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Crunch

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Greetings,
I am new to this community but would like to introduce myself and a little of my journey with epilepsy.

I have had E since 1970. It never stopped me from participating in extra curricular activities, nor was it used to gain special favors. Over the years I have been on a number of different medications, not all have been good for me. What has been the most consistent has been Dilantin.

I was married in 1995, and had been seizure free for about 15 years until 2008. Over the years, the primary seizures I had were absence and tonic clonic. Most recent I had a myoclonic.

Recovery following my seizures are much harder and longer. Following a seizure in January of 2011, we purchased a building for our ministry in April of that year. At that time, there was some renovation that needed to be done. All I was able to do was put a cleaning wheel on my drill and sit on the floor for an hour or hour and a half and I was done for the day.

I couldn't put my finger on what was going on, but would simply tell people my brain wasn't normal. I struggled with short term memory and had no interest talking with anyone including my family. While on lamictal and topamax, I found myself suicidal at times. Those were some very dark days, days I have no interest in returning to.

Prior to my seizures resurfacing in 2008, i was much more out going, and would talk to anyone. This too has changed. I find myself much more reserved and am now in the process of adjusting to a new normal.

There has been a fair amount of criticism from family and friends, which has made this journey that much more lonely.

I recently got plugged into a couple of support groups which has been tremendously helpful. I have been separated from my wife since September and dearly miss my kids and family.

Blessings to you,
Steve
 
Hi Steve,

Welcome to CWE! I have had absence, complex partial and myoclonic seizures over the past 45 yrs. I've had E. and just like you I had a hard time find the correct seizure med until my Epileptologist put me on vimpat and that drug stopped the myoclonic seizures and cut back the absence and complex partial seizures a lot.

I don't know how old you are but sometimes when a person goes through their change it can decrease or increase the seizures.

I have found the short term memory problems that I have has come from both the seizure meds I've been taking all these yrs. along with all the seizures I've had. Also many seizure meds can sometimes make a person feel suicidal at times.

If I may ask to you feel tired a lot of the time? If you do you may want to ask your Dr. to do a sleep study, e.e.g. and e.k.g. on you all at the same time. I had this done and they found I was having seizures in my sleep and I just didn't feel like doing anything but sleep all day and night. Also it could show if you have a sleep disorder like sleep apnea.
I wish you only the best of luck and May God Bless You!

Sue
 
! ! ! ! WELCOME TO CWE Steve ! ! ! !

HEY STEVE,

It's great to see that you have joined CWE! I think you will find many new friends on this site! Feel free to ask any questions you may have. There are many of us on CWE who have had E for many years, just like you, so we totally understand! :clap:
You will find many answers by looking at the many threads that have already taken place. Many times information that was talked about previously is just as good as when it was fresh and new.
You will find people from around the world who are members of CWE so you will learn that E affects people in every society. :e:

acshuuman
 
Greetings Steve, we do welcome you. As I read your post here it directly brought to my mind much of my days, the ups and downs, and my prayers are with you and steps going in a positive direction. Welcome.

GJ
 
Howdy Steve! Make yourself at home. :)
 
Greetings once again. Last monday the 6th I went in for a Birmingham Hip Resurfacing procedure on my left leg. Everything seemed to go in a routine manner. I was planning on being released Tuesday or Wednesday. However, the feeling in my leg has not yet returned. The result of this is I am back in my home with my family. I had been scheduled to have my right hip done in two months, now, the surgeon is not sure we are going to be able to proceed as previously scheduled. I have a follow up appointment with my Epilepsy Dr. at the U of MN this afternoon to recap some findings.
If the only thing going on in my life was my epilepsy, that would almost seem like a breeze. Stress is such a trigger for so many people with their seizures. Trying to get my E under control is my primary concern, but I can't allow that to stop the rest of my life. I am glad to have a Father in Heaven who has crafted as He would have me. I know He has not made a mistake allowing me or any other to have epilepsy. Consider Shadrach, Meshach and Abednego when they were thrown into the fiery furnace. God never left them, but was found to be walking with them through the fiery ordeal. Never give up hope.
 
Hope That Hip Heals Quickly!

Crunch,
It's great hear from you! You seem to be in a a mood that keeps your spirit up. People are praying for you so don't let yourself get down.
I know that my E gave me the strength to be able to deal with other of life's struggles in what seemed like a nonchalant way.
Your keeping a calm head will be very beneficial to you in both your experience with E and your rehab from surgery. Keep your head held up high and you will be successful! :clap:

acshuman
 
I on lamac and have very black moods but not sure I can define it to lamactcal as have a lot of things going on in life that do that.The memory is worse thingno one in family understand ho effect me.i put something somewhere and not remember or leave gas stove on it then becomes matter of principle I have to find it or I go out and by Two of everything no one in family understand it a torcher on me that causes black depression.
I would go along with Crunch you should not let E rule everything in life I have other health problems they each have imput how my life is dictated.every so often I say sod it today is mine if I want parachute from plane I will(er that never happened)With in reason you got live life. Apart from religious Bit I would go along with Crunch
 
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