My mother was listed as my emergency contact at my neurologist's office. I had a seizure early in the morning and had to go to the emergency room. My neurologist's nurse called my mother and discussed my condition in great deal with her. I did not sign a release of information to my mother.
When it comes to an emergency contact under HIPAA you are giving permission to release information regarding the situation to that person you identified. NO provider is going to call an emergency contact and say "This is Dr. Jones office and we are caring for Jane Doe who designated you as their emergency contact person. There is an emergency. Have a nice day!" Then hang up. The panic that would cause would be unimaginable.
I only wanted them to call her if I was dead. I did not want my mother to be called at all otherwise. My mother barely knows me. I don't get along with her. I don't even spend time with her, but I would like her to know if I'm dead.
I have to walk because my mother will no longer give me rides.
You are telling two different stories. Originally you have no relationship with your bother and barely know her and later you are lamenting the loss of family relationships. Clearly there is more going on in the family dynamics than the issue with this doctor's office and clinic.
Was the disclosure of my PHI to my mother a HIPPA violation? Could this be the reason why the clinic will no longer treat me?
I do not believe it was a HIPAA violation and if it is you cannot sue for it the recourse is a complaint through the Department of Health and Human Services.
Early you stated you had psychogenic seizures. This is most likely why the neurologists office is no longer treating you. I have been in neurology for almost 30 years and have epilepsy. While pschogenic is an outdated term (currently physicians use non-epileptic behavioral events) the good news is you do NOT have seizures or epilepsy. You are NOT going to die from these events. That does not mean they are not very real to you and are causing a lot of anxiety. It does mean that you do not need the services of a neurologist because this is not a neurological problem.
Stress manifests itself in many ways: chest pains, hyperventilation, hives, and for some what appears to be seizures. How a person copes with that stress is key. Some drink or use drugs, some cut themselves, others have non-epileptic events all of which alleviate the anxiety and stress in the short term only to have it happen again and again. Until the underlying reasons for the anxiety and stress are confronted and coping skills put in place the cycle repeats more often and for longer periods of time.
PLEASE HELP ME!! I DON'T WANT TO DIE!!! THESE PEOPLE HAVE RUINED THE GOOD RELATIONSHIP THAT I HAD WITH MY FAMILY AND NOW THEY THINK THAT IT IS APPROPRIATE TO LEAVE ME TO DIE!!! I DON'T WANT TO DIE.
Take a deep breath. The good news is you are NOT going to die no matter how much your anxiety is telling you that you are. I do not know what medications you are taking but anti-epileptic medications are not going to control non-epileptic events but they are not medications you stop abruptly without consequences.
What should I do?
The best recommendation I can give you is to contact your family practice doctor immediately. They can arrange for a temporary refill of medications and to set up a tapering schedule for any that you do not need. Believe me you DO NOT want to be taking anti-epileptics unless you have neurological seizures. The medications are quite powerful and have some very nasty side effects.
The next thing I would ask him/her for is a referral to a reliable psychologist that uses CBT: cognitive behavioral therapy. I have had many patients who get past the non-epileptic events by undergoing as little as 12 weeks of CBT. You can get a grip on this and take control of your life back but you have to embrace that you do NOT have epilepsy and there is work to be done to get control back in your hands instead of having it run your life. Good luck, you can do this.
"That's just my opinion, then again I might be wrong." Dennis Miller