I have now been identified as having another rare and bleak disorder. The scary bit is it has nothing to do with my Chiari Malformation and it’s problems – the only thing in common is that my BRAIN is responsible for both.
my dysfunctional brain.
Central Hypoventilation Syndrome
Congenital central hypoventilation syndrome (CCHS) is a rare lifelong and life-threatening disorder. CCHS affects the central and autonomic nervous system which controls many of the automatic functions in the body such as heart rate, blood pressure, sensing of oxygen and carbon dioxide levels in the blood, temperature, bowel and bladder control, and more. The most recognized symptom of CCHS is the inability to control breathing that varies in severity, resulting in the need for life-long ventilatory support during sleep in some patients or all the time in others. There are estimated to be 1000 – 1200 cases of CCHS world-wide. CCHS affects males and females equally. Currently, there is no cure for CCHS.
I didn’t NEED more but i do know that my fatigue and my hours of genuine exhaustion are getting MORE and MORE…sleeping now is generally a long night and a few times a day. This leaves:
- little “human” time ,
- little time to be a mammy,
- rare energy to plan ahead,
- and fear.
in layman’s terms? It means my AUTONOMIC BRAIN – that’s the bit that controls the involuntary functions, is forgetting to make me BREATHE in fully, and out fully.
Autonomic neuropathy is a group of symptoms that occur when there is damage to the nerves that manage every day body functions such as blood pressure, heart rate, sweating, bowel and bladder emptying, and digestion.
That messes up the levels of my blood gases- oxygen and carbon dioxide…and at night the effect is my levels of OXYGENATION goes into mid 80%s.
I will be using a VENTILATOR. ASAP.
to keep me alive.
WHAT IS MY OUTLOOK?