Sleep Apnoea Forum Bringing Help + Support to the Patient
After being diagnosed with Severe Sleep Apnoea (AHI 53) In November 2009, my consultant and GP, have still to find a treatment which works.
I lost my new job in 2011 as I fell asleep, and have not worked since, due to the impact of my condition.
I have tried C/PAP & BIPAP on 2 different occasions over separate time periods of 2-3 months,As i was only averaging 90 minutes on average with both machines, I was not feeling any benefit, and my consultant thought neither were viable.I have had 4 gum shields, over the last 6 years, the last being of some help with my snoring, but does not seem to help with the Sleep Apnoea.
My consultant though the operation whereby the lining of the throat is scraped away was not suitable due to the severity of my condition.In November last year she prescribed Modafinil (200mg) 1 tablet daily.As this did not help in the slightest the dosage has been increased to 4 tablets daily..total of 800mg, and I still dont feel the benefit. In fact my GP suggested I stop taking them all together, which I did last week.
I am due to see my Consultant next month,I am seriously concerned that in real terms, there will be nothing else she can offer......Can anyone help/suggestions please?
Thanks in advance
Craig
Views: 109
I'm sorry to hear of your struggles Craig and you definitely need to find a solution quickly due to you having severe sleep apnoea. Unfortunately, CPAP is the gold standard for severe sleep apnoea, but you sound like you needed more support if you were only averaging 90 minutes. Some people take to CPAP like a duck to water, but for others it is a real challenge, and I had this challenge myself a long time ago when there was a lack of support here in the UK. If it were not for the fact that my own Mum died early (age 49) from untreated sleep apnoea I too would have given up on CPAP! I was in a very bad place - terrified I couldn't get good CPAP therapy and terrified the hospital would take the machine off me by classing me as unsuitable. It was 6 months before I started to feel the benefits of CPAP, and no way would I sleep without it even for one night, and I never thought I'd live to make this statement at the time! Check out my brief story on the main website http://www.hope2sleep.co.uk/page/my-story
I know that you need relief from the severe exhaustion you are 'feeling' but even more importantly is that you find a way to get treated from all those apnoeas that are causing damage to your health. The Modafinil would only help with the exhaustion and not stop the severe sleep apnoea. I notice from your profile that you mention 'narcolepsy' - have you actually got an official diagnosis of this? There are some people that do have both sleep apnoea and narcolepsy, but most often people find that once the sleep apnoea is treated and gradually their bodies get good safe restorative sleep and some of the years of sleep debt is paid back, then the narcolepsy symptoms go away.
I can promise you that I come across people all the time who feel they've failed on CPAP, and yet with good support they find they can gradually acclimatise to it. If you use Facebook, I run a very active private group on there and would highly recommend you request to join, as there are many people who have struggled with CPAP like you have, and with good support are now 100% compliant with their therapy and feeling so much healthier and energised now. Here is the link if you wish to join https://www.facebook.com/groups/SleepApnoeaSupportAndAwareness/
A good education at the start of treatment is a great help. Unfortunately this rarely happens. I was just handed a machine, handed a mask that the Nurse gave me that she thought would fit, but this mask although it appeared to fit at the hospital didn't really fit and to get a seal I would have to have it way to tight and it cut into my nose. This was not the nurses fault as they really were pushed for time back then and a small budget as well. They would NOT issue anyone with a humidifier until they said they just could not sleep for dryness! Humidifiers were expensive back then so they couldn't afford to give them out unless you were desperate. It takes some people quite a while to get used to the machine and more time to find a mask they can use. When I first started it took me two hours before I couldn't breath and I even squirted water up my nostrils so I could continue to use the CPAP machine. Dryness was by far my biggest enemy and as determined as I was to continue using the machine I did think that I would have to give up. But after I travelled most of the length of Scotland to get to the clinic for about the sixth time in as many weeks they relented and gave me a humidifier and I could finally use the machine to the point I could feel a bit better. This was around six months down the line, Though I took to it quite well apart from the dryness it still took me a couple of months more to find a mask that I could use without hurting my nose or one that would stay on my face. But we did find one with the persistence of a Sleep Nurse that loved Vodka when out for a night. lol
My mate now has Sleep Apnoea (I think he has had it for years but it finally made its mark) and he was given a machine and just a mask that they didn't even try for size (he is in Ireland now) which I think is a bit shocking. I told him to go ask for something else but he wouldn't as this was what they said he had to use! Anyway, when he was in he say the Sleep Nurse and just mentioned the mask, she went away and came back with two other types and three sizes, so that was him sorted.
Anyway, back to you and your problem.
What did you find hard about using the machine?
Sleep Apnoea and Narcolepsy. Is it confirmed that you have both?
What kind of mask did you have and did you have any problems with it? Was it Full-faced, Nasal, Nasal Pillows?
Did you have a humidifier with the machines you tried?
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