Viewing 20 posts - 61 through 80 (of 81 total)
  • #77970
    Re: POLL – Non-invasive Ventilation

    Has anyone noticed any sinus issues since starting NIV? I seem to have a constantly blocked nose and get regular sinus headaches – I’ve recently started using a sinus spray (a hayfever one) which is helping a little. I just wondered if anyone else has noticed this?

    catherine
    Participant
    Posts: 24
    Joined: 08/02/2011
    #77971
    Re: POLL – Non-invasive Ventilation

    Hi Catherine,

    I have experienced this recently. It was worse when I rolled over to my left side and felt like I had pepper exploding in my nose and behind my eye. It went from affecting me two or three nights a week to every night and to a greater extent that I couldn’t sleep. The only way I could stop it was to lie flat on my back, which is not a comfortable position for the rest of me. I went to my GP and se prescribed a course of antibiotics as it sounded like I had an infection and a steroid nasal spray. I also used my humidifier with my ventilator more often. All of this seemed to help but I still experience it every now and again. I would also be interested to hear how others have dealt with this problem.

    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
    #77972
    Re: POLL – Non-invasive Ventilation

    I get alot of sinus trouble too. one GP had the theory that it is made worse do to nighttime reflux. he decided that once the skin in the nose was burnt with bile juice on a regular basis that the nose tissue would be more liable to irratation.

    I also suffer from nose bleeds now and again. the night time was are.. interesting . vent has a habit of spraying the blood accross my pillow and wall.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #77973
    Re: POLL – Non-invasive Ventilation

    Hi, I am new to Talk MD forum, I have just discovered this discussion about Bi pap. My 2 and a half year old son has been using Bi pap ventilation since the age of 5 months. He is not very tolerant of the mask though and we have had a real struggle to ensure he wears it. It is very interesting for me to hear how it affects you during the day without it. It shows how vital it is. He has always vomited a lot but I did not know this could be related to his Bi pap. I have begun to keep a sleep diary which hopefully will help with consultant visits, and build up a pattern showing the difference in him when he has a good night. I think I am going to find this forum invaluable. Its so nice to listen to other peoples experiences, who are in a similar position, as we do not know anybody in our area with this type of condition. Any suggestions for suitable power chairs for a child, as we have wheelchair clinic on monday and we are hoping for an indoor/outdoor power chair. He currently uses a power chair which doubles up as a buggy, and he is really good in it. Would welcome any advice. Thanks.

    jasmine1
    Participant
    Posts: 16
    Joined: 27/05/2011
    #77974
    Re: POLL – Non-invasive Ventilation

    @catherine wrote:

    Has anyone noticed any sinus issues since starting NIV? I seem to have a constantly blocked nose and get regular sinus headaches – I’ve recently started using a sinus spray (a hayfever one) which is helping a little. I just wondered if anyone else has noticed this?

    Hello, – yes just this last 3 weeks I started having dreadful migraine type headaches – pressure around tops of eye, cheek bone and pain down my neck. I also started to get a stuffy nose to the point I couldn’t breathe to trigger vent at all. I hate that so much that I had to think of something to do. I have used Clarityn for hayfever (I take it because it seems to make it easier for me to breathe and cuts down on lung gunk that clogs me up). I don’t get any worse or better with the varying pollen count so it seems MD related rather than an allergy? I never had headaches or sinus pain in my life until now. I couldn’t move for the pain and ended up just sitting still with a bag of frozen beans around my neck!!

    Anyway… I tried the Otrivine spray which is great – works in about 20 seconds and completely clears my nose. However, it does eat away your nose and cause nose bleeds (it says don’t use for more than ten days). So I started thinking of something else to take. I then tried nose drops of saline – £1 from chemist!! A few drops with head tilted back loosened dried material and I could blow it out (well I can’t blow but use my cheeks to puff a bit of air through my nose). Just last week I bought a saline nose spray – in a can with a little nozzle. It’s just salt water pre-made and sterile. You can hold down the squirt for a few seconds or for a longer time to ‘flush’. I though it would feel like getting water up your nose like when swimming or drowning under a shower!! It isn’t anything like that and I use it every night followed by a few puffs of vics nose inhaler.

    I only used the Otrivine once this week so the saline seems to keep my nose moist and not irritated (and not swollen or dry from the vent/air). It’s not cheap at £7 a can but it’s not bad as I think it will last a few weeks.

    I’ve still got a few day headaches but nothing that makes me feel sick and dizzy any more like a migraine.

    I think the major weather changes and pressures make a really big difference as well – I feel like a weather barometer!

    hope you find something that helps.

    criptic
    Participant
    Posts: 307
    Joined: 15/03/2011
    #77975
    Re: POLL – Non-invasive Ventilation

    does anyone watch couger town


    anyone..

    anyways one of the characters usedd a neti kettle aka nose kettle to clean sinus

    just a thought

    http://www.ehow.com/about_5128221_using-kettles-treating-sinus-infections.html

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #77976
    Re: POLL – Non-invasive Ventilation

    Has anyone tried the Liberty mask? I use the Nippy+ vent and had terrible trouble finding a mask that fitted the bill. Eventually got the Liberty (small) and it is great. it is the one with the nose pieces and foundif they were too big they caused terrible nose/sinus problems but the small nostril pieces does the trick.

    I am interested in the wireless doorbell to attract attention. How do they work and where do you get them?

    Allybongo
    Participant
    Posts: 4
    Joined: 03/06/2011
    #77977
    Re: POLL – Non-invasive Ventilation

    @allybongo wrote:

    I am interested in the wireless doorbell to attract attention. How do they work and where do you get them?

    Any DIY store I think. I have an electronic front door and we also have a regular wireless doorbell. One thing we found though was sometimes they can chime based on a signal coming from a neighbour!! My little one hubs made from Maplins is a tiny box with a button and a speaker which is just loud enough for not to be woken by a mega noise!! It’s not wireless so won’t interfere with our wireless door bell! Also, I choose a button and position that I could easily press so that was useful. If you don’t have a wireless doorbell already then i should be fine – otherwise get one where you can choose different frequencies! Otherwise, you might press it and the neighbour runs to their door lol.

    criptic
    Participant
    Posts: 307
    Joined: 15/03/2011
    #77978
    Re: POLL – Non-invasive Ventilation

    Thanks for your help. I think it’s my hayfever in conjunction with my vent, as it seems to be a lot worse on high pollen days. I have never had a humidifier in my 6 years of using NIV – do you all have one? Is it worth getting one do you think?

    Also, a quick one for those using NIV in the day as well as at night – how did you know that you needed to start using it in the day? I’ve been feeling more tired lately, but I don’t know if it’s because I’ve been so busy, and getting headaches a little, but I don’t know if they’re sinus headaches or CO2 headaches like I used to get before NIV.

    Thanks! :)

    catherine
    Participant
    Posts: 24
    Joined: 08/02/2011
    #77979
    Re: POLL – Non-invasive Ventilation

    @catherine wrote:

    Thanks for your help. I think it’s my hayfever in conjunction with my vent, as it seems to be a lot worse on high pollen days. I have never had a humidifier in my 6 years of using NIV – do you all have one? Is it worth getting one do you think?

    Also, a quick one for those using NIV in the day as well as at night – how did you know that you needed to start using it in the day? I’ve been feeling more tired lately, but I don’t know if it’s because I’ve been so busy, and getting headaches a little, but I don’t know if they’re sinus headaches or CO2 headaches like I used to get before NIV.

    Thanks! :)

    I have the humidifier and think it is well worth having as it saves dry carpet mouth in the morning and I always feel the green gunk is worse and harder to clear when I dont use the humidifer.

    I basically need my vent anytime I need to lie down but I do feel that it clears a sore head better than struggling with pain killers alone. When Im real tired my lips and finger nails go blue thats normally an indcator that my co2 levels are dipping and I need a cat nap. I try not to be lazy and hang out on my vent to much during the day but do have regular 10 minutes just to relax a little and get my breath back. depends on what im up to and what the weather is like. ie today in not so sunny scotland it is heavy rain but very clamy making it sort of hard to breath.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #77980
    Re: Non-invasive Ventilation.. new Sleapweave Mask

    After months of waiting for hospital purse holder to approve ordering new mask. its arrived :D

    Mask is called Sleap weaver soft cloth nasal CPAP mask with Zzzzephyr seal. (dont know what that is but it sounds cool-Zzzephyr 8-) )

    View the Blurb
    http://circadiance.com/sleepweaver.php

    Collected it yesterday from the Resp Nurse and so far all be it on one night sleep it seems really good, kept having to check it was on. dont know how I will feel at the end of the week but its the best first night on a new mask Ive ever had. and it fits a small head :lol:

    Right the positive stuff and how it works

    Basically the super soft material mask (feels like micro fibre pants :oops: ) fills with air just like a ballon and this creates a seal around nose. first time a one size fits all actuall y fitted me.
    Its also super light and doesnt have that weird new mask chemical smeal.
    Comes in about 5 groovy colours.
    Less bits to break off, should pack better.
    No hard bits to rub head, nose or upper lip.
    The dirty Air CO2 vent holes are tiny pin holes accross mask so you dont get that annoying jet of air that give the person next to you a sore neck.
    Generally found the mask air feedback alot quieter.

    The Neg so far (if I need to be picky)

    Im used to the tubbing going up over my head and being anchord to my pillow. this one goes down the way, will have to adjust.
    A little difficult for me to get it on myself (ive been used to a headgear with no sides)

    thats about it, apart from my cat keeping trying to burst it as it inflates.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #77981
    Re: POLL – Non-invasive Ventilation

    Oooh I like the look of those, I am used to tubing like that. How long do they last I wonder, do you know?

    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
    #77982
    Re: POLL – Non-invasive Ventilation

    @sar78 wrote:

    Oooh I like the look of those, I am used to tubing like that. How long do they last I wonder, do you know?

    Doesnt really say in the leaflet or care DVD that came with. only that it points out that the tape that joins the material to the platsic swivly bit that fits to tub will need to be replaced eventually after repeated washing. The black head gear will eventually loose its streach I would imagine but does have lots of room for adjustment before its done.

    Not sure how the mask itself will weather as Ive never had anything like this before. Will let you know by the end of the week if its kitty proof, miss kitty had to be forcibly removed from my room last night as she kept trying to pull it off.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #77983
    Re: POLL – Non-invasive Ventilation

    Re the humidifier – I would say that if you don’t need it it’s handy not to have to have yet another power point in use and not to have to bother filling it. I have tended to not use it but am now diligently using it every night as have had problems with shooting pains in my teeth which between myself and my dentist we have diagnosed as sensitive teeth exacerbated by the drying effect of dry air getting to my teeth – the humidifier definitely helps prevent it. If it wasn’t for my teeth I wouldn’t bother with it except for when I have a cold when it def helps.

    I have had an issue with a runny nose – not a cold, just an annoying tendency to increased drippage – it doesn’t happen all the time but def wasn’t this frequent before NIV started. Don’t think humidification makes a differnce. Assume it’s just due to increased irritation in nasal passages.

    I have an LTR swift resmed mask – nasal pillows. Not perfect but not bad and big bonus is I can put it on myself – I was really worried about that when I was first told I needed NIV as I live on my own and have not had need of a care package so far….

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #77984
    Re: POLL – Non-invasive Ventilation

    hi Ailsa

    The teeth pain is common if your a mouth breather and sook air back in thru your teeth. the nose drip could also be due to mouth breathing and the body is trying to make it better my causing more moisture.. the humidifier really does help, try and keep with it.

    I’ve had a few different humidifiers over the years. my current one slots right on the front of machine with no extra plug needed it also has its own thermostat to alter the water vapour temp to suite environmental room temp.. You can also get none plug in cold water ones…

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #77985
    Re: POLL – Non-invasive Ventilation

    has any one tried a hose lift for the vent tubing. my tube keeps getting trapped down behind my adjustable been and suashing it..

    http://www.eu-pap.co.uk/cpap-hose-lift.html

    not mega dear but before I blow my £10 gov xmas bomus, i would like to know if it works

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #77986
    Re: POLL – Non-invasive Ventilation

    No, but i should be buying shares in that company! I had considered it – well two things actually. 1) getting a shorter more flexible house that doesn’t have a mind of its own (which drives hubs mad at night because it wiggles and curls up in every direction but where you need it to go) and 2) thought of getting the clamp things you feed it though on a bed rail but to be honest, string and ribbon is working for me around the bed. Looks like some mega bondage contraption lol :lol: :shock:

    One thing I have seen which might be useful are velcro cable ties – think I will use them in future to cable it to the bed. Same on my wheelchair.

    One thing I found this week (having had it in all manner of places, height wise) is that the higher or lower the tube the more I was getting back firing from my machine so I wonder if a really raised tube would cause a problem?

    criptic
    Participant
    Posts: 307
    Joined: 15/03/2011
    #77987
    Re: POLL – Non-invasive Ventilation

    @criptic wrote:

    No, but i should be buying shares in that company! I had considered it – well two things actually. 1) getting a shorter more flexible house that doesn’t have a mind of its own (which drives hubs mad at night because it wiggles and curls up in every direction but where you need it to go) and 2) thought of getting the clamp things you feed it though on a bed rail but to be honest, string and ribbon is working for me around the bed. Looks like some mega bondage contraption lol :lol: :shock:

    One thing I have seen which might be useful are velcro cable ties – think I will use them in future to cable it to the bed. Same on my wheelchair.

    One thing I found this week (having had it in all manner of places, height wise) is that the higher or lower the tube the more I was getting back firing from my machine so I wonder if a really raised tube would cause a problem?

    good point about the tub height. i find i cant breath normal if the tub snakes down side of bed lower thanboth me and vent.

    the NIV Nurses get me the velcro clips but only can give me 2 at a time as the are pricy. thye dont last long the clip keeps coming off velcro.

    have sent them a pic of the tub raiser, I m either crushing tub in bed or wake with it around my neck. my cat even sits and stands on it to wake me up.. :lol:

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
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    Posts: 1,002
    Joined: 20/09/2010
    #77988
    Re: POLL – Non-invasive Ventilation

    i dont have experince about that…
    But i interest reading yours… :P :P

    mike65
    Participant
    Posts: 3
    Joined: 15/02/2012
    #77989
    Re: POLL – Non-invasive Ventilation

    When I was first put on Bi-pap my morning headaches and nausea stopped and I was much healthier. The number of colds and chest infections reduced. It took a little time to get used for me too, the skin on my nose broke down and I was also plagued by the air escaping and blowing in my eyes. Now it is just part of my life, my routine and I am very glad that I have it.

    jenifferhomes
    Participant
    Posts: 2
    Joined: 12/07/2014
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