mistreatment in ER because my seizures are "fake"

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I warn you this is long but everything written is important to understand what happened to me and how awfully I was mistreated because of my so called fake seizures.

My seizures started 4 months ago at a time in my life when everything was going better than ever. For the past four months I have several episodes a day (3-8) in which I have convulsive movements mostly in left side of my body for about 1-2 minutes which exhaust me and give me awful headaches (I have also suffered from migraines for 2 years)

After one of my seizures got very intense (about 2 weeks after they started) and did not stop I was put in the hospital for 9 days followed by what I thought was an extremely amazing neurologist. (for that matter he was renouned nationally but a migraine specialist). I had already been seeing him for 3 months for my migraines.

During the hospital stay I had a VEEG in which multiple episodes were recorded and 2 epiliptaform waves were seen as well as post ictal slowing. Diagnosis: epilepsy complicated by a complex migraine disorder as well as a right frontal lobe AVM as well as some non epileptci seizures.

The problems started when I had to leave college and move home where the hospital did not know me. Once in a while I have cluster seizures in which I do not recover and after 30 minutes my parents are forced to call 911. I am usually given a lot of versed in the ambulance (does not calm down seizure) and then ativan in the ER, occasionally IV phenytoin. But sometimes doctors look at me with confusion. my seizures do not resemble classic seizures therefore: psychogenic, conversion disorder, non epileptic in other words not taken seriously. Oh I should also mention a bias I get every single time I see a doctor. from the ages of 12-15 I battled a serious eaiting disorder, depression and self mutilation which has left my arms scarred forever even though they are now clearly healed and very old. (I am19 now).

Most recently after an extremely hot day where I spent all day in the sun with friends at a country fair with a lot of stimulation I passed out, had a seizure which did not end. I was brought to the ER (hospital where I had been hospitalized previously). My memory from that day is fuzzy but I remember waking up in a gown on an ER bed, alone. My friends were nowhere in sight and neither was my purse or phone. I had no call button near me and no nurse was in sight.

I continued having seizures in which I remained conscious enough to hear hospital staff pass by and say: "see that, yeah she needs a psychiatrist." Eventually a nurse came in, looked at me and then left without a word. I was left there drooling on myself and seizing for 2 hours until I was able to make enough noise to get a nurse in my room.

I very rationally told her: "wether you think my seizures are psychosomatic or not, I still need to be treated and taken seriously as I can not control this." To which she very coldly responded: Oh we are taking you serisouly, the ER has just been very busy today. A lot of very serious emergencies, car crashes and heart attacks. the doctor will be in when he can.

When the doctor finally came in, the very first thing he said was: I see you have a problem with cutting.

I was flabergasted! My scars are white, it is clear they are not recent and that is what I told him. He then told me than my seizures were not real and therefore no medecine would help me. He got up and left. At this point I could not take it anymore. I very angrily pulled off my heart monitors and discharged myself. I was informed my mother was in the lobby. (she had driven 2 hours to come get me and had not been let in to see me or given any information). I had to walk myself out of the ER still stumbling and not walking straight, extremely weak. At the end of the hall I passed out, hit my head and had another seizure. When I woke up nurses were yelling at me to get up. I heard one say: NO! no one help her up, no one is going to hurt her back for this girl. She'll get up when she wants to.

I managed very slowly to get myself up under the discussed looks of the personel and was wheeled back into my room dispight my distcharge. My mother was finally brought in not understanding what was happening. When she finally got it, she was horrified and demanded I be given something to make it through the 2 hour car ride home to which, in my mothers presence they were very happy to give me.

So that is it. This experience was truly traumatizing and my parents and I are at a loss for what to do and how to be taken srisouly. Even if my seizures are non epileptic, they are still out of my control and we just don't know what to do...

Comments

I do believe you need to

Submitted by just_joe on Sun, 2014-07-20 - 19:59

I do believe you need to discuss this with the state medical board. Especially if yo ucan get the doctors and nurses names. Your dismissal papers should have the doctor you saw and the time. Knowing that they can obtain the nurses on duty. As for not letting your mother back generally family members are wanted to assist in giving information about the patient. I am a family friend and I am even let back when I have helpd get someone to the hospital ER.. Isee Amy Jo has more information and somweone from the foundation has given you a site to bring up for legal assistance. A person having a cluster of seizures whether regular epilepsy or psycjosimatic ot not. ER rooms are there to help people brought in and that is exactly what they are there for. Which would also mean YOU. I hope this helps

I read your post. You can try

Submitted by Anonymous on Sun, 2014-08-03 - 17:48

I read your post. You can try to sue the hospital for medical malpractice. Good luck in your endeavor. The thing you need to do now is to get help for your Non-Epileptic Seizures. You need to go see a psychiatrist or a psychologist since seizure medications do not help or stop your type of seizures. You need to understand why you are having these type of seizures. Non-epileptic seizures usually happen due to trauma suffered in childhood like physical abuse or sexual abuse. Stress can also cause this type of seizure. But I understand what you are going through. In 2009 I started to have grand mal seizures only while I was sleeping. I would have 1 maybe 2 seizures a month. I was taken to the hospital ER and on the third ER trip for a seizure, the ER doctor prescribed Dilantin 100 mg 3xaday. I was diagnosed with a Seizure Disorder. I had all the tests done, CT Scan, MRI, and EEG. All came back normal showing no seizure activity. I took the Dilantin for 2 weeks and had to change it to 2xaday. Then my insurance from work changed the med to Phenytoin 100 mg 2xaday, then because of stomach nausea and throwing up for 5 days straight, a new dr. I went to see changed the seizure med to Tegretol XR 1 tab every 12 hours. I took that med for 2 weeks and started to have anger problems so I switched back to taking Phenytoin. I took my seizure medication for a year and a half. Then I started to notice that I was experiencing memory loss. I could not remember things like my aunt's last name or my cell phone number. I also lost my job in 2011 and did not have health insurance anymore and could not afford the medication anymore so I decided then to get off the medication. Over a 3 month period I slowly weaned myself off the seizure medication. Now I take no seizure medication for my seizures. I still have grand mal seizures only while I am sleeping. I still have 1 maybe 2 a month. Right now it has been 93 days since my last seizure in May 2014. The last time I saw my Primary Care dr. he said since all the tests were negative and showed no seizure activity, he now thinks my seizures are Psychosomatic Seizures. I was upset about his diagnosis. I went home after the dr. appt. and looked up info online about this seizure type. I found out that my seizures are NOT the same as this type of seizure. My boyfriend has witnessed my seizures many times and finally after 6 years, he has seen the seizure from the start of it. He said my whole body got really rigid and tight, the muscles getting tighter and tighter. Then my arms started to jerk and my body jerk as well. My face and lips turned blue, my eyes were wide open and blinking rapidly. Then the seizure ended and I went back to sleep. After about 30 minutes I came to again and was coherent and not so confused as I am after the seizure. The right side of my tongue was sore, my legs were sore and I had a really bad headache and bad stomach nausea. Non-epileptic seizures are hard for doctors to diagnose because many times they resemble a grand mal seizure. But there are certain characteristics that set them apart from real seizures. When people have non-epileptic seizures, they move their head from side to side, They may shriek or cry out, sometimes they laugh during the seizure. They do bicycle riding movements with their legs. They may bite the tip of their tongue or lips and many times they have the seizure when people are around. Their eyes are tightly closed as well. After the seizure is over with, they come out of it very quickly and do not suffer from symptoms many people do when they have a grand mal seizure. Like they may not have confusion or nausea. Well I hope this info. I gave you helps you. Take care and I hope you find help for your seizures.

Folks, these are not non

Submitted by hertley@yahoo.com on Wed, 2014-08-20 - 19:05

Folks, these are not non-epileptic seizures. This is exactly the reason I was so afraid to tell anyone what was happening to me when I started having seizures. Here is my back story:Mine started when I was 13 and fell off a horse. I got a major concussion from that fall and the next year I started having seizures. I didn't figure out what was happening to me until I was around 30 and decided to start researching disorders. Sure enough I figured out I was having simple partial seizures from getting the right side of my head whacked in that horse fall. Here is what triggered my seizures and what they are like:I had to be nervous and a cramp in my left foot was the warning. My left arm and leg would seize up on me and I would clench my teeth really tight and my tongue would crick to the side of my cheek and my eyes would roll up in my head. (I literally looked mentally retarded). Fortunately these episodes only lasted for around 3 to 5 seconds. I would have at least one a day, everyday until I got treatment. I had no mental trauma, no bad things happening to me, or any other thing that could have damaged my mentality (at the age of 13). These seizures were brought on by the fall and the concussion from the fall. Now for the treatment:Like I said, I knew what was wrong with me but still couldn't explain it to a doc so I never sought help from a neurologist. When I had my son I had postpartum depression so the doc put me on prozac. It took me a week or two to notice it but I STOPPED HAVING SEIZURES!!!! I had not had a seizure since starting that medication. It was blocking my ability to feel nervous, thus blocking the seizures. Then I had the confidence to go to a neurologist. He agreed and said that simple partial seizures occurring in the frontal lobe with motor trouble are linked with nervousness as the trigger. He ordered an MRI and an EEG but my insurance wouldn't cover it and I couldn't afford it. He said to keep taking the prozac if it works. I ran out a few months ago and was lazy about getting a refill. Then I started having seizures here and there and I got that refill real quick like. Of course they are gone now again. So before writing your seizures off as pseudo seizures, get another opinion. I have epilepsy, not pseudo seizures and even though they outwardly look to be psychologically related the underlying cause is a brain lesion from the concussion.For the bad:If you keep going without treatment and these seizures continue on you will have permanent damage. I have irreversible damage to my brain because I let the seizures go on for nearly 20 years without treatment. I have memory problems, problems in social situations, problems with anger, and other random things. DO NOT LET THIS HAPPEN TO YOU! Do whatever you can to make them stop. I will say it again: Do whatever you can to make them stop. See as many doctors as it takes. If you don't get help and your seizures are in your frontal or temporal lobe like mine are then you will suffer permanent damage.For the other bad:Unfortunately if your seizures are frontal lobe, like mine, or temporal lobe an EEG isn't likely to show anything because the scalp probes can't reach the deepest parts of your brain where the seizures occur. Even if you have a seizure while you are wearing the probes, it may not register. An MRI can find lesions but you better have a good neurologist with a sharp eye because a non-shalant look at the scan will surely miss the problem. My lesion is small and could have easily been missed.Please, whatever you take out of this, just know that not everyone thinks you are faking. I don't and I am medical living proof that this can happen and not be related to a mental illness or any other psychological issue. The prozac worked for me but it may not for you. I had a doctor try to switch me to zoloft last year and two days after the start of that medicine I had the worst seizure I had ever had, followed by another seizure right behind it (which is very dangerous and is a major cause for permanent brain damage). I went back to the prozac and I was fine. I am here for you. I don't believe you are crazy and I don't believe you are having pseudo seizures.

Folks, these are not non-epileptic seizures.  This is exactly the reason I was so afraid to tell anyone what was happening to me when I started having seizures.  Here is my back story:Mine started when I was 13 and fell off a horse.  I got a major concussion from that fall and the next year I started having seizures.  I didn't figure out what was happening to me until I was around 30 and decided to start researching disorders.  Sure enough I figured out I was having simple partial seizures from getting the right side of my head whacked in that horse fall.  Here is what triggered my seizures and what they are like:I had to be nervous and a cramp in my left foot was the warning.  My left arm and leg would seize up on me and I would clench my teeth really tight and my tongue would crick to the side of my cheek and my eyes would roll up in my head. (I literally looked mentally retarded).  Fortunately these episodes only lasted for around 3 to 5 seconds.  I would have at least one a day, everyday until I got treatment.  I had no mental trauma, no bad things happening to me, or any other thing that could have damaged my mentality (at the age of 13).  These seizures were brought on by the fall and the concussion from the fall.  Now for the treatment:Like I said, I knew what was wrong with me but still couldn't explain it to a doc so I never sought help from a neurologist.  When I had my son I had postpartum  depression so the doc put me on prozac.  It took me a week or two to notice it but I STOPPED HAVING SEIZURES!!!!  I had not had a seizure since starting that medication.  It was blocking my ability to feel nervous, thus blocking the seizures.  Then I had the confidence to go to a neurologist.  He agreed and said that simple partial seizures occurring in the frontal lobe with motor trouble are linked with nervousness as the trigger.  He ordered an MRI and an EEG but my insurance wouldn't cover it and I couldn't afford it.  He said to keep taking the prozac if it works.  I ran out a few months ago and was lazy about getting a refill.  Then I started having seizures here and there and I got that refill real quick like.  Of course they are gone now again. So before writing your seizures off as pseudo seizures, get another opinion.  I have epilepsy, not pseudo seizures and even though they outwardly look to be psychologically related the underlying cause is a brain lesion from the concussion.For the bad:If you keep going without treatment and these seizures continue on you will have permanent damage.  I have irreversible damage to my brain because I let the seizures go on for nearly 20 years without treatment.  I have memory problems, problems in social situations, problems with anger, and other random things.  DO NOT LET THIS HAPPEN TO YOU!  Do whatever you can to make them stop.  I will say it again: Do whatever you can to make them stop.  See as many doctors as it takes.  If you don't get help and your seizures are in your frontal or temporal lobe like mine are then you will suffer permanent damage.For the other bad:Unfortunately if your seizures are frontal lobe, like mine, or temporal lobe an EEG isn't likely to show anything because the scalp probes can't reach the deepest parts of your brain where the seizures occur.  Even if you have a seizure while you are wearing the probes, it may not register.  An MRI can find lesions but you better have a good neurologist with a sharp eye because a non-shalant look at the scan will surely miss the problem.  My lesion is small and could have easily been missed.Please, whatever you take out of this, just know that not everyone thinks you are faking.  I don't and I am medical living proof that this can happen and not be related to a mental illness or any other psychological issue.  The prozac worked for me but it may not for you.  I had a doctor try to switch me to zoloft last year and two days after the start of that medicine I had the worst seizure I had ever had, followed by another seizure right behind it (which is very dangerous and is a major cause for permanent brain damage).  I went back to the prozac and I was fine.  I am here for you.  I don't believe you are crazy and I don't believe you are having pseudo seizures.       

Folks, these are not non-epileptic seizures. This is exactly the reason I was so afraid to tell anyone what was happening to me when I started having seizures. Here is my back story:Mine started when I was 13 and fell off a horse. I got a major concussion from that fall and the next year I started having seizures. I didn't figure out what was happening to me until I was around 30 and decided to start researching disorders. Sure enough I figured out I was having simple partial seizures from getting the right side of my head whacked in that horse fall. Here is what triggered my seizures and what they are like:I had to be nervous and a cramp in my left foot was the warning. My left arm and leg would seize up on me and I would clench my teeth really tight and my tongue would crick to the side of my cheek and my eyes would roll up in my head. (I literally looked mentally retarded). Fortunately these episodes only lasted for around 3 to 5 seconds. I would have at least one a day, everyday until I got treatment. I had no mental trauma, no bad things happening to me, or any other thing that could have damaged my mentality (at the age of 13). These seizures were brought on by the fall and the concussion from the fall. Now for the treatment:Like I said, I knew what was wrong with me but still couldn't explain it to a doc so I never sought help from a neurologist. When I had my son I had postpartum depression so the doc put me on prozac. It took me a week or two to notice it but I STOPPED HAVING SEIZURES!!!! I had not had a seizure since starting that medication. It was blocking my ability to feel nervous, thus blocking the seizures. Then I had the confidence to go to a neurologist. He agreed and said that simple partial seizures occurring in the frontal lobe with motor trouble are linked with nervousness as the trigger. He ordered an MRI and an EEG but my insurance wouldn't cover it and I couldn't afford it. He said to keep taking the prozac if it works. I ran out a few months ago and was lazy about getting a refill. Then I started having seizures here and there and I got that refill real quick like. Of course they are gone now again. So before writing your seizures off as pseudo seizures, get another opinion. I have epilepsy, not pseudo seizures and even though they outwardly look to be psychologically related the underlying cause is a brain lesion from the concussion.For the bad:If you keep going without treatment and these seizures continue on you will have permanent damage. I have irreversible damage to my brain because I let the seizures go on for nearly 20 years without treatment. I have memory problems, problems in social situations, problems with anger, and other random things. DO NOT LET THIS HAPPEN TO YOU! Do whatever you can to make them stop. I will say it again: Do whatever you can to make them stop. See as many doctors as it takes. If you don't get help and your seizures are in your frontal or temporal lobe like mine are then you will suffer permanent damage.For the other bad:Unfortunately if your seizures are frontal lobe, like mine, or temporal lobe an EEG isn't likely to show anything because the scalp probes can't reach the deepest parts of your brain where the seizures occur. Even if you have a seizure while you are wearing the probes, it may not register. An MRI can find lesions but you better have a good neurologist with a sharp eye because a non-shalant look at the scan will surely miss the problem. My lesion is small and could have easily been missed.Please, whatever you take out of this, just know that not everyone thinks you are faking. I don't and I am medical living proof that this can happen and not be related to a mental illness or any other psychological issue. The prozac worked for me but it may not for you. I had a doctor try to switch me to zoloft last year and two days after the start of that medicine I had the worst seizure I had ever had, followed by another seizure right behind it (which is very dangerous and is a major cause for permanent brain damage). I went back to the prozac and I was fine. I am here for you. I don't believe you are crazy and I don't believe you are having pseudo seizures.