Helpless

Diseases & Conditions Epilepsy
1
Hello Eveyone!
   I was wondering if anyone had any suggestions.  I have had Epilepsy for about 26 years now.  After trying several medications, it seems that nothing has worked.  I am now taking Topamax and Tegretol.  My seizures occur around my mentrual cycle and no matter how my doctor changes the dosage of my meds, my seizures keep occuring.  I have even taken hormones and a diuretic.  Nothing seems to work.  I now feel helpless.  At times I feel like giving up.  At this point, my neurologist is thinking about sending me to an epileptologist.  I do not know what to do.  Any suggestions?
2

Hi Paojami-

Welcome to HW.  What type of seizures do you have?  Do you know where the seizures originate?   I have had epilepsy for almost 25 years and can identify with your feelings of hopelessness.  The first drug I was on was Tegretol, but I couldn't stay on it due to a drug rash.  Like most people, I have been on various combinations of drugs in the attempt to control seizures.  Topamax helped me a lot, but the side effects were so horrible, I practically begged my neurologist to get me off it.  Although the meds helped, the seizures were never completely under control.

Hopefully MandiAnn will see your post. She has the same type of hormone-sensitive epilepsy.  I'm sure she will check in soon.  My seizures were always much more active during the start of my menses and seemed to respond somewhat to hormone treatment.

Although I really liked my neurologist, I was really ready to move on to an epileptologist.  An epilepsy center approached my problem from a different perspective, and I eventual had brain surgery this summer. It was the best thing I ever did.  I still have some problems like headaches and side effects from the surgery,  but so what?  Even if I feel bad sometimes, I go out every chance I get now.   Getting out of the house is the best therapy for  healing.                  

Hang in there.  I always think about my kids and the people that love me - that's what keeps me going.     Don't ever give up Hope,   HUGS,  Glenda   :-)

 

 

 

complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d

3

Thanks for the reply Glenda!

   I do not know exactly where my seizures originate.  I do know that they are complex partial. My EEG's and MRI's always show normal results!!! I am frustrated, because I want to know at least know why I am going through this.  Anyway, your reply helped.  At least I know what to think.  I will most likely go to an epileptologist next, and see what happens.

    Also, I am happy to know that you rely on your kids.  :-)   Hope to hear from you soon.

                           Take care.

                                         Paojami

4

Hi Paojami-

My very first EEG I had a seizure, but then my EEG's afterwards were always normal.  It wasn't until I decided to start my presurgical evaluation that I had a video EEG and had a seizure with the video camera looking right at me!   I always wanted to know what I looked like when I had a seizure, so my doctor and I looked at the video together so I could see it for myself. 

I never had much luck with any of the meds I was put on.  They all helped to reduce the seizures, but not entirely eliminate them.  The epileptologist said I had less than a 5% chance of ever becoming seizure-free with medication, but with surgery I had at least a 60-70% chance.   It wasn't a sure thing, but a lot better than 5%!  So, here I am... almost 5 months since the surgery.  No seizures so far...got my fingers crossed!

It is frustrating, for sure.  I think it's pretty common for EEGs to be normal.   Seeing an epileptologist may give you some answers you've been looking for.   At the VERY least, you'll get another opinion.    

HUGS,   Glenda :-)

 

complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d