Overpots

@Miraclemaker11, It sounds like you have assembled quite a team of doctors to treat your son. Is there one who has taken the lead to coordinate care? You mentioned fatigue and low blood pressure being among the most significant factors. With autonomic dysfunction, sleep can be a big problem. I have found that working to improve sleep often helps daytime symptoms. What have the doctors suggested to treat his underlying fatigue? Excessive norepinephrine activity can cause physical fatigue which in turn can trigger alpha-adrenergic rage. The problem seems to come from a failure in the rhythm of the norepinephrine cycle. When norepinephrine levels fail to drop during the night, the brain can't properly rest. This not only disrupts sleep but can cause the blood vessels to remain constricted. Then you have a cycle of low blood volume which then contributes to poor circulation, cold extremities, dizziness upon standing, tachycardia, and exhaustion. Perhaps you could ask about clonidine? When given at night, clonidine may provide a break from the norepinephrine release plus it has the added benefit of dilating blood vessels which may improve blood volume- and promote sleep. You are correct that the autonomic system is less than completely understood by many doctors. Because it has such a significant presence, and affects a variety of organs, this complexity requires specialized knowledge. I have found that after a bit of education about what's going on, primary care physicians as well as other specialists can become great partners in helping you on your way to healing.

This is my first time answering a post, but your message really struck me. Asking for help takes courage! Especially when living with a chronic illness-or caring for someone with one. It sounds as if your son is experiencing one of the worst side effects that POTS has to offer, especially for young men with autism. There is a hard reality that doesn't make sense, but it seems, many autistic young adult men develop a type of mental illness that presents in a similar way to a bipolar rage. Through many adrenergic rage episodes, their brain becomes wired to the point that it takes very little to "trick" them into their next swing. As a psychologist, you have likely encountered patients that have bipolar of a more "traditional" sort. Bipolar and POTS in addition to having autism is not the same as a standard POTS presents, IMO. This POTS/ autism plus bipolar is much darker and more severe, IMO. I am sorry to hear that the specialist refused to treat your son. That so discouraging! If your son's aggression is as bad as I have seen, I do unfortunately understand. Knowing the right way to communicate with patients that are hurting and in need of a compassionate caregiver is critical. Did the specialist at least recommend any type of treatment? Were you referred to a psychiatrist that is more experienced in handling aggression and violence? The primary goal is generally to treat adrenergic rage reactions from becoming "psychotic" by blocking the beta-1 type receptor in the heart and brain. This helps to prevent excessive adrenaline production, which could then help with your son's chronic fatigue as well. Unfortunately, adrenergically-driven rage reactivity is difficult to control. You are doing your best as his dad and likely this extra responsibility is overwhelming for you. I do wish the very best for your son and would recommend your reaching out to a neurologist or psychiatrist for further treatment. Healing is a journey and we can't do it alone. We need support no matter who we are and what the situation may be.