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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