Here is the latest eNewsletter summary of what has been on the blog over the past month:
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Well I had to just put pen to paper about my care and treatment to try and give a bit of hope to anyone that is struggling. I started on CPAP about 7 months ago. At first I was given a normal CPAP machine and full face mask. Things did not go too well and I kept going back to my local sleep clinic. The sleep tech was really good and helpful, she did all she could to help me, she sent me home with an APAP to see what pressure my normal machine needed setting at.
I had it for 2 nights and these where the only 2 nights I had any sleep at all!!! During my time struggling I had to go off work sick, as it made me so down, and I could not think what I was doing . I asked about seeing if there was any chance getting an APAP, but this area does not prescribe APAP and seeing as I had only had used one for 2 nights I was unsure if it was all in the mind !!! I used my CPAP every night without fail for at least 4 hours but I was just feeling worse and worse.
I was due to go and see the specialist and I was at my wits end as I had been trying for about 20 weeks. I am a fighter but by this time I was in bits and unable to think about anything, so I came off my CPAP thinking that in 2 weeks’ time I was seeing the specialist and I would get some help!!!!! Little did I know what was going to happen!! I saw the so-called sleep consultant for this area he basically he told me that there was nothing he could do!!!!!
He said I was suffering from insomnia and needed to see a psychologist . Then he looked in down my throat said I could not have an operation to help me because I had too much fat, and because I had not used my machine for the last 2 weeks he wanted it back and asked if I had got it with me !! So the next day I went to hand it back in, all the time knowing that I needed something. I was totally gutted, it was like sending me home with a ticking time bomb!!!
For the next few weeks I just thought sod it, I will just not have any treatment. But Kath Hope from hope 2 sleep suggested going back to my GP and maybe seeing someone else. After talking to Roz, who had already been treated, shetold me about Mr Oko at Boston. He was 3 hours drive from where I live but it was well worth going to see him. He gave me an APAP machine due to my sleep test results, along with a Respironics Blue Gel mask. That was 5 weeks ago and since then I have used the APAP every night and I am sleeping for about 7 to 8 hours. As the days go on the more happier I am with it.
I have not felt like this for over 15 years. During this time I have had depression and was nearly sectioned. I also suffer with fibromyalgia, and the last few days these things have improved so much so that in time I will hopefully be able to come off my medication. So never give up, there is always someone out there that can help, you just have to find the right specialist. I got my appointment to see Mr Oko within a approx. a week and attended his clinic a few weeks later.
Before you go in to see Mr Oko you see a nurse who tells you every thing you need to know about sleep apnoea, which also puts you at ease. I cannot say how grateful I am to Mr Oko and his team for their help. If I had gone on with no treatment I dread to think what would have happened to me. I already feel that I’ve had at least 15 years of hell due to sleep apnoea. I want to say thank you to you all at Boston and thank Mr Oko for giving me a life again. The other 2 people i have to thank are Kath Hope from hope 2 sleep and Roz for getting me to see Mr Oko.
Men who suffer from obstructive sleep apnea (OSA) are seeing another potential benefit from continuous positive airway pressure therapy, or CPAP: improved sexual function and satisfaction in non-diabetic men under age 60.
A study out of Walter Reed National Military Medical Center in Bethesda, Md., assessed the erectile function and libido of 92 men who were newly diagnosed with OSA and starting CPAP therapy. Erectile dysfunction (ED) is common in OSA patients, and nearly half of the men in the Walter Reed study reported the presence of ED. Patients were assessed again after one, three and six months of CPAP therapy.
The results show that CPAP improved the sexual function and satisfaction in the majority of men in the study regardless of their level of erectile function reported at the very start. Those with ED had more robust improvements and even many without ED reported improved sexual function and satisfaction.
“We were surprised at how prevalent ED is in a relatively young population of men with sleep apnea. The average age was 45,” said Joseph Dombrowsky, MD, the study’s primary investigator. “But we were similarly surprised at how robust a clinically significant response the men had with CPAP therapy.”
The abstract “The prevalence of erectile dysfunction and impact of CPAP therapy: a prospective analysis” is being presented today at SLEEP 2012, the 26th annual meeting of the Associated Professional Sleep Societies (APSS) in Boston.
I will be speaking at the World Health Care Congress Europe about the Sleeping Disorders Centre as an innovative healthcare partnership working to reduce road traffic deaths. The talk will cover:
- Exploring the link between obstructive sleep apnoea and road traffic accidents
- Working in partnership to identify where healthcare interventions can deliver benefits to the wider community
- Demonstrating that surgical treatment of sleep apnoea and investment in ENT services delivers measurable reductions in road traffic deaths and injuries
This is taking place in Amsterdam on Wednesday 23rd May.
I am a 55 year old male from Boston in East Anglia, this is a brief synopsis of my condition Obstructive Sleep Apnoea, from diagnosis to treatment
I want to tell others about Obstructive Sleep Apnoea, for at least 35 years I was terrified to go to sleep, I would stay awake for days on end until I would go unconscious with sleep deprivation. I always had the most awful dream of drowning, so vivid! I had to fight to wake up ( and I mean fight ) I knew I was “dying”, I would wake with such exhaustion. I would do anything to stay awake, anything!!
I have other serious health problems and went to see my GP about 4 years ago, by chance I happened to tell him this story thinking he would laugh at me and send “me home with a flea in my ear”. With astonishment he said to me I think I know what is wrong, I am going to send you to see someone who I think can help you, this Gentleman’s Gentile MAN was Mr Oko, within a period of 10-15 minutes Mr Oko made me feel very welcome and at ease, his patience was endless, after the “examination” he sent me home with an attachment which I wore for 24 hours took it back and waited for my next appointment.
When I went for my next appointment, and may I say with some trepidation and fear, my fears were not only bourne out, they were far worse than I could take in. Mr Oko informed me that whilst I was asleep that at least every other minute I stopped breathing I was a “tongue” swallower, though he quickly reassured me straight away that he could help.
Mr Oko showed me how to use a C-Pap machine and that it would take a few weeks to get used to it. I remember thinking on my way home “silly bugger, who could ever think I could sleep with this on my face, it will never happen”!! But I thought well try it and see, initially I would try different face masks, I would pull them off when I dozed off, I would gag but through the next weeks and months I got nothing but 100% support off Mr. Oko and his team. Now those who use the C-Pap machine will realize how serious my condition is when I tell you that my settings are 18-20.
I am use to the machine and have been now for about three and a half years, we are really “quite good friends”:-) I brush my teeth, wash my hands and face, pull the duvet down, put my mask on and get into bed. I am usually asleep in about 60 seconds and get a good 10-12 hours sleep and my dreams when they happen are all Fantastic, ones I want. Now I sleep on clouds, amoungst the stars, in the heavens.
The Great news for those who are new to this condition is that it is NOT “quackery” it is medicine and IT WORKS 100%, all you have to do is, Do what Mr Oko asks and I will make you a promise DO IT AND YOU WILL BE AMAZED. We have a Great Doctor and Surgeon that the whole of medicine should be very proud of. Mr Oko has a fantastic team, through the reception team, his secretaries and not forgetting his nursing team oh and of course the tea machine.
Please, please if you are patient, thoughtful and kind remember, you will get 10 minutes if you need or half an hour if you need, no matter how grumpy you are or how lousy a day you may have had, “just smile a kindly hello” as this team will always be there for you as they have been to me! I respect each and everyone of them, YOU ALL CHANGED MY LIFE, THANK YOU ALL (“my living Angels”).