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Sleep Apnoea Forum Bringing Help + Support to the Patient
Welcome to our Forum - Feel Free to Introduce Yourself Here.
Welcome to the Hope2SleepGuide Forum, which is a service run by the Hope2Sleep Charity founded by Kath Hope with a marvellous team of trustees and volunteers.
Kath herself has severe sleep apnoea and hypoventilation/hypercapnia, and has used CPAP for several years and is now on non-invasive ventilation. Our trustees and volunteers are all either sufferers of sleep disordered breathing or clinicians/medics working in this field, and most importantly, we are all passionate in supporting (with empathy) others and raising awareness to help people live healthier and more energised lives.
Whilst we do not give medical advice, more often than not, with support, tips and knowledge, people can overcome any problems experienced with our therapy, and there is a whole page dedicated to this on the website http://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or...
Please come and join us, and don’t feel obligated to use your ‘real’ name if you prefer to remain anonymous as this is a public forum. Don’t be shy in posting and sharing, as we’re all in this together and to help each other.
Best Wishes for good sleep!
Kath
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Replies to This Discussion
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Permalink Reply by Kath Hope on
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Great to hear you're making good progress Steve
Steve Dobson said:Hi everyone.
New to this but already getting there I think!
I have found CPAPCentral in Brisbane to be very helpful indeed - they are associated with the Queensland Sleep Clinic next door at the Mater Private Clinic - the process was very simple and easy.
No trouble getting used to wearing the equipment (nasal pillows) which is great news - given the size of the nose, not having any soreness is a bonus LOL!
I've got the software and I'm trying to fathom it one bit at a time. It seems to tell me that the leakage is mixed - some nights none at all, on odd occasions it has on average been 12-15% for the whole night. That certainly messes up my figures!
Hope to chat and share notes as we go!
Steve
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Permalink Reply by Terry Vella on
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Steve, welcome from Melbourne, the most important number in the data is your AHI (Apnea Hypoapnea Index) this is how many times you stop breathing on average per hour for 10 secs or more, you want it to be below 5. At you sleep study you get a figure which determines your severity and pressure settings. 0-5 is normal, 5-15 is mild, 15-30 is is moderate and 30+ is servere.
Masks leaks are not to bad, you will some if you move or toss and turn.
Steve Dobson said:Hi everyone.
New to this but already getting there I think!
I have found CPAPCentral in Brisbane to be very helpful indeed - they are associated with the Queensland Sleep Clinic next door at the Mater Private Clinic - the process was very simple and easy.
No trouble getting used to wearing the equipment (nasal pillows) which is great news - given the size of the nose, not having any soreness is a bonus LOL!
I've got the software and I'm trying to fathom it one bit at a time. It seems to tell me that the leakage is mixed - some nights none at all, on odd occasions it has on average been 12-15% for the whole night. That certainly messes up my figures!
Hope to chat and share notes as we go!
Steve
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Permalink Reply by Wanda Polk on
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Hi Deborah,
Welcome! I am excited that you are here. Next week, I will be insurance eligible to use the Eson Nasal Mask, I am excited about the possibility that it can alleviate some of my nose issues. BTW, I live in the US.
Deborah Wainwright said:Ha, sorry, I meant having a daughter results in a lack of sleep for me! She doesn't have any problems!
Kath Hope said:Have you ever had your daughter tested Debi? I've had my son tested for the same reasons as your daughter, plus lots of brain confusion. He came up with a low AHI of 6.8 and obviously a slim 17 year old isn't a candidate for CPAP, although he probably will get worse as he gets older. My daughter refuses to be tested, and she's a nurse so should know better!!
Good to hear you're passionate at your job (sleeping with the devices by choice) and spending Sat evening on our forum ;)
Deborah Wainwright said:I'm on here using my posh name, but actually I am known as Debi. I'm a mum, don't have sleep apnoea, but do have a 16 year old daughter which, sometimes, results in the same lack of sleep and accompanying headache! I've slept on an S9, a System One and an Icon just to 'understand'.
I work for Fisher and Paykel as country manager for the Uk. All views definitely my own (that's the legal bit!) and have used my name for transparency.
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Permalink Reply by Deborah Wainwright on
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Hi Wanda - good luck with Eson - I would value your feedback. We are having some great success here in the UK
Wanda Polk said:Hi Deborah,
Welcome! I am excited that you are here. Next week, I will be insurance eligible to use the Eson Nasal Mask, I am excited about the possibility that it can alleviate some of my nose issues. BTW, I live in the US.
Deborah Wainwright said:Ha, sorry, I meant having a daughter results in a lack of sleep for me! She doesn't have any problems!
Kath Hope said:Have you ever had your daughter tested Debi? I've had my son tested for the same reasons as your daughter, plus lots of brain confusion. He came up with a low AHI of 6.8 and obviously a slim 17 year old isn't a candidate for CPAP, although he probably will get worse as he gets older. My daughter refuses to be tested, and she's a nurse so should know better!!
Good to hear you're passionate at your job (sleeping with the devices by choice) and spending Sat evening on our forum ;)
Deborah Wainwright said:I'm on here using my posh name, but actually I am known as Debi. I'm a mum, don't have sleep apnoea, but do have a 16 year old daughter which, sometimes, results in the same lack of sleep and accompanying headache! I've slept on an S9, a System One and an Icon just to 'understand'.
I work for Fisher and Paykel as country manager for the Uk. All views definitely my own (that's the legal bit!) and have used my name for transparency.
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Permalink Reply by Kathryn Chapman, on
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Good Afternoon, .my name is Kathryn, im 48 and from Tamworth, AUSTRALIA..i was introduced , by the lovely Kath , to the group a couple of days ago .I have just been diagnosed with a severe case of sleep apnoea. results come back saying I stopped breathing 46 times in 1 hour , ( which frightened me a lot at first ) !!
I have been on a Cpap machine for a " trial " for the past 3 weeks , I have 1 week left. it was a Fisher & Paykel machine ( silver ) with a humidifier..She ( the consultant ) said it treats me well , it took a while to get used to the mask, it still does..she told me the cost..... nearly $2, 500 including the mask .i am only on a single mothers pension, I have looked around town , but they are around the same price. I knew they would be expensive . I could pay one off perhaps ??!!thankyou kath , I look forward to hearing back from you and your fellow sufferers !
Kathryn ( my real name )
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Kathryn, welcome, I'm from Melbourne, they are expensive in Australia, the $2,500 is for a very good machine, you can get a basic one for about half that, could you tell me the brand and model. The other option is you could get it over the net but then you don't get the support. It is difficult and I understand your issue, we are here to help in anyway we can, just ask as many questions as you need, Terry.
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Hi Terry , thankyou , I will get back to you with the model , Kath : )
Terry Vella said:Kathryn, welcome, I'm from Melbourne, they are expensive in Australia, the $2,500 is for a very good machine, you can get a basic one for about half that, could you tell me the brand and model. The other option is you could get it over the net but then you don't get the support. It is difficult and I understand your issue, we are here to help in anyway we can, just ask as many questions as you need, Terry.
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Told you Terry would spot your post Kathryn
The spelling of your name is exactly the same as mine, although the only people to use my full title is my Dad and my sister. My Mum used to use it when I was naughty 
Deborah Wainwright is one of our members on here, and she works for Fisher & Paykel, so am sure would be happy to answer any questions regarding the machine you're using at the moment.
Kathryn Chapman, said:Hi Terry , thankyou , I will get back to you with the model , Kath : )
Terry Vella said:Kathryn, welcome, I'm from Melbourne, they are expensive in Australia, the $2,500 is for a very good machine, you can get a basic one for about half that, could you tell me the brand and model. The other option is you could get it over the net but then you don't get the support. It is difficult and I understand your issue, we are here to help in anyway we can, just ask as many questions as you need, Terry.
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Hi Kathryn,
Things work differently in the UK with our National Health Service. I was issued with a CPAP machine (nothing fancy and no humidifier) free of charge. In 2009 I purchased the humidifier attachment locally for £150 (AUS$ 220). When I wanted a second machine (I was splitting my time between my home and my partners'), I purchased directly from CPAP.com. I purchased a Respironics CPAP, humidifier upgrade, spare water tank, mask, etc. etc. for £410 (AUS$ 600) including shipping from the USA. The humidifier cost just £65 as an upgrade. They were happy to supply, once they had a copy of my NHS diagnosis. Because it is personal medical equipment, and once I had found out the correct paperwork to complete, there was no import duty or sales tax (VAT) to pay. Because I was buying a duplicate of the machine I was already using, I didn't need any support. I was very happy with my purchase.
Of course, these are 2009 prices, and it was a fairly basic machine, but you might want to explore buying on-line if you know the model of machine you want. Because of the cost of shipping, it's worth adding as many things as possible to your order.
Good luck!
Jonathan.
Kathryn Chapman, said:Good Afternoon, .my name is Kathryn, im 48 and from Tamworth, AUSTRALIA..i was introduced , by the lovely Kath , to the group a couple of days ago .I have just been diagnosed with a severe case of sleep apnoea. results come back saying I stopped breathing 46 times in 1 hour , ( which frightened me a lot at first ) !!
I have been on a Cpap machine for a " trial " for the past 3 weeks , I have 1 week left. it was a Fisher & Paykel machine ( silver ) with a humidifier..She ( the consultant ) said it treats me well , it took a while to get used to the mask, it still does..she told me the cost..... nearly $2, 500 including the mask .i am only on a single mothers pension, I have looked around town , but they are around the same price. I knew they would be expensive . I could pay one off perhaps ??!!thankyou kath , I look forward to hearing back from you and your fellow sufferers !
Kathryn ( my real name )
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i
m having trouble finding my way around the forum and replying to peoples msgs , ive lost them , and cant find my old msgs I sent them . aaarrrggghhh !!!
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That's great Jonathon you got it for free ! thanks for your advice . kath ; )
Jonathan said:Hi Kathryn,
Things work differently in the UK with our National Health Service. I was issued with a CPAP machine (nothing fancy and no humidifier) free of charge. In 2009 I purchased the humidifier attachment locally for £150 (AUS$ 220). When I wanted a second machine (I was splitting my time between my home and my partners'), I purchased directly from CPAP.com. I purchased a Respironics CPAP, humidifier upgrade, spare water tank, mask, etc. etc. for £410 (AUS$ 600) including shipping from the USA. The humidifier cost just £65 as an upgrade. They were happy to supply, once they had a copy of my NHS diagnosis. Because it is personal medical equipment, and once I had found out the correct paperwork to complete, there was no import duty or sales tax (VAT) to pay. Because I was buying a duplicate of the machine I was already using, I didn't need any support. I was very happy with my purchase.
Of course, these are 2009 prices, and it was a fairly basic machine, but you might want to explore buying on-line if you know the model of machine you want. Because of the cost of shipping, it's worth adding as many things as possible to your order.
Good luck!
Jonathan.
Kathryn Chapman, said:Good Afternoon, .my name is Kathryn, im 48 and from Tamworth, AUSTRALIA..i was introduced , by the lovely Kath , to the group a couple of days ago .I have just been diagnosed with a severe case of sleep apnoea. results come back saying I stopped breathing 46 times in 1 hour , ( which frightened me a lot at first ) !!
I have been on a Cpap machine for a " trial " for the past 3 weeks , I have 1 week left. it was a Fisher & Paykel machine ( silver ) with a humidifier..She ( the consultant ) said it treats me well , it took a while to get used to the mask, it still does..she told me the cost..... nearly $2, 500 including the mask .i am only on a single mothers pension, I have looked around town , but they are around the same price. I knew they would be expensive . I could pay one off perhaps ??!!thankyou kath , I look forward to hearing back from you and your fellow sufferers !
Kathryn ( my real name )
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Permalink Reply by Sandy K. King on
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Hi, I'm Sandy. I got diagnosed with OSA a couple month's ago. I got my C-pap machine on March 18, 2013. I have Phillips Resperonics machine and use a nose mask which is the Resmed Swift FX for her. I live in Michigan in the U.S. I'm having the trouble that most people have when trying to get used to it. Taking it off in my sleep and not remembering it at all. I wake up to find that the machine is off too. I am in a SA group in Daily Strength too and one of the people there reccomended this site to me. I will say that I have been on Seroquel,for years (a sleep med) In the last yr and a half I have cut down from 400mg to 50mg. I have read that it's not good to take sleep meds when you have SA. It's scary trying to get off of it because if I try to take a nap during the day I CANNOT sleep no matter how sleepy and tired I am. I guess that's because it takes seroquel to get me to sleep and I dont take it for naps. I am a bit anxious about going off it totally as the reason I got on it in the first place was for another medical problem, bipolar II. I have a racing mind when I lay down to sleep and it is easier said then done to stop it. I hope people accept me here when I mention that because a lot of people in this world stigmatize people with mental health disabilitys. So, I have that and SA and many other medical problems which I do take a lot of meds for. If I go off my mental health meds I have a relapse which sends me into a severe clinical depression and that folks is like being in hell and it doesn't just go away that quickly, it takes a month or two to find the right meds and sometimes longer if they put you on something that does not work for ya. I'm scared. Well I have rambled enough and I hope people here wont think I'm some crazy nut,, because I'm not. I am a very social person who loves people and loves to help people.I admin 2 support groups on FB for bipolar disorder. I also can be very silly and funny at times. I love animals, especially our 3 pet rats. I love nature, music, ghost hunting shows, movies, reading, singing and playing my keyboard. I live with my boyfriend who I have been with for 13 wonderful years. He has COPD and is on oxygen. He had a sleep apnea test 2 years ago and it came up negative and I dont believe that because he snores like a freight train, with periods of shallow breathing i think. We are trying to get his doctor to refer him to my pulmonary/sleep doctor but his doctor has forgotten so we are going to remind them, like TOMORROW. Have a Happy Easter everyone! SamLovesRats aka/ Sandy King
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