Okay I really don't know where to start. I started to have seizures when I was 4 hours old. It took my mother taking me from neurologist to neurologist 4 years total before I was labeled a epileptic. I was put on high dosages of Phenobarbital and Dilantin till I hit puberty. Than my medicine was switched to Tegretol XR 1600mg a day and Klonopin 3 mg a day. Now because my seizure level on the rise the have also added 90 mg of Phenobarbital a day again. My seizures were never controlled by medicine.
I spent years laying in hospital beds seizing doctors watching and I felt completely hopeless as a child and still do as a adult. My epilepsy has gotten worse. I mean real bad anywhere from 4-6 seizures a night I might go 1-2 days every 6-8 months but I wait for them days and enjoy boy do I enjoy them. I have 5 children ages ranging from 20-9 years old(no none of my children have inherited the epilepsy), I have the worlds best husband, who has stuck by me through all this pain n suffering; and complications with my seizures (he's my rock).
Okay so now were getting to the nitty gritty I had a Vagus Nerve Stimulator put in on June 18, 2008. My seizures are 100% worse, my memory is fading I’ve lost half my body weight and feel like the seizures are my life I only have them in the REM (1 1/2 hours) stage of sleep and they are located in my front temporal lobe (non-operable). I have exhausted every medications there is known to man. Now this device that’s inside of me has to be surgically removed because they tell me I am a complicated and a rare case. But the neurologist told me that this device is more than likely to cause SUDEP before I can get it out. No doctor wants to take this out because of legal standings and my risk of dying on the table as they have put it to me. So I’m searching for a doctor out of state to remove this with no help from the neurologist he's even scared to touch me.
Now are u ready for the twist to this serious ridiculous life I had a primary care physician MD. He decided the pain I was in was uncalled for and told me I was going to die anyway why not do it in comfort. So he prescribed me hydro morphine 60 mg twice daily and oxycontin 4 mg also known as k-4 4 times a day. I had never taken pain meds unless surgery and then I was still reluctant. He waited a whole year and kept increasing my doses every 3 months. (I don't remember any of these periods of my life) He than decided because I wasn't dead yet it would be best if I stopped seeing him (HE SENT ME A DIVORCE LETTER FOR NO KNOWN REASON AND STILL WILL NOT GIVE ME ONE)
Well needless to say I had to go cold turkey off these highly addicting pain meds which led to more seizures, more brain trauma. I tried to seek help through a mental health facility but there only advice was go off all my seizure medicine so i could be put on a medicine called suboxona (not sure of the spelling) when I told him I couldn't do that, that it would kill me he laughed right in me and my husbands face saying best of wishes and that was the end of seeking help I've been doing rehab at home with the help of my husband n children. I've now been off all pain meds since January 31, 2009.
Well that’s it so far now I’m experiencing horrific nightmares that are so vivid so surreal. I've given up on sleeping and I can only drink smartwater/gatorade rain due to kidney damage. Have I given up? No, I refuse to give up I have 5 beautiful daughters and a grandson. That’s not to say I don't want to give up but I guess I’m scared what I’ll leave behind. Do I wish that, that big seizure would kill me yes some days and today is one of them? I sit here crying typing. I'm a educated woman well at least I use to be I hold a master in computer information technology but now I’m having problems spelling the silliest of all words. If there is anyone out there that can listen talk anything I would greatly appreciate it.
I feel like I’m in a dark tunnel and there is no light at the end, my children are seeing me fall apart 2 had to be removed out of school n are now homeschooled due to depression over me. I feel so guilty!!!!!!!! I had a really bad seizure about a month ago my husband couldn't get me out of it as we call it, it lasted for over 6 hours i had to be taken by ambulance and believe it or not the doctor on call told me it was all in my head and sent a psychiatrist in to talk to me when I explained what I explained here he shook his his and said he was disgusted in the doctor, who just dismissed me as a mental case. He said what I was feeling was actually great considering all the underlying facts and that he wouldn't be needing to talk to me anymore unless i felt i needed to vent. Please tell me there is help out there for someone in my situation.
Thanks Kimberly
I spent years laying in hospital beds seizing doctors watching and I felt completely hopeless as a child and still do as a adult. My epilepsy has gotten worse. I mean real bad anywhere from 4-6 seizures a night I might go 1-2 days every 6-8 months but I wait for them days and enjoy boy do I enjoy them. I have 5 children ages ranging from 20-9 years old(no none of my children have inherited the epilepsy), I have the worlds best husband, who has stuck by me through all this pain n suffering; and complications with my seizures (he's my rock).
Okay so now were getting to the nitty gritty I had a Vagus Nerve Stimulator put in on June 18, 2008. My seizures are 100% worse, my memory is fading I’ve lost half my body weight and feel like the seizures are my life I only have them in the REM (1 1/2 hours) stage of sleep and they are located in my front temporal lobe (non-operable). I have exhausted every medications there is known to man. Now this device that’s inside of me has to be surgically removed because they tell me I am a complicated and a rare case. But the neurologist told me that this device is more than likely to cause SUDEP before I can get it out. No doctor wants to take this out because of legal standings and my risk of dying on the table as they have put it to me. So I’m searching for a doctor out of state to remove this with no help from the neurologist he's even scared to touch me.
Now are u ready for the twist to this serious ridiculous life I had a primary care physician MD. He decided the pain I was in was uncalled for and told me I was going to die anyway why not do it in comfort. So he prescribed me hydro morphine 60 mg twice daily and oxycontin 4 mg also known as k-4 4 times a day. I had never taken pain meds unless surgery and then I was still reluctant. He waited a whole year and kept increasing my doses every 3 months. (I don't remember any of these periods of my life) He than decided because I wasn't dead yet it would be best if I stopped seeing him (HE SENT ME A DIVORCE LETTER FOR NO KNOWN REASON AND STILL WILL NOT GIVE ME ONE)
Well needless to say I had to go cold turkey off these highly addicting pain meds which led to more seizures, more brain trauma. I tried to seek help through a mental health facility but there only advice was go off all my seizure medicine so i could be put on a medicine called suboxona (not sure of the spelling) when I told him I couldn't do that, that it would kill me he laughed right in me and my husbands face saying best of wishes and that was the end of seeking help I've been doing rehab at home with the help of my husband n children. I've now been off all pain meds since January 31, 2009.
Well that’s it so far now I’m experiencing horrific nightmares that are so vivid so surreal. I've given up on sleeping and I can only drink smartwater/gatorade rain due to kidney damage. Have I given up? No, I refuse to give up I have 5 beautiful daughters and a grandson. That’s not to say I don't want to give up but I guess I’m scared what I’ll leave behind. Do I wish that, that big seizure would kill me yes some days and today is one of them? I sit here crying typing. I'm a educated woman well at least I use to be I hold a master in computer information technology but now I’m having problems spelling the silliest of all words. If there is anyone out there that can listen talk anything I would greatly appreciate it.
I feel like I’m in a dark tunnel and there is no light at the end, my children are seeing me fall apart 2 had to be removed out of school n are now homeschooled due to depression over me. I feel so guilty!!!!!!!! I had a really bad seizure about a month ago my husband couldn't get me out of it as we call it, it lasted for over 6 hours i had to be taken by ambulance and believe it or not the doctor on call told me it was all in my head and sent a psychiatrist in to talk to me when I explained what I explained here he shook his his and said he was disgusted in the doctor, who just dismissed me as a mental case. He said what I was feeling was actually great considering all the underlying facts and that he wouldn't be needing to talk to me anymore unless i felt i needed to vent. Please tell me there is help out there for someone in my situation.
Thanks Kimberly
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