Hope2SleepGuide

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: 8147

Reply to This

Replies to This Discussion

Hi my name is Angie and I suffer with sleep apnea.


Welcome Angie and feel free to start up a new discussion if you need any support, and hope you find our forum a good place to be.

Kath
Angela Jean Botten said:

Hi my name is Angie and I suffer with sleep apnea.

Hi Everyone,

My name is John Wilkinson. I am 60 years old and I have recently been diagnosed with severe SA. I believe I have suffered for years with this condition. I am fairly fit and active and not overweight, but I do have an unusually thick neck and a 'crowded throat' . I have been a snorer for at least 35 years. However, over the last couple of years my condition worsened. I can 'snore the house down' when I am asleep - either in bed or in a chair and my partner was getting worried that I was stopping breathing many times when 'asleep' at night. My record apnoea was 28 seconds.

Over the years when I visited the doctors for chronic physical and mental fatigue  I was given every test possible and each time the results came back negative. I was even offered treatment for depression 3 times and once I was fobbed off with vitamin tablets. This made me feel very demoralised and even feel like I was a malingerer, which I am not. I have worked continuously for 40 years since leaving Uni.

However, salvation came when I moved and changed doctors. I was at a very low ebb - my concentration and memory had become really poor, I had no get up and go and I couldn't stay awake after tea time (although I NEVER felt tired  driving during the day time). I had an appointment with a young doctor and told him how I felt and his first words were, 'How do you sleep?' to which my reply was ' terribly'. He suspected I had sleep apnoea and referred me to a sleep clinic. His words were, as I left his room, 'It will transform your life if you receive treatment'. Why, in all my previous visits to the doctors, this simple question was not put to me I will never know. Maybe doctors need to be more aware of SA.

Now I am starting my treatment with my cpap machine. I am only in the first week of using it but surprisingly I am getting used to using it fairly quickly. I have a nose and mouth mask and have no problems with soreness or leaking. I do, however, get quite a dry mouth and throat still but I can put up with this. My night time visits to the toilet have halved and I am much less thirsty than I was. It is early days with the treatment and I know it will take a few more weeks before I feel any significant benefit but the main thing Is that I am in a positive fame of mind and optimistic that I will get my energy and mental sharpness back. Thank you for listening and letting me share my story.

Hi John - your story is so like mine except I am a woman.

I suffered all the symptoms you did,  but was dismissed by the doctor as having anxiety. I got to the stage where I dreaded the nights as I knew something was wrong,  but it wasn't until my husband literally took me to the doctors here in Germany that it was recognised - and instantly I might say -  by the doctor,  who arranged an appointment with a specialist.

After an overnight test proved I had severe SA I was then referred to a Sleep Clinic and subsequently was given a CPAP machine. It literally did change my life, I too was in a fog mentally and physically I was in a sad state.  I too took to using the CPAP easily and have never looked back in the year I have been using it.

As for the dry mouth I buy a Boots product called Expert Dental Dry Mouth Spray which I use before putting the mask on. I do find that helps and also I use a pure Sea Water nasal spray which clears my nose and helps too.

I am so glad you have finally been diagnosed and have got the treatment you so badly needed, and from now on I hope you feel a huge benefit physically and mentally. 

Best Wishes Karen Hamer

Hi John and Karen. Welcome to our forum to you both. Both your stories are similar to mine.....not overweight, yet diagnosed with severe sleep apnoea, although we now know it's no way linked to weight in many of us.  I too can trace my undiagnosed sleep apnoea back many years, even to childhood.  Oh and yes, I was regularly put on anti-depressants for anxiety, until finally the root problem was found!

Regarding the dry mouth, if you haven't got a CPAP humidifier with your machines, then it would be worth asking your hospital for one.  Meanwhile, the Xylimelts our charity sells are really good (see the reviews) as they can be used with our masks and keep the dry mouth away or much improved during the night http://www.hope2sleep.co.uk/xylimelts-dry-mouth-discs.html

Great you're feeling so positive John, as that's half the battle, and once you feel the benefits of your CPAP you won't want to sleep without it.

Best wishes to you both.

I found my way to hope2sleep really by accident and I don't know if I'm in the right place because I'm an appalling snorer and, having tried other options, CPAP seemed to be the next step. Maybe like others, I found it difficult to get coherent information about CPAP machines and if they could help me but, reading some of the information and comments here, I've already learned a lot.

If anyone can point this snorer in the right direction, I would be really grateful.

Regards from Gloucestershire.

Neil

Hi Neil and welcome.  I 'hope' you finding us by accident will be the start of better health and a cease of snoring for you.  The CPAP machines are a prescription item, and you first need a referral from your GP to your local sleep clinic.  If you go to this link on our website, you can read about sleep apnoea and see if you can identify any of the signs and symptoms http://www.hope2sleep.co.uk/sleep-apnoea-information.html

Neil Jay said:

I found my way to hope2sleep really by accident and I don't know if I'm in the right place because I'm an appalling snorer and, having tried other options, CPAP seemed to be the next step. Maybe like others, I found it difficult to get coherent information about CPAP machines and if they could help me but, reading some of the information and comments here, I've already learned a lot.

If anyone can point this snorer in the right direction, I would be really grateful.

Regards from Gloucestershire.

Neil

You need to get an appointment at your local hospital's sleep unit. They will fit you with a sensor on your finger that you wear overnight to measure oxygen saturation and pulse rate. The results will show if you have sleep apnea. Then you can either go for a machine or try some other remedy for your snoring.

Gloucester Sleep Service

Neil Jay said:

I found my way to hope2sleep really by accident and I don't know if I'm in the right place because I'm an appalling snorer and, having tried other options, CPAP seemed to be the next step. Maybe like others, I found it difficult to get coherent information about CPAP machines and if they could help me but, reading some of the information and comments here, I've already learned a lot.

If anyone can point this snorer in the right direction, I would be really grateful.

Regards from Gloucestershire.

Neil

hi my name is Bob o'brien I am a newbie to the site. I have recently been diagnosed with sleep apnoea I have used the  monitoring machine that diagnoses it and have received a letter from the hospital to go on Monday 29th January to pick up a loan c pap machine. I am under the heart of England nhs trust and will be attending good hope hospital in Sutton coldfield. could any one tell me what to expect on this visit which they say will be 45 minutes, I also have an appointment the following day of the same length. and will i get my own machine eventually. also advice on when to advise DVLA with regard to my driving licence,  thanks Bob.

Firstly, you do not need to advise the DVLA until you have been diagnosed, unless you feel sleepy or can not concentrate at the wheel.  You also need to inform your insurance.

As far a your appointment goes, it looks like you have had a home test and they are going to do a test in hospital, an overnight study.  However, I do not know how this hospital works, some do home studies, some do a half and half i.e. they give you a machine home, then if you are suspected of having it, they will take you in for a night to do a sleep study.  Others will take you straight into hospital for an overnight study where they give you a room of your own, monitored by CCTV.  You would be connected to a computer with sticky patches to your head mostly to detect what stage of sleep you are in, a few elsewhere, a band round your chest to detect how well you are breathing and to see if you stop breathing.  Sometimes they have a small tube come from a mask that you have on so they can detect what you breath out.  You will have a mask on if this is done and a machine will be adjusted by nurse/doctors through the night and you will be closely monitored all night.

In the morning or some time in the future you will get your results and might even (if you are lucky) get a machine, mask, hose etc home with you to use every night.  It will take a bit of getting used to, but if you are determined to beat this you will use it every time you go to sleep.  Once you become compliant i.e. 5 hours minimum a night with 5 or less events a night DVLA will allow you to drive again.  They will suspend your license until you become compliant, however, they are not so bad as they used to be, at one time they took your license and you had a lot of trouble trying to get it back.  I could never understand this as it is the un-diagnosed driver that is the most dangerous driver, or the one that denies he/she has sleep apneoa!  A lot of things depend on how your hospital does things, if you are not sure, phone them, they are usually helpful enough.

Welcome to Hope2sleep.

many thanks that's very helpful I think I may have put my enquiry in the wrong place thanks for your understanding still getting used to the site sorry.

Hi Rob, Im in Wales so the hosptial arrangements are a little different. I had a home overnight test which confirmed the suspected diagnosis then they loaned me a machine that automaticall varies the pressure. finally they loaned me a machine that is of fixed pressure set right for me. I will say that the results were nearly immediate with me feeling so much better.

The consultant and the technician made it abundently clear that I MUST inform the DVLA at that time once I had a track record of good compliance of treatment. They strongly implied that were I to have an accident there was little chance that the insurance whould pay and a could face a criminal charge too.

I imformed the DVLA and recieved a form to complete, once returned the DVLA contacted my consultant to check my compliance (75% and above rings a bell, but I'm at near 100% having only missed two night cos aof a stinker of a cold) and my insurance. There was no additional premium and no restrictions on my driving.


Good Luck

Reply to Discussion

RSS

Sleep Apnoea Forum

New to the Sleep Apnoea Forum? 

1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!

Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.

 

Latest Activity

Kath Hope replied to Chris Vesey's discussion Cure for wind
"This is a common problem Sally, and especially when new to CPAP, irrespective of whatever machines people use.  It's definitely not just an Airsense 10 problem. If you've not clicked on the link I posted above in my reply to Chris…"
yesterday
Sally Gray replied to Chris Vesey's discussion Cure for wind
"Hi, it’s interesting to read Chris’s comment that the AirSense 10 has given him flatulence whereas his previous CPAP wasn’t a problem.  I’m new to using a CPAP and have been provided with an AirSense 10 which I’m…"
yesterday
Kath Hope replied to Bob Blair's discussion So Clean sanitiser
"I'm not aware of finance, and we at the Hope2Sleep Charity certainly couldn't offer this unfortunately.  However, if you have a Paypal account then you can apply for Paypal Credit which is offered for products over £150 I…"
Sunday
Kyla Davies replied to Bob Blair's discussion So Clean sanitiser
"Hi Kath In relation to the Soclean do you know if any finance is available to purchase one of these machines? I do not mind spending that amount on one but would be very helpful especially this time of year to purchase one on a finance…"
Sunday
Kath Hope replied to Bob Blair's discussion So Clean sanitiser
"Great to hear this Andy Just as importantly they will help prevent gum disease from dry mouth (plus less dental bills)."
Friday
Andy Dykes replied to Bob Blair's discussion So Clean sanitiser
"Tried one Xylimelts last night. Best sleep in ages. No waking up with a terrible dry mouth. Very pleased thank you"
Friday
Kath Hope replied to Bob Blair's discussion So Clean sanitiser
"Thanks for supporting our charity with your order Andy, and they'll be sent out tomorrow.  I love the Beaumont Citrus Wipes and have tried all the others, and these are definitely the best.  I use them everyday. Hope you find the…"
Sep 11
Andy Dykes replied to Bob Blair's discussion So Clean sanitiser
"Have just placed an order for some mask wipes and the mouth discs. Thanks for the recommendation of the discs, fingers crossed."
Sep 11
Kath Hope replied to Bob Blair's discussion So Clean sanitiser
"The SoClean will never be supplied by the NHS as they can't afford to give out products like this.  We have the SoClean at the charity at the price we've been told it has to be sold for…"
Sep 11
Andy Dykes replied to Bob Blair's discussion So Clean sanitiser
"Thank you for quick reply. The advert was on TV again this afternoon with a web address that links to an Amazon site. After a bit of research I have found a UK seller for £245 with 30 day return. Still not convinced so called my Respiratory…"
Sep 11
Sleep2snore replied to Edam's discussion Double inhaling
"I am sure they are not, but a lt of people tend to tighten their masks up to tightly. A lot more than they need to to stop leaks, I was no exception at the start, if it leaked, tighten it more, but this was not the answer.  New mask the correct…"
Sep 11
Kath Hope replied to Bob Blair's discussion So Clean sanitiser
"I still haven't seen the advert Andy, but lots of people are contacting us about purchasing.  First and foremost, whether with the SoClean or not, it is important to keep our equipment cleaned.  You're doing the right thing…"
Sep 10
Andy Dykes updated their profile
Sep 10
Andy Dykes replied to Bob Blair's discussion So Clean sanitiser
"Oh dear. Looks like I'm in trouble! I have used a CPAP machine for more than 10 years (not the same one) and currently have a Remstar System One SE. Have just seen an advert on TV for the SoClean which got me wondering how often are you…"
Sep 10
Andy Dykes is now a member of Hope2SleepGuide
Sep 10
Edam replied to Edam's discussion Double inhaling
"The only trouble is that both the Amara View and the Dreamwear are too painful to wear. The part of the cushion separating the mouth area from the nose cuts in!! to the base of my nose and partly into my nostrils."
Sep 9
Sleep2snore replied to Edam's discussion Double inhaling
"Good detective work."
Sep 8
Sleep2snore replied to ged's discussion no EPR setting REsmed S8 spirit 2 autoset
Sep 8
Sleep2snore replied to ged's discussion no EPR setting REsmed S8 spirit 2 autoset
"I can't see why they would have it on CPAP and not on AUTO, I suspect it has been locked out by sleep clinic, resetting will not help. It might be right that earlier models might not have EPR as I do remember seeing something about that, but…"
Sep 8
Sleep2snore replied to Helen McIntyre's discussion Pressure under eyes
"ResMed also do Hybrid masks, but they are more like Nasal Pillows stuck on top of a mouth mask. These all look as if they are made by the same manufacturer to me, but they are an alternitive, however the Dreamwear looks better.  Make sure you…"
Sep 6

© 2018   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service