Sleep apnoea

Feel the need for a winge! I know I should count myself lucky that my AF is in abeyance since my ablation in October. However, respiratory consultant has diagnosed severe sleep apnoea, probably the cause of the AF. That I can handle, but the consultant says I can't drive any more, and must inform the dvla. I live in a village where the last bus service has recently ceased, so no public transport. I'm devastated. I hate that I have to depend on my husband , even though he is happy to take me anywhere. I also have a 95 year old mum who I shop etc for, a140 Mike round trip. We usually share the driving, it's a lot for him to do it all at his age. Feeling really unhappy, sorry to dump it on you guys, you're such a good shoulder to cry on.

50 Replies

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  • Very sorry to hear that.

    I am suprised that this was not picked up earlier. It is something that can improve with time and treatment and I used to work with someone who did get his licence back albeit he was restricted to only driving in daylight and conditions re sleep and max driving times.

  • I should have said that he improved and went on to get his licence back. This was 15 years ago and treatments and knowledge have improved since then.

  • I also suffer severe sleep apnea and use a CPap machine. What is your Dr doing for you and why can't you drive? His advise seems very extreme unless there are other reasons, Gracey

  • It's the Consultant, not the GP who has said this. The web site lists it as notifiable. Am waiting for a Cpap.

  • I agree with that. Can you be told the risk you pose. ? Is informing DVla the same as having your licence called in ? My 93 year old mother in law is still driving every day. I'd say that'sthe likelihood of her dropping dead at the wheel is high given the law of averages yet the go has no worries.

  • ELAINE, age itself is not a risk, having sleep apnea is. The risk is that you fall asleep at the wheel and cause accidents. The DVLA decide whether or not to call in your license, that depends upon the doctor's report. It is very serious condition left untreated. With treatment, no problems.

  • Thank you

  • You do the overnight SA test. The results from that are definitive and absolute. If you go over a certain threshold the it becomes notifiable by medic AND the individual themselves. Yes it will mean that your license is withdrawn but that is for your safety and the safety of other road users and pedestrians. It does not automatically mean that you will never be allied to drive again. Met someone at the hospital who did fall asleep at wheel but fortunate was only going slow on a country road and just went into a tree. He was eternally grateful that no one else was involved and he only had minor injuries. If you have been diagnosed and told not to drive then if you do not o my are you NOT INSURED and will be personally liable if in an accident but also you will automatically be taken to court and very likely be sentenced to prison.

  • Lorna,

    I'm not a medical person BUT to check on your GP try getting into DVLA website. In there you will find a whole section on Medical Conditions/notifiable medical conditions then search for sleep apnoea. Against that condition it will make lots of comments. You can do it for a shedload of medical conditions including AF itself. Alternatively go get a second medical opinion.

    Hope that helps.

    John

  • Sleep apnea is not an opinion, diagnosis is by a sleep test which is conducted by physiologists, and tests HR and breathing and SATs overnight. It is a you have or have not thing,

  • Have had sleep tests awaiting a Cpap to be available, so it is not a guess, it's a definitive diagnosis. I have no intention of ignoring the restriction, just needed to share with some support. Thanks for all your responses

  • Good luck.

  • It is always a blow when something like that happens, hope you get your machine shortly and back driving soon. Very best wishes CD

  • Hi Lorna.

    I was diagnosed with Sleep Apnoea (SA) in 2010, and then AF in 2012.

    You do have to noitify the DVLA about SA. But is it is being effectively treated then you are able to drive. CPAP is the usual treatment for AF, you will see some other options such as a chin strap, mouth pieces, and even throat and nose surgery. My understanding is these are only likely to be fully effective for mild SA.

    Have you got a CPAP machine. If not you need to get one. They normally provide this immediately after the sleep test and overnight hospital stay. Once you have the CPAP they can test immediately if it is working for you. The machines records when you are wearing device so they monitor your use usually every 6 to 12 months after having got it working.

    Now of course wearing a face mask with forced air does not sound great, but the benefits are well worth it. You should feel 10 years younger after the first night of wearing CPAP, so if you do find it uncomfortable you must percevere. They will determine the correct air pressure for you and the machines start at a low level and come up to speed over 20 mins to allow you to fall off to sleep. So the sensation of air pressure should not worry you. There are many different options for the facemask or nose mask (if you can sleep with your mouth shut). It takes a bit of time to find the right mask for you, They are fully adjustable.

    I wore a CPAP for 5 years, but I am now cured and no longer need to use it. In my case this was achieved by weight loss. A key influence on your risk of SA is your neck/collar size and you will see various figures quoted but anything larger than 16-17" for men and 15-16" for women. In my case when diagnosed my neck was 18.5 " and I was obese, by reducing my weight significantly my neck reduced to 16.5" and after tests with and without the CPAP after several months the SA was confirmed clear.

    So please make sure you get settled using CPAP and you will be able to drive. If you need to lose weight this is your best chance of a cure and it will probably help significantly with AF.

    I now believe I could have had SA for 15 to 20 years without knowing and it probably contributed to the development of AF but disrupting the heart beat several times a minute every night for years. There is various recent research showing links between SA and AF.

    I hope this helps

  • What an unwelcome turn of events. I would certainly pursue both treatment and a second opinion.

    My other has has given up driving, so I do it all but don't find it a huge burden. He has bought an electric cycle which enables him to have some independence. It's good when the weather is OK. Like you we have no local public transport.

  • Don't be too downhearted. I was diagnosed with sleep apnoea and have had AF AND 3 ablations. I had to stop driving for a while until the sleep clinic who was monitoring my sleep gave me the green light and said that the CPAP machine they gave me was doing its job and tHat they would inform the DVLA that I was fit to drive. In all I was without my licence for about 6 months and then got it back again.

  • Sorry to hear that Lorna.

    I had suspected sleep apnoea and was tested overnight but OK. A theory I have is that AF/SA is not helped by not getting enough oxygen in at night - that can be closed window, breathing or other. I read here recently that an Australian company produces some insert, I believe, to put in at night that flares the nostrils. I intend to look into this/purchase as I notice when I flare my nostrils with two fingers and breath in it is so much easier - surprising big difference with just a little change,maybe its just me.

  • That is not a theory, AF/SA are linked by lack of oxygen.

    beware that Aussie thing, I think it is a con, I looked into it and found the inventor was asking for crowd funding to develop it, all the cognigentii I asked could not see how it might work.

    My nostrils also differ and one closes if I hold the other shut, I did test positive for slight/moderate SA so am on CPAP.

  • Thanks for the timely heads up CDreamer. Perhaps I should invent something as it makes such a marked difference to me.

  • Go for it......... If it works I'll be your 1st customer!

  • Have you tried Breathright strips? They do the same thing by holding the nostrils open. . I recall a number of sports people using them a few years back

  • Thanks Bob, great idea. Enjoy your day.

  • It is not the end of the world, it is easily treated!

    I was referred and diagnosed with sleep apnea, as was my ex who was stopped from driving for the very good reason that he was a danger to others, as are you if you continue to drive. Ex caused several accidents, thankfully only injuring himself, and my sons had to physically take his keys away from him before he would stop driving. Only then would he consider treatment, that was 3 years ago and speaking to him recently after 2 years on CPAP his words were, it had transformed his life, son reports he is better tempered, less moodier and altogether much healthier, and he is back driving.

    I do hope your doctor referred you to a sleep clinic? I would imagine that to diagnose sleep apnea you have had a sleep test? If not, ask for one. The treatment is to wear a mask at night which supplies air under pressure - this keeps the airway open - resulting in better quality of sleep - less AF as result - better quality of life. What is not to like? And all that with no drugs.

    I have worn CPAP since Jan 2014, it took me about 6 weeks to get used to but once I was sleeping through the night, no getting up to pee anymore, no feeling drowsy during the day or falling asleep at the wheel........

    I got my license back after 6 months, once DVLA know you have been treated and your doctor signs you off, you have no problems driving. £1000 fine for not informing DVLA if doctor has told you not to drive, your insurance will be automatically invalidated and you are a danger to others, please heed your doctor's advice but also get yourself referred for treatment as soon as possible.

    I get you think you need to drive, given your circumstances, but believe me, your need not to drive is greater!

    My sympathies but there is treatment, it is not for ever and the good news is the treatment works.

    Very best wishes CD,

  • Can I ask what mask you use I have been given what is called a pillow mask it just goes over the head and sits under the nose. I have been using it for a few weeks but if anything I feel more tired than I did before I don't know if its the mask or the machine

  • Hi - the pillow mask is one with attachable ends which fit up your nose, not sit under it, the mask usually comes with 3 sizes of nasal contacts - small, medium & large. Who fitted the mask for you and who checks you are using it correctly? It should be checked every few weeks to ensure the usage is optimal - the chip in the machine is removed and that will give a lot of detail to the physiologists so that they will then diagnose any difficulty of usage.

    I couldn't get on with the pillow mask, it made the inner lining of my nasal passage too dry, even with the humidifier. I have tried all the masks - the full face was too clumsy & I couldn't get a good seal and for me, the best one is the ResMed Mirage Nasal Mask - not the new version which is a nightmare - the original one. This fits just around the nose, not over the mouth which means you do need to use a chin strap, as you would also with the pillow mask.

    The physiologist team I see are great and if I have any problems they just either send me a new mask or have me in for a new fitting so I would advise contacting the sleep clinic and ask for an appointment or give them a ring - I do hope you were given a number? I have unlimited support and advice from the number I was given.

  • As I said, don't have machine yet, it was someone else asking about the mask.

  • Thank you for the info very helpful. I must check the Res med mask I must say the treatment I have had is not very good at all

    I have only seen the physiologist once just gave me the mask and machine with out a lot of advice. I have to go back to see how I am on the 18th and then he said I can go back again in in a year

    your treatment and follow up seem to be really good.

  • It really was, I had a 2 hour masterclass (4 of us in the class), returned after 1 month for a 30 min 1:1 appointment, unlimited access via phone to speak to physiologist and they always did what they said and even the Austrians would have approved of their time keeping!

    Where are you geographically?

  • Like the bit about the Austrians my first appointment was at 2pm the guy was twenty minutes late and to be honest I felt as if I was a bother I was only with him for about 10 minutes I was given a number to ring no reply. I have been struggling to get to grips with it all. I have been on line to try and find out more about OSA and from what I can gather there are different machines some automatic some with humidifiers and lots of different masks I go back on the 18th not holding out much hope it will be any different I live in South Wales.

  • The machine I was issued with was ResMed, which seems to be the biggest in this country - and certainly the one my clinic use. I started out with just the machine but found it too drying so I got issued with an attachment humidifier - it's not the latest integrated model but considering the cost of these machines I am very grateful they are supplied by the NHS.

    I found this site helpful realsleep.co.uk/rsuk/chs/

    If you don't get the support from you physiologist might be worth calling them to ask a specific question?

    I found them helpful - I met one of the reps at a seminar & was given several new masks to try.

    They have 2 clinics in UK - London & Abingdon but of course that would be at your own cost,

  • Thank you for the information really appreciated it.

  • I'm still waiting for my machine so don't know what sort of mask it will be.

  • Lorna - you should be called in for a class in how to use the machine and for a fitting of the mask so I wouldn't worry at this stage. Everything is provided directly from the NHS sleep clinic, it was the best service I ever encountered here in Devon.

  • Hi Lorna - you misunderstood - the reply I left above this was for Souljacs4......

  • How many episodes do you have per hour for it to be severe? I was diagnosed with SA five years after going into AF for the first time. I was told it was severe at 97 episodes per hour. During assessment and now under treatment with cpap I have continued to drive and haven't been told by anyone that I wasn't allowed too.

  • Consultant told me, so I checked on dvla website, and it is listed. Non disclosure can be fined £1,000 and insurance could be invalid, according to dvla

  • I told them I had SA and they asked if it was controlled with cpap, I said yes and they were fine with that.

  • Do you have that in writing? If not that advice is useless and you need to put in writing.

  • The individual must NOT wait until they get the CPAP and further tests are done. You must not be tidy immediately even with you not actually driving.

  • You have a civic duty to take due care and attention and take your doctor's advice and a duty to inform DVLA but there are no imperatives here and as far as I can see some doctor's are far more lax than others and don't say anything unless the patient specifically asks.

    It seems the onus is always on the driver to confirm their fitness to drive and inform DVLA, not the other way around i.e. - that unless a doctor informs DVLA you cannot drive, you can drive.

    Doctors hate doing any of the paperwork, understandably, so the onus seems to revert by default onto the individual - hence the £1000 fine just for not informing them.

    I have talked to DVLA on 3 occasions now and they are very clear that they cannot give an opinion or a decision as to whether or not a person is fit to drive, but they will take medical advice on an individual basis, hence they ask for a medical report and in the case of SA confirmation that you are being treated.

  • I was told that in the case of SA the consultant / doctor does have to inform the DVLA.

    When I saw the SA specialist I Did not even have to ask about driving. When she gave me the results of the SA test she said that it was very mild and that as the readings were very low there was no need for the DVLA to be informed. From teh way she used readings or numbers I took it that there is a definitive threshold for SA.

    Obviously for many other conditions it may be much more subjective.

  • I had 11-20 episodes per hour = mild to moderate so I would say your 97 episodes are very severe. If you are having treatment with CPAP you would not be told not to drive - because it is treated.

    I was never told not to drive with the diagnosis of SA but was told I HAD to inform the DVLA, which I did. DVLA wrote to my consultant pulmonologist for a report and the sleep clinic to confirm I was in treatment and put me on a 3 year restricted license.

    I have another condition which disqualified me from driving for 6 months.

  • The key is the number per hour average but I don't know what it is. If it is above certain number that is when consultant has to tell you no driving and has to inform DVLA themselves as well as the driver.

  • The consultant does not tell the dvla, he advises you that you must. On the form you fill in for dvla, you give permission for them to give your info to the dvla, and also for GP to do the same. Patient confidentiality!

  • Ok that's changed. Thanks.

  • Oh dear that must be very frustrating for you . Must people in many towns let alone villages feel they need a car to get about especially in the evening Hope you are able to adjust to coping without the car.

  • Yes it must be frustrating but it doesn't mean they have a right to drive if they are a danger to themselves and others.

  • I didn't say I wasn't letting them know, don't make assumptions about me. I already downloaded the form to send off.

  • Lorna I am sorry if you think that was aimed at you, it really was a general comment in a thread that many people contributed.

    Not all the comments were addressed to you and I have not assumed anything about you, just sympathise with your predicament, having been there I was trying to pass on what I have learned from the experience.

    Maybe it is you who are assuming my intent?

  • I'm amazed. All these comments, but no one's talking about what causes sleep apnea in the first place!

    It's caused by the soft upper palate (where the uvula hangs) collapsing and closing off the airway. The gravity of the situation suggests ... never mind ... :-)

    Sleeping on your back is the most likely way to induce this collapse. I've heard that obesity has something to do with it, but I can't speak to that. When you sleep on your back the soft palate relaxes and droops down. You can prevent that by positioning your head to one side, or else sleeping on your stomach or side.

    If you really want to sleep on your back, here's how to do it without inducing apnea. This is my tried-and-true method so I know it works.

    Get a firm pillow or foam wedge and place it under the left side of your back so your left shoulder is 2 or 3 inches above the bed. Adjust it so it's comfortable. You may have to negotiate with your hips and legs so your back doesn't get sore. Your head should now be tilted toward the right side. Then take your bed pillow (not too soft) and tuck one end of it under the right side of your chin, on top of your right shoulder. Adjust for comfort.

    You may want to switch sides. The point is to tilt your head 30-45 degrees to the side.

    Sleep well!

    PS: As for the nostrils, it's important to keep them open or you'll end up breathing through your mouth, and then you're in Apnea City. Breath strips or an insert can help. My nostrils swell and close nearly every night unless I use one of these devices, but I still don't sleep on my back in case I breathe through my mouth anyway.

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