cheekymonkey
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Hi all,
I ran upon this forum while searching through google. Please bare with me while I explain my situation.
In 2010 I was placed on Keppra as a last ditch effort to stop seizures that suddenly landed me in intensive care 3 months after the birth of my child. My dose had to be steadily increased to 4,000mg over the course of 3 years. I am still on it.
In 2013 I was admitted for a video EEG which discovered partial seizures and finally ended with the grand-mal out of camera range because I had went to the bathroom but it was caught on the monitor. Thankfully the nurse saw the wave change and raced into my room before I hit the floor. They realized my seizures was affecting the whole right side of my brain and entire frontal lobe. I wasn't a candidate for brain surgery so I was fitted for a VNS. They implanted it in the summer of 2013.
After my vns I began the dark road of medicines and the words "Well we can try this.." Topamax caused kidney stones and severe hallucinations. So bad I thought water coming out of our bathroom tub was gold. Freaked my spouse out to the point he thought I had lost my mind. So, the Dr put me on Vimpat. Finally, I stabilized on 800mg of the treatment in 2014. My seizures went from 17 partials a day and a complex once a month to no partials and one complex every 3 months or so. After the seizures slowed down my family urged me to start exercising and "get back to life". So, I did. I ran a marathon in 2015, and did cross fit 5 times a week. During that time I started to feel sick. I cannot explain it, but it took everything in me to exercise everyday, and my belly started to distend if I my anxiety level raised. Which started to be a lot, so much so, I couldn't walk through Walmart without having a panic attack. My life went down hill from there, and I started having this sense that death was chasing me. I couldn't explain it.
In January 2016 I was reorganizing our home after Christmas when I suddenly came to a crashing halt. I was rushed to the ER with chest pain, and there my stomach distended so much they believed my intestines had perforated. They did a round of tests and discovered I was extremely constipated, septic, and suffering from numerous blood clots in my lungs. My family was told that night I was going to die. They rushed me to radiology placed a IVC into my back, and from there I was rushed into the ER where I lost my entire colon, and given a ileostomy. Once out of surgery I spent a week on life support. Somehow I survived. I wished my story ended there, but it doesn't.
After, this occurred the surgeon who performed the emergency surgery told my family that the scars on the creases of my arms, from the multiple ambulance rides and IV's I have had from epilepsy, was from me doing drugs. It's hard for me to even write that! So, when I was extubated the Dr came in and I reached out for her to thank her for saving my life, and she wouldn't accept my appreciation. Instead she stood there yelling at me to tell her about this "drug habit" and when I told her I wasn't on anything she told me I was. I was absolutely so confused I just started crying and told her to check my hair that I was not on anything. She shouted at me to "SHUT UP" and seek psychological help. When her colleagues did their rounds one asked me if I would talk to a psychologist and I agreed. He came in we spoke for about 2 hours and he left. The next surgeon to come into my room that evening said he read the psychs report and toxicology readings and saw that I was of sound mind and showed no signs of drugs. This didn't help matters at all, because this horrid Doctor had my entire family at my home tearing the house apart to find whatever it was I was suppose to be on. I pretty much spent that time alone in the hospital trying to piece together what in the heck happened, and started to ask each different Dr questions. One thing they all kept repeating was my white count. They couldn't figure out why it was so low. My heart was being abnormal so they chalked it up to the VNS. Check ups after that I was staying anemic, still running fevers off and on, blood in my urine and lower back pain that has completely debilitated me. Since then my health has declined drastically. I cannot get off the couch, because I'm tied to a heating pad. I have repeatedly complained to my primary about this back pain, all the want to do is send me to physical therapy. I tried to explain to them if I cannot bend over, walk up stairs, or touch my toes I cannot do physical therapy. (Now remember I ran a 5k just a year prior) They look at me like I am lazy, depressed, or drug seeking. The last part makes me want to throat punch them all. I don't sleep and when I do sleep the pain in my back wakes me up. I'm terrified to even ask for pain relieving medicines because of how I was treated when the surgeon did the surgery.
I am beginning to think these two specific drugs, especially the high doses I am on, are the problem behind these problems. How can a person go from being a vibrant full of life person to a anxiety house bound lifeless human being! I am 34 years old! The ileostomy doesn't bother me because the pain I felt in my stomach for the year prior has been a relief! However, I still get distended in my stomach if I get upset. I'm not constipated, but I keep diarrhea. I have lost over 50 pounds since this surgery, and I am constantly being put on steroids for the lower back pain, and skin that is so dry it bleeds even with lotions! All I want is my life back. I'm tired of the assumptions from the medical community, and I am tired of being shot down whenever I try to advocate for my own health! What has me so perplexed about my heath is I was finally able to get my medical records, and that night my intestines never ruptured, but there major damage to the outside of the intestines, and it showed my gut had been dying for a long period of time. My research has showed "possibilities" of intestinal ischemia, but no one has been linked directly to this/these drugs for it. I am almost positive the wretched back pain I have suffered SILENTLY with is linked to Vimpat. I am a mother of 3, and I feel absolutely hopeless. I have lost all confidence in the medical field, and any or ALL hope that someone will actually listen to me. That surgeon, who abruptly left, has completely ruined my life. I don't even want to participate in life because of all that has happened. Just trying to type this out has been difficult because my brain is so foggy I can't seem to get the sentences put together right or the words for that matter. I hope somebody on here can help give me some kind of information, because I'm tired of trying to prove to people what I am feeling is real and what she said I am, I'm not. I feel like my body is just slowly disappearing, and everyone around me just doesn't care to listen. Help..
I ran upon this forum while searching through google. Please bare with me while I explain my situation.
In 2010 I was placed on Keppra as a last ditch effort to stop seizures that suddenly landed me in intensive care 3 months after the birth of my child. My dose had to be steadily increased to 4,000mg over the course of 3 years. I am still on it.
In 2013 I was admitted for a video EEG which discovered partial seizures and finally ended with the grand-mal out of camera range because I had went to the bathroom but it was caught on the monitor. Thankfully the nurse saw the wave change and raced into my room before I hit the floor. They realized my seizures was affecting the whole right side of my brain and entire frontal lobe. I wasn't a candidate for brain surgery so I was fitted for a VNS. They implanted it in the summer of 2013.
After my vns I began the dark road of medicines and the words "Well we can try this.." Topamax caused kidney stones and severe hallucinations. So bad I thought water coming out of our bathroom tub was gold. Freaked my spouse out to the point he thought I had lost my mind. So, the Dr put me on Vimpat. Finally, I stabilized on 800mg of the treatment in 2014. My seizures went from 17 partials a day and a complex once a month to no partials and one complex every 3 months or so. After the seizures slowed down my family urged me to start exercising and "get back to life". So, I did. I ran a marathon in 2015, and did cross fit 5 times a week. During that time I started to feel sick. I cannot explain it, but it took everything in me to exercise everyday, and my belly started to distend if I my anxiety level raised. Which started to be a lot, so much so, I couldn't walk through Walmart without having a panic attack. My life went down hill from there, and I started having this sense that death was chasing me. I couldn't explain it.
In January 2016 I was reorganizing our home after Christmas when I suddenly came to a crashing halt. I was rushed to the ER with chest pain, and there my stomach distended so much they believed my intestines had perforated. They did a round of tests and discovered I was extremely constipated, septic, and suffering from numerous blood clots in my lungs. My family was told that night I was going to die. They rushed me to radiology placed a IVC into my back, and from there I was rushed into the ER where I lost my entire colon, and given a ileostomy. Once out of surgery I spent a week on life support. Somehow I survived. I wished my story ended there, but it doesn't.
After, this occurred the surgeon who performed the emergency surgery told my family that the scars on the creases of my arms, from the multiple ambulance rides and IV's I have had from epilepsy, was from me doing drugs. It's hard for me to even write that! So, when I was extubated the Dr came in and I reached out for her to thank her for saving my life, and she wouldn't accept my appreciation. Instead she stood there yelling at me to tell her about this "drug habit" and when I told her I wasn't on anything she told me I was. I was absolutely so confused I just started crying and told her to check my hair that I was not on anything. She shouted at me to "SHUT UP" and seek psychological help. When her colleagues did their rounds one asked me if I would talk to a psychologist and I agreed. He came in we spoke for about 2 hours and he left. The next surgeon to come into my room that evening said he read the psychs report and toxicology readings and saw that I was of sound mind and showed no signs of drugs. This didn't help matters at all, because this horrid Doctor had my entire family at my home tearing the house apart to find whatever it was I was suppose to be on. I pretty much spent that time alone in the hospital trying to piece together what in the heck happened, and started to ask each different Dr questions. One thing they all kept repeating was my white count. They couldn't figure out why it was so low. My heart was being abnormal so they chalked it up to the VNS. Check ups after that I was staying anemic, still running fevers off and on, blood in my urine and lower back pain that has completely debilitated me. Since then my health has declined drastically. I cannot get off the couch, because I'm tied to a heating pad. I have repeatedly complained to my primary about this back pain, all the want to do is send me to physical therapy. I tried to explain to them if I cannot bend over, walk up stairs, or touch my toes I cannot do physical therapy. (Now remember I ran a 5k just a year prior) They look at me like I am lazy, depressed, or drug seeking. The last part makes me want to throat punch them all. I don't sleep and when I do sleep the pain in my back wakes me up. I'm terrified to even ask for pain relieving medicines because of how I was treated when the surgeon did the surgery.
I am beginning to think these two specific drugs, especially the high doses I am on, are the problem behind these problems. How can a person go from being a vibrant full of life person to a anxiety house bound lifeless human being! I am 34 years old! The ileostomy doesn't bother me because the pain I felt in my stomach for the year prior has been a relief! However, I still get distended in my stomach if I get upset. I'm not constipated, but I keep diarrhea. I have lost over 50 pounds since this surgery, and I am constantly being put on steroids for the lower back pain, and skin that is so dry it bleeds even with lotions! All I want is my life back. I'm tired of the assumptions from the medical community, and I am tired of being shot down whenever I try to advocate for my own health! What has me so perplexed about my heath is I was finally able to get my medical records, and that night my intestines never ruptured, but there major damage to the outside of the intestines, and it showed my gut had been dying for a long period of time. My research has showed "possibilities" of intestinal ischemia, but no one has been linked directly to this/these drugs for it. I am almost positive the wretched back pain I have suffered SILENTLY with is linked to Vimpat. I am a mother of 3, and I feel absolutely hopeless. I have lost all confidence in the medical field, and any or ALL hope that someone will actually listen to me. That surgeon, who abruptly left, has completely ruined my life. I don't even want to participate in life because of all that has happened. Just trying to type this out has been difficult because my brain is so foggy I can't seem to get the sentences put together right or the words for that matter. I hope somebody on here can help give me some kind of information, because I'm tired of trying to prove to people what I am feeling is real and what she said I am, I'm not. I feel like my body is just slowly disappearing, and everyone around me just doesn't care to listen. Help..