Home > Topics > Muscular Dystrophy UK – General discussion boards > Health chat > Medications and equipment

Changing vent settings & when

Viewing 5 posts - 1 through 5 (of 5 total)
  • July 29, 2015 at 10:53 pm #75631
    Changing vent settings & when

    Hi

    Not been on the form much but had lots going on.

    Had a failed Tosca so having another one this week. Wondering if people know before the medics when there vent settings need changing or what symptoms do you develop. Mine was questioned as possibly needing changed despite ok blood gases at clinics but now I’m keen regardless of result to having a slight increase to see if I obtain benefit. Being sleepy during the day, falling asleep in public and not so refreshed in the am at present.

    Thanks in advance

    Gill

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    July 30, 2015 at 7:46 am #96731
    Re: Changing vent settings & when

    Hi ya

    As well as the things you mentioned, there’s headaches when you wake up and difficulty processing things/making decisions. My Hosp use a scale (Epworth Sleepiness Scale) when I go in for a sleep study, I have a questionnaire to fill in and I think it adds to the picture along with blood tests and the TOSCA.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    August 3, 2015 at 5:46 pm #96732
    Re: Changing vent settings & when

    Sleeping or losing time during the days is a sure sign of the vent settings or vent type not being right. the issue could also be the age of the machine or its position in the room. I shuffled my furniture and vent was moved away from a window that was open all night to a less ventilated corner near a radiator. it made a difference. the effectiveness of humidifiers is also an issue.

    even though your sleepy during the day the fact that your levels are recovering would maybe suggest its the machine particularly if your not smurfette like during the day particularly if your not blue or ghostly white.

    my symptoms are sore heads, constant full blown migraines. blue purple or deathly pale skin. eating less. and general breathlessness and finding spending more of the day on the vent than off it, and if its really bad nose bleeds.

    Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    August 4, 2015 at 7:12 pm #96733
    Re: Changing vent settings & when

    Did an epworth scale myself online and my score has gone up. Don’t have Tosca result yet but should know this week. On this occasion I think it’s me and not the machine. Last time it was machine and I kept telling them to no avail this time around I have a different doc who I get on well with and I believe will listen to me. Don’t tell myself just now. Waking less then refreshed in am, morning headaches, daytime sleepiness and falling asleep inappropriately. Machine in the same place it’s always been.

    Fingers crossed it’s sorted quick as I’m due surgery and my vent settings need to be optimal

    miracle77
    Participant
    Posts: 267
    Joined: 17/08/2011
    August 5, 2015 at 5:58 pm #96734
    Re: Changing vent settings & when

    Have you been to the new unit yet. I’m going to Gartnavel Resp on Monday. But the New hosp next month.

    Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
Viewing 5 posts - 1 through 5 (of 5 total)

You must be logged in to reply to this topic.

Keep in touch