Going back into past is hard
 

I havebeen having to go back into my past to really acknowledge the fact that my seizures have not really ever been controlled even with all the different things I have done to try to get them to be. My folks really wanted to think all would be fine and my epilepsy would not affect my life much. So I tried to believe this along with them. Yet I am still realizing that Refractory epilepsy is hard to get to be controlled.
So I have just found this journey a bit hard to go over again. But I guess it has its purpose. Now I am trying to just move forward, as I will work with creating more positive things I can do to work with this knowledge.

Thanks for listening.

Hi Cedar,
I'm so sorry that your sz. haven't gotten under control but I want you know I understand how you feel. I had my surgeries to reduce my sz. but as time went by my sz. have increased and now I'm having different types of sz. than before.
My family never really accepted me nor did they want to be around me since I got E but I didn't let them stop me. I just told myself that I can do it on my own. For the past 22 yrs. I've been working in public school in Special Ed. as a teacher aide and I've found I can relate to the students a lot better than many of the other staff because I had emotional and physcial problems when I was a kid just like some of my students do today.
I also look at my aunt who has MS and can no longer walk. She doesn't let anything stop her she just keeps going and doesn't let her health stop her which I think is great. My prayers are with you and I hope everything works out for the best. May God Bless You!

Sue

Thanks Porkette, I refuse in many ways to be stopped also. I have done many things and wish my seizures would slow down enough and find a place where I can work where my seizures were not an big issue. The problem is they always seem to be. People freak out. Plus my need for rest afterwards is what seem to be a tough one. I have found my doing gardening and quiet hands on type work is best for me I seem to rarely have seizures when I do this kind of work. as long as I do not do more than a few hours at a time. Which I still do in and this allows me to have ability to create a flexible schedule.
Spring is around the corner so that is fun to look forward to YES?!

Thanks for your thoughts.

{{{Cedar}}}

I hope you keep searching for seizure control in spite of the professional prognosis. There are some alternatives out there the professionals don't generally think about. Best wishes.

Cedar, I have been where you are. No support from family and on my own handling my seizures. They were never controlled either and were refractory. Refractory seizures are the hardest to contol with medication as it seems you are finding out, and if you have tried a few, you get the idea that meds may not ever control them. After more than 35 years of seizures and mind dulling medications that didn't stop my seizures completely, I had surgery 9 years ago. It was the best decision I ever made, and I'd do it again if needed provided I had the same team. I even had my surgery by myself. There are other treatments out there like VNS, but an Epileptologist needs to determine which is best for your case. I do hope you go to a Comprehensive Epilepsy Center and have an Epileptologist examine your case and give his/her opinion re options. I wouldn't give up hope at all. It is a journey but one that may have a better ending. I am now in Grad school. Tattoo

Thanks Tattoo

I have had epilepsy for 39 years and tried a 10 different drugs. Like I said had thought early on my seizures were controlled, but much denial was being played out. Now do work with an epileptologist have for 4 years, actually found out the cause of my seizures after having epilepsy for 35 years which kind of blew me away.
Since have tried 6 of those 10 drugs and am on three yet still have seizures. Also had a VNS implanted and the seizures increased by three fold. so had to have it turned off and eventually removed.
Am not a candidate for brain surgery and a goodthing, as not my thing.
Have even tried non medical alternatives to help and showed little improvement.

So Here I am and just trying to do what I can to accept my situation knowing it could be much worse. Be grateful for all I do and can continue to do.

What is the cause you found out? Maybe you need a different direction in treatment since you know the cause. Also, is your epileptologist one with that certificate on the wall saying he/she has 'completed the Fellowship in Epilepsy or Neurophysiology? If not, he/she is nt an epileptologist but a general neurologist. You may already know this, but too many meds can cause seizures too. Anyway, good luck and continue to search for answers. Tattoo

Cedar, have you tried the LGIT diet, CBT or EEG neurofeedback?