and glad you kept pushing until you got the treatment you needed. Wonder how many people are struggling on, not realising there could be better therapy for them, hmm..... "Yes, it does the job. I use a Powapacs Atom for portable power "
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No need to suffer - If your CPAP treatment for Sleep Apnoea isn't working don't ignore it! - Are you getting the best treatment available?
I have been under the care of a Sleep Clinic for a sleep apnoea condition and been treated with a Respironics CPAP machine and humidifier after an initial test showed 46 apnoeas per hour.
In April I was suffering daily on waking with bad headaches, a blocked nostril during sleep, and worse headaches if I attempted to go back to sleep each day at around 4am. I rang my Sleep clinic to request help with my condition and was told that they could not see me as a sleep nurse was off on long term sick and they did not have the capacity to see me. They referred me back to my doctor. On visiting my doctor he expressed amazement at my referral and he said I don’t have the skills in this area that is why you were referred to the sleep clinic in the first place. He examined my nose and suggested an urgent appointment to see a consultant. On visiting the consultant at a different hospital he arranged an operation to reduce my turbinate’s. This has not been totally effective but I have a follow up appointment later on this year.
I struggled on with the daily headaches for several months but due to sleep deprivation I felt I was beginning to move into depression which I had never suffered in my life before, so rang my current sleep clinic again and subsequently had an appointment with a doctor at the clinic. I felt the doctor had not understood my desperation, and I had not been heard with regard to my symptoms of increased severity of headache if I returned to sleep after around 4am.
Out of concern for my future health I rang a sleep clinic at a different hospital and had a conversation with a member of staff which caused me to request my Doctor to refer me to that hospital sleep clinic. The PCT had initially to agree to fund my request, and I saw the manager of the sleep clinic at the different hospital who undertook some oxygen and carbon dioxide tests on and off the CPAP machine. He was concerned at the drop in my levels and suggested I tried a Resmed Autoset CS-A (Adaptive Servo-Ventilation) with a Resmed H5i Heated Humidifier which he supplied.
There has been a dramatic positive effect since using the ventilation device which has given me a sleep pattern that is more restful with no headaches. The data from the machine is amazing with low to zero readings.
At the onset of going on CPAP I was advised to come off morphine which I had been taking for a chronic back problem as it was proven to increase my central sleep apnoeas. Coming off morphine helped in reducing the central apnoeas but meant me living with acute pain for over eighteen months.
My average data on the Resmed devices for the last twelve days which includes a return to taking morphine for a night which had no adverse impact, has produced the following data:-
AHI 0.22
Hypopnoea 0.13
Apnoea 0.13
Obstructive 0.0
Clear Airway 0.00
Now having the Resmed devices and not a CPAP machine has not only given me a level of acceptable sleep but also permitted me to return to morphine to control my pain. I am not saying a ventilator is the answer for everyone with issues as obviously that is not the case, and I am not a medic.
Persistence with your treatment is necessary and not always pleasant and we do have to learn to adapt and sleep will probably never be the same as maybe we have experienced at some earlier stage of our life. However if you are struggling, be honest and open with your existing clinic and come to an assurance that you are experiencing the best quality of sleep available to you. If you are still unhappy find another clinic that will give you the care and attention that you need to give a quality of sleep, and lifestyle that you are capable of experiencing with the correct treatment.
I am very aware of the financial restraints on the NHS and have great sympathy and appreciation of them. The financial constraints they are under I believe can make it at times extremely difficult for them to operate at levels they personally would like to implement. However that does not mean you have to suffer as a consequence when there is an answer to give you an improved quality of life.
My regret is that I did not take my destiny into my own hands and address the issue earlier.
I trust my lesson learnt will be help and advice to those who are struggling and unhappy with their treatment.
Views: 955
Replies to This Discussion
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Permalink Reply by Kath Hope on
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Thanks for posting your experience Snoreyhead, and whilst there must have been so much frustration and possibly desperation along the way, so pleased there was a positive outcome for you, along with the added bonus that you're now able to take the morphine to help with your back pain.
This is a lesson which will hopefully help others, that if our treatment isn't working like it should then we must make sure we are happy that the clinicians we are under are working with us to get to the root of the problem. Sometimes the answer can be something a lot simpler than what you've had to go through, such as a slight change in pressures. Also bear in mind that pressures can need altering with things like weight gain/loss, hormone changes, age etc. I do wish the NHS would be able to supply everyone with a data-capable machine so people can check on their own sleep results. Thankfully some are now, but most still don't. Perhaps one day the manufacturers might stop making the standard machines which only show the hours of usage and pressure levels.
Another thing to bear in mind is that sleep apnoea is not always responsible for all tiredness people experience, and it is recommended to have yearly blood tests taken by our GP's for other linked conditions, such as diabetes and thyroid. That reminds me, I was due mine last month so had better get booked in......
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Permalink Reply by snoreyhead on
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Here is an update for those who may be interested. I have returned to hospital for a three month review after having my turbinates reduced to address a nose blockage at night. Unfortunately it has made an improvement in one nostril still keeps blocking and they are unable to do any more for me. The new ventilator has made a major difference to my quality of sleep and now waking feeling refreshed. I cant stress the importance of pursuing every avenue if you are suffering as there are answers out there.
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Thanks for the update and great the ventilator's made such a remarkable difference
Sorry the turbinates surgery didn't fix both nostrils though. The first time I had this op it was done by laser and it only worked temporary - the second time they actually trimmed them, and I'm still free from obstruction 18 months later.
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Further Update
Having been on the the Resmed Autoset CS-A AVS (Adaptive Servo-Ventilation) with a Resmed H5i Heated Humidifier and Heated Climate Hose for several months I am happy to report that I am experiencing increased hours of sleep to the CPAP machine I was using, also appreciating improved quality of sleep.
My initial sleep test prior to any machine assistance produced figures of 46 apnoea's per hour consisting of restrictive and central apnoeas.
My latest AHI figures are:-
Most Recent 0.00
Last 7 Days 0.08
Last 30 Days 0.60
Last 3 Months 0.25
I have a chronic back condition for which I was on morphine and advised that it was causing central sleep apnoea whilst on my CPAP. Now I am on the AVS machine I have been able to return to morphine for my pain relief without any adverse effects as can be seen from the above figures.
Be encouraged don't be afraid to keep asking questions of your sleep clinic, and express your concerns to them if you are struggling. It's your body and you have the prerogative to keep asking until you are happy, and if necessary seek out another clinic that has a good proven record.
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This is wonderful news Snoreyhead, and even better than you're now able to return to the morphine. Thanks for updating this too, as we have stacks of daily visitors on here getting help, who are perhaps too shy to actually join. You just don't know how many people you are helping.
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I am so thrilled with my change to the Resmed AVS machine and the consequential results I thought I would update you on the more long term AHI (apnoea) results as below taken from my "Sleepyhead" analysis data:-
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Permalink Reply by Deborah Wainwright on
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Oh wow! What a story ... Have you sent these comments to the chief exec of the hospital concerned? The NHS is currently undergoing massive change and openess is going to be particularly important. A ventilator isn't for everybody, it would be too much therapy for many patients, but I am happy to hear it is working for you ... I have often said we expect more accountability from the mechanic repairing our car than we do from our medics, whom we often trust implicitly. Many of them more than deserve this trust (I too am a qualified nurse) but sometime the system lets us down and, when it does, can only be rectified if people take time to complain directly. Hope you stay well!
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