Being a past practioner I'm torn as what I should do so I'm asking advice?
Randy, I agree. And we are never going to change how the majority population treats those with epilepsy or any other disorder or the mental "illnesses" (I put that one in quotes because the psychiatrists and the like have been demanding for decades that the international committee which decides the medical terminology refuses to listen to why it is important to not use the term illness when talking about an incurable mental condition. This is after all something that they changed decades ago when referring to the incurable physical disorders. Once upon a time, epilepsy was referred to as a mental illness (though many will not do the medical historical research to see this fact).
Though soon I hope the research is complete on the fact that the EEG does not always indicate when an epileptic seizure is happening so that at least some of the neurologists (those who keep up-to-date on the published research on neurology and do accept that a man-made device can make mistakes just like human beings do) would recognize this and stop telling those who have one while connected to an EEG that does not indicate any activity that they have "pseudo seizures" (another problem that the neurologists have no problem using the new titles for the epileptic seizures but refuse to call these seizures as Psychogenic Nonepileptic Seizures (PNES).
NOTE: I know that the research is going on (from looking on the NIH current research.
Now, there are some neurologist who simply ignored the training on bedside manner and other doctors and nurses who might simply be burned out or tired and thus are so blunt and rude to patients. However, just like the effort to get the doctors to use PLAIN ENGLISH (rather than medical terminology) when talking to patients and stop intimidating patients such that they many are too afraid to ask a question.
NOTE: I know of this fact because when I was working at Massachusetts General Hospital the director of Treadwell Library was on the committee at MGH seeking to remind at least the new doctors to do so. We were show the video that they created. An example is the use of the word hypertension (instead of high blood pressure) has many of the patients interviewed thinking of hyperactive. The research of the committee pointed out that the average American has the scientific vocabulary of a 4th grader, thus Plain English is important. And most patients are nervous and intimidated when going in to see a doctor, thus a doctor should be seeking to make the patient seem more comfortable to ask them questions. A patient should know the name of the medication or at least what it is for rather than only knowing them by their color and shape when it comes to which they should be taking each day.
I have had epilepsy almost all my life and I’m one of the lucky ones who hasn’t experienced rudeness, harassment, criticism and ect. But, when I hear of many others going through what you’re experiencing, it angers me much.
These Dr.’s and nurses need to take a course on politeness and Epilepsy. When we are in the hospital or clinic, we are the patient. We go to get help with our health issues, not be abuse, neglected, harassed, and criticized. People are being told that they don’t know what they are talking about. They are imagining things. They are looking for attention and many other comments, trying to make everyone with epilepsy, sound as if they’re dumb.
Just hearing all this, crushes my heart. The closest to this I have experienced, are the kids, and people in the public, who don’t understand or truly know what’s happening to me.
Go to a major medical university campus that has an Epilepsy Monitoring Unit. One week of constant eeg and supervision. I went to Mayo Clinic Jacksonville FL Team is outstanding and the financial aid department has been providing me much needed help
If you are in an absence seizure, then it is not your conscious mind that is in control, thus while you would never do so when your conscious mind is in control, it is not here.
And I have no idea what level of training that a MSN (as compared to an RN) receives with regards to epileptic seizures, but I know from talking with co-workers when I was working at Massachusetts General Hospital who were RNs, they explained that their level of training with seizures is not the same of an MD, thus they do not know to recognize all of the types of epileptic seizures. They know how to treat a seizure and especially everything that is necessary to do in terms of the potentially deadly seizures. However, they cannot always recognize when a patient is in some forms of a Focal Onset Impaired Awareness Seizures (complex partial seizures). And I typically have a combo package whenever I have a full seizure in that it is immediately followed by a Focal Onset Impaired Awareness seizure, thus I am getting up off the floor, but any interaction that I am having with anyone present is not my conscious mind. I have no aura before a full seizure or Focal Onset Impaired Awareness seizure, thus the only way that I know that I have definitely had one is if someone else has witnessed it and tells me the details. One of my sisters, one of my health proxies, is at my appointments with my neurologist in order to inform him about the details about these seizures. And I have suffered severe brain damage to the memory portion of my brain, such that my memory recall is almost completely unreliable. Thus, even though there has never been any proof that I have lost any memories, it can take anywhere from seconds to decades before I can recall a memory.
Now, if you ask me if I would feel guilty if I insulted someone nevermind assaulted someone while in the seizure, I would tell you absolutely. Even though back in high school when they were being called "fainting spells" -- I was not diagnosed with epilepsy until 17 years later--I had decided that there was no way I was going to get a driver's license because I would not be able to live with myself if I "fainted" while driving and hurt or worse killed someone because of it.
And am now seeking a new neurologist but hard to find one that excepts my insurance and will except other Dr diagnosis or they start all over with tests ect instead of records I'm tired of always starting over while same conclusions are always reached. While in the meantime I wake in those hospitals being treated badly. I have even had to prove my degrees and experience just to be treated and shouldn't have to at all which to me seems horribly wrong
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