Patient Blogpost: The Importance of Finding the Right Sleep Specialist

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.

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  1. Roz’s avatar

    well done for not giving in and i am so pleased that Mr Oko was able to help you…. I thought he would!

    I count myself very lucky indeed to be seen by such a wonderfully caring Consulta, along with all his team. i don’t think i could have gone through the CPAP theraply without his help and patience with me hugs roz xxx

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  2. JOAN KINCEY’s avatar

    I am so pleased for you Gina you have been through so much,and finally things are so much better for you.Iam sure what you have written on here will certainly help others.Asyou and I both know the importance,of making people aware,as it still doesnt get the recognition it most seriously needs,hopefully your case will go a long way to improving this,well done ,and thank you ,Joan xxx

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