Really struggling with CPAP, feel much worse than before getting machine

[Darth_Rita]

Hi. I am 67, female and have never had problems with being tired during the day, lack of concentration or the other major symptoms associated with Sleep Apnea but I have RLS, am pre diabetic, have an under active thyroid and high Cholesterol plus I appear to snore in the early hours of the morning which was waking my husband and ruining his nights sleep.

A couple of months ago I was having an thyroid review at my doctors I mentioned the snoring and he said he would refer me for a sleep apnea study. I laughed and said insomnia maybe but Apnea never, most nights I am still awake at 2- 3 am playing games on my ipad, I don't get tired not even the next day after a particularly late session so that can't bethe case but he said "humour me, it wont do any harm" so I thought what the heck if it will prove to him there is something else going on it could help so I relented. The night of the study was terrible, I sleep on my stomach not my back which really upsets the RLS(Restless leg syndrome) and it was the hottest night of the year so I failed to get any real sleep with the test equipment strapped to my PJ's.

By 1 am I was forced to move to the spare room because hubby was snoring so loud it was keeping me awake but even after the move it was a struggle because of the heat and equipment so after tossing and turning till 4:45 I finally gave up as I was too hot, sticky and downright uncomfortable and kept finding I had pulled the airline out of my nose. It was such an unproductive night I felt sure I would have to complete the test again when it was cooler but no when I went to the hospital I was told they had managed to get a result and while I do not stop breathing my oxygen levels do drop to 88% around 15 times an hour so I would be put onto a machine and that if I failed to comply I could lose my driving license.

I started the test Tuesday, that first day I endured the mask from 11pm until 3:30 am by which time it was leaking badly, making rude noises and blowing a gale that even hubby could feel on the other side of a kingsize bed as the machine was over compensating for the leaks and had ramped the pressure up to 14 so it was making my eyes water, my chest freezing cold, my mouth dry, my throat sore and my face go bright red and blotchy so I gave up.

There had been some question as to whether I should be wearing an extra small mask or a small when they did the fitting so I called the hospital told them what happened and they said come to the walk in on Friday but keep trying, which I did with little success. They did not change the mask on Friday and instead said its a matter of making it fit evenly so you will just need to persever. Since then I have had two more frightful attempts that haven't lasted beyond 3 am and I find using the machine is leaving me short of breath and feeling totally exhausted the next day. In short it is giving me the symptoms of sleep apnea I have never had before despite the Sleepyheads software saying I have had no Apneas and showing a smily face for no events.
I cant go on like this can anyone offer any advice?

[Pugsy]

Welcome to the forum.

Where are you located? From the way you talk and what has been done it sounds like maybe the UK.

Please review the sticky "newbies please read before posting"....specifically we need to know your equipment to start with.

And yes, unfortunately this cpap stuff can make our overall sleep quality go into the toilet and we sleep worse with it but there are things that can be done to make it so that it doesn't disturb our sleep so much. To help you we need to know exactly what you are using in terms of mask and machine.

[MrsRinPDX]

Hi Darth_Rita,

Sorry to hear you are struggling! Sounds like that first night was miserable.

Pugsy is one of the best and brightest, so you're in luck. Follow her advice.

Many of us had issues with our mask, the rude noises are a fit issue, but there is a huge variety of them available and members of the forum will help you work out any problems you're having. Just keep on trying.

Best wishes,
MrsRinPDX

[Darth_Rita]

Hi and Thanks for the welcome, I have amended my profile but since this is all tied to the national health I will only get what they are prepared to give me so switching equipment etc is at the mercy of them. To be honest if it wasnt for the fact that they stop you driving in the UK if you do not comply I would have given up already, as it is I am trying to find an alternate solution because I am already fed up with the machine and mask.

On the plus side the last 2 night I actually managed to sleep. I think Monday night was out of sheer exhaustion, partly from trying to use the machine and partly because hubby and I went out on a 35 mile bike ride to blow the cobwebs away and then I had to attend a LEAP clinic to learn how to eat correcly because apparently having a sandwich at lunchtime and a meal when hubby gets home isnt enough and has ground my metabolism to a stop; who would have thought I always though having an early hysterectomy which caused an inactive thyroid, Diverticulitis and being prediabetic had done a great job of screwing up my metabolism without my help.

Thankfully the long bike ride got rid of the headache which I am sure was down to being blasted with ice cold air the night before.

According to the sleepy head software on Monday I slept for 7 hours, had large leaks for 29.93 % of the time that started 3.5 hours after going to sleep and did not wake me. I also had 1 Obstructive Apnea and 1 Hypopnoa during the night but that was it.

On Tuesday also slept 7 hours had 1 OA and 1 Hypop and the mask leaked on and off from 1 hour into my sleep until I woke up in the morning but did not wake me and this morning for the first time I felt human I did not wake with the throbbing head that has plagued me since getting the machine and the cold sore that was caused by wearing the mask was actually dry and not weaping anymore - Hurrah.

I called the sleep centre about the high leakage volume but they just told me to need to adjust the fit but the fit is fine when I first go to sleep so how can I do that when I am sound asleep and don't know the mask is leaking ?

I am currently looking into alternative Apnea treatments and in doing so I found something called a Soemac machine that looks promising as it could help hubbys COPD as well as me, anyone heard of it or better still tried one? Its at http://www.soemac.com/relieving-symptoms if you are not sure what I mean.