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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
Views: 13125
Replies to This Discussion
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Permalink Reply by Steve Cooper on
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Hi Jonathan. Happy to let you "win" that comp
That's very interesting info regards bathroom trips, thanks, I could not fathom out the connections but that makes perfect sense, a very scary thought about the misdiagnosis though, good job your GP didn't just accept the 2+2 answer.
regards
Steve
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Thanks Mary.
How are your symptoms now and how long did it take for them to change for you?
Steve
Mary Zimlich said:Steve, welcome to the forum. Glad you're off to such a good start. Jonathan, sometimes I think it's a competition for the most apneas on a sleep study. I lost with only an AHI of five, but jumped on the chance for a trial with CPAP my symptoms were so bad.
I couldn't stay awake during the day and so could not drive. I would sleep 10-13 hours a night. It was terrible.
Mary
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Permalink Reply by Lee on
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Hi I'm Lee
A new cpap user I'm so glad to have found this site, I'm hoping to get some useful information to help me through the day,
Hope to start chatting soon xxx
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Permalink Reply by Terry Vella on
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Welcome Lee, please ask any questions anytime.
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Permalink Reply by DeeNJai on
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HI
I am quite new to the world of sleep apnoea as I was diagnosed with OSA on 28 February 2013 and received my RemStar System One Auto CPAP machine on 9 April. I went to my GP with being tired all the time and falling to sleep in the day. He asked me to the ESS questionnaire and I scored 23/24 so he said he would refer me to see someone about this. I had a home sleep test done over two nights at the beginning of February. Since I was first referred to the specialist I am 5kgs lighter and my goal for this year is to lose the weight that I am over so I have 35kgs (5st. 7lbs) to get to my goal of 51kgs (8 stone). It will take me the whole year to lose the weight as i'm aiming for 1.5lbs per week on average. I have a large neck even when I was thin its around 17".
I have fibromyalgia which currently under control due to the combination of medication that I take. I have had FM since childhood and it only been under control since October 2011 once I started to take Gabapentin. I have tried many combinations of medications over the years and they work for a while or I react badly to them. I have nearly 30 allergies to drugs, food, chemicals and even a ego building. I have to carry Epipens just in case i have a serve reaction to something.
I have also have a high pulse rate it it's rarely below 90bpm but have low blood pressure most of the time. It can be as low as 105/66 but most of the time its around 110/70. Also in April 2013 I was told that I had prediabetes and have issues with low sugar levels where it goes below 4mmol/l (72).
DeeNJai
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Permalink Reply by 99 on
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Dee Stainer said:HI
apart from those problems you are ok (tongue in cheek) like most of us
welcome and do not be shy or a stranger Dee
welcome
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Yes i'm fine. I also take Mirazapine before I go to sleep as it helps make me sleepy.
Dee
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Dee Stainer said:Yes i'm fine. I also take Mirazapine before I go to sleep as it helps make me sleepy.
Dee. you need to run that past your doctor as sleep meds and sleep apnea do not ususally mix
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Permalink Reply by Roz B on
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Hello Dee and welcome to this really helpful forum. I've been using CPAP for two years this month, i had a whopping AHI of 62 but on the whole is usually under 5 now.
I too have have a wide neck, small jaw and large tongue, none if which help.
I'm also a fellow Fibromyalgia sufferer but because i was born with hip problems which give me a lot of pain, i sadly haven't noticed any change with FMS although some people do find the CPAP helps, as you sleep better.
I'm also trying to lose a lot of weight, but very quickly. Its not the ideal way to diet but i'm waiting to go in to hospital for my second hip replacement.
Keep up your good work
Roz xx
Dee Stainer said:HI
I am quite new to the world of sleep apnoea as I was diagnosed with OSA on 28 February 2013 and received my RemStar System One Auto CPAP machine on 9 April. I went to my GP with being tired all the time and falling to sleep in the day. He asked me to the ESS questionnaire and I scored 23/24 so he said he would refer me to see someone about this. I had a home sleep test done over two nights at the beginning of February. Since I was first referred to the specialist I am 5kgs lighter and my goal for this year is to lose the weight that I am over so I have 35kgs (5st. 7lbs) to get to my goal of 51kgs (8 stone). It will take me the whole year to lose the weight as i'm aiming for 1.5lbs per week on average. I have a large neck even when I was thin its around 17".
I have fibromyalgia which currently under control due to the combination of medication that I take. I have had FM since childhood and it only been under control since October 2011 once I started to take Gabapentin. I have tried many combinations of medications over the years and they work for a while or I react badly to them. I have nearly 30 allergies to drugs, food, chemicals and even a ego building. I have to carry Epipens just in case i have a serve reaction to something.
I have also have a high pulse rate it it's rarely below 90bpm but have low blood pressure most of the time. It can be as low as 105/66 but most of the time its around 110/70. Also in April 2013 I was told that I had prediabetes and have issues with low sugar levels where it goes below 4mmol/l (72).
DeeNJai
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I also have problems with my hips as a child where my hips would pop out to joint they still do at times. I have notice since I started using a night guard my AHI have gone up from 3 or below to nearly 6 most nights. The dentist feels that I grind my teeth but I dont. He feels that is why I get pain and clicking of the jaw.
Dee
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stay with the pap and use the mouth guard sparingly like holidays or power outage
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Permalink Reply by Kath Hope on
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Glad we got you into the forum after your initial problems Dee. Such a pity they didn't realise the link with fibromyalgia and sleep apnoea all those years ago. Latest figures suggest 80% of fibromyalgia sufferers have sleep apnoea http://www.fibromyalgia-symptoms.org/fibromyalgia_sleep_disorders.html
Have you had your peri-diabetes diagnosis looked into since you started the therapy, as there was lots in the news last year about people people's glucose levels really improving http://www.eurekalert.org/pub_releases/2013-05/ats-tos051413.php
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