I think I have sleep apnea fobbed off by dr

[Babymamma192]

I have just come back from a Dr's appointment it took a lot for me to go and now feel deflated and like I haven't been listened to.

I wake up in the night gasping for air and my husband and children have witnessed me stop breathing in my sleep on a few different occasions.

I wake up with a dry mouth and don't feel rested, I snore and grind my teeth.....these are symptoms of sleep apnea and this is what I've told my Dr but because I'm a healthy weight, don't drink heavily and don't smoke he won't refer me to the sleep clinic.

I feel fobbed off tbh! Was asked about my periods tho.... What that's got to do with not breathing when I'm asleep is beyond me.

Is there anyone out there with the same symptoms as me who does have sleep apnea?

I do have diagnosed sleep apnea and your symptoms do match mine to a degree.

It does sound like you were fobbed off. There is a sleep score they can do. I think it's called Epworth. Maybe see if you can find it online then if it's high you can go back and ask for another opinion.

This definitely sounds like sleep apnea (I have it). Is there a sleep clinic in your area, I’d ask GP for a referral if so. GPs often seem to be shockingly ill-informed about sleep issues ime.

Look for the STOP BANG questionnaire online. That tends to be more relevant for women with sleep apnoea than the Epworh Sleepiness Scale, which focuses more on typical men's symptoms.

You have been fobbed off, yes. So I'd do the STOP BANG and go back to the GP with the results. Also arm yourself with the NICE clinical guidelines for referral criteria for sleep apnoea. (My GP refused to refer me too, so this is what I did, and I got a referral after that).

Just be aware that once you're referred, and you get a sleep study done, the wait times for results on the NHS is about a year.

https://www.nice.org.uk/guidance/ng202/chapter/1-Obstructive-sleep-apnoeahypopnoea-syndrome

As others have said, do STOP BANG, Epworth score and have a read through NICE guidelines. Bear in mind that most sleep clinics require 6 months of "conservative treatment" before accepting the referral.
If GP refuses to refer, ask them to document their refusal together with their clinical reasoning in your medical notes.

It certainly sounds like sleep apnea. Hope you can get some treatment.
FWIW, I have similar symptoms and find that avoiding diary and bread stops me having those 'waking up gasping' episodes. For me, it's a kind of food intolerance that makes my throat swell. It might just be worth trying for a few nights, or cutting out any food which you don't get on with.

@TheseAreDarkTimesHarry really? That's strange, I'm in Cambridgeshire and the whole process was very quick for me. From referral, sleep study, diagnosis and then receiving my CPAP machine it was just over 6 weeks.

Make another appointment OP, don't let them fob you off. My main symptom was drifting off then jolting myself awake gasping. It can feel very scary, I was having 22 episodes per hour according to my sleep study, which is only classed as moderate. I've been on the CPAP for 5 weeks now and from the very first night I was down to less than one episode. I feel like a new person and no longer suffer with headaches, my mood has improved significantly and I'm full of energy wish I had started years ago. Did they look at your Mallampati score? Mine was IV which they said makes sleep apnea more likely

Apparently silent reflux can cause similar symptoms which has nothing to do with smoking, drinking or excess weight. Read up about GERD and try taking gaviscon etc and elevate your sleeping position for a while and see if it improves.

Same here, even fewer typical conditions. I then looked at the Epworth Sleepiness Scale and worked out the minimum score that met the criteria for referral. I adjusted my responses accordingly.

I got referred and got a home test that showed I did suffer from moderate apnea. Mainly central sleep apnea which much less common and can affect slim people. I got a cpap machine. The consultant then decided I should do a more in-depth sleep test and that came back I suffered from severe periodic limb movement disorder. I had no idea! That wok me up over 50 times an hour.

It was mainly caused by medication and since adjusting the dose, it is much better.

For years I got robbed off, told my poor sleep was due to poor habits. It was so frustrating as I was doing everything right. If I hadn't made myself score more on the ESS, I guess I would still be where I was.

Yep me. Healthy weight and exactly the same symptoms, don’t smoke or drink. I was referred to the sleep clinic and found to have above moderate to severe sleep apnea after wearing a monitoring machine( I stop breathing multiple times during the night). I now have a machine.

Your GP sounds appalling and I wonder if medical misogyny as at play. Go back and say you’ll be making a complaint if you aren’t referred for assessment.

Long waits in my area too. The nurse who gave me my machine said they’re inundated.

How do you manage with the machine? I find the pressure a bit scary and I sometimes wake up in the night and pull the nose thing off in panic. I need to push through. Any tips?

@GreenLeaf474 what machine and mask are you using? I have the airsense 11autoset and the airfit f20 mask. They gave me a humidifier and I bought myself a heated hose which I think made a difference. It does take some getting used to but I think the ramp setting on my machine makes it more manageable.

To start with I was wearing it whilst awake to get used to it, so I would watch TV or read in bed wearing it . I also take magnesium a couple hours before bed which helps me relax a bit. There are still some night's I yank it off in my sleep though!

Ah I have the Airsense 11 Elite and just the nose thing as wasn’t keen on a mask. Could only choose one option. Maybe I need to keep trying.

@GreenLeaf474 I tried the nose pillow but I couldn't get on with it, so stuck to the full face mask. I think I'd struggle with the pressure too if I didn't have the autoset model, when I put it on I think it stays at 4 for around 40 minutes until I fall asleep then it automatically adjusts the pressure throughout the night.

Maybe I should ask to swap, think I’ll contact them. Will try to push through this week. How often do you wash all the parts?

Thank you all for your responses! I felt so down coming out of the doctors feeling like I'd been over reacting!

He even told me if I had sleep apnea I'd be written about in all the scientific papers because a healthy woman with sleep apnea would be so rare!

How on earth can they sit there and say stuff like "you definitely don't have it" when in reality they haven't got a clue.

@TheseAreDarkTimesHarry I've just looked at the STOP BANG questionnaire and it says intermediate risk... He never even mentioned any questionnaire so I'm so grateful to you for sharing it with me and I will be making another appointment with a different doctor and hopefully I'll get somewhere.

@GreenLeaf474 I clean and refill my dehumidifier every day, I had to buy distilled water as I'm in a really hard water area and didn't want to just use the kettle. I clean the hose and deep clean the mask once a week but I have CPAP wipes that I use on the mask daily too. I bought covers for the mask straps which I wash and change every few days. I change the filter every 2 weeks, it always looks brand new and like it doesn't need changed but I do it anyway as that's what I was told.

Sorry to hijack your post OP!

If you’re prepared to pay, you can get a test kit posted to you. Results will confirm if you have apnea, if so you could then buy a apnea machine privately

@Onlywayisrainham yes I actually sat in the car park at the doctors and googled paying for the test myself but then i thought myself and my husband pay tax I shouldn't have to pay again! So I've just submitted another form at the doctors and hopefully a different doctor will refer me... If not I will pay for the test.

That's heartening to hear. My trust have given me a 1-year expected wait time for a consultant to review my results. I'm in Manchester. I'm glad that's not the case in other trusts!

You absolutely sound as if you have sleep apnea, whether it is or not, and how serious if it is, is something you should be referred on to find out!

I can see zero good reason for discounting sleep apnea completely based purely on you not being fat! That is ridiculous and you've done the right thing in seeking a second opinion. Don't leave it to them to suggest a referral to sleep studies though, ASK for that outright.

Save your money at this point - you'll need to for CPAP supplies if you do have it and they prescribe a CPAP machine. You will get, out of the NHS, a mask, headgear and machine.

You will not get: heated pipe, water reservoir (maybe..), replacement filters for the machine, replacement cushions, vent rings, headgear and so on. Much of the kit is recommended to be replaced every three to six months - the NHS runs on 'we will replace it if it drops in bits and not until'.

For most kit (ResMed airsense usually) you CAN buy off-brand compatible stuff, and I recommend you do as the ResMed kit is stupid money - £37.99 for a replacement air vent ring (on my mind as I had to buy some today) that needs replacing every three months as it has a filter inside that will get clarted up with grot and cannot be cleaned out and have the filter replaced! I bought a pack of two off brand compatible ones for £20.

If they offer you a machine and a mask - don't just shove it on your face sat up - insist they let you lie down on a bed with your head on a pillow to test the fit, that changes the fit quite a lot!

If your hospital are anything like mine, they will wang on about not using this or that, not cleaning it with certain things, blah blah etc - you can buy wipes, use them nightly to clean the silicone so it actually sticks to your face. You can get fabric covers, these can interfere with the seal but on the other hand if it stops you ripping it off your face in your sleep because you're dreaming of facehuggers.. its worth a go.

I also recommend some sort of silky cover over the straps on your head as it will bugger your hair up!

I was fobbed off a few years ago by a GP but knew I had it. Recently I decided to address it again.

I paid just under £200 for a private at home test which confirmed severe sleep apnoea.

I booked a GP appointment and emailed the private test results in August - basically had to instruct her to refer me to the sleep clinic.

The sleep clinic booked a telephone appointment this month where they asked a few questions, advised I lose weight and said I was being booked in for a cpap machine. He said that cpap appointment might take a few months to come through but its in a couple of weeks.

I think that £200 test has helped me partially skip the queue but I didn't want to pay for my own machine. I feel this has been a decent outcome and not an excessive wait (possibly related to the severity of my condition - 43 incidents per hour).

A private test and buying a Cpap machine is going to be around £500. You’re up and running within a week.

No one should have to pay this, we’re tax payers. But life is short and if you can spare the dosh is probably best route.