I warn you that this post is very long but I feel it is necessary for you to understand where I am at in my life. I have no support, it’s been a long road and I’m scared of the future.
I was diagnosed. 16 yrs. ago. I am now 56 yrs. old. There were many people around me including my husband who thought, I was just doing all this for attention and could stop anytime I wanted. Some still do think this. Sometimes I am even beginning to wonder.
After my diagnosis I have been in and out of the hospital/hookup several times and never had a seizure there, except for one when I had just been unhooked and the intern said she could tell it was not a true one. My outpatient EEG’s have been both positive and negative.
The ultimate validation of epilepsy was 8 yrs. ago, when I was off my meds and had a grid directly on my brain and probes stuck in it. It took three days but then I had 3 seizures in a row which the surgeon said lit up like a Christmas tree. They proceeded to take out my right temporal lobe.
I don’t know whether it is the result of the epilepsy, the surgery or all the terrible side effects of all the different anti-consultants I have had and am now on but I have terrible attributes that I didn’t have before I started suffering from epilepsy.
I graduated college with honors, managed a Health Food Store, became a Certified Nutritionist and was working as a Book-Keeper when life as I knew it ended.
Now I am confused very easily.I, seem unable to think at times, can’t find words and loose thoughts in the middle, have the intellect of a grade-schooler, get lost walking even within a few blocks in my very small hometown, have extremely poor memory, can’t recognize people I know, get really shaky and have extremely poor balance a lot of the time. etc. etc.
My husband gets disgusted with any seizure I have EXPECIALLY if I have it in his presence. I have been told by counselors and Dr’s that I am never going to get well if I don’t divorce him. I still love him and will not do that.
Both of my now grown children had a very difficult childhood. One told me she hated me because all I did was talk about my health. She now has three children 5 and under. She seems to be more reasonable but still gets disgusted if I have a seizure around her and EXPECIALLY IF I TRY TO EXPLAIN OR TALK TO ANYONE ABOUT IT. I AM TERRIFIED FOR MY GRANDCHILDREN TO SEE ONE.
Even though my son grew up watching me is the most caring, compassionate person you will ever know. He says he learned it from me. Of course he doesn’t have to sit and watch them anymore. I resonantly found an old journal. He was young. It had a description of one of my seizures. It broke my heart.
There have been other times I have read that they used to have to pinch me to see if I actually was aware.
I have had every type of seizure; I have gone through several neurologists as they have moved in and out of town. I have been put on every anti-consultant available but have never had my seizures under full control.
I have just been put on Vimpat on top of my Lamictal and for the first time I am wondering that as much as I hate it (its cost and side-effects) it may actually be helping some.
At my last Neurologist appointment, three months ago, my Dr. told me I was having both epileptic and non epileptic seizures (NES). He tried to do it compassionately emphasizing that non epileptic seizures are Real. But he emphasized that I needed counseling and need some support system. I do not have any support system.
I went home and got on the internet. My research said that NES were often caused by repressed memories from a traumatic childhood. Talk about potentially hitting the nail on the head. My childhood was extremely traumatic being raised in a home with a mother who had problems with drug addiction.
Those repressed memories exploded about a month ago when I was out doing some gardening. My husband had moved a rosebush where my mother’s cremated ashes were. I realized that is what I might be digging in them.
My father died of cancer 5 days after I turned 18. He was the only other one to try to deal with my mother. After then it was lef to me.
Around four years ago my mother poured kerosene all over herself and then lit herself on fire. I sat by her side for a day and a half smelling burnt flesh as she was dying. My sister has disowned me many years ago because I dared to have a chronic disease and remind her just too much of our Mother. When it came to this situation both her and my mother’s twin sister backed off and told me to handle it.
After 1 and ½ days I told them to take the tube out of her throat. I don’t remember them doing it. I only remember a few minutes later when I was in a wheelchair being told by a nurse that I had just had a seizure and she was taking me to the E.R.
God blessed me with the lack of memory of the moment of my mother’s death. Since I had a seizure at the time wiped out my memory.
I have been seeing a psychiatrist once a month. (All my ins. will pay for) I have been diagnosed with Anxiety Depressive Disorder for as long back as I can remember.
I have also been on anti depressants and tranquilizers. The anti depressant I am on now is supposed to be one that has only a minuscule chance of causing seizures, unlike most others, but my neurologist and psychiatrist are trying to reduce my dose anyhow.
Boy is this the time to do that when all those repressed memories are flooding back. I have removed all the nick nacks, sweaters made by my mother and anything else from my house, leaving only one thing each from my mother and father. I even threw away pictures. It has actually helped removing some of those things causing subconscious reminders ending up with a possible dissociative disorder.
I am told that the answer is that I must learn how to cope with all this and stress in general. Do they want to step into my shoes and try it?
Since my neurologist thought I should have more counseling on my own I have started seeing an additional counselor out of my own pocket. I don’t know how long that can last.
When I heard what my neurologist told me I have started to feel so guilty. Maybe all of those around me who said I was just doing them for attention and could stop them if I wanted to might be right.
Could I possibly be doing what is suggested by the research to be having or pretending to be having seizures just to keep my disability funds. As it is I pay over $100.00 a month on drugs. It does fill that with a extra that helps me function through needed costs.
I know I shouldn’t but I still feel very guilty as if it is my fault. It eats at me every day. Looking at past E.R. reports they mention long before now that I have both types of seizures.
In the last three months whether through having to deal with long lost memories, extra counseling , my antidepressant being reduced or the Vimpat being added I have, as well as I know, had only one epileptic seizure and three (one right after another) of those flopping around while conscious ones
The other thing my neurologist wished I could do was be in a supportive group. I have no support now, not even support from myself.
Right now I have days when I am reading or working on the computer and my vision goes double, times I am so shaky and off balance I am grabbing for anything I can to hold me up, I am also at times stomping erratically just to walk and telling myself to “Get down on the floor you are going to have a seizure.” My face contorts up sometimes. Does anyone know what is going on? Are these epileptic seizures, side effects or NES’s
I am so nervous and afraid of seeing my neuro the end of this month not knowing what is going to be said and what is going to come next.
I hope the very length of this post or what I have shared will not cause you to write me off as some long winded person you want nothing to do with.
I am turning toward you as sort of my last chance of surviving all of this on a day to day basis for the rest of my life. I am with no support system and I am scared.
I don't know how to do all of this when it comes to working in this support group. Help! and please be patient with me. One thing I like to do is help others when I can.
:hello::hello:
I was diagnosed. 16 yrs. ago. I am now 56 yrs. old. There were many people around me including my husband who thought, I was just doing all this for attention and could stop anytime I wanted. Some still do think this. Sometimes I am even beginning to wonder.
After my diagnosis I have been in and out of the hospital/hookup several times and never had a seizure there, except for one when I had just been unhooked and the intern said she could tell it was not a true one. My outpatient EEG’s have been both positive and negative.
The ultimate validation of epilepsy was 8 yrs. ago, when I was off my meds and had a grid directly on my brain and probes stuck in it. It took three days but then I had 3 seizures in a row which the surgeon said lit up like a Christmas tree. They proceeded to take out my right temporal lobe.
I don’t know whether it is the result of the epilepsy, the surgery or all the terrible side effects of all the different anti-consultants I have had and am now on but I have terrible attributes that I didn’t have before I started suffering from epilepsy.
I graduated college with honors, managed a Health Food Store, became a Certified Nutritionist and was working as a Book-Keeper when life as I knew it ended.
Now I am confused very easily.I, seem unable to think at times, can’t find words and loose thoughts in the middle, have the intellect of a grade-schooler, get lost walking even within a few blocks in my very small hometown, have extremely poor memory, can’t recognize people I know, get really shaky and have extremely poor balance a lot of the time. etc. etc.
My husband gets disgusted with any seizure I have EXPECIALLY if I have it in his presence. I have been told by counselors and Dr’s that I am never going to get well if I don’t divorce him. I still love him and will not do that.
Both of my now grown children had a very difficult childhood. One told me she hated me because all I did was talk about my health. She now has three children 5 and under. She seems to be more reasonable but still gets disgusted if I have a seizure around her and EXPECIALLY IF I TRY TO EXPLAIN OR TALK TO ANYONE ABOUT IT. I AM TERRIFIED FOR MY GRANDCHILDREN TO SEE ONE.
Even though my son grew up watching me is the most caring, compassionate person you will ever know. He says he learned it from me. Of course he doesn’t have to sit and watch them anymore. I resonantly found an old journal. He was young. It had a description of one of my seizures. It broke my heart.
There have been other times I have read that they used to have to pinch me to see if I actually was aware.
I have had every type of seizure; I have gone through several neurologists as they have moved in and out of town. I have been put on every anti-consultant available but have never had my seizures under full control.
I have just been put on Vimpat on top of my Lamictal and for the first time I am wondering that as much as I hate it (its cost and side-effects) it may actually be helping some.
At my last Neurologist appointment, three months ago, my Dr. told me I was having both epileptic and non epileptic seizures (NES). He tried to do it compassionately emphasizing that non epileptic seizures are Real. But he emphasized that I needed counseling and need some support system. I do not have any support system.
I went home and got on the internet. My research said that NES were often caused by repressed memories from a traumatic childhood. Talk about potentially hitting the nail on the head. My childhood was extremely traumatic being raised in a home with a mother who had problems with drug addiction.
Those repressed memories exploded about a month ago when I was out doing some gardening. My husband had moved a rosebush where my mother’s cremated ashes were. I realized that is what I might be digging in them.
My father died of cancer 5 days after I turned 18. He was the only other one to try to deal with my mother. After then it was lef to me.
Around four years ago my mother poured kerosene all over herself and then lit herself on fire. I sat by her side for a day and a half smelling burnt flesh as she was dying. My sister has disowned me many years ago because I dared to have a chronic disease and remind her just too much of our Mother. When it came to this situation both her and my mother’s twin sister backed off and told me to handle it.
After 1 and ½ days I told them to take the tube out of her throat. I don’t remember them doing it. I only remember a few minutes later when I was in a wheelchair being told by a nurse that I had just had a seizure and she was taking me to the E.R.
God blessed me with the lack of memory of the moment of my mother’s death. Since I had a seizure at the time wiped out my memory.
I have been seeing a psychiatrist once a month. (All my ins. will pay for) I have been diagnosed with Anxiety Depressive Disorder for as long back as I can remember.
I have also been on anti depressants and tranquilizers. The anti depressant I am on now is supposed to be one that has only a minuscule chance of causing seizures, unlike most others, but my neurologist and psychiatrist are trying to reduce my dose anyhow.
Boy is this the time to do that when all those repressed memories are flooding back. I have removed all the nick nacks, sweaters made by my mother and anything else from my house, leaving only one thing each from my mother and father. I even threw away pictures. It has actually helped removing some of those things causing subconscious reminders ending up with a possible dissociative disorder.
I am told that the answer is that I must learn how to cope with all this and stress in general. Do they want to step into my shoes and try it?
Since my neurologist thought I should have more counseling on my own I have started seeing an additional counselor out of my own pocket. I don’t know how long that can last.
When I heard what my neurologist told me I have started to feel so guilty. Maybe all of those around me who said I was just doing them for attention and could stop them if I wanted to might be right.
Could I possibly be doing what is suggested by the research to be having or pretending to be having seizures just to keep my disability funds. As it is I pay over $100.00 a month on drugs. It does fill that with a extra that helps me function through needed costs.
I know I shouldn’t but I still feel very guilty as if it is my fault. It eats at me every day. Looking at past E.R. reports they mention long before now that I have both types of seizures.
In the last three months whether through having to deal with long lost memories, extra counseling , my antidepressant being reduced or the Vimpat being added I have, as well as I know, had only one epileptic seizure and three (one right after another) of those flopping around while conscious ones
The other thing my neurologist wished I could do was be in a supportive group. I have no support now, not even support from myself.
Right now I have days when I am reading or working on the computer and my vision goes double, times I am so shaky and off balance I am grabbing for anything I can to hold me up, I am also at times stomping erratically just to walk and telling myself to “Get down on the floor you are going to have a seizure.” My face contorts up sometimes. Does anyone know what is going on? Are these epileptic seizures, side effects or NES’s
I am so nervous and afraid of seeing my neuro the end of this month not knowing what is going to be said and what is going to come next.
I hope the very length of this post or what I have shared will not cause you to write me off as some long winded person you want nothing to do with.
I am turning toward you as sort of my last chance of surviving all of this on a day to day basis for the rest of my life. I am with no support system and I am scared.
I don't know how to do all of this when it comes to working in this support group. Help! and please be patient with me. One thing I like to do is help others when I can.
:hello::hello:
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It really sucks that things are so difficult for you right now, I know that it must be hard to deal with all that's been going on in your life without much support. I'm sorry your family isn't understanding of your seizures, whether they be epileptic or not. I forget (already) if you said if your husband went with you to the neuro's? If not maybe that would be helpful? I hope you find the care and support you need through all of this and know that we're always here to lend an ear and offer anything we might think would be helpful. Take care!
