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My story doesn’t actually begin with having seizures but I think it definitely lead up to it. The beginning started about 8 years ago now I think when I was diagnosed with Ulcerative Colitis. In the beginning when I was diagnosed, I had medications for it but it wasn’t long until I could no longer afford it. I was silent about the symptoms, afraid of telling and afraid it was more than UC, afraid it was cancer. I hoped it would go away and even when I felt my worst, I still said nothing. Five years went by and although the symptoms became better, I still suffered, and then one day went to the doctor, sick with diarrhea but said nothing about the blood.
He prescribed a medication & it went away and somehow I went into remission for 2 years.
September of 2009 is when the snowball began to form. I became deathly ill, in bed every minute of the day, too weak to get out of bed but I did, just long enough to TRY and eat or drink something & use the bathroom but even this became impossible. First week in October, I went to the doctor and he sent me to the emergency room. I was on death’s door step. I was in complete kidney failure, having diarrhea and severely dehydrated & weak from being unable to eat or drink anything for nearly 3 weeks. After being in the ER for several hours, I was transferred to the hospital where I spent a week undergoing test after test. Plus they had to get my kidneys working again and stabilize me before doing anything else.
I underwent a colonoscopy and October 7th 2009 I was taken to surgery and had my colon removed.
I remained in the hospital for 3 weeks, 2 of which was spent in intensive care. I was on 9 different IVs and had a sepsis infection & the colon had ruptured during surgery. I was too weak to walk and had to struggle to get up but I tried. I got better slowly and would walk a little but couldn’t do so without a walker.
After leaving the hospital, I spent another 3 weeks in rehab learning to walk & getting my strength back, plus learning to live with an ostomy. Anyway, eventually I recovered but took a good six months to feel normal again.
I was good for two years, then December 29, 2010, I became sick again, diarrhea and dehydration. I woke up the morning of December 29th unable to move. I was paralyzed from the neck down. It felt like my entire body was asleep. The ambulance arrived and the paramedics had to lift me by a backboard to put me on a gurney and they took me to the hospital.
They cut my clothes off, hooked me up to more IVs. Once again I was in kidney failure, only this time I also had a potassium level of 9.4, which should have killed me. Normal is only up to 5 & in lethal injections, they only go up to 7.6. They called my family and told them to come cause I may not make it.
My blood pressure was dropping, last I’d heard it was 88 over 26 and it would only be a short time until my other organs began to fail. To add to all the drama, I’ve also had cardiomyopathy for the past 6 years. They finally stabilized me and transferred me to the hospital in the next town. I spent 4 days in the hospital & although it wasn’t as long, I was closer to death than I had been before. It ALMOST made the first time seem less serious but not by much. This was the second time my kidneys had completely failed but little did I know more was yet to come.
I spent 4 days in the hospital and this time had to have dialysis and they used Dopamine to help the kidneys with it. Hospitalized December 29th 2010, released January 2, 2011. The second kidney failure resulted from starting as a simple case of gas, resulting in the condition becoming worse, leading to dehydration and then kidney failure.
I felt remarkably okay for just being out of the hospital. Then it happened, January 4th 2011 just two days out of the hospital. I was shopping at the local Walmart where I live and next thing I know, I woke in the back of an ambulance. I never felt anything coming on but woke up on a gurney and a paramedic staring at me. I must have passed out again cause next thing, I woke up in the hospital with no recollection of the ambulance ride or the doctors and paramedics bringing me into the ER and putting me on a bed. I woke up on the bed and a doctor coming in and telling me I had a seizure. They did a cat scan and that was normal along with doing numerous tests & although I only spent a few hours in the ER, I was told to make an appointment with a Neurologist.
January 19, 2011, I had my first appointment and he put me through some initial tests he could do, testing me by having me do several things and then asked me to tell him best I could what happened. I told him I was just shopping and woke up in the ambulance and don’t really remember anything. I told him about being in the hospital for kidney failure two days before and the high potassium level. He said it could be why I had the seizure but could be other things too.
He ordered an EEG & an MRI. I had the EEG first and that was normal. I did a follow up and he said that although normal, it doesn’t rule anything out. Then I had the MRI & the results were stunning. The MRI showed I had a brain hemorrhage, a subdural hematoma. The technicians performing the MRI called my Neurologist and told him what happened and I was taken to the ER. Then I was taken by ambulance to the hospital an hour away and underwent emergency brain surgery 3 hours later.
They drilled a hole in my skull after making the incision and drained the blood. The blood was on the entire right side of my brain and there was so much there, it was pushing my brain to one side. This time I spent two days in the hospital. They did a second cat scan and the brain was normal this time. However, I still had no answers to why I had the seizure. I went for a follow up with the Neurologist and he was completely shocked, said he wasn’t expecting it, actually expecting the test to be normal.
He’s said that the seizure could be a result of the high potassium but could also be related to the kidney failure or that the brain bleed could have caused it. The Neurosurgeon thinks the bleed is from a head injury and that leads me to think the seizure caused it. The bleeding had stopped by the time they did the MRI and it was old blood the surgeon said. They don’t know what caused the bleeding, where it came from or whether or not it caused the seizure or the other factors.
My Neurologist put me on anti-seizure medicine & although I’ve remained seizure free for a year and a half, we still have no answers and the doctor said we may never know what caused it and I have another EEG coming up in November. We’ve been discussing taking me off the meds but he seems to be leaning toward keeping me on them for life because he thinks I’m at risk for having more and being we don’t know what caused it, unless the EEG tells us, there’s always this chance. I had a grand mal seizure and was unconscious for several minutes and have no recollection of what happened while in that store.
And although I didn’t have a seizure, I had a third kidney failure December 20th 2011 but only had to spend a day in the hospital. I’d caught it in time before they failed completely. This is my story up to now and I follow up with my Neurologist every 6 months, have an EEG in November and follow up with him in December.
Although I haven’t had another seizure, I worry about it all the time and there’s something that’s been developing I need to tell the Neurologist about and that is sometimes I’ll be at work and suddenly sounds will become muffled and sound far off, this lasts for a few seconds, then returns to normal. I don’t pass out but it scares me. This has only happened three or four times and once my vision was affected & I’ve been reading this can be a symptom but I’ll have to ask him. Thanks for listening.
He prescribed a medication & it went away and somehow I went into remission for 2 years.
September of 2009 is when the snowball began to form. I became deathly ill, in bed every minute of the day, too weak to get out of bed but I did, just long enough to TRY and eat or drink something & use the bathroom but even this became impossible. First week in October, I went to the doctor and he sent me to the emergency room. I was on death’s door step. I was in complete kidney failure, having diarrhea and severely dehydrated & weak from being unable to eat or drink anything for nearly 3 weeks. After being in the ER for several hours, I was transferred to the hospital where I spent a week undergoing test after test. Plus they had to get my kidneys working again and stabilize me before doing anything else.
I underwent a colonoscopy and October 7th 2009 I was taken to surgery and had my colon removed.
I remained in the hospital for 3 weeks, 2 of which was spent in intensive care. I was on 9 different IVs and had a sepsis infection & the colon had ruptured during surgery. I was too weak to walk and had to struggle to get up but I tried. I got better slowly and would walk a little but couldn’t do so without a walker.
After leaving the hospital, I spent another 3 weeks in rehab learning to walk & getting my strength back, plus learning to live with an ostomy. Anyway, eventually I recovered but took a good six months to feel normal again.
I was good for two years, then December 29, 2010, I became sick again, diarrhea and dehydration. I woke up the morning of December 29th unable to move. I was paralyzed from the neck down. It felt like my entire body was asleep. The ambulance arrived and the paramedics had to lift me by a backboard to put me on a gurney and they took me to the hospital.
They cut my clothes off, hooked me up to more IVs. Once again I was in kidney failure, only this time I also had a potassium level of 9.4, which should have killed me. Normal is only up to 5 & in lethal injections, they only go up to 7.6. They called my family and told them to come cause I may not make it.
My blood pressure was dropping, last I’d heard it was 88 over 26 and it would only be a short time until my other organs began to fail. To add to all the drama, I’ve also had cardiomyopathy for the past 6 years. They finally stabilized me and transferred me to the hospital in the next town. I spent 4 days in the hospital & although it wasn’t as long, I was closer to death than I had been before. It ALMOST made the first time seem less serious but not by much. This was the second time my kidneys had completely failed but little did I know more was yet to come.
I spent 4 days in the hospital and this time had to have dialysis and they used Dopamine to help the kidneys with it. Hospitalized December 29th 2010, released January 2, 2011. The second kidney failure resulted from starting as a simple case of gas, resulting in the condition becoming worse, leading to dehydration and then kidney failure.
I felt remarkably okay for just being out of the hospital. Then it happened, January 4th 2011 just two days out of the hospital. I was shopping at the local Walmart where I live and next thing I know, I woke in the back of an ambulance. I never felt anything coming on but woke up on a gurney and a paramedic staring at me. I must have passed out again cause next thing, I woke up in the hospital with no recollection of the ambulance ride or the doctors and paramedics bringing me into the ER and putting me on a bed. I woke up on the bed and a doctor coming in and telling me I had a seizure. They did a cat scan and that was normal along with doing numerous tests & although I only spent a few hours in the ER, I was told to make an appointment with a Neurologist.
January 19, 2011, I had my first appointment and he put me through some initial tests he could do, testing me by having me do several things and then asked me to tell him best I could what happened. I told him I was just shopping and woke up in the ambulance and don’t really remember anything. I told him about being in the hospital for kidney failure two days before and the high potassium level. He said it could be why I had the seizure but could be other things too.
He ordered an EEG & an MRI. I had the EEG first and that was normal. I did a follow up and he said that although normal, it doesn’t rule anything out. Then I had the MRI & the results were stunning. The MRI showed I had a brain hemorrhage, a subdural hematoma. The technicians performing the MRI called my Neurologist and told him what happened and I was taken to the ER. Then I was taken by ambulance to the hospital an hour away and underwent emergency brain surgery 3 hours later.
They drilled a hole in my skull after making the incision and drained the blood. The blood was on the entire right side of my brain and there was so much there, it was pushing my brain to one side. This time I spent two days in the hospital. They did a second cat scan and the brain was normal this time. However, I still had no answers to why I had the seizure. I went for a follow up with the Neurologist and he was completely shocked, said he wasn’t expecting it, actually expecting the test to be normal.
He’s said that the seizure could be a result of the high potassium but could also be related to the kidney failure or that the brain bleed could have caused it. The Neurosurgeon thinks the bleed is from a head injury and that leads me to think the seizure caused it. The bleeding had stopped by the time they did the MRI and it was old blood the surgeon said. They don’t know what caused the bleeding, where it came from or whether or not it caused the seizure or the other factors.
My Neurologist put me on anti-seizure medicine & although I’ve remained seizure free for a year and a half, we still have no answers and the doctor said we may never know what caused it and I have another EEG coming up in November. We’ve been discussing taking me off the meds but he seems to be leaning toward keeping me on them for life because he thinks I’m at risk for having more and being we don’t know what caused it, unless the EEG tells us, there’s always this chance. I had a grand mal seizure and was unconscious for several minutes and have no recollection of what happened while in that store.
And although I didn’t have a seizure, I had a third kidney failure December 20th 2011 but only had to spend a day in the hospital. I’d caught it in time before they failed completely. This is my story up to now and I follow up with my Neurologist every 6 months, have an EEG in November and follow up with him in December.
Although I haven’t had another seizure, I worry about it all the time and there’s something that’s been developing I need to tell the Neurologist about and that is sometimes I’ll be at work and suddenly sounds will become muffled and sound far off, this lasts for a few seconds, then returns to normal. I don’t pass out but it scares me. This has only happened three or four times and once my vision was affected & I’ve been reading this can be a symptom but I’ll have to ask him. Thanks for listening.