Leaderboard

It was about a year and a half ago that I met the ‘kid’ on the video during a patient day in the neurological centre. Although his young age I was surprised how much he already knows about CH, but also that he was frank and open about the things science does not know yet. He said that O2 really helps, but they just do not know why?, is it because of the cold airflow up the nose, or that there is somewhere in our system a ‘switch’ that signals that enough O2 is in our blood and that the blood vessels can be contracted again. Anyway, they would like to start conducting scientific studies in a cross functional way, combining neurology between CH and Sleep, as they already highly suspect that there is an interaction between them. I said I would like to list for this because I am chronic, have severe OSAS and both my neuro’s also have the impression that these things tie together. Insomnia is a condition they know is related to this too. In the past years I’ve taught myself not to lie on my back as this blocks my airways in my sleep, I do have a custom designed dental brace that I wear at night to prevent obstructing my airways, but a CPEP can be used also if you suffer from apnea. Also during the weekend, my wife and children are watching over me not to fall asleep mid day as this will inevitably lead to a very rapid REM sleep and CH attack. Anyway, this young neuro is very ambitious and has the support of one of the leading neurological centres here in Holland. I do hope that in his lifetime he is able to crack the CH puzzle, maybe too late for us, but at least for later generations. Alex