Positive Effects Since Treatment for Sleep Apnoea (CPAP or other)

Replies to This Discussion

Permalink Reply by Kath Hope on April 7, 2011 at 14:05

(Well, it was easier for me, as I could just copy and paste my story from my website LOL).

 

My story of living on CPAP for the rest of my life started with the day I confidently went to the Sleep Specialist thinking I would be given the news that my sleep test had proved I didn't have sleep apnoea after all.  HOW WRONG I WAS!!!  Instead I was told I have moderate to severe sleep apnoea, with a reading of 30 apnoeas per hour.  I was convinced I didn't have the 'condition' as I wasn't ever aware of waking up in the night to start breathing again, and I also wasn't overweight, which so many people (wrongly) think has to be the case.  Yes, I knew I was a snorer (but it never bothered me, as I slept through it!).  I'd always been known as a 'dead head' in a morning, which I now realize was because, unbeknown to me, I'd hardly slept due to stopping breathing approximately every 2 minutes.  I was always tired and exhausted, but I put this down to being very busy running my business, and I just allowed myself the odd nap when I could fit it in.  In a way, it was a relief to be given my diagnosis, as at last I could make my friends and family feel guilty for calling me a 'dead head' and I was told I could live a much better quality of life with CPAP treatment!  It also explained the reason why I would practically collapse with exhaustion every now and then, and I've lost count of the times I'd been checked for things such as anaemia, overactive thyroid, glandular fever etc.  In fact, if I'd been diagnosed with sleep apnoea years ago, we could have saved the NHS a lot of money!

 

The day I brought my CPAP Machine home was exciting as I'd read the stories of the miraculous overnight cures others had gained from using their machines.  Well I can assure you that didn't happen for me (and most sufferers tell me it didn't happen for them either).  It's wonderful to hear such lovely stories of overnight success, but for most of us we have to persevere until we get the comfortable sleep we deserve!  I was determined to get my treatment working for me though, due to the other dangerous health problems associated with untreated sleep apnoea - such as heart attacks, strokes, diabetes, thyroid problems, alzheimers and other links that they are finding out as more research is being done.

 

To fast-forward to me finally getting comfortable CPAP treatment, the difference was unbelievable to my energy levels, and whilst I wasn't actually overweight, the excess I was carrying around just practically fell off me.  Another strange thing is that all the colds and chest infections I used to get, stopped happening.  No longer did I fall asleep in the cinema or took the afternoon naps that had become part of my life.  I tell you what, I can now say that my CPAP has grown to be my best friend, and I won't even sleep one night without it, as on the odd occasion when I've had to, the same old symptoms return, reminding me of what a hard struggle life used to be!

• ▶ Reply

Permalink Reply by The SleepGuide Crew on April 7, 2011 at 17:58

Rosemary Kemp's asked us to copy most of a post she'd put on another discussion on here, as it's apt that her comments go in this discussion too:-

 

Without the diagnosis of Sleep Apnoea, I believe that I would now be dead or close to death. I am very lucky that I didn't have a heart attack or a stroke.   

 

The cpap treatment which followed my diagnosis has led me to be able to shift over six stones in weight and be removed from the diabetic register (that is what my GP suggested last time I visited the surgery) as I am controlling the glucose so well with effective dieting (only possible once I started to sleep at night and own a body which now behaves more normally). I have also become euthyroid rather than hypothyroid and my blood pressure medication has been quartered. My BP and pulse are now in the normal range.

 

There are no more calls for a gastric band operation to save my life and my cholesterol readings are also close to normal. I survive (not enjoy as such) the gym and now use "profiles" such as "cross country" and "aerobics" on the treadmill and exercise bike and can actually walk after being on the cross trainer, without my knees collapsing.

 

I no longer need to walk backwards into the wind or use my inhaler. I can walk without my back hurting and I can move and climb the stairs on my feet rather than on all fours!

 

The reason I share this on the forum is that without the awareness of one particular specialist just over two years ago, I would not have such a good story to share. Recognising severe OSA has it made it possible for me to reverse my walk into an early grave. 

 

Rosemary Kemp

• ▶ Reply

Permalink Reply by Jackie on April 7, 2011 at 23:00

Well, much like Kath I really did not think I had sleep apneao never entered my half dead brain  - having several other problems I though I was either going insane or had ME - I kept googling my symptons (not it did not say too late lol) but kept shouting ME ... (this was also before they diagnosed the brain tumour and it was actually the specialist who found the tumour who referred me to Chest clinic, he was the 1st person to listen to me how exhausted I was)

The ME google actually made sense of the complete and utter exhaustion I felt. Not so much as dead head slow to start as in never starting and dead head 24 hrs a day and having difficulty putting one foot in front of the other, yet despite this when they diagnosed me I was shocked.  I was averaging 47 seconds not breathing and average a rate  69 times an hour --- as a good friend said ... 'my God, no wonder you are knackered'

I am struggling with CPAP - as in the sense of a comfortable leak free mask - the actual cpap machine has made a difference for me and I am actually getting some sleep - now up to around 3-4 hours of sleep and  is a huge huge improvement for me (albeit being broken).

Cracking the mask is certainly the way to go as Rock said.

I hate to think of just where I would be now without the cpap -  

and to be as I was or suffer the cpap? - well, there is only one answer  - I'm here !!!

 

hugs Jackie xx

 

 

• ▶ Reply

Permalink Reply by Alma Page on April 16, 2011 at 10:58

Like Kath my life started again when I was diagnosed with sleep apnoea, I went to the sleep test centre at York thinking that they would not be able to find out what was wrong with me, but was amazed to find that I had over 50 apnoeas per hour, if they had not found out I don' t think I would be alive now. Okay its a nuisance on a night sleeping with a machine that makes me sound like Darth Vadar (that's what hubby says!! LOL) but for me it keeps me alive and living a life, otherwise I would be asleep all the time, I still have funny does sometimes on a night but that is not the sleep apnoea, I also have a sleep problem where I have night traumas, but I can live with them they are bad when I am stressed, so the answer is stay stressless. I wasn't overweight when they diagnosed me, have put some on since, but that's good living LOL, and my consultant told me that loosing weight wouldn't make much difference, and also that trying to loose weight is very hard with my condition, but not impossible. Was at the clinic last Monday at York and Jayne, my nurse consultant had to turn the machine pressure up a bit, turns out that I have an enlarged tongue in my throat, which doesn't help.

 

Finding a leak free mask is impossible I think, haven't found one yet and must have tried them all LOL!!, but the latest one is not doing too bad its a mirage thingy, small one, and it seems to do the job!

 

I certainly think the CPAP is the best thing since sliced bread and would recommend anyone who thinks they have sleep apnoea to see your doctor.

 

Kath, we are trying to set up a forum in York, lets hope we can.

 

Take care all and keep cpaping!

 

Alma

• ▶ Reply

Permalink Reply by Kath Hope on April 17, 2011 at 17:59

Great to hear the York support group's still on the cards Alma :)

Alma Page said:

 

Kath, we are trying to set up a forum in York, lets hope we can.

 

Take care all and keep cpaping!

 

Alma

• ▶ Reply

Permalink Reply by The SleepGuide Crew on April 19, 2011 at 19:22

Have been asked to post this brilliant response from a welcome new member, Graeme Simpson, who sums up nicely his positive experience:-

 

"I was in major denial for years, refusing to admit the tiny amount of sleep I had was SA as it was associated with being overweight and I didn't want to wear the mask. Dropping off at work (and being warned for it) dropping off midsentence in the pub.  I know, sounds stupid, but I was sure it was just stress and not SA.

 

And then...I had a "turn" due to stress and the doctor in A&E sent me to a sleep clinic.  God, it was embarrassing but when they came back and told me I was having 57 apnoeas an hour, I knew I was in trouble.  I took the machine and the hospital very kindly spent a couple of hours explaining how it worked and "ramping", but driving home I thought it was as bad as being told I was disabled, it looked so awful.

 

So I put it on for my first night - 7 hours straight sleep for the first time in years.  I can say hand on heart, it has given me my life back.

 

I now get about 5 or so hours a night uninterrupted and a couple after that (due to a toddler, not SA!) but it has made my life so much better.  It took some getting used to but I cannot tell you how much I wish I'd gone to the GP and faced my fears a long time ago.  

 

It's not pretty, but it really does work, and it will, all things being equal, prolong your life.  Fellow SA sufferers, always remember that!"

 

by Graeme

• ▶ Reply

Permalink Reply by symmit on May 4, 2011 at 8:06

Moved from its own thread: 5 mth update
Well - 5 months now on CPAP after 38 years of snoring and choking.

Life is better than ever! I can work 10-14 hrs a day, go without eating for over 8 hours, sleep consistently for up to 10 hrs without waking, keep mentally active all day, drive for hours without having to stop and only drink coffee when I want to, not when I need to.

It's been an up and down path, and an expensive one as I've paid for my own testing, masks, machine and consumables, but every penny has been worth it and has enabled me to take on more work, being self employed sickness is very expensive.

I've kept extensive stats from both my machine and from my oximeter, and my ahi is consistently under 2, ODI consistently under 1. I've also found myself the perfect nasal mask (for me) - the sleepweaver - comfort seems to be everthing. Still seeking the perfect fullface mask, the Forma is working well for those stuffed up nights but the headgear seems hit or miss and sometimes it can leak a lot, and noisily.

Other benefits? I used to suffer a lot of dry skin and allergies, don't want to speak too soon as hay fever season is coming but the better sleep seems to be clearing up the skin problems and the allergies, only summer will tell if it's a miracle cure for hay fever but I suspect it's going to help, if only by filtering the air I'm breathing for about a third of the day.

I feel that I've not suffered at all from self-titrating and managing my own therapy, with the readouts from the machine and a glance at the outcomes in terms of health and wakefullnes I've figured that I never need more than 13hPa, and that there's no statistical difference between setting the minimum at 8 or at 13 (using an APAP) so I can use whatever is comfortable in that range. I've found that different masks behave differently at different pressures, so the sleepweaver is uncomfortable at low pressures (kill the ramp!) and the forma is quieter and seals better high (so I'll use that set at 10 minimum). I've also come to the conclusion that sinus or congestion problems are better dealt with by setting the machine wide open (minimum 4hPa) and using the full face mask than by having a night or two off, for me having a couple of nights without means tiredness and disturbed sleep again, for her it means loud snoring.

Good hints and tips picked up from the various internet forums, using the headboard as a hoselift, adding a small pinch of crystal menthol to the humidifier, making sure your face is dry and grease free etc, use a hose cover and buy some CPAP cleaning wipes for those nights you've forgotten to clean the rig! And I've met some interesting people and discovered that people I know are also CPAP users. In face I've also helped an old friend seek treatment himself (he's awaiting testing, the joys of the NHS) - I popped around to his house and his wife was complaining about his snoring so I loaned him the oximeter - next day he was at his GP with printed graphs...

So it is safe to say that CPAP has given me a life I've never had before, I'm of the opinion that it's a very under-rated therapy by the general medical profession (my GP was no help, but as I'm just not ill any more I've not been bothered to change!) who seem more interested in dispensing pills for blood pressure and treatment for diabetes and weight loss, when underlying for those of us with OSA could be the OSA causing the other symptoms, treatment for which is probably cheaper, drug free and simple, if slightly inconvenient.

• ▶ Reply

Permalink Reply by Rachel Dickinson on May 4, 2011 at 10:55

very positive here right now as having cpap has avoided my little boy having a tracheostomy, been a long 7 weeks in hospital and feel bad he has been through surgery but everything has been tried and so far he is stable on cpap!

• ▶ Reply

Permalink Reply by Bernadette Plunkett on February 17, 2016 at 17:40

HI Alma,

I'm in York too and I'd be interested in a support group. Not sure if your 'Jayne' is the same as the Janey I saw once who was fabulous. The woman I usually see is just not interested and doesn't seem to take seriously anything I say.

Alma Page said:

Like Kath my life started again when I was diagnosed with sleep apnoea, I went to the sleep test centre at York thinking that they would not be able to find out what was wrong with me, but was amazed to find that I had over 50 apnoeas per hour, if they had not found out I don' t think I would be alive now. Okay its a nuisance on a night sleeping with a machine that makes me sound like Darth Vadar (that's what hubby says!! LOL) but for me it keeps me alive and living a life, otherwise I would be asleep all the time, I still have funny does sometimes on a night but that is not the sleep apnoea, I also have a sleep problem where I have night traumas, but I can live with them they are bad when I am stressed, so the answer is stay stressless. I wasn't overweight when they diagnosed me, have put some on since, but that's good living LOL, and my consultant told me that loosing weight wouldn't make much difference, and also that trying to loose weight is very hard with my condition, but not impossible. Was at the clinic last Monday at York and Jayne, my nurse consultant had to turn the machine pressure up a bit, turns out that I have an enlarged tongue in my throat, which doesn't help.

 

Finding a leak free mask is impossible I think, haven't found one yet and must have tried them all LOL!!, but the latest one is not doing too bad its a mirage thingy, small one, and it seems to do the job!

 

I certainly think the CPAP is the best thing since sliced bread and would recommend anyone who thinks they have sleep apnoea to see your doctor.

 

Kath, we are trying to set up a forum in York, lets hope we can.

 

Take care all and keep cpaping!

 

Alma

• ▶ Reply

Permalink Reply by Alma Page on February 17, 2016 at 18:14

Hi Bernadette

We did try to set up a support group in York but it never got off the ground, had a couple of meetings but that was all. Unfortunate my health for other reasons is something that would not allow me to be a part of one now.

It's the same lady, Jayne is fantastic, but such is her workload that she usually only sees newbies now, I've always found York friendly and helpful within the parameter they can work and that's it. I am much more compliant on an apap but have to buy my own as York will not let me have one, this is a shame as these last 3 years, especially the last one, I've been much more awake on a daytime, my AHI is now low at average 0.6, which are mostly centrals and the apap treats these better. It's frustrating but it's all down to money!

Alma



Bernadette Plunkett said:

HI Alma,

I'm in York too and I'd be interested in a support group. Not sure if your 'Jayne' is the same as the Janey I saw once who was fabulous. The woman I usually see is just not interested and doesn't seem to take seriously anything I say.

Alma Page said:

Like Kath my life started again when I was diagnosed with sleep apnoea, I went to the sleep test centre at York thinking that they would not be able to find out what was wrong with me, but was amazed to find that I had over 50 apnoeas per hour, if they had not found out I don' t think I would be alive now. Okay its a nuisance on a night sleeping with a machine that makes me sound like Darth Vadar (that's what hubby says!! LOL) but for me it keeps me alive and living a life, otherwise I would be asleep all the time, I still have funny does sometimes on a night but that is not the sleep apnoea, I also have a sleep problem where I have night traumas, but I can live with them they are bad when I am stressed, so the answer is stay stressless. I wasn't overweight when they diagnosed me, have put some on since, but that's good living LOL, and my consultant told me that loosing weight wouldn't make much difference, and also that trying to loose weight is very hard with my condition, but not impossible. Was at the clinic last Monday at York and Jayne, my nurse consultant had to turn the machine pressure up a bit, turns out that I have an enlarged tongue in my throat, which doesn't help.

 

Finding a leak free mask is impossible I think, haven't found one yet and must have tried them all LOL!!, but the latest one is not doing too bad its a mirage thingy, small one, and it seems to do the job!

 

I certainly think the CPAP is the best thing since sliced bread and would recommend anyone who thinks they have sleep apnoea to see your doctor.

 

Kath, we are trying to set up a forum in York, lets hope we can.

 

Take care all and keep cpaping!

 

Alma

• ▶ Reply

Permalink Reply by Bernadette Plunkett on February 17, 2016 at 18:31

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

• ▶ Reply

Permalink Reply by Alma Page on February 17, 2016 at 18:43

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

• ▶ Reply

▶ Reply to Discussion

• ‹ Previous
• 1
• 2
• 3
• Next ›
• Page