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Forums / Anxiety / Been told I have sleep apnea. Anxiety about having to use a CPAP machine.

Topic: Been told I have sleep apnea. Anxiety about having to use a CPAP machine.

11 posts, 0 answered
  1. 99isthebest
    99isthebest avatar
    16 posts
    28 September 2021

    Hi everyone,

    I Wanted to reach out and ask if anyone out there suffering health anxiety has ever experienced being diagnosed with sleep apnea as I am struggling to come to grips with my diagnosis.

    All of these started because I was constantly feeling tired but not so tired as I was falling asleep during work or driving etc. But tired enough that it was noticeable and even my friends and family commented. Your always tired. Of course being a health anxiety sufferer I came up with an abundance of reason why I could be feeling this way. Cancer, hiv etc. you name it I’ve thought it.

    Then I stayed at a friends place before his wedding as I was a groomsman. We were in the same bed as there was a few of us staying that night. He was adamant he noticed me stop breathing in my sleep and seemed alarmed by it. Of course this got me thinking and my grandfather suffers from this condition. So I took the test.

    Results from the sleep dr put me in the moderate category I am about 24 per hour on the rdi index. And he said any oxygen drops under 90% are cause for intervention. Mine dropped to 88% at the lowest and for 10% of the total sleep time.

    I feel super depressed about my cpap trial. Having to wear something to bed just irks me so much. I’m the type of person where a clicking fan, to much light or not the right temperature is enough to irritate me falling asleep let alone staying asleep. I realise I’m not the only one but I feel let down by my body. Being only 30 and skinny something just doesn’t feel right when I’m sitting in a waiting room with people all over the age of 50.

    I’m also super worried that the sleep dr ask for extra blood tests my gp has never tested for. Which makes me wonder if he thinks whatever I have is more then just sleep apnea. Does anyone know if blood tests are normal for this?

    Of course this leaves me with this dilemma of if I don’t want use the machine I hear all this terrible stuff about it shortening your life etc. what day will I drop dead.

  2. Anna1991
    blueVoices member
    • A member of beyondblue's blueVoices community
    Anna1991 avatar
    9 posts
    28 September 2021 in reply to 99isthebest

    Hi there,

    I'm sorry to hear how you're feeling - anxiety is a difficult enough illness, and having an additional physical illness is a lot to manage at once. CPAP machines are definitely not fun.

    The positive is that using your CPAP machine should improve your fatigue and (hopefully) have a positive impact on your mood. Having sleep apnea is pretty awful for your energy, mood and thinking, and the CPAP should let your body get the rest it needs. I'm not sure what blood tests the sleep doctor would be doing, but it's worth asking him/her to explain why and what they are testing for. Sometimes doctors can order lots of tests without thinking about how anxious that makes the patient - while you think of all the things they could be testing for! - so ask your GP or the sleep doctor what the reasons are. They should be happy to explain it to you.

    The bad side is of course that CPAP machines are pretty uncomfortable. Unfortunately, there's no alternative for sleep apnea at the moment which is a real pain. While the machine is important for your sleep and your health, if you find it completely unbearable - talk to the sleep doctor. You won't be the first patient to have had issues with it, and they may have some ideas to make it a little less intolerable.

    I hope that helps!

  3. 99isthebest
    99isthebest avatar
    16 posts
    28 September 2021 in reply to Anna1991

    Thank you for your comment. I guess the best thing is to discuss my options with the dr.

    L

  4. Nervybella
    Nervybella avatar
    141 posts
    28 September 2021 in reply to 99isthebest

    Hi 99isthebest

    Sorry to hear about your diagnosis. That must be difficult to process. One of my friends recently was diagnosed and she was able to get an “oral appliance” instead of a cpap machine. There are alternatives out there. We are in Melbourne and she went to a clinic in the City.
    I’d recommend a quick google search :)

    let us know how you get on!

  5. 99isthebest
    99isthebest avatar
    16 posts
    29 September 2021 in reply to Nervybella

    Thank you for your reply.

    If I may ask, does she feel like she is having success with the oral appliance?

    It seems like every online resource out there does list alternatives but I cannot seem to figure out which dr I should see that would be willing to give me these options. It seems like everyone points you to cpap as the be all end all. I feel like if I don’t go on the machine I will die. But if I go on the machine I still don’t get any sleep anyway as it’s so uncomfortable. So worry again what the lack of sleep and stress will have on me.

    The specialist I’m seeing didn't seem to be very interested in other options when I first saw him but I’m not booked to go back until 4 weeks once I’ve tried the machine, but two nights in (having taken it off after 3 hours both nights) I am not enjoying it one bit.

  6. Nervybella
    Nervybella avatar
    141 posts
    29 September 2021 in reply to 99isthebest

    Hi 99

    yes from what I’ve heard she is having great success!
    Are you in Melbourne? I’m not sure if I’m allowed to state the name of the clinic but if you google “oral appliance Melbourne cbd” it’s the first clinic that comes up…

    I can only imagine how difficult a cpap machine would be to sleep with! It’s important to get some type of treatment for the condition so do look into other options if you need to x

  7. Dr Sleep
    Dr Sleep avatar
    2 posts
    29 September 2021 in reply to 99isthebest

    Hi 99sithebest,

    I don't really post here but seeing as I'm actually a sleep scientist, I thought I could offer some help/advice.

    I'm sorry about your diagnosis. Having said that, it's great that it has been identified early and you're getting on to treatment. Your RDI and Sats are not that alarming. You will however, notice a huge difference in your day to day health and energy levels if you stick with it.

    Has the doctor suggested to maybe wear it during the week and have weekends off? I work in a children's sleep clinic, so CPAP compliance can be tricky in the little ones and sometimes that kind of compromise is enough.

    The blood tests will be for thyroid function, iron etc, nothing to worry about. It's not a routine part of the sleep study, but it is very common for doctors to request it (to see if anything else is contributing, like anaemia).

    The oral appliances are used in certain cases where the sleep apnoea is attributed in part to facial/jaw anatomy. The MAS for example (Mandibular advancement splint) is used mainly in patients with a retracted jaw or with mild to moderate sleep apnoea, like you, so it's worth talking to your sleep doctor to see if you'd be a good candidate for it. There might be a reason the doctor won't be too keen to prescribe that and it could be due to your facial anatomy. There's a good chance it might not work.

    Unfortunately, the god standard is CPAP. It works every time, on everyone. It is life-changing.

    As a bonus? It was invented right here in Australia!

    I hope you give it a try and I hope it changes your life.

    P

  8. 99isthebest
    99isthebest avatar
    16 posts
    1 October 2021 in reply to Dr Sleep

    Hi Dr Sleep,

    I really appreciate you reaching out. Especially since you have some expertise in the subject.

    I guess one of the things I struggle with the most with is the feeling that I’m somewhat weighed down with a machine. I feel like I am young and still have a lot of adventuring to do. Dragging a machine around and needing a machine to keep me going while sleeping just doesn’t seem to sit well with me.

    Since the diagnosis I have really been struggling to come to grips with it searching for alternatives. I am seeing my GP this weekend to ask for her opinion (as the sleep dr changes $500 a visit) I just don’t have the money to keep going back and getting his opinion and advice. He never even seemed to talk about my options it was straight to cpap. All my other sources of information have come from google. The two successful ones for moderate being the mouth piece or surgery that I can see.

    Also wondering about discussing blockages with an ENT (I feel this might help as for as long as I can remember I have never been able to breath through my nose). But I don’t know if that’s a health anxiety thing or a blockage. As a kid ironically I really struggled with worrying about breathing so I was constantly breathing through my mouth as a result and even now as an adult if I try to close my mouth and breath through my nose I feel like after a while I have to open my mouth still.

    My plan is to speak with my GP first and maybe get a referral to a cheaper sleep dr/ent for some advice on my options and the pros and cons. Then I guess if all else fails give cpap a go. I liked your during the week suggestion but the times I’ve tried this week I have woke up exhausted for work so I am thinking maybe the opposite and trying over the weekend where being tired the next day isn’t the end of the world.

    Thanks again for your help and reaching out.

  9. 99isthebest
    99isthebest avatar
    16 posts
    1 October 2021 in reply to Nervybella

    Hi nervybella,

    Thanks again for the kind words and help! I am in Brisbane but I sure have been googling and found a couple places here as well. As I explained to dr sleep I will be exploring these options this week.

  10. Resilience21
    Resilience21 avatar
    8 posts
    1 October 2021

    Hi everybody,

    I have been diagnosed with severe sleep apnea 7 years ago. I have been using a cpap machine ever since and having good success with it. For me using the machine is all mental. When I first started to use it, I visualized what it feels like having a mask on for diving (which I had done). I continued to think that the mask, hose and machine are giving me live giving oxygen, just like when I used the diving mask.

    I also told my mind, that I have to wear the mask is A FACT, no arguing. Now I am so used to it, that I am looking forward to plenty of oxygen, good nights sleep and no headaches.

    What has helped me the MOST to accept the fact that I have to use the machine is- that I AM GRATEFUL that the machine exits in the first place.

    Cheers

  11. BeADodo
    BeADodo avatar
    11 posts
    4 October 2021

    I got diagnosed with severe sleep apnoea on my back and moderate oh my side when I was 24 so I know the feeling heh. At the time I told myself I’d rather die in my sleep than wear one. I didn’t end up getting one but I tried my mums one, which I couldn’t deal with.

    I’ve since had surgery to fix my deviated septum, reduce my enlarged turbinates, remove my tonsils and adenoids (for tonsillitis reasons), and went back for a test. Now I only have low-moderate apnoea on my back and none when sleeping on my side. 🥳 they said if I lost more weight  that it would likely go away entirely.

    im still not the best sleeper (insomnia) but at least when I’m asleep it’s better quality!

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