It is getting close to my 22th anniversary of having neuroleptic malignant syndrome. I have never talked with anyone else who has experienced this and I wonder if the OP is still around. Back then I was diagnosed as “Depression NOS” or “Depression with psychotic features” or “pre-schizophrenic.” Doctors kept trying antipsychotics on me and I kept having those extrapyramidal side-effects of stiffness and horrible restless body sensations. On the morning my mother gave me my first dose of prolixin, everything changed. I knew within minutes that something was wrong. I had a strange disgust/sinking feeling in the pit of my stomach, and my body started to feel different. I told my parents something was wrong and that it had to do with the medicine, but they didn’t believe me. They decided we should take a car ride. Walking to the car, I was sweating and my head was pounding, my body felt stiff. As we drove, I could feel my muscles seizing up, while I had chills and was sweating profusely. I felt my thoughts becoming harder and harder to verbalize, and kept asking for help, saying there was something wrong, until it was very difficult to speak. My thoughts were not working properly in a very new way. It was if they were slowing down and getting further away.
When we returned home, my mother, who was frustrated by me acting like I couldn’t move normally and my “agitation” suggested I call a friend. She had to help me dial because my body wasn’t working right. While on the phone, I had a hallucination (not a normal occurrence for me) that my mother was outside and was hit by a car. I tried to tell the person on the other end of the phone, who was shocked for a moment but then realized that my strange voice and this hallucination were connected. He asked to speak with my mother to ask her to seek help for me. She didn’t. Within a few hours, my consciousness decreased and I fell into a catatonic state that lasted for about a week. During that time, I was not able to speak, move, or function independently. I also had a fever. My parents stopped giving me the drug after three doses but did not seek treatment, as they considered these new symptoms to be confirmation that I had schizophrenia. I remember the moment I “woke up” from this nightmare: I hallucinated a pilgrim coming from some invisible place into reality and I tried to speak to the pilgrim. The sound of my voice out loud startled me, and I became self-aware. I was kind of impressed that I had hallucinated so vividly, but then I realized it wasn’t good to hallucinate and that hallucinating was something a “crazy” person might do.
After this event, my body felt very stiff to me, and my thinking seemed much slower than it had been before. Later that year, routine blood work revealed alarming kidney and liver abnormalities that were not typical for someone my age–I have never been able to know if these were related to the NMS or not. I was not formally diagnosed with NMS because my parents did not seek treatment, so it’s possible that I didn’t actually have NMS. But my symptoms match the profile. The most traumatic aspect of NMS was not understanding what happened. For years I thought it was a reflection of me being weak and “messed up.”
Two years after my experience, I had general anesthesia to remove my wisdom teeth and had an adverse reaction to the anesthesia–weakness and short term memory loss for several days. I also had an adverse event to an antiviral medication that is also a neuroleptic. Later on, through a therapist, I learned about NMS as a likely explanation for that experience.
For the OP, know that since you have had NMS, it is important that you place a note that you had NMS in your medical file, as anesthesiologists must be careful with you.
In the end, it turned out that I don’t have a psychotic disorder; I had and have PTSD and dissociative identity disorder. I have sought treatment for these and am finally improving after all these years.
Also, for the OP or others, I would like to hear about what NMS was like to you. Did you experience delirium or loss of consciousness? When it was over did your body stay stiff for some time, and did your thinking seem slower?
Finally, for anyone suffering from similar effects, you might look into neurofeedback as a way to heal from this horrible experience.
that sounds awful. I was discharged with a neck brace from contorting so much. It’s been much harder to deal with medication in general afterwards and before was no picnic either. I remember being stiff and disoriented for a long time afterwards.