Sleep apnea

[megga]

Any on suffer from this?? been told by my neurologist that he thinks i have this (various reasons) this is down to my OPMD. Just a bit worried as he said, if this is the case i may have to sleep with a mask on. I put up with illnesses (and they just seem to be growing) by just getting on with life, i'll look after them, but i find it very hard to cope when they are in my face, and wearing a mask, well i wouldn't cope. Is there any one of my fellow insulin addicts that has this, and what kind of treatment do you have????

 

[HERE TINTIN]

I am sorry Megga to hear this. I cannot really help as I don't have it. Though recently I have started to snore very loudly, but strangely enough I keep my mouth closed and snore through my nose and I can breathe. I think sleep apnea is different to that. I don't want to sound dim but what does OPMD stand for ? I am sure someone on here will be able to advice you I just wanted to offer you my sympathy, all of these complications are such a lot to cope with.....Tintin

 

[megga]

it's Oculopharyngeal Muscular Dystrophy, mainly effects the eyes, throat and legs.

 

[HERE TINTIN]

Sorry megga that sounds really awful to deal with. Have you asked to see what the mask is like ? Also are they going to run tests to make sure it is sleep apnia ? I know this must sound trite but maybe it won't be as bad as you think it is going to be, sometimes the anticipation of something is actually worse than the real thing, take care...Tintin

 

[Mrs Mad Ronin]

Oh yes, i do

I have had a cpap machine now for 5 years. It took some getting used to having the mask but now it's not a bad. In fact i dont know how i lived before it

 

[yorksman]

I was diagnosed with Obstructive Sleep Apnea about 12 years ago. I spent a night at the sleep study centre and they recorded some 60 or 70 episodes per hour. More than 5 is abnormal.

What it means is that you don't fall into a deep sleep and become exhausted with a whole manner of different possible physical effects. In my case, my heart was under strain.

I was given a CPAP and felt better the very next day. By the end of the week, when I was used to the thing, I was positively full of energy, well relatively speaking. It made a huge difference to the quality of my life. I could go to bed and wake up feeling refreshed rather than drained.

Although this is not diagnostic, you need a proper study for that, have a look at the Epworth Sleepiness Scale. I take my machine in every couple of years for a once over and have to fill in one of these forms. I only score a couple of points now. I was in the severe category before.

 

[megga]

Going to send me to sleep clinic for some tests, but its something that i wont get used to, if its the shape of things to come, i don't see the point in a long term future. It just does my nut in, i look after myself, don't smoke, i exercise i eat the right things, i work hard. Just feels like i have no control over my life.

 

[yorksman]

If you do have OSA and if you do use a CPAP successfully, I promise you that after a couple of nights with a good sleep, you will feel a lot different. That dispair will disappear.

 

[spiritfree]

I have severe sleep aponea. I have just got home from hospital appointment with consultant. I use a bi-pap auto machine. There are a few different types of machines used. When I first started I thought I would never get used to it. I really hated it. However it has now become just a part of my life. I really value driving and would have my driving licence taken off me if I didn't use the machine. My machine is silent once in use and so it doesn't affect hubby at all.

 

[trophywench]

Think of it this way - if someone was throttling you right now - you'd want to get em orf PDQ before you passed out and everything else packed up.

Am I right about that? You would, wouldn't you?

And in effect, that's what a CPAP machine does !

When we sleep, providing we get proper deep sleep - our bodies repair our brains because they are being used all the time - to breathe in and out, to make our heart beat, for our digestive system to function, for the pancreas to function (yes even T1s pancreases, as the insulin producing is only a very minor bit of what a pancreas does all day every day)

If we don't get that sleep for long enough, all sorts of our inner working are likely to seize up. To deny your body that chance whether accidentally or on purpose, is just plain daft. It's like not oiling your bike chain - it'll just go rusty and seize up, won't it?

And the people who suffer from it have told you how much easier it is to cope with LIFE itself, once you aren't in effect waking up every single minute of every single hour of every single night.

But in any case, go and have the sleep study - for all you know although the consultant suspects sleep apnoea, it could be something else entirely.

So why worry about the bridge (of treating apnoea) before you actually come to it, when the road you are on may never even take you anywhere near the river?

 

[AlisonM]

I was tested just before Christmas and luckily got the all clear but I was obsessing over the need to wear a mask as well. I'm really claustrophobic and hate anything restricting my head - I tend to panic and get violent if I can't move my head freely. The nurses let me try one of the machines and, honestly, it wasn't too bad. If I'd had to I'm sure I could have coped with it. I reckon you can do it Megga, and as other have said, it will make you feel so very much better.

 

[yorksman]

Darth Vader made a career out of using his.

 

[robert@fm]

I was diagnosed with OSD in December 2007. I had been to see a GP (not my usual one) and described all my symptoms (including waking up several times per night with the knowledge that what woke me was that I'd stopped breathing in my sleep), and she reckoned that I was just malingering! 🙄 Fortunately, about six weeks later I was admitted to hospital for an unrelated problem, and the nurses on the admission ward picked up my OSA, so I was admitted to the sleep ward. I had problems coping with the mask for the first week or so, but I then got used to it. Only time I've spent Christmas Day as an in-patient.

 

[pav]

I was diagnosed with it in around 2002, DVLA were very kind (NOT) and gave me 2 days notice that my driving licence had been revoked.

I had to buy my own machine and masks / other accessories and servicing. I found like the others that after a couple of nights I was like a new person. The machines now automatically adjust the amount air pressure needed to keep the air ways open.

I used to regularly fall asleep at work, to the annoyance of some who did not know about my condition.

There are several types of masks one can get, the biggest one covers the nose and mouth, probably the one the hospitals use the most. The next one is a mask that just covers the nose, though if you breath through your mouth this and the next mask won't work. The smallest and tge neatest is one that has pads that basically plug the noses nasel openings,

Have a look on the Resmed site and it will show the different masks and machines (can't post a link as working of a pad).

I am now on my second acpap machine, thankfully this one was provided by the NHS, which has now saved me a fair few pounds a year in running costs.

It did take me over a year to get my driving licence back, yet a friend was diagnosed with the condition never lost his driving licence.

 

[robert@fm]

Have a look on the Resmed site and it will show the different masks and machines (can't post a link as working of a pad).

http://www.resmed.com/uk/index.html 🙂

Fortunately all my supplies and servicing are from the NHS (the Lane-Fox Unit at St. Thomas'). I used to be on the Nippy 2 machine (huge, noisy and heavy), but fortunately have been switched to the VPAP-S.

 

[robert@fm]

Interesting link on Resmed's shop site:

Sleep Apnoea and Driving - The Facts

 

[megga]

Thanks for the advice, i have decided, i'm not ahead with the test. I put up with a lot in life, but i wont be able to cope with sleeping with a mask. its not the mask, its what it represents to me, i wouldn't be able deal with it mentally. I'm 45 and i may have 40 years left, or not using this mask may shorten my time to a few years, but i going to live my life happy and as the great man said "I'll do it my way"

 

[yorksman]

You are perfectly entitled to live your life as you see fit but there is nothing wrong with giving it a go. You can always stop if you feel it is forcing you in a direction that you don't want to go. You can always say, 'tried that, it didn't work for me' and walk away.

 

[pav]

Thanks Robert for putting the links in, On the tick test at first was scoring like 22 out of 24, now with the machine rarely score above 4.

As yorksman says, I would go along with it and see what they can do for you, its deffinately turned me around from where I was, and imediatily stopped some of the very embarrassing problems I had with having sleep apneoa.

 

[Mrs Mad Ronin]

As you may or may not know (depends if you have seen my other threads) i have a severe anxiety disorder and as a result have a fear of death and being trapped. When i first found out i had sleep apnea and then finding out i had to have a mask, i went to full meltdown. My anxiety got even worse and i won't lie, i tried to do everything in my power not to wear the mask.

But with the help of my partner and the hospital team. I finally agreed to give it a try. For the first few days, as soon as i put it on i would have a full blown anxiety attack, so bad i passed out. But like i say, my partner helped me. i kept trying and after a week, i could use it without any problems.

I'm not going to lie, it was tough and i would literally cry and panic. Yes a grown woman reduced to tears over this machine. However, i kept at it and now, i would be lost without it. Sometimes though i still have issues, but that is more when my anxiety is on a high. But i know that it has improved my life so i fight it and do it.

I understand mentally the impact you feel it will have and i know it will if you are so afraid. I really do get it.

But if you could, with the support of loved ones try it and keep at it, i can promise you it will make a difference. If your really can't do it, talk to your specialist there are other things they maybe able to recommend.