sleep problems 3 yrs after being on CPAP

[bigdave69]

Hi Everyone
Before i start, a bit about me.
Male, aged 53, weight 114Kg, height 1.73m (about 5ft 8in in old money)
In October 2009 made redundant (partially due to OSA but don't start me on that!) and am now on early retirement pension. In Jan 2010 I was 121kg and made a new yr resolution to lose weight, went on a diet with advice from nurse at local surgery, joined a gym , which i still go to twice a week and got down to 108Kg after 3 months flamin hard work. only to be told when i went for an annual check up at sleep clinic, that losing approx 2 stone "was nothing and i need to get down to approx 75kg!" this encouragement just caused me to give up ! i have not been that weight since i was a teenager.
Now can anyone advise please. Almost 3 years ago after getting into trouble at work I was eventually diagnoses as having severe OSA and given a CPAP machine. After trying out several masks i settled on a Resmed Mirage. Now my problem, I am finding over the last several months that I am having very restless nights again and lie in bed for hours listening to my misses snoring. I am not to the point of falling asleep during the day, but am beginning to wonder if either my OSA is either getting worse or the machine is not working as it should (Resmed Escape S8)
This new year i started on a new diet again, increased my workouts at the gym, and No. of visits, but 2 weeks ago damaged my calf muscle / tendon in my right leg, causing severe pain. this has set my exercise right back as i now cannot even do the Cardio exercises i was doing a year ago when i started. What i am getting at is that I really am trying to get fit (i believe i am fitter now than I have been for years) and lose weight but the apparent lack of understanding and assistance from the clinic is unbeleiveable. If i was a smoker i would be assisted with all sorts of things, but with OSA all I seem to be told is get down to the weight i was when i was 15 years old !! The diet has now gone by the wayside until I can start hitting the Gym again.
At my last annual check up I did ask if they ever checked me again to ensure that the pressure originally set set on my machine was still correct, but was told they only do this if someone lost a considerable amount of weight.

I know we are told it is mostly a weight issue but on my last visit there was 2 people with their machines literally as thin as a rake! I am not totally convinced it is a purely weight issue.

Apologies for dragging it out but as other people will understand it is a subject I fel very strongly about.

[Barely Awake]

A fellow hosehead that lives locally has a smilar figure to James Bolam (of The Likely Lads etc.) and I have seen plenty of slim hoseheads at the clinic and at conferences so I personally don't think it is a certain indication - having said that we all know weight and neck size is broadly indicative.

As to why you have started having problems as you probably know there could be many reasons. Doesn't harm to step through this sort of thing from first principles. First stop is to check the CPAP machine of course - check the filters - have you changed them and do you regularly clean them? Is the pressure firing out as always or when you slip your mask on ? What about mask leaks? Have you changed your headgear and mask when it wears (I personally found I need to redo the headgear a tad every two months)? Have you checked the hose for leaks? Cupping a hand around the hose and sliding along the length would usually find any leak but I found a self sealing slit once by starting my machine up with mask on and feeding the hose into a basin of water just as you would a bike inner tube. If all the kit is working it is time to ask if you have changed weight or shape? Is the pressure still high enough etc.?

You know all this already so if you have checked everything and have not been offered a solution at the annual check up it is time to write to your specialist.

[Tigers Fan]

Hi bigdave69

With a clinic as helpful as yours - and many others - have you considered learning how to titrate your own machine?

TF

[Sparticus]

Rubbish!!!

Hi Dave so sorry to hear that you are being treated so badly its appauling! Weight is not the cause of OSA it can just cause more problems thats all, its like saying the sweets you eat will cause diabetees, Rubbish! If I was you I would be down the clinic and ripping into them, politely of course, your preasure changes alot during a week my preasure varies from 7.2 to 12.7 how can they say its not an issue??? The mind boggles how some of these nurses and doctors get through the day, Get a second opinion mate see another doctor you have a right to be able to do this. Also if possible tell your new doctor that you want a different clinic you may have to travel a bit further but its worth it to get treated right. Also dont take any notice about 75Kg they are talking out of there backsides Im classed as a very fit mountineer and go scrambling up the mountains on weekends Im about 5'11 and weight 95kg. Dont listen to there stupid remarks get yourself ginned up on the facts then take them with you to the docs because you probably know far more than they do. Get the treatment you deserve and if not then complain untill someone does listen, let me know how you get on

[Richard]

Hi bigdave69,

My weight is between 72-74 kgs., I'm 66 and have Sleep Apnoea, but please don't hold it against me; you're right, OSA is weight-related, but not always so. And there is more than one type of Sleep Apnoea. More seriously, it sounds as though your sleep-clinic are trying to bargain with you: if you lose some weight, we'll help you a bit more. How dreadfully condescending is that? It is all too often this attitude among medics that prolongs the path from initial visit to your GP to getting a diagnosis and receiving treatment.

If you are diagnosed with OSA, and have been referred to a sleep-clinic that is proving to be a little uncooperative with your requirements, then go elsewhere. It is your right. You can find all the sleep clinics in the UK on this site, try one not too far away and give them a call. Remember, the NHS exists for you and me, not for the benefit of the people employed there.

There will soon be a web-site available where you can get a self-diagnosis print-out of OSA symptoms which you can print out and take to your GP. This will shorten the time to diagnosis for any NHS patient by at least two years.

Don't be fobbed off; empower yourself and see what happens!

Richard

[symmit]

You could always buy yourself an Automatic CPAP machine and if it doesn't give you any benefit for your sleep give it to your wife for her snoring

[Emale1999]

Hi

Hi Bigdave69

Total CPAP newbie here so bear with me if I'm wrong! I was given an oximeter (a month after starting CPAP) which I had to wear overnight, this was to check my blood oxygen levels to see if the CPAP was set at the correct pressure if I was you I'd ask the clinic if they could perform the same test as your CPAP machine might need 'turning up'. As for weight being a factor, I'm an average weight but I have naturally large tonsils and a large tongue which cause me the most problems so for them to say it's purely weight related is plain stupid!


Thanks for reading

[Richard]

Finger Pulse Oxymeters

I would recommend to anyone they get themselves a Finger/Pulse Oxymeter. You can find them on Ebay by keying in 'finger pulse' in the search box and you can pick one up for around £30.00. These devices give a very quick assessment of your current state of health.

They give a reading for your heart-rate as well as the blood-saturation figure, and you can carry it in your pocket.

Your blood saturation figure should be 95% or above, if it consistently falls below that, it is indicating something is wrong. Certainly, that is the case with OSA. As the charts have shown, an 'apnoea' is shown by a sudden dip in the graph; the lower, the more frequent and the longer the dip, then the more serious the apnoea. The CPAP Therapy attempts to prevent the dip in saturation by keeping the airways open and the user breathing regular breaths.

After strenuous exercise, or a gentle jog around the block, a quick reading from your oxymeter should give an indication of how well you have done and how much capacity you have left.

[symmit]

I would recommend to anyone they get themselves a Finger/Pulse Oxymeter. You can find them on Ebay by keying in 'finger pulse' in the search box and you can pick one up for around £30.00. These devices give a very quick assessment of your current state of health.

Make sure if you buy one that it is a recording device - otherwise you'll not get the graph of the full night. I have one and it's very handy for evaluating the effectiveness of therapy, alternative masks etc. That and a full data Auto CPAP is in my mind the best way to keep your therapy on track as life and fitness changes.

[Emale1999]

Hi

Re: Retirement

I'm wondering if anyone else apart from me and bigdave69 have been forced to quit/retire/accept redundancy as a consequence of OSA? Up until yesterday I'd been employed by the same company for over 20 years, for the past 18 months I'd been on the sick during which time my job was held open. However after being diagnosed with OSA and telling them I was optimistic about returning to work they told me in their view I "would never be fit to return to work" citing that 'in their view' I wouldn't be able to drive forklifts or work night shifts...I hadn't realised they'd suddenly became OSA experts overnight... Anyone else got similiar stories?


Thanks for reading

[symmit]

I'm self employed, and often drive 8 hours on top of an 8 hour or more working day. I'm not giving that up! I don't think your employer is allowed to discriminate against you on health grounds, if you're capable of safely executing your job then the only thing they need to do is ensure you are under successful treatment for the condition. You're probably safer than the people they employ that have OSA and don't know it yet.

[Fredxx]

the Disability Discrimination Act is a wonderful tool in these cases...

Ultimately the position is this:

Successfully treated OSA means you are able to function normally during the day, so is not grounds for terminating your employment. If they do, you have an extremely strong case should you take it to a tribunal... lawyers would jump at the chance to take it on "no win no fee" because it is an easy one.

If your employer has concerns, your employer can get Jobcentre plus involved, and they will help the employer make any adjustments to allow you back in to work. If the employer refuses this it only makes any tribunal case stronger.

I speak from experience in making use of the DDA and Jobcentre plus, although not for a case involving OSA

[Emale1999]

Discrimination

Hi

Thanks for the replies, I'm glad it's not just me that thinks I've been treated unfairly. I don't want my job back because to be quite honest the way the company have treated me has soured my view of them, however I do intend purely from a matter of principle to take them to a tribunal so that other people might benefit. The way I look at it more fool them for letting go a hard working (so I've been told!) employee who like symmit said is probably fitter than some of the people currently employed who may have undiagnosed/untreated conditions.

Thank you for reading

I'll keep everyone updated about this matter

[Richard]

You do not mention whether or not you have sent your driving-licence to the DVLA for assessment. This is a compulsory step for anyone just diagnosed with OSA. They will send your licence back only when they have been satisfied (by your medic.'s report) that you are now safe to drive.

Without a driving-licence you cannot drive, whether a motor-bike, a van or a fork-lift truck; if you have already sent in your licence, and had it returned from the DVLA with their approval, that is extra ammunition towards getting your job back. Otherwise, your employer is well within their rights to offer you the alternative of redundancy.

The DVLA must be made aware you have OSA, and the onus is upon you to tell them.

[Berneta]

Blizzard in the Midwest USA

Hi all, we got the worst blizzard here that I have seen since I was 10 years old, 20 inches of snow and 60 mph winds all day yesterday, and all night long last night, Drifts 6 ft deep all across the front yard, and the car is buried in the snow drifts-- they piled up all over esp in front of the garage door where the 4 wheel drive pickup is parked. The son is outside shoveling and taking care of our animals. The Outdoor cats refused to come out of the Barn--so he fed and watered them out there. The Chickens won't come out of the Hen House either. LOL. The Power Company called us to say that the power failed, as tree limbs fell on the line early last evening--and they couldn't get out to fix anything in the storm. Snow Plows gave up as the drifts piled up behind them as soon as the passed. So we were without power for about 17 hours, (lots of others are still without power.) No heat in the house all night and we just used our oil lamps. Climbed into bed last night with a bunch of quilts and blankets and two cats. I was warm enough, but I couldn't use my CPAP--and was in a state of "half-sleep" most of the night. The wind was pounding the house and pelting it with twigs all night long--and it howled like a Banshee. And rattled the windows. I was sleepy enough to get a few hours of sleep--but sure missed my CPAP and kept waking every few hours. I think I would have slept ok with the CPAP running, to help drown out the sound of the wind, Got up this morning to find the hubby in his recliner chair wearing all his clothes, coat and hoodie topped by a baseball cap, and covered by a blanket. It was 49* in the house by then, HE said enough of that--he is buying a generator. LOL. I am tired today, Never dreamed I would miss my CPAP so much! Going to take a Cpap Nap later, and go to bed early tonight. The sun is shinning and the storm is over for us--all but the digging out--and picture taking. It has ended for us--but continues on to the North East. That was my first night without my CPAP--not happy about it either. Last July--I would never have believed that I would want it that much. You really do get used to, and depend on them! x Berneta