My father was diagnosed to have PSP four years ago.
He had two attacks of severe shortness of breath, with four days in between, those attacks awakened him from sleep in the very early morning he was not communicating with us at all when it happened, it seemed to be of upper airway obstruction, he was clinching his teeth with a sound like screaming and rapid respiration at first then he stopped breathing and turned cyanosed. It took few minutes during which we were trying to ask him open his mouth or breath properly but he had stairing look and didn't respond.
The first attack I tried to put him an airway but couldn't because of severe clinching the teeth until he had apnea and collapsed I gave him few mouth to mouth breaths then he started to breath and put the airway and he was transferred to hospital. In the ambulance he was breathing normally and spontaneously but was unconscious. In the ER he regained consciousness and after sometime of observation he was sent home.
The second attack occurred four days later but he didn't have apnea and I failed to put the airway because he was clinching severely on his teeth. The rescuer managed to put the airway and transferred him to the hospital unconscious and breathing hardly. This time he was admitted to the hospital as he remained unconscious until the next day with severe agitation if anyone tried to touch him or make any stimulation.
After one day he regained his consciousness and back to his baseline level of consciousness and alertness.
The problem is that he is having every night for four nights, nearly near dawn, similar attacks ( at least once per night) with nearly same severity that is relieved by inserting an airway. Until the last night he had the attack with severe agitation while the airway is already in and was relieved by 1 mg of midazolam.
After midazolam he had nice sleep with no snoring or apneas or obstruction.
We are confused and afraid of having those attacks at home doctors said it could be seizure or a spasm in the upper airway muscles as a complication of PSP. and I am wondering did any one experience such thing as a complication of PSP.
He is on anti epileptic medications now but the attacks didn't stop and there is a trend to do tracheostomy to by pass the upper airway and stop the attacks
The attacks are very frightening and having tracheostomy will end the communications between us also he lost his handwriting abikity and I don't think he will be able to talk after tracheostomy . Very hard decision to take !!