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cpap since dec
I have been on CPAP since Dec and I have never had more than 4 hours a night sleep with it. In fact having 4 hours is a good night and I normally manage about 2 hours. I put my mask on to go to sleep - sometimes I get to sleep quickly and other times it takes a while, but when I get to sleep I only sleep for the longest 2 hours. I have no idea what wakes me, as when I do not use the CPAP I do sleep for longer, but yes, I still wake up. However, using the CPAP has made me worse sleeping, though I did get 2 good nights sleep when the sleep clinic gave me an APAP machine for 2 nights. I am going to see the specialist again soon but I am at the end of my tether with it all, and I know I need to use the CPAP as I am a nurse.
Kath has been supporting me and has been a great help, but I've still not managed. I've tried different masks, but I do not think it is the mask as I am ok with it. I have no leakage and I've even taken sleep relaxing tablets. In fact I have tried everything and I am not someone who gives in easy, but the last week I've stopped trying with the mask. I do not know why i am posting this really but you never know.... someone my have some other ideas to try .
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Replies to This Discussion
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Permalink Reply by cathy on
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Hi kath, this is the data for the night that i described as being really bad, the AHI is over 9 - this isnt a typical night- but just wondered what the stats are telling me?(attaching chart as a word doc -dont know whether it will work ot not)
cathy said:
Hi Kath thanks for this, i was shattered last going to bed but then I had a bad night last night around 3ish and was awake (or felt like i was every half hour) i had tried to tighten the mask - but then felt claustraphobic so had to relax it to the previous nights tension. if i look at my stats and capture a screen shot and paste it - do you think (if you had time of course) you could give me a brief rundown of what it looks like is happening - that way i get to understand the graphs a little more??
Kath Hope said:Cathy, the software you're now using will help you identify some problems I hope. However, you asked the question on if certain things you're eating and drinking will have an effect on your sleep..... most definitely! I'm sure you're aware of alcohol within at least 3 hours, preferably 4, of bedtime. It's better to have a drink during the day than before sleep which is a hard one, as most people who drink like it in the evening. Eating a large meal within 3-4 hours of bedtime will also affect your sleep. If you like water before bed, it's best to only have a sip as any apnoeas will result in the juices of food or drink being sucked back up and could cause you to wake up (it's more detailed that this, but it's late and I should be in bed). Your body temperature also has an effect, and particularly if you're of the age where the per-imenopause is upon you. Let's see what the results from the software bring eh?
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bad night.doc, 196 KB
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Permalink Reply by Kath Hope on
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Hi Cathy
I had no problems opening up the document, and found it very interesting in that most of your events are actually Hypopnoeas (8.22) as opposed to Obstructives (0.65). Hypopnoeas can be caused through various reasons - often nasal congestion/stuffiness. Are you airways clear? I used to get a lot of hypopnoeas before my nasal surgery, but now they're very low.
Hopefully when you go back this month your hospital will adjust your pressures which should help you get better treatment.
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Hi kath thnaks for this, i am not particulalry congested (at least i dont feel like i am) ive looked at other days and most of the data identies Hypopneas at around (7.41 to 9.45) and also obstructives at (6.79 to 8.45). So i do appear to be having those as well, but obviously not on the night with the data i posted.
i must say in connection with Marys comment above whilst i have had one or two really bad nights it cannot be compared to the sleep (or rather no sleep) that i was getting prior to this machine. Whether they are hypopnoes or obstructives - waking up with the sensation of being suffocated or drowning is not nice and is not psychological - its physical. i dont think i need to see a social worker, pyschologist or psychiatrist and thanks for your comments Mary.
Kath thanks for your advice and comments- it will be interesting to see what the sleep clinic says- i only saw them once (after having the machine 2 weeks) and havent seen them since so am due a 3 month review at any time now.
take care
Kath Hope said:Hi Cathy
I had no problems opening up the document, and found it very interesting in that most of your events are actually Hypopnoeas (8.22) as opposed to Obstructives (0.65). Hypopnoeas can be caused through various reasons - often nasal congestion/stuffiness. Are you airways clear? I used to get a lot of hypopnoeas before my nasal surgery, but now they're very low.
Hopefully when you go back this month your hospital will adjust your pressures which should help you get better treatment.
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It's early days for you yet Cathy, and I'm sure you'll get better CPAP therapy once your clinic have finished titrating you. At least you're now getting 'better' sleep they should be able to do this easily, but we're hear to help after your consultation ;)
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Thanks Kath, sleep well Im off to bed now - washed all my equipment today tubes and everything - have to go and asemble everything again now - gonna remind myself to that earlier the day!!! so i can get straight in bed, take care nite nite x
Kath Hope said:It's early days for you yet Cathy, and I'm sure you'll get better CPAP therapy once your clinic have finished titrating you. At least you're now getting 'better' sleep they should be able to do this easily, but we're hear to help after your consultation ;)
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I did mine earlier ;) Looking forward to clean everything, including sheets. Sleep well x
cathy said:Thanks Kath, sleep well Im off to bed now - washed all my equipment today tubes and everything - have to go and asemble everything again now - gonna remind myself to that earlier the day!!! so i can get straight in bed, take care nite nite x
Kath Hope said:It's early days for you yet Cathy, and I'm sure you'll get better CPAP therapy once your clinic have finished titrating you. At least you're now getting 'better' sleep they should be able to do this easily, but we're hear to help after your consultation ;)
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Permalink Reply by Terry Vella on
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Kath and Cathy, I know there is debate as to how often and what products we should use to clean our equipment, if I could tell you what I do as a regular routine, I wash most bits of the equipment twice a week on a Sunday and Wednesday. I do the mask and hose those days, the humidifer once a week on a Sunday that's when I fully empty the water otherwise I top up daily and do the straps every second week. I put them in my bathroom sink with some fragrance free liquid soap while I have a shower then rinse and then hang up the hose. I put everything back together before dinner so I'm ready for bed. All my equipment has lasted over a year and still going strong. Everyone will have different ways of doing things, I find this the best because I get into a routine and haven't had any problems so far.
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Permalink Reply by gina on
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How an appontment to the sleep specialist can change your life !!!!!!!
I walked in to see the specialist and he asked me about falling asleep all the time. I told him I do not fall asleep all the time - only if I read and I can't get past a page, and if I am in a car as a passenger. He said my GP had wrote to him saying about just falling asleep all the time, so I told him I've never been to see the GP about falling asleep. I told him how I happened to have a sleep study due to having the brain scan !! (mistake 1). Mistake 2 was I said I'd not used the machine the last 4 weeks, and straight away he said (without catching his breath) "well I hope you have got the CPAP with you to give back!! I told him I had really tried and had used the CPAP up until then, as much as I could cope with, but because of waking up and not sleeping more than an hour, it was so hard (mistake 3 ) because if I had tried I'd have managed it!
He said that it sounds as if I suffer from insomnia as well as sleep apnoea and CPAP will not help with sleeping, so I discussed about the risks etc., and was there any think else that I can try like APAP etc., operation or any thing else. He looked in mouth and said I have large tonsils and large tongue, but cos I was so overweight it would not help. He said he will just discharge me and to bring machine back. I said I'd try again as on leave in a few weeks and he told me not to bother !!!I
I am so cross of with it all!!!! Nothing I can do now seeing as I have been discharged - no choice!!!!! Sod the NHS - what a rubbish service !!!!
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Gina, I hope Kath can give you some advise because by the sound of it you need to be on CPAP. The specialst should be a bit more compassionate and help you not discharge you.
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at the moment i am so cross and ive decided not to look in to any more treatment but id like to say a big thank you to kath who has been a rock for me since i started cpap . and i will be going later to hand in this cpap !
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I am so very sad and disappointed for you Gina. I'm speechless, as I was hoping the specialist could have offered you some help or options. Will be in touch via email.
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Permalink Reply by snoreyhead on
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I can understand your disappointment and frustration, but don't let someone's opinion effect your future. I would be inclined to exercise your right and see your GP and request a second opinion. Make enquiries of the hospitals local to you and try to obtain a recommendation from someone with regards to a consultant you can request to see for your second opinion. There will be answer so keep pressing on.
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