give it a try. I did try lamictal and I broke out with a rash after taking it for only 4 days.
To find the correct sz. med for yourself ask the Dr. to do a DNA test on you all they have to do is draw some blood and take a q tip and wipe the inside of your mouth. This will be sent to the lab and they can then see your body chemistry along with the amount of enzymes in your body and this call all be matched up to the correct sz. med for you with the least side effects. I have taken 11 or more sz. meds and then I had the DNA test and they found out I am drug resistant to all sz. meds out on the market as of now so now my Dr. wants to try me on the medical marijuana to see if that will work. Here's wishing you only the best of luck and May God Bless You!

Sue

CT shows different things than MRI, so ask them if that is worth following up with an MRI. Are the doctors across state lines covered by your insurance, 30minutes is worth it for a better doctor. Do you have copies of any of your old records or know significant things about your diagnosis. The current docs may be not good but rechecking a diagnosis can be good, maybe something got missed in Texas, maybe something changed.

leisea,

It is great to have you come and be with us. You will find a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Sue has given you some great advice. I was so lucky I saw an Epileptologist, he had been revered by my neuro. I was able to have surgery and am under great control. Sue told you what occured with lamictal with her, wear it has help me without any side affects. Some medicine works on each of us and not the others. True doctors will find the right medicine for you.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hi Leisea,

One thing that you may want to do is start keeping track of any sz. you have, get a calendar and write down what time you had a sz. along with the type of sz. you had. Then take note if you were sick or under a lot of stress. My Dr. also had me write down when I started and stopped my monthly cycle. By doing this the Dr. may be able to see a pattern in your sz. I always seem to have sz. the first and 3rd week of each month and I always have them in the morning or late afternoon. Here's wishing you the best of luck and May God Bless You!

Sue