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Medical Forum / Diseases and Disorders / Epilepsy / January 2005Home from Hospital-Long
Hello everyone, I got released from the hospital yesterday and don't know what to think about the information I left with. I was very disappointed with the hospital. Nurses wouldn't come untile extended periods of time after being paged, once they did come if you asked a question they wouldn't come back with an answer. Doctors didn't answer questions about things being done, my results, etc. I couldn't sleep the first two nights I was there and asked for something to help on the 3rd night. This was at 10p. It was 11p and still no nurse. I hit the page button again. Different nurse comes in. I told her I was waiting to see if I could get something for sleep.She said she would find my nurse and be right back. Midnight paged again. The 2nd nurse comes in and I asked for status she told me your nurse said no that they discourage sleep aids in this place. She didn't consult a doctor or nothing like I asked. I know nurses don't make the decisions like that, but this nurse seemed to take things in her own hands. I told the nurse this wasn't acceptable and to page a doctor for me. It was 1a and no one came back. I got sick of the charade and gave up. Next day I requested the hospital manager come see me, stated my complaint and then she also agreed with me that she wouldn't recommend people come there. It was an arguing match every other day there for me, so I will try to not give you guys the entire saga. I was in the hospital since Monday August 11th. I had 24 EEG hookup and they were wanting to see seizures. I would have to do a base line test everyday. This was to measure normal brain wave activities. The test involved hyperventilating for 5 minutes followed by relaxed breathing. I asked over and over how hyperventilating was normal brain wave activity. No answer. I asked if this is to induce seizures in patients. They said maybe. I had three seizures when I was there and 2 were during that test and the other was right after the test. I had an MRI which showed everything to be ok I was told that my EEG has slower tone and sharpness in the right side of the brain. I had an AVM removed in the right posterior back in 1993 and this was where they were talking about. The majority of my EEG was clean. They were weaning off my meds and that was making me feel better and better. They turned my VNS off on Friday and the burning in my throat went away. That felt so good. Long and short---on discharge day we had a meeting. They explained my EEG readings having being clean minus the tone and sharpness. My neuropysch test showed everything to be in normal range except visulization or copying detail. This was tests involving pictures I had to look at for short time, remember and then draw it. I feel like a freak for saying this next part---They say that I am having non-epileptic seizures. In other words, psuedoseizures. They say 1 in 5 of the people that come through their program end up with this diagnosis. They say some traumatic event or something I have blocked out over time and when stress gets high, my body releases it by having a seizure. The only way the seizures will stop is to deal with the event I have blocked out or whatever else is bothering me. The seizures are real, however there is no physical reason for them. I asked them why no one has ever said this since I've had seizures for 13 years. They told me they dismiss them as epilepsy because of my AVM. Yet, they still want me to stay on my meds and the VNS because I have the possibility of having seizures because of my AVM history. So treatment now shifts to psychological treatment. I'm not saying this isn't true, however I don't understand it all. If it's all due to some PTSD event as to why I have seizures then why keep me on meds and VNS? To me that says something physical wrong. I don't know. I feel crazy now. Please tell me I'm normal. Anyone have suggestions or have been told something similiar to this? People are calling my house like crazy to find out how I am and I don't know what to say. I feel embarassed and stupid. HELP. Jennifer Don't feel embarrassed and stupid... While I *definitely* haven't been down the same road, I can empathize with the "you are prone to seizures but you aren't epileptic" thing. I take Topamax because I have frontal lobe migraines -- with definite links to thought processes and memory issues -- and because previous EEGs have shown seizure activity. I had been having extreme headaches and dizzy spells for over a year. Physicians told me that I was stressed, or tired, or that oral contraception was causing it (even though I went off the pill and still had problems.) Finally, in the summer of 2002, when I was in Wales, I took the bus to the A&E department at the University of Wales Hospital and told them that I couldn't focus on reading, I was exhausted, and I wanted an answer. What did they do? They took a chest x-ray and kept me overnight for observation. They wanted me in for a week to run an EEG (it was faster to get one while inpatient) and a CT scan ("just in case there's something wrong".) Meanwhile, my blood pressure kept dropping and I couldn't walk in a straight line. Eventually , the EEG showed that I was having seizures during these dizzy spells. Finally, people listened to me when I said that something was wrong. When I asked my neurologist if I were epileptic, though, he said that no, I was simply prone to seizures and needed to watch out for certain triggers -- illness, fever, stress, dehydration, etc. I've had several simple and complex partials. I still haven't come up with a good way to explain to my friends and parents why my left hand will be numb for days at a time, why I can't put together simple sentences at various periods -- even though I have a bachelor's in English and a master's in journalism , and why I occasionally get so dizzy that I need to pull over or stop when I 'm driving long distances. Sometimes I think that it would just be easier to tell people that I have epilepsy. People understand that -- no one seems to grasp this "I'm prone to seizures -- but I don't have tonic clonics" thing. Even when I'm in hospital for other things, nurses freak out because they think that I need to be on seizure precautions. And then when I end up having a simple partial, they don't realize it... I'm not sure what useful advice I could give you, but you're definitely not alone. A. -- Toby: How the hell did I get into trouble? Josh: Today, my dear friend, all you had to do was get out of bed. -- The West Wing > Hello everyone, > I got released from the hospital yesterday and don't know what to think [quoted text clipped - 25 lines] > seizures in patients. They said maybe. I had three seizures when I was there > and 2 were during that test and the other was right after the test. I looked up information using the keywords "hyperventilation" and "EEG" on the Alexa search engine and surprise, surprise, information came up about this. Following is a link that tells what happens to the brain during hyperventilation. http://www.csun.edu/~vcpsy00i/dissfa01/EEG_lesson2.html When I get some time, I want to look into this hyperventilation matter because I do have questions about this. > I had an MRI which showed everything to be ok To be expected. > I was told that my EEG has slower tone and sharpness in the right side > of the brain. I had an AVM removed in the right posterior back in 1993 and [quoted text clipped - 27 lines] > People are calling my house like crazy to find out how I am and I don't > know what to say. I feel embarassed and stupid. HELP. The first neurologist I had, who did not specialize in epilepsy but had an interest in it, told me my symptoms were bizarre. That's the word he used, "bizarre." He made me feel like I was really crazy. I was desperate and keep returning to him. They did the normal MRI and EEG tests (including the sleep deprivation to try to force seizures), which came back normal, and that kind of reinforced my feeling that I was crazy. I was really distressed by all these negative findings. The doctor told me to wait until I actually started having seizures (because mine always clumped around a two-day period) and then come into the clinic and they would rig me up to a portable monitor. The portable monitor finally caught the seizure activity, and there was a lot of it. Now the thing is, if they had not caught the seizures, does that mean the person doesn't have them. Of course not. As far as people calling or asking you questions, I think you could safely say they could not give you a definitive answer as to what is going on. Your story has been fascinating to read, and I want to thank you for letting us know. I had more to say but am running very short of time, so I guess it will have to wait until later, plus I would like to look a few things up. Barb > Jennifer Hi, my name is Brandy and I'm writing on behalf of what my husband has been going through (and me). He broke his back 3 and 1/2 years ago. Stupid insurance company won't do surgery even though the doctors say he needs it. Thats where everything started. In the last 4 months, after years of pain, depression, and immobility he aquired blood clots in his lungs. Sorry so much info. But about 2 weeks ago he started getting very confused,prolonged dizziness, weakness, memory loss, slurred speech, and then the seizures started. Talking about scary. Well he has been to numerous doctors and had tons of tests. Well all they would say is "We don't really know what's going on." He starts breathing really hard, stares blankly, left arm and leg draw up and his head leans to the left. They can last anywhere from 2 to 5 minutes. I have gotten so pissed at all the doctors. With all of there education they can't seem to tell me or him whats going on. I finally took him to a hospital in another state and thats when they told me that these were not real seizures but pseudoseizures. They came from all the years of pain and depression and the only way they will reside is to finally have his back surgery. They said there is really nothing wrong but that his body is just tired of all the problems and its shutting down. That when he has the so-called seizures that his body is saying I've had enough and at that point there is no pain, depression, nor feelings. Sounds odd but that's what the doctor's say anyway. And even though they tell us all of this its still hard for me to believe theres not something else wrong and they just cant identify it. I know this might not help you in any way but it helps me to know that someone else out there has been kind of going through the same thing. Brandy g'day brandy, typical of the insurance company, they're quick to take your payments but unwilling to cough up the dough for claims. let's face it they were started by the mafia and the way they act you'd think they were still a branch of the cosa nostra. pablo > Hi, my name is Brandy and I'm writing on behalf of what my husband has been going through (and me). He broke his back 3 and 1/2 years ago. Stupid insurance company won't do surgery even though the doctors say he needs it. Thats where everything started. In the last 4 months, after years of pain, depression, and immobility he aquired blood clots in his lungs. Sorry so much info. But about 2 weeks ago he started getting very confused,prolonged dizziness, weakness, memory loss, slurred speech, and then the seizures started. Talking about scary. Well he has been to numerous doctors and had tons of tests. Well all they would say is "We don't really know what's going on." He starts breathing really hard, stares blankly, left arm and leg draw up and his head leans to the left. They can last anywhere from 2 to 5 minutes. I have gotten so pissed at all the doctors. With all of there education they can't seem to tell me or him whats going on. I finally took him to a hospital in another state and thats when they told me that these were not real seizures but pseudoseizures. They came from all the years of pain and depression and the only way they will reside is to finally have his back surgery. They said there is really nothing wrong but that his body is just tired of all the problems and its shutting down. That when he has the so-called seizures that his body is saying I've had enough and at that point there is no pain, depression, nor feelings. Sounds odd but that's what the doctor's say anyway. And even though they tell us all of this its still hard for me to believe theres not something else wrong and they just cant identify it. I know this might not help you in any way but it helps me to know that someone else out there has been kind of going through the same thing. > Brandy > Hi, my name is Brandy and I'm writing on behalf of what my husband has been going through (and me). He broke his back 3 and 1/2 years ago. Stupid insurance company won't do surgery even though the doctors say he needs it. Thats where everything started. In the last 4 months, after years of pain, depression, and immobility he aquired blood clots in his lungs. Sorry so much info. But about 2 weeks ago he started getting very confused,prolonged dizziness, weakness, memory loss, slurred speech, and then the seizures started. Talking about scary. Well he has been to numerous doctors and had tons of tests. Well all they would say is "We don't really know what's going on." He starts breathing really hard, stares blankly, left arm and leg draw up and his head leans to the left. They can last anywhere from 2 to 5 minutes. I have gotten so pissed at all the doctors. With all of there education they can't seem to tell me or him whats going on. I finally took him to a hospital in another state > and thats when they told me that these were not real seizures but pseudoseizures. They came from all the years of pain and depression and the only way they will reside is to finally have his back surgery. They said there is really nothing wrong but that his body is just tired of all the problems and its shutting down. That when he has the so-called seizures that his body is saying I've had enough and at that point there is no pain, depression, nor feelings. Sounds odd but that's what the doctor's say anyway. And even though they tell us all of this its still hard for me to believe theres not something else wrong and they just cant identify it. I know this might not help you in any way but it helps me to know that someone else out there has been kind of going through the same thing. Hi, Brandy. Sorry to hear about all the suffering your husband has gone through. You know, you really can't throw out the possibility of epilepsy because sometimes seizure disorders are so darned hard to diagnose. The thing about the blood clots kind of scares me too. I have a fairly common inherited blood clotting disorder, and I have had DVTs several times and a pulmonary embolism (clots in the lungs). I had my first baby at age 20 and had to remain in the hospital for much longer than normal because of clotting problems in my legs. Some of the first seizure symptoms (though mild) were also appearing around that time frame, and the symptoms just became more numerous and and more intense as time passed (I'm talking about years and years). I asked my doctor if I might have had a mini-stroke at some point (I was thinking during pregnancy or shortly after) that caused the epilepsy and he said they didn't know. Theoretically, a clot in the legs should not be able to make it to the head, but it is possible for a clot to develop somewhere else that could reach the brain if it breaks off and travels. In my experience, you might not know you have a blood clot until the situation gets out of control. Some of the symptoms you mentioned that started two weeks ago could possibly be related to blood clots in the lungs. My pulmonary embolism was actually lots and lots of tiny blood clots all over both lungs. I didn't know I was in trouble for a couple of days, but then I got big chest and back pain and ended up in the ER. My blood oxygen level was low, which probably explains why I had trouble talking during the big attack. I was already being treated for a DVT when all this happened so I was already immobile, so I don't know what would have happened if I had to exert myself. You would think that if you are short of oxygen and you have to perform physical things, you could have the symptoms you talked about. One thing that is kind of interesting about pulmonary embolisms is that there often is some kind of apprehension (read that in a nursing book) on the patient's part. I am really surprised it only took two weeks to give your husband a diagnosis. Seems awfully short to me. Did they do an MRI or EEG? Barb > Brandy Dear Jennifer, Hi, I know it frustating to go through this. I too just got out of the hospital this weekend from having pseudo seizures. I actually started having them a year ago and the only way it could be stopped, was pumping valium in me. During the past year I still seizures but I was able to come out of them with the help of my husband. But I have had alot more stress recently and they came back so bad that I had to go back to the hospital. I am going to start therapy next week. I want to check into hynotism to see if I have repressed many memories that are also affecting me today. You hang in there and don't feel bad at all. I hope everything will work out for you and you can resolve this. Take care. Sincerely Jennifer
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