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Hi I am Elaine and I had wondered for yrs if i had sleep apnoea but thought it was all in my head. Eventually I said something to a relief doctor who referred me for sleep study.
I actually went to the study scared they would tell me it was all in my head. but nope they sent me home in the morning with a shiny new machine. I am still confused about my episodes but i know it was very high 98 i think?.
Anyway.I was scared of the mask, I am a mouth breather but I was at the point I had to try as i wasn't sleeping much at all. I would start to drift off to sleep and my snoring and breath loss or both would wake me up with a gasp.
I am claustrophobic and the mask was scary, I still have times where I feel i cant breath, I just break the seal allowing me the illusion of air flow and slowly drop it back into place. After those first seconds the anxiety usually goes But as much as I have a love hate relationship with my mask I wouldn't go without it. my blood pressure went down within the first 6 wks and because my body isn't under constant stress my shortness of breath now doesn't happen all the time just if i have asthma or doing physical work.
I do not sleep 6 to 8 hrs but i can sleep 2 - 4 hrs at a time which is a lot for me but that is because of other medical issues so I am happy. I am also less restless and can fall to sleep in what seems like minutes now instead of hours and hours.
Hi Elaine,
rather than breaking your seal, I saw a little devise advertised on an American site that would allow you to temporarily stop airflow so that you could speak or take a drink without taking the whole mask off. It wasn't expensive, I think about $15 US. I don't know if they are available in this country but think they might be great for those who are claustrophobic. I'll pm you a link if I can find it again.
Despite struggling with some aspects of treatment nearly two years on from diagnosis, the one improvement that has not varied (except for during a short period when my treatment wasn't effective) is that I no longer have to get up in the night to pee and I am no longer bursting to pee when I wake up.
Hi Alma,
sorry, I missed this reply when you sent it, so didn't reply immediately. If I see Jayne or Liz next time I go, I'll mention the idea and see what they say. I quite understand you not wanting to be involved in setting anything up but as I'm about to take early retirement, I'll have some time on my hands, perhaps. I see there was a message from Kath about the plans at York in 2011, so it might even have been longer ago than you remembered.
Alma Page said:
Hi Bernadette
Memory, now you're asking, lol, I think it would have been about 4 years ago. Without saying too much, I think it was a case of what people wanted and what some people thought we wanted. I would not have been involved in it as I thought they were trying to run before they could walk and started to feel uncomfortable, but that's just my opinion.
Good luck if you decide to try, I would be in contact with Jayne or Liz, see what they think. As I said before due to health issues I wouldn't want to be involved on planning etc.
Alma
Bernadette Plunkett said:HI Alma,
thanks for the update. It's a shame we couldn't get anything off the ground in York. I've been attending a support group for Rheumatoid Arthritis in York and that has been useful and interesting. How long ago was it that you tried? I"m hoping to retire soon so maybe would have time to try and give it another go if your try was a while ago.
Bernadette
Hi, don't know if this is right thread, but after falling asleep at "the drop of a hat" and being a zombie at work, I finally did something about it, basically diagnosed with Severe OSA, got machine and had the most peaceful night in a long time.
My wife also slept well as now she doesn't have to wake me up when I stopped breathing.
Won't go anywhere now without my lifeline, only issue I have is camping and having to carry an inverter so I can use the power supply, anyone know of a lead that connects directly to a battery, without the car lighter attachment?
Hi Adam. This is an old thread, but a good place to post your positive outcome after being diagnosed and treated for your severe OSA. So happy for you
I'm not too knowledgeable about the battery side of things but you could start a new discussion about that subject that hopefully others will see. Also, you could ring the manufacturer direct. If you let me know which machine you're using I'll send you contact details.
Not sure if I am on the right bit here but I would just like to say how helpful it is reading other people's experiences of CPAP and how it has changed their lives. I must have been suffering SA for years, waking up, choking, feeling like I couldn't breath, being tired all the time and generally miserable with life. When I went to the doctor and said I felt I was choking when I lay down and couldn't breath she told me it was all in my mind and to stop panicking! Over the years it went from bad to worse and I just couldn't settle and sleep - my husband never knew where to find me in the morning - sometimes in the spare bed, sometimes in the chair in the lounge and even sitting asleep in front of the computer! Eventually it was so bad my long suffering husband insisted I went to see a doctor in Germany. He asked lots of questions and was very quick to send me to a specialist in sleep disorders and things progressed from there. I started using the CPAP machine (or Gale as it is now known as) just before Christmas. It has taken a while, and 3 different masks, plus lots of little tweaks of my routines to find the right balance. I now sleep with 2 soft pillows, use a hose cover, have slightly increased the humidity setting, and have found a comfortable position to get to sleep initially. I now sleep for a marvelous 7 hours or so and no longer dread going to bed like I did before. I can stay awake all day, don't miss film after film at the cinema and am not in a zombie-like state constantly. Yes, it is sometimes a challenge, and yes there are problems sometimes but my quality of life has improved so much and now I cannot imagine life without CPAP.
"When I went to the doctor and said I felt I was choking when I lay down and couldn't breath she told me it was all in my mind and to stop panicking!"
That is shocking!!
I know, I really felt I was going mad. She even suggested breathing into a paper bag which of course did nothing. When I look back on how ill I felt and how hopeless I really wonder how I survived. Thank goodness a doctor finally spotted the symptoms and did something. I knew nothing about SA and would never have thought it could have made me feel like it did.
Karen Hamer said:
Sleep2snore said:"When I went to the doctor and said I felt I was choking when I lay down and couldn't breath she told me it was all in my mind and to stop panicking!"
That is shocking!!
So pleased to hear of your positive effects since getting the diagnosis and treatment you should have had a long time ago Karen. It is the same for a lot of us....I can trace my sleep apnoea right back to childhood! It's sad that many GP's just aren't more knowledgeable to spot the symptoms in patients, and it is hoped that when they get feedback from their patients this will help educate them to spot it in others.
My own GP was very good and always asked if I slept well, which I assured him I did because I could sleep forever undisturbed (or so I thought..........). He was shocked at my severe diagnosis because back then GP's only suspected it in overweight people. However, after my diagnosis he made it his own mission to educate himself.
Really shocked by the doctor's attitude to your problem, all in your mind, they should be struck off! Welcome to the world, and I'm stealing the phrase, of hoseheads.
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