British Snoring & Sleep Apnoea Association

Afternoon all

I have been talking with this site via twitter.

My story- I am epileptic and for years I had been restless and very vocal when it came to snoring. we kept putting it of and blamed my frontal lobe epilepsy. I am always tired and can't be bothered doing things.

I am young at 30 and of average weight.

I was refered to sleep clinic and was given home study kit. it shown some abnormalities and I went for sleep study in hospital. It was inconclusive on the night. They lettered me last week to say I am positive for Hypopnea. Immediately I was like what the Hell is that.... Google was my source of info. I am going back in to hospital tonight for CPAP fitting and study.

I have huge phobia of things on my face and wonder if Ill ever sleep with machine on

I suspect ill be a frequent visitor to this forum.

also on Twitter Rpearson081

Any tips or advice

A HUGE WELCOME! I hope we'll get to know you better and to be able to help.

First of all, try to relax and not worry too much about your sleep study. It will feel different to have a mask on your face tonight, but you should be able to sleep enough - even if it doesn't feel like it - to give the doctor enough data to work on.

Bring your favourite photo or even a cuddly to make you feel comfy tonight. Just go with the flow and ask the technician to explain what s/he is doing as they are doing it. They won't mind and will be quite used to the fact that their clients are uptight .. and may even need to go to the toilet in the middle of the night ... even more than once!

Try to have a light and digestable meal this evening ... no curries, chilli peppers and no booze (not even for Dutch courage!!!).

If you are diagnosed as needing xPAP therapy, there are a variety of masks available ... depending on whether you're an nose or mouth breather. So don't worry about that in advance.

Do remind the technician that you do suffer from epilepsy so that they do know in case you have a fit during the time you're spending with them ... but I'm sure it will be on your notes anyway.

All the very best, and please come back and tell us how you got on.

Hello

I was at the sleep medicine department last night and was issued with my very own cpap machine.

I had the mask on most of the night, the staff change the mask as the first one was hurting the bridge of my nose. According to staff I managed ok. My own machine is set at 11.6 and I am being reviewed in 4 weeks time as an out patient.

I find that when I wake up during the night I am panicking as the machine is at full blast. I hope I'll get used to that soon.

Thanks

Robert

Update

Really struggling adapting to using the machine. Woken up many times as I have taken the mask off.

It DOES take time to adjust to the 'hardware'! And many people start off taking the mask off in the middle of the night!

It's easy to panic. I've done so myself on several occasions even after having had my machine for several years when I got a new mask. Try to remember that the machine is keeping your airways open so you just need to breathe slowly and regularly.

If you are finding that you are 'fighting' the exhale breath, you may need to ask the clinic if your machine has a EPR (exhale pressure release) feature, and ask them to turn it on. That means that the pressure on the breath out is slightly lower (therefore easier) than the breath in.

If this continues to be the case, ring your clinic and ask if they can see you earlier than your appointment to 'enable the EPR'. The reason for the time interval is to check what's happening over a certain time period ... how many AHIs you are having, is the pressure correct etc., so explain that it's only for the EPR that you need to see them ahead of time, and keep your regular follow up appointment.

Please persevere. You're doing a great job by managing to get to sleep in the first place with the mask on ... that can stump many new users! Please keep in touch.

Many people do this at the start so yoir are not alone. I don't know the answer to this, you just have to persevere.

Welcome to the forum. Don't worry, it takes time to get used to having a thing on your face. I'm still getting used to my mask.

I still occasionally take my mask off, at the start I was doing it all the time. I know it's very easy for us to say to persevere with it but it is true

Hello

Sorry I never replied. I was born with fle or so they suspect. I asked the question if my sa was connected and they do not believe so.

I have persevered and I am used to it now, as you say yourself you occasionally take it off. I am at the stage I feel lost without it when I lay down. Compliance is good and average 6.6hrs

Anything over six hours is excellent, well done for persistence.

Yeah nurse said I am doing very well.