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pressure pain?
I am new to this site and not sure if I am using it correctly so please be patient with me.
I use a CPAP machine from the hospital but find I wake up with a pain in the region of my middle(half way between belly button and ribs). I mentioned this to the clinic but they dont seem to know why. I find the machine does not make me feel better when I wake up. I feel rather spaced out with it. Anyone else had these problems. I have used it on and off for two years but feel not benefit.
Views: 176
Replies to This Discussion
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Permalink Reply by Kath Hope on
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I can really empathise with you Sally as I've suffered from this too in the past. It happened a lot when I was first on treatment, and whilst the pain didn't wake me up, some mornings I couldn't stand up straight for a good hour. It can be caused by a few causes - GERD being one of them, but that wasn't the case with me. Aerophagia (trapped air in the stomach due to swallowing too much air) is the most common cause, and this can be due to high CPAP pressure. What pressure are you on? Try to avoid any fizzy drinks in the evening and see if you can elevate your head slightly.
I really hope you can get to the bottom of this so that you can get constant treatment and, hopefully, start to feel the benefit as the sleep debt starts to be paid back.
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Permalink Reply by symmit on
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Hi Sally.
If it's being caused by the cpap use then it's likely to be either from swallowing air or from gastric reflux. You can avoid the reflux by not eating late at night (or if you already don't then try an over the counter antacid before bedtime) - if it persists see your doctor. The former could be caused byt too much pressure from the cpap, or by mouth breathing if you're using a nasal mask, speak to your sleep tech as to whether a different pressure setting or mask would help.
If you're staying awake in the day then the machine is working and providing benefit, but if the side effects are causing you misery you definitely want to have your therapy looked at. Also using it every night is important, both to acclimatise your body to it and to get the most benefit, so getting to an effective, comfortable comprimise is key.
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Kath Hope said:
I can really empathise with you Sally as I've suffered from this too in the past. It happened a lot when I was first on treatment, and whilst the pain didn't wake me up, some mornings I couldn't stand up straight for a good hour. It can be caused by a few causes - GERD being one of them, but that wasn't the case with me. Aerophagia (trapped air in the stomach due to swallowing too much air) is the most common cause, and this can be due to high CPAP pressure. What pressure are you on? Try to avoid any fizzy drinks in the evening and see if you can elevate your head slightly.
I really hope you can get to the bottom of this so that you can get constant treatment and, hopefully, start to feel the benefit as the sleep debt starts to be paid back.
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Sally Gould said:Hi Kath thanks for your reply. Not sure what the pressure is. I can find out when I go to the clinic. I am registered blind so cant see what is on the machine. I am not sure what GERD is. Could you explain. If I remember correctly I think the pressure was *. I did hire a machine which adjusted to me when I slept and Ifound this very good. But unfortunately the NHS dont use these machines. I use 3 pillows and dont take fizzy drinks. Thanks
Kath Hope said:
I can really empathise with you Sally as I've suffered from this too in the past. It happened a lot when I was first on treatment, and whilst the pain didn't wake me up, some mornings I couldn't stand up straight for a good hour. It can be caused by a few causes - GERD being one of them, but that wasn't the case with me. Aerophagia (trapped air in the stomach due to swallowing too much air) is the most common cause, and this can be due to high CPAP pressure. What pressure are you on? Try to avoid any fizzy drinks in the evening and see if you can elevate your head slightly.
I really hope you can get to the bottom of this so that you can get constant treatment and, hopefully, start to feel the benefit as the sleep debt starts to be paid back.
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I have problems with wind that appear to be CPAP related, but it's much less of a problem than reflux and so on, so I put up with it. Gaviscon and Windeze help taken at bedtime before any symptoms appear but even cheap antacids such as Tesco's indigestion tablets help a lot.
If you are not feeling any benefit from your CPAP then the only suggestions I have is that the pressure is wrong - have you had any changes in weight for instance that may mean you need a different setting? You have to remember CPAP is something of a double edged sword, while it helps with apnoea it can itself cause discomfort and disturbed sleep, but you can usually solve that with correct calibration and adjustment of your mask - I recenty bought some of the strap guards and they've been very helpful in stopping the straps from digging in.
It's very naughty but a quick bit of googling should reveal how to change the pressure on your machine, but I certainly would not recommend lowering it - but putting it up for 2 or 3 days and see if you notice any changes shouldn't be a problem. Make sure you note the original setting!
If you can't resolve this you are going to have to hassle the hospital and try to get this sorted.
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Good points there from Caveman. Try the antacids to see if they help, then at least you can have some constant use with the CPAP to see if you start to feel better. You need constant treatment so the sleep debt starts to be repaid. If you then go a night without the treatment, then you've taken backward steps in paying back your body the sleep it's craving.
GERD stands for Gastroesophageal Reflux Disease, and the 2 main symptoms are acid reflux and heartburn. Even if you don't have this, try not eating or drinking anything (apart from a sip of water) within 3 hours of bedtime. That alone can cure this kind of problem.
If you can try to get the pain sorted to enable you to use the CPAP everyday, then if you feel no better an appointment with your clinic would be the next step. However, if the pain's caused by the pressure then you'll need to go back first. It does sound like it could be the pressure if you say you were better on APAP, which unfortunately a lot of the NHS clinics/hospitals can't supply. However, you may be able to still get one from them due to 'special circumstances' so I would definitely enquire. On failing that, we have no other option other than purchase our own, which is what I did :(
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Permalink Reply by Tigers Fan on
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Hi Sally
Kath is right about NHS and APAP except for one thing - it's not that they can't supply APAPs but that they won't. If one Trust can dispense APAPs, they all could if they wanted.
At Southampton, they dispense CPAPs to everyone and they are all set at 10cm as far as I can tell (myself and everyione I've spoksen to). Could be that your clinic also sets the machines on a 'one size fits all' basis, too. It sounds like you need a higher pressure.
TF
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Tigers Fan said:At Southampton, they dispense CPAPs to everyone and they are all set at 10cm as far as I can tell (myself and everyione I've spoksen to). Could be that your clinic also sets the machines on a 'one size fits all' basis, too. It sounds like you need a higher pressure.
OMG to all machines set at 10. It's no wonder you and John have taken charge of your own treatment, and I just hope others from that area do the same!
One hospital told me that due to their budget, they can treat more people if they supply CPAPs due to cost, but under special circumstances can supply an APAP, so it's certainly worth asking them Sally.
The pressure could be set too high regarding the pain, or set too low due to lack of feeling better. Would be good to find out your pressure Sally.
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From various posts I see that no-one really mentions the pressure they are using, but it strikes me it could be a useful guide to what the clinics are 'inflicting' on patients these days. I was originally given a machine set at 15 but after complaining to my original referring doctor the sleep study was repeated properly and I ended up with a setting of 8!
Maybe I should set up a new thread where members can leave a short message about their settings, past and present?
Largely by trial and error I've adjusted my machine until I can again recognise the benefit and am currently using a setting of 11.
I'd really like an oximeter.
Other factors - when first diagnosed some 15+ years ago I was 21 stone and in a dire state, with massively high blood pressure (one of the indicators for apnoea) of 210/130, so I was sent off for a study - left the original consultation with threats of death and a diagnosis of type 2 diabetes. I promptly dropped to 17 stone, got my blood sugar levels down to something sensible, was diagnosed with Conns syndrome (see below) and given a cpap machine - I was literally feeling like a new man and doing much better professionally - it's amazing what sleep does for proper brain function :) So I might complain about how much less than perfect my treatment may have been, but at least I'm still here.
Conns syndrome - excessive production of the hormone aldosterone, often caused by tumours on the adrenal glands but I don't have any. Causes high blood pressure and low potassium levels which affects muscle function - there were times before I was diagnosed when walking was difficult. Easily treated by a blocker, spironolactone, which after years of very high blood pressure made mine drop so fast I suffered cold extremities and fainting if I stood up quickly. It affects about 1 in 3 million men apparently so it's not hard to see how my GP missed it for so long, I had to go private to get it diagnosed, best £90 I ever spent. My bp these days is a pretty consistent 130/80.
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Good idea starting a new discussion about pressure settings. Go for it Caveman......... So often people who lose lots of weight like you did don't get their pressures altered, which is often necessary.
Thanks for sharing about Conns Syndrome. Never heard of that and learnt something new!
My husband also has a very rare disorder called Swallow Syncope which hardly anyone knows about. He used to have a mini fit/fainting episode when eating or drinking. Turns out his heart was stopping and he had to have a pacemaker fitted which has cured the problem. He struggled on for years though, until finally 'Mr Google' revealed the problem to me, and we were prompty sent to yet another heart specialist. We're a right pair - one stops breathing when she sleeps, and the other's heart stops when he eats LOL.
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Permalink Reply by Jackie on
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I have GORD as well as my other problems and take an acid blocker daily because my stomach produces far too much.
When I am unlucky enough to have vomitting the acid burns my osophogus (cannot spell sorry) and I get pain like you describe due to the inflamation of my osophogus.
It could be the air being swallowed and irititating your lining, but please, get it checked out. Inflamation should be dealt with and not put up with as it can lead to other problems.
Agree with the pressures - I was told it should be 10 but felt suffocated and a nurse said she shouldn't do this but ... and set it slightly higher, but I don't know what to.
I will ask next time.
ps found the bold key again lol !
hugs Jacks
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PS Jackie means "GERD" but it's late at night and she's no doubt tired LOL! Worst is, she's losing an extra hour tonight when the clocks go forward!
Jackie said:I have GORD as well as my other problems and take an acid blocker daily because my stomach produces far too much.
When I am unlucky enough to have vomitting the acid burns my osophogus (cannot spell sorry) and I get pain like you describe due to the inflamation of my osophogus.
It could be the air being swallowed and irititating your lining, but please, get it checked out. Inflamation should be dealt with and not put up with as it can lead to other problems.
Agree with the pressures - I was told it should be 10 but felt suffocated and a nurse said she shouldn't do this but ... and set it slightly higher, but I don't know what to.
I will ask next time.
ps found the bold key again lol !
hugs Jacks
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