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Recently Diagnosed and feeling fobbed-off

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  • Recently Diagnosed and feeling fobbed-off

    Hi All

    I'm a recently diagnosed 44 year old male, currently waiting for a CPAP Induction group session at James Cook Hospital, Middlesbrough. I had an overnight home sleep study before Christmas with a prompt follow-up consultant appointment on Dec 20th.

    I asked my GP to refer me to the sleep clinic for two reasons;

    1) I have snored horrendously since I was in my late teens (BMI 18.75), so bad that my partner has to sleep in the next room (she has also witnessed my apnoeas, gasping, "squeaking" etc). I sometimes wake up gasping, other times choking after dreams where I imagine objects have been placed in my throat which I'm desperately trying not to swallow or inhale. I know this last item sounds bonkers. It happens every 2-3 months.

    2) I've been suffering from daytime sleepiness on-and-off for the past few years. This takes the form of nodding off when bored, slow day at work, overheated office etc. My workmate takes great joy in photographing me and making cartoons. Does this happen every week? No.

    If there's something to keep me alert, I'm alert. Otherwise I can go into "standby" which people either find amusing or rude. Christmas with the In-laws and wall-to-wall UK Gold is a hoot, as you can imagine.

    Other relevant or possibly irrelevant medical history:

    1) Diagnosed Bipolar II in 1999. Asymptomatic and unmedicated since 2005. Was "just" depressed until given Prozac, which induced hypomania. Maybe the depression was caused by undiagnosed OSA?

    2) Diagnosed with hypertension 2016. Prescribed ACE Inhibitors > Angiotensin II Receptor agonists > Ca channel blocker > Beta blockers with basically no response until starting on beta blockers last September. I'd spent years telling my GP it was stress-related and being ignored. Changed my GP, convinced him and I'm now below 140/85 from a high of 205/115 ("We need to get this under control or you're going to have a stroke" said the first GP)

    Struggled with weight since University, where I had a BMI of 18.5. Started piling weight on when given Valproic Acid in 2000 and never managed to shift it. Have been between 92 and 97 KG so BMI of 26-30 for the last decade. My BP - as I've pointed out to my new GP - was 140 systolic when I was in my 30s which prompted him to refer me for a renal scan last October, which was negative but showed - surprise surprise - some fatty liver, which I'm working on.

    I said in the title that I feel fobbed-off. I'll explain why.

    The appointment with the consultant started well enough - the sleep study confirmed I have sleep apnoea. Consultant - an Indian gentleman of few words - then asked me about driving, driving for work, professional driving, then repeated the Epworth questionnaire I'd filled in as part of the referral. I'd been asked to bring my partner, whose input was not solicited at all so I asked her to confirm the "likelihoods" of the various scenarios I was asked about.

    After finishing the questionnaire, he then said I'd scored a 5.

    Here is where I got very confused: He said that there are 3 severities of sleep apnoea, which I'd never heard before:

    1) Sleep Apnoea
    2) Sleep Apnoea with Sleepiness
    3) Sleep Apnoea Syndrome

    The upshot is that I have sleep apnoea but I'm not a "very sleepy person" therefore he said the treatment was losing weight. I said that I agreed I needed to lose weight and have recently piled on 3 KG or more due to inactivity after an operation in the summer but I have snored since I was a teenager with a very low BMI. He said the snoring wasn't the cause of sleep apnoea, that it was unrelated, although noted it.

    He then said that I could "have a CPAP trial" for 6 weeks but that it was not guaranteed to help me, had poor compliance, yadda yadda yadda, to which I replied, yes, I would like to try that. My thinking was obviously that I'm not going to be able to lose weight overnight and in the meantime I have a health condition which is quite detrimental to my life and I'm so fatigued that I can't even contemplate getting on my C2 rower.

    He did not at this or any other point, say anything about notifying the DVLA of my condition, advise me not to drive etc. I now feel very frustrated because from what I've read on here, OSA diagnosis > CPAP > Surrender license > meet the requirements for successful compliance > get license back but I've basically been told CPAP isn't appropriate and feel that I'm only getting this treatment because I'm awkward and they're humouring me.

    I've had a terrible Christmas in many ways because I've had a persistent cold/sinus infection which happens every year and this has made my breathing even worse. I'd go to bed at 9:30, wake up at 10 am, be knackered by 2pm and have to go back to bed. We have a 3 year-old son who is exhausting at the best of times but the past few weeks have been really hard. My partner just doesn't understand how exhausted I am at the moment and complains, rightly enough, about having to get up with our son every day between 05:30 and 07:00 because I literally couldn't function if I had to do that.

    In desperation over not knowing how serious my condition is, I took the ill-informed decision to buy a pulse oximeter, which arrived yesterday. I realise now from this forum that the results are difficult to interpret but from a physiological point of view (I studied Dentistry at University although due to the bipolar couldn't sit finals as was barred from clinical work) it seems pretty obvious that if my average O2 Saturation is 95% when I'm sitting up and immediately drops to below 90% when I lie down in any position, I have a problem and this problem is causing hypoxia which is doing me no good. I think the nurse muttered that my neck was 49 cm and after buying this device and watching my sats drop as soon as I lie down even if I make a conscious effort to breathe consistently, I'm now wondering whether CPAP would in fact make any difference? My airway may be collapsing when I sleep, but if my sats are dropping before I even get that far...?

    According to the oximeter, for last night:

    Recording time = 6h54m (including 2 hours trying to get to sleep)
    Drops over 4% = 19
    Average Sp02 = 92%
    Lowest Sp02 = 82%

    Sorry for the length of this. I'm sure by now if you've read thus far you'll appreciate my frustration. The route course of my problems may well be my pie hole and I'm working on that, but the more I read about OSA the more it seems to be the case that "you're fat, you can't breathe, do something about it" isn't a one-size-fits-all diagnosis.

    Best wishes

  • #2
    I can understand your frustration. It may be that you fall into the MILD Sleep Apnoea. Nice has recommended that patients should loose weight if they fall into this group.
    There is Mild, Moderate, Severe Sleep Apnoea.
    • mild an AHI reading of 5 to 14 episodes an hour
    • moderate an AHI reading of 15 to 30 episodes an hour
    • severe an AHI reading of more than 30 episodes an hour

    NHS thinking is now; Current evidence suggests treatment is most likely to be beneficial in people with moderate or severe OSA. However, some research has suggested treatment may also help some people with mild OSA.
    So if one hospital will not give you a cpap machine try to see if the doctor will send you to another. Best to find out how many events you had every hour so you know where you stand.
    Did you have a machine when being tested or just a clip thing on your finger?
    The only other way is to get private testing done, or to buy a second hand machine that is lightly used and tested. Get a Auto machine, Resmed Airsense10 Autoset is a very good machine, Resperonics Dreamstation is not bad, but the ResMed is a fraction quicker in responding. If you are unlucky you might need a more complicted machine, but I don't think you will. Try google Second Wind but you will still have to buy a mask and bits and bobs.
    If you breath through your nose then getting Nasal Pillows might be an easy way out if they suit you. If you are a mouth breather you really need to get one fitted, or get a returns policy when you buy as you will need a full-faced mask.
    Go back and have a word with your doctor and see if he can find out how many events you were having during your test.
    If he can't find out as for a retest somewhere else.
    S2S - Sleep2Snore


    • #3
      Hi S2S, thanks for your reply. So far, I have just had an overnight home sleep study by pulse oximeter. I bought my own and have been using it religiously every night for the past 2 weeks so I have a baseline before I hopefully start a "6-week CPAP trial" tomorrow. The oximeter I bought tracks the number of 4% or greater desaturations. My hourly averages for these have been between 3.5 and 12.5. When I wake in the morning I instinctively know whether the results were good or bad before I download them. It might well be "mild" but it definitely affects me and since my partner is forced to sleep in the guest bedroom most of the time, it can't very well be argued my condition doesn't have a detrimental effect on my life. I've read that below 80% the saturation levels can be wildly inaccurate but that said, my worst night I had 144 desaturations with a minimum of 66% and minimum heart rate of 35 bpm. Despite being very uncomfortable due to arthritis in my neck, I've been sleeping as propped up as I can and this does seem to have influenced my breathing and tiredness.

      I don't disagree that I need to lose weight however I've also read that the association between OSA and weight is now thought to be a 2-way street and I'm currently so exhausted there is no chance of e.g. rowing a slow 2Km let alone attempting an endurance session.

      The "CPAP Initiation" I have tomorrow is a group session. Having read on this forum how to make sure the initial appointment is the most constructive, I do wonder how useful a group session would be/what opportunity there would be to ask questions etc.

      Thanks for the advice about masks - I am a majority mouth breather and have rhinitis most of the time so I always assumed a full-face mask would be necessary.

      I suppose my biggest fear is that CPAP therapy does help me (I intend to keep using my pulse oximeter throughout the "trial") but that because I'm classed as "mild" the NHS will attempt to spin this as not cost-effective. My step father lived with heart failure and AF for 19 years (I'm 95% certain he had undiagnosed OSA and Mum said he used to stop breathing and snore a lot) and in terms of medications will have cost a fortune to treat over the years. If I perceive a benefit and my measurements support this, provided I can take my diagnosis/prescription and buy my own machine I don't really care whether the NHS will provide me with a machine or not.

      Thanks again


      • #4
        Quick update: On Friday I was provided with a ResMed AirSense10Elite and Quattro FX mask (as I'm a mouthbreather) and had a whistle-stop tour of the features followed by an initial mask fitting. I was told by the consultant that I'd be having a 6-week trial. The specialist nurse I saw on Friday (it was 1:1 not the threatened group session) said that the unit is now "mine" and they will review progress in 3 months, then a year-18 months which they will try to coincide with servicing/parts replacements.

        I've been set to CPAP mode (thanks, Sleepyhead, for telling me this) and 9cm and the ESR is set to 3 cm.

        Friday night I used it for over 9 hours but my time asleep was severely limited. Max leakage was 8 L/min, I had 2 sessions of over 4 hours with a bathroom break at about 4 am. The biggest leak events must have happened when I turned to the side and a jet of air was directed into my eye, which woke me. Overall though I don't have a big leakage issue and last night was markedly better with a max of 2l/min. After the first night I found that placing the machine on top of a thick paperback book helped to dampen most of the machine's noise, which sounds like my cat's snoring.

        Saturday night my usage was about the same but since I'd had issues Friday with getting to sleep and also aerophagia/nauseous feelings during the day I changed to auto-ramp. My breathing must have stabilised pretty quick as according to Sleepyhead the ramp was 19 minutes each time. I had to restart the ramp 3 times before I could get to sleep, but I did sleep and I woke feeling pretty refreshed at 08:30 on a Sunday, in a good mood, which is pretty much unheard of in the last 2 decades.

        The most startling thing is that I'm now not a mouth-breather. I can actually breathe comfortably through my nose. I wasn't expecting that. I've also bought a Sinupulse as I've used the NeilMed bottles in the past with some benefit but found them too much of a faf. Even with constant steroid nasal sprays I had post-nasal drip and frequent sinusitis so I'm hoping the Sinupulse helps with that.

        My only issue is that I haven't been told what my untreated AHI actually is, so I don't know how many events I might have been having without the CPAP. The first night, with maybe 1 hour of actual sleep, I had 1.86 AHI and last night, 0.83 with ZERO OSA events. What I did notice however is that both nights, the majority of the events were Clear Airway. Having looked into this, I believe I was actually having these both nights while still awake/in phase 1 sleep as I could feel the machine rapidly changing/pulsing the pressure to test for obstructions. I'm going to use Sleepyhead to build my own dataset and track whether the CA events continue to be a problem.

        In terms of O2 saturation, I've continued using my pulse oximeter and the difference last night was marked. My average SpO2 has increased from 91% to 96%, the minimum recorded SpO2 increased from 82% Thursday night to 89% last night and the time spent below 90% has decreased from over 2 hours to less than 2 minutes. Obviously I've got a lot of catching up to do but I already feel better.

        What I'm concerned about now is that when all this is reviewed in 3 months, someone will decided that this therapy isn't worth the effort, so I'm compiling as much evidence myself that it is. Despite still being sleep deprived in terms of time asleep, the quality of the sleep I've received is clearly improving both objectively and subjectively. I'm very pleased with the results so far and only wish I'd pressed my GP for a referral much earlier.

        Kind regards


        • #5
          You would have been better with the same machine but the Autoset model instead of the elite as the Autoset is an automatic machine. Even though you have the Elite it is a lot quieter than the machines used to be. If you don't get on with this machine you could try them to give you an Autoset. If not, buy one and ask if they will service it etc if you do. Hopefully you should not go below 90%. Trouble with CPAP machines is they set them up to cover you 90% of the time usually, I got my CPAP machine increased in pressure and this helped a lot, though I did need EPR turned on to help me breathe out due to the pressure.
          Good luck, let us know how you get on. I am not around on the Internet like I used to be, so it might be a while before I reply.
          S2S - Sleep2Snore