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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 Deborah Wainwright on
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Hello Dee,
Welcome to the forum! The good news is that getting your OSA undercontrol with CPAP should make it easier to lose weight AND might even reverse your pre-diabetes if you can comply with CPAP therapy (a minimum of 4 hours a night, but the longer the better!!)
Good luck and I look forward to hearing about your progress.
Debi
DeeNJai 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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Permalink Reply by DeeNJai on
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So far there hasnt been much change in m y pre-diabetes since I started treatment. I think it got slightly worse because I have had more hypo's and also I do have some high blood sugars. I start having symptoms of a hypo at 4.4mmol/l and I have a problem with passing sugar in my urine. I am day 258 of treatment and only missed 14 days of treatment. 7 of those days was when I was waiting for a new hose. So it only been 7 days where I havent met the 4 hour fresh hold. On average I use it for 9 or 10 hours a day. Still wish I could stop the naps in the afternoons but I just get too tired.
I am going to make an appointment with my GP this week to discus my medication and see if I can cut down on some or cut out the Mirtazapine to see if that helps with AHI as the last month my AHI have increased to most days between 4 & 6 whereas before I had my night guard it was down to less than 3 most nights. Last night it was day to 3.1 with the FitLife mask. I am finding the night guard is making my jaw pain worse especially at night. I will get an appointment with the dentist this week to just to see if there is anything he can do. The guard fits snouggley on the bottom teeth so not sure why my jaw is so painful. I know that I have TMJ in the jaw.
Dee
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Hi Dee,
I would also recommend going back to your sleep clinic - they might be able to help and now that you have quite a bit of data built up they might be able to understand why you are still so so tired and needing a nap.
Debi
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Permalink Reply by Kath Hope on
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What are you using the mouth guard for Dee? Was wondering if it's for bruxism whether you actually will need it now, as many people stop the grinding when they're been treated for sleep apnoea. Just a thought....
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The dentist feels that I grind my teeth which I know I dont grind my teeth. He is worried about the clicking in my jaws so he made a guard up to see if that helps but its making my jaw painful.
Dee
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My jaws have clicked all my life, but there again I don't get pain thankfully, but I did when I tried a mandibular device with my CPAP recently.
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Permalink Reply by Jonathan on
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Hi
My dentist has told me I gave ground my teeth too, but I have never been aware that I do. However, I've also heard that teeth-grinding (bruxism) is associated with OSA. I've pointed this out to him, in case he wants to refer other patients who grind their teeth for sleep apnoea screening.
My dentist is delighted by the improvement of my dental hygiene over the last couple of years. The only difference I have made is going on to CPAP!
Jonathan.
DeeNJai said:The dentist feels that I grind my teeth which I know I dont grind my teeth. He is worried about the clicking in my jaws so he made a guard up to see if that helps but its making my jaw painful.
Dee
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Apparently I used to grind mine as well Jonathan. I wasn't aware of it, but was constantly having to have my back teeth smoothed down - not since CPAP though. There's talk that untreated OSA can cause tooth decay to do with lack of saliva from mouth breathing and snoring. Apparently we need the saliva. My dentist has sleep apnoea himself, but still he never connected the grinding or noticed my scalloped tongue. So many dentists, with more knowledge, could easily spot the signs in their patients.
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Permalink Reply by Roz B on
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Kath
Happy New Year to you
I tried mentioning something to this effect about the connection with OSA and FMS ( with out the stats though) on a fibromyalgia forum that i visit, and sadly it was just ignored. I have often suggested to some that they should ask to be referred for a sleep study.
I know for me it hasn't improved any of my pain, and the CPAP hasn't improved any fatigue and its been two years now since i started on CPAP, but I know from what you have said in the past that you have come across FMS sufferers where their symptoms have improved greatly.
Its such a shame that these departments within hospitals dont treat you as a whole, rather than push you around to different clinics and one department doesn't communicate with the other:( xx
Kath Hope said: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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Hi
I can remember that I use to be a sleep and then would sit bolt up right and be awake. I'm quite shocked that it didnt wake me sister as she was on the top bunk. it would happen regularly a few times I was sick in my sleep but didnt wake up i would catch my hair in the base of the bunk. Unfortunely my foster parents werent great as they would make me wash them by hand. Once we went to bed we werent aloun out of bed so we had to go sometimes upto 12 hours before we could go to the toilet.
Dee
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That's so sad Roz that people are ignoring it, as for many of them their fibro would be improved with CPAP therapy. Shame yours wasn't though
Dee, I also used to get woken a lot from sleep after dreaming it was being strangled or suffocated - seems it wasn't so much a dream as to what was really happening. Hindsight's very good eh? Sounds like you had a tough time being banned to the bed for 12 hours, and especially when children, and adults for that matter, often need to go to the toilet more often. Lots of children (and some adults) even suffer from bed-wetting due to this.
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I have an appointment next Friday at my Sleep Unit. I will let you know how it goes as I am going to ask them to replace the machine as I dont trust it anymore. I will start getting questions ready and also get some printer paper so that i can print them out. I'm lucky if I can go more than a couple of hours needing the toilet but I cant take the meds that help control the overactive bladder.
I saw my GP today and he has increased my Mirtazapine to 30mg per night. My depression has increased over the last three months but I was hoping that it would improve but it hasn't. I am not getting the quality of sleep i was first getting from the treatment.
Dee
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