Sleep apnea

Hi sorry to hear you have OSB, I too have this problem, was diagnosed in 2005, and know how difficult cpap therapy can be, it took me around 6 mnths to come to terms with it, prior to getting a machine, I actually stopped breathing during the night on 2 occasions, woke up, couldn't get any air in, for what seemed like 5 mins, very frightening ! during a sleep study at the local hospital I was waking up 54 times an hour every hour, lost my job and house. I'm now under the care of a London hospital and while not full of energy, am a heck of a lot better, so try and persevere with the machine, have you got the right size mask? By the way your Doctor/Consultant has to by law inform DVLA, who will require you to surrender your driving licence, until your medical people say you are compliant with treatment, (sorry) hope some of this helps, or anything else you need to know, just ask.

I. Have got a nasal mask as well as a full mask I can get to sleep with it on but it seems I take it off after an hr I am unaware that I'm doing this so don't know what else to do

I just want to curl in a ball and close off the world I am having a meeting regarding work as I think they have had enough of me feeling drowsy do you take any meds to keep you awake at all this is all I want I need to keep my job as I have a young son to support x thankyou for your advise xxx

I did take meds from the doc, they were called Provigil I started on 400mg which helped to a point, ie I would go to bed at say 11pm, wake up at 1am wide awake, get up and take the dog for a walk, but this pattern catches up with you after a year or so and you are back to square 1.

You may like to know before your meeting that OSA is covered under the Disability Discrimination Act, check out their website, and providing your employers know about your illness, which will not go away, they have to by law make reasonable adjustments to your working day to enable and help you work, if they don't, and they fire you, go to the CAB and take them to a tribunal, my employers which were a County Council offered me money to go away, 2 months money in fact LOL when I mentioned a tribunal that was increased x12, simply because they had not heard of OSA and thought I was just lazy. Please get intouch if you need any more help.

Regards

Dougie

Hi Poppys123,

Sorry for the wordy reply but hope it might help you particularly and others generally.

Now aged 63, I was diagnosed with moderate OSA two years ago but on reflection now realise that Ihave suffered from it for at least 20 years although not as severely. Physically I have been borderlineobese for the past four years and overweight for 4 years before that, I vigorously swim at least 1km week days but have a sedentary job. Over the last five years I have been trying fruitlessly to reduce my weight while seeing my BP increase and the onset of Type 2 diabetes. Now sleep apart from my partner - understandable but unhelpful

Initially put my trust in the professionals but am increasingly doubting the wisdom of that choice and relying more on my own counsel. The medicos will tell you that losing weight will help alleviate your apnoea but do not want to seem to acknowledge that the weight gain is a result of the apnoea, rather than vice-versa. So its down to me! And you.

Briefly, I took oximeter tests over a number of days, then over night sleep clinic study (with Big Bloody Ben striking on the quarter hour all through the night - St Thomas' is not the most inspired location for a sleep clinic!).

Upshot? CPAP. I did not have any real difficulty adjusting to it but it unfailingly woke me around 4.00amas I swallowed my tongue, causing the air supply pressure to increase and the mask to blow off myface.

Next stop mandibular advancement device, which helped a little but not enough as I am still suffering daytime tiredness. So last week I purchased my own oximeter to gain a better understanding of myphysiological workings while asleep: I'm finding it illuminating. In addition, I have also purchased a TRD (tongue restraining device) but it is a little too early to pass any reliable judgment.

So where is all this leading? Well, I am obviously a bit of a dimwit because I did not think to question how the efficacy of the MAD was to be monitored. I was sent off with my new toy. Bearing in mind that apnoea sufferers are usually the last people to recognise their disability, this seems something of an oversight by the clinicians. I would be interested to hear if the experience of others is similar.

Hindsight is a wonderful thing. So what does hindsight tell me.

1) My health and well-being has deteriorated needlessly in the last few years because I was too trusting in the advice of professionals.

2) There are a lot of quack remedies out there but also potential solutions which the professionals seem reluctant to look at. Interesting to see that the NHS Choices mentions the didgeridoo as a possibility. There is also Singing for Snorers and other exercise programmes to stiffen up those floppy and saggybits. I only came across the TRD by accident. There seems precious little about these on the Sleep Apnoea Assoc. website, much less the British Snoring Society retailing site.

3) Although the TRD seems to be effective for my particular tongue swallowing trick (still very early days) if current results continue, I shall explore the wisdom of piercing my tongue and threading a string through it at night which might prove less clumsy than the oversize type dummy (sorry TRD) and rather less drool inducing (euukk). But obviously need to get some reliable advice on the practicalities. Don'twant to end up cheese-cutting said organ and ending up with a forked one!

Remind your bosses that you are suffering from a disability and they shouldn't be discriminating against you on those grounds. If you were pregnant or had some serious disease, they could not sack you or otherwise discipline you if you were following doctor's advise and treatment.

So hang in there and don't let the buggers grind you down. Keep after your GP and question your consultant.

What else is there? Knowledge is power. Arm yourself and you will win through.

Thankyou for your replies still taking mask off after an hr or so feeling exhausted all the time x

Aah St Thomas's I spent a night there for a sleep study, slept for 19mins only, and your'e right about Big Ben, counted every chime every throughout the night 4am in the morning I left, and was eating a doughnut outside the houses of parliament by 4.30am.

You now go to Guys

Nothing worse than feeling tired and exhausted, think about it, sleep deprivation, whether forced or by a medical cause is a form of torture and is used by various countries today.

Poppy you will struggle with the mask I was always taking it off during the night, unbeknown to me, and have on occasion even now when its hot, taken it off, and switched the machine off, not even realising it.

Well here goes

It seems I need to emigrate to cypress as I was quite well while I was out there

I did use the mask every night but still taking it of unbeknown to me.

How long does it take for this to work I have to go ack to work next week and I'm petrified that I will lose my job as you know I have to have a meeting regarding sickness although I have only had 4 days off in the last year.

I also suffer from spinal problems

I have had a spinal fusion and find it very difficult to exercise, swimming is ok but as soon as I get out the pain kicks in I am on quite strong drugs to control the pain this I'm not concerned about as I have been coping in the last 5 yrs

I just need to have energy in the day

I know when the tiredness kicks in as I feel very heavy I cannot control my eyes it's like being asleep with my eyes open weird

It could last for 5 minutes or all day

What shall I try next

Red fill I have lost your email address whoops x

Otherwise fit and healthy I don't want to carry this with me any more

I am a young 40 yr old

Well here goes

It seems I need to emigrate to cypress as I was quite well while I was out there

I did use the mask every night but still taking it of unbeknown to me.

How long does it take for this to work I have to go ack to work next week and I'm petrified that I will lose my job as you know I have to have a meeting regarding sickness although I have only had 4 days off in the last year.

I also suffer from spinal problems

I have had a spinal fusion and find it very difficult to exercise, swimming is ok but as soon as I get out the pain kicks in I am on quite strong drugs to control the pain this I'm not concerned about as I have been coping in the last 5 yrs

I just need to have energy in the day

I know when the tiredness kicks in as I feel very heavy I cannot control my eyes it's like being asleep with my eyes open weird

It could last for 5 minutes or all day

What shall I try next

Red fill I have lost your email address whoops x

Otherwise fit and healthy I don't want to carry this with me any more

I am a young 40 yr old

I am very sorry to hear that you ar having problems with your CPAP. Statistically almost 50% of patients using CPAPs cannot tolerate them and treatment fails. Oral appliances that advance the lower jaw and tongue forward have been shown to be very effective in mild to moderate OSA and are much easier to use. I have developed one such appliance that is cleared by the FDA in the USA and also registered in Canada and the European Union. I hope to have it in the UK in mid to late 2015. If you would like mor information on oral appliances, th applianc is the Luco Hybrid OSA Appliance. Your story is unfortunate but there are other options coming soon,

K

I have been diagnosed with severe sleep apnea on a sleep study (45 events per hour).

Somehow this doesn't make sense in light of everything else that has happened to me.

I have had trouble sleeping since last May.  I thought it had something to do with the nasal congestion that has plagued me throughout life.  I had turbinate resection surgery in October.  This greatly decreased the congestion, but I was still waking up every hour.  Hence the sleep study.  I was prescribed a CPAP machine, which I have had since the beginning of the year.  (BTW, the night of the sleep study was one of the most restless I have had ... couldn't get used to all those wires attached to me.)

With a nose mask, I actually find the CPAP therapy quite comfortable.  But for some reason, I always wake up within 20 minutes when I have the mask on.  After awhile, I take it off so I can sleep for longer.

I have an ESS score of only 4 or 5.  My problem was not that I was sleepy during the day, but that I was not even sleepy during the night, and frequently couldn't get back to sleep after awaking (which happened about once per hour).  By doing a web search, I learned that lack of sleepiness was likely a mental condition.  Just knowing this helped a lot, and since then I've been sleeping much better (despite still waking up once per hour).  I am now rarely tired during the day.

But the problem is not solved, because I still have that apnea score of 45 staring me in the face, with all of the long-term problems it can cause.

I am thin (BMI of 21 or 22) and fairly active (ride a bicycle about 6 mi./day).

Any ideas on ...

- why I still wake up once every 45 to 90 minutes?

- why I wake up within 20 minutes when I have the mask on?

- how my sleep apnea can be so severe (45) when I lack almost all other symptoms of sleep apnea (except bad taste in my mouth upon awakening)?