failure

[bigdave]

oh well sorry to say, after 3 weeks of feeling absolutely terrible , i'm ashamed to say i've given up, woke on sunday morning , head all foggy , headache, that i've had every day since i started, trembling , almost as if i was hypoclicenmic, in fact i had a piece of chocolate and the trembling stopped. i felt more tired with machine than without, more grumpy than i've ever been in my life, etc etc etc, got appointment at papworth in a week or so, but have to say, i feel a lot better after 2 nights without machine. Help please.

[Berneta]

You haven't failed

Hi Dave,
You haven't failed. You just haven't found the right mask and setting that you need. It takes time and I know sometimes everyone has felt like they just can't go on. As for feeling like your blood sugar is low-- that is possible. I can tell you that as a Diabetic who uses the CPAP--the CPAP will not keep me asleep if my sugar level drops too low. Its like I have an automatic wake up alarm. Have you ever had your blood sugar tested? If not--you should So if you happen to really have blood sugar lows--that can be a big part of why you haven't been able to use the CPAP so far. Lack of oxygen can wake you too. I know how difficult it is at first--but now I don't think I could get through the night without mine. It didn't happen in one week or 3 weeks--it takes time. Keep trying please. Take a couple days off it, if you feel you have to--but then try again. Go back and try some other masks. Maybe you need a different kind. We can't all get by on the same kind of mask--thats why there are so many different kinds of them. What have you got to lose by trying again? You are losing sleep either way you look at it. Also have your oxygen level checked--you may need to use oxygen too with your CPAP. Some people do need an oxygen supplement. Please don't give up. It may take a month to get used to the whole thing--but it really really is worth it in the end. I don't know anyone who had it easy at first--just don't give up. Go back and tell them the problems you are having and INSIST on trying something else. You may even need to do another sleep study. Just remember that the CPAP is WORK at first. Getting things right can take time. If you can't do it for yourself--than do it for your family. Berneta XX

[bigdave]

thank you as usual Berneta, i dont want to give up , but just feel so Ill, I will certainly go to clinic , and see what they can do to help, thanks again Berneta.x

[ohcrob]

it doesn't get any better but u do get used to it! i feel i'm just as tired as before, however i can't actually sleep at all without it (habit now i suspect). it doesn't work for all of us i'm afraid.

[ElleCee]

Hi Dave,
I sent you a private message
Lorraine

[shuckie]

Hi Dave

I've had similar problems and feelings myself over the past several weeks since starting treatment. Struggling to get the mask to fit properly, having to take it off because I felt suffocated, having a dry mouth when I have been able to keep the mask on. Waking up and taking the mask off in the night, either deliberately or not realising I'd done so until my alarm went off in the morning. Getting a red mark on my nose. The list is almost endless! However...

As has already been pointed out, for most of us it takes time to get used to the treatment. We have to try different masks and adjust them while we're lying down - as opposed to sitting up - to get them fitted correctly. We need to make sure the pressure settings of our machines are correct, as a low starting ramp pressure can feel suffocating. Also, as I've discovered, although the EPR (Exhalation Pressure Relief) feature of modern machines makes it easier to breathe, it may be necessary for a sleep technician to increase the maximum pressure to compensate for the reduced pressure caused by the EPR feature. I also had to insist upon being given a humidifier to alleviate the dry mouth problem.

Please bear in mind that while you're not using your CPAP you will still be experiencing apnoeas, and while you may feel a little better in the short term as you're not currently stressed by the CPAP, in the long term you will feel tired again as you won't be sleeping properly. You will also be risking your long term health due to the stress imposed on your heart and other organs by the apnoeas.

When you attend your appointment explain fully the problems you are experiencing. If the mask isn't fitting properly then ask them to check that it is fitted correctly, preferably while you're lying down if possible and with your CPAP running at full pressure, to check for and resolve any leaks. Remember that full face masks need to be just tight enough to stop leaks and not strapped so tight to your face that they hurt! Also ask the technician to double-check your pressure, ramping and EPR settings and amend them if necessary.

If you're still experiencing problems after your appointment - or the technician isn't able to resolve the issues with your current equipment - don't be afraid to ask for a different mask and/or machine if necessary. Certain masks tend to suit some people better than others, and a different type of machine, such as an APAP instead of CPAP or vice versa - may be better suited to treating your apnoeas.

If you really cannot get on with the treatment despite your best efforts, and also assuming that you have mild to moderate sleep apnoea in addition to some money to spare, you may want to consider a Mandibular Advancement Splint such as the SomnoDent MAS (http://www.oral-sleep-therapy.co.uk). It's an alternative to CPAP treatment which you may find easier to live with, however I believe that it is only available privately and doesn't come cheap, which is a shame as I considered one when I was really struggling with becoming a Hose Head

Please persevere with your treatment as best you can and remember that the rest of us are here should you need any advice, information or support.


Kind regards

shuckie

[bigdave]

Thank you for your wise words, i have taken on board what you have said , and i will not give up.

[Berneta]

Stay with it

Hi Dave, glad that you are trying to stay with it even though things are not perfect right now. Just hang in there, and keep us informed how you are getting along. We care and do want to hear from you now and then. Berneta x

[Lethargy man]

You can get a Mandibular Advancement Splint on the NHS Shuckie, I have one - it doesn't work for me though.

[bigdave]

Thank you Shuckie, and Berneta, and everyone else out there,who are kind enough to care.i went back on Thursday, saw a very helpfull young lady, she has given me a humidifier, put pressure up to 15cm, and given me a Mirage Liberty, which touch wood, seems to be more suitable for me, feeling a tiny bit more awake, i realise its going to take time,after listening to you lovely people, but I'm hanging on in there.Having problems with sore Nostrils at the moment, but i'm sure my nose will get accustomed to it, also having trouble with leaks,around the nostrils, but all in all ,heading in the right direction....... i think .

[Berneta]

Sore Nose

Hi Dave, if your nose is drying out inside, try inserting a bit of (greaseless) personal lubricant inside. You can get that about anywhere that sells Personal Lubricants for women (like KY Gel) Use it whenever you wake up with a dry nose, Believe me it stops nose sores. Blow your nose gently after using it so it doesn't drip. Use it if you wake up and your nose is dry. The humidifier will help with dry nose--but it may still happen. If the nose is sore on the outside from the mask rubbing--try putting a bandaid over the spot at night to relieve the pressure of the mask. Good Luck --and I hope you start sleeping better soon, Berneta

[Fredxx]

An alternative to the personal lubricant is a well known Petroleum jelly...they do little tins of "Lip Therapy with Aloe Vera"; You can get it in chemists and supermarkets pretty easily. Works great as a moisturiser and the Aloe is good for any sores round your nostrils too

[Berneta]

Petroleum Jelly

Hi , my instruction booklet says NOT to use Vaseline or any Petroleum Product because they soften the silicon in the masks. I suppose if it is a cloth mask with no silicon parts that it would be ok. KY is petroleum free (Greaseless) However Vaseline could probably be used where it will not come into contact with the silicon or plastic tubing, Berneta