It's nice to see you there. I have high hopes for this site! Rosemary

Kath, thank you for the kind words. The association is preparing to
launch an updated and expanded web site next week. The content will be
useful to those looking for information on sleep apnea, no matter where
they are.

Please let me know if I can be a help.

Ed

Hi all how do I edit my profile as I seem to have gone wrong somewhere. 

Hello Kath,
I've sorted my profile now. I ended up with all the boxes ticked when I'd unticked them. Sorted now :-)))

Hi, 
Yes the guys at Castle Hill seem to be very good. The nurse who I saw was very helpful. I started CPAP beginning of December and I've found it's made a great difference in life.
I got a dehumidifier with my machine but I'm strugglingto get onwith that as I seem to be getting water settling in the pipe to my mask and it makes a rattling noise which can be quite loud. Any ideas? I've tried the machine on the floor so it's lower than me and I've raised it so it's higher than me but it still happens.
I get on fine without the dehumidifier but get the dry mouth side effects. I was thinking of returning the dehumidifier to Castle Hill.   

Hi guys just joined the forum and was browsing posts and thought i would pick up on this one as thought i could help.

Neil the problem you have is common with a humidifier and is affectionately known as Rainout.

Basically it is condensation in the tubing caused by the temperature in the room you sleep in against the heated water in the tube.

It will take a while for you to get the humidifier setting right but a couple of tipe might help.

A hose huggie will help to stop the condensation also try changing the settings on your humid.

One thing i will stress is that it not a good idea to have the machine higher than ur sleeping height as the condensed water will flow down hill causing obvious problems.

lower than you is always the best place.

 

I am no expert but hope these tips help its all about trial and error as most sleep clinics are not that forthcoming with helpful info.

 

Regards

Andy

Never thought of that Kath thanks. I'll give it a try tonight. 

Hi kath,

found the forum after making a purchase from the store .

I have been battling with the condition for some 15 years and only diagnosed last year.

I have done some considerable research and am quite happy to share my experiences some good some bad !!!!

I think there is not enough support re our condition especially from the clinics although I am quite fortunate to be under a very good clinic in wales and the tech who looks after me is very pro active and helpful, but other people such as DVLA are not as understanding( i am a HGV driver) .

I wish you all the success with the forum and look forward to playing an active role in supporting it and getting to know the members as it develops.

was thinkin of doin a thread on dvla and their policies for all to read as there are a few things worth mentioning and would not want fellow users going through the stresses that i went through with them.

does that sound like something you would like to see on here??

If so let me know and i will type away lol

hi kath,

will do it in the morning or maybe over night depending on how I sleep???

Will also do one on rainout too if you would like.

 

Sleep well

Andy

Mornin Kath,

Just about to set about typin the new discussions , just a thought have you considered a twitter and facebook page for the forum to spread the word if you think its a good idea I would be happy to sort thes out as I not got much else to do thanks to dvla (long story)

Andy

Awe shucks mamme you gonna make me blush. No truly Kath it is people like you that are heros to me. I just lucked into a job that I am good at. The passion is apart of my nature.

 

Besides I always wanted to go to the UK!

I'll try doing my profile picture on the laptop if I can manage to get my partners daughter off it lol. 

thank you Kath, you are such a star lighting the dark path of osa

I am not used to forums so please excuse me fumbling around till I find my feet ... mmm might need to lose a lot of weight then :)

ah that's better if I lean forward I can see them lol !

ooops no, was just a mirage ...

hugs xxxx

and hello to everyone

 

thank you :)

our boy Sam on Christmas day with his present lol.

You are so like the picture I had of you  in my head but the hair was longer.

I won't put my own picture up as you need to encourage members not keep burglars out !

This forum is just what people need and I will be keeping my good eye on it lol !

xxxx

Sussed!!

 

Is that photo actually you? Grrrrr!

Why would you want to use a half-decent photo when you have this gorgeous one?

hello Kath, thank you for the warm welcome we sure do need to help each other from time to time and its nice to know that you are not the only one out there with sleep apnoea. when i first got told that i stop breathing when I sleep it worried me but when I got more information and was told it could be treated I was revealed.

All the better to see you, my dear.

Just happy to help Kath its not much fun not being able to see very well.

Hi Kath,

Thanks for the warm welcome. I think if we help  each other from time to time its good. It's also nice to know that your not the only one out there with sleep apnoea.When I was first told that I stop breathing while asleep it worried me. I have read a few books on the subject and spoken my doctor and hospital and armed with more information the I can swing a hose at  I was revealed.

Hi Kath,

Thank you for the welcome.  The site is great.  Would have posted sooner but as I've said elsewhere I've been having computer problems. Am now trying to catch up with all that is on here.  Site is growing fast!

Lisa

thank you kath, im sure there will be a lot of use ful information on the forum  so looking forward to finding a niche!

hi there and thank you for intrducing me to this site, i have had sleep apnoea for three years now and since i got my machine off the hospital i feel 100% better now apart from the usual marks on the nose,looking forward to hearing from you in the future,many thanks richard

Thanks Kath,

I've been getting the newsletter but hadn't registered on the forum, sorted that now. I'm coming up to 1 year CPAP use in June, it's been a steep learning curve, but I have a very helpful clinic who have been great and I have 100% compliance, despite a panic attack on night 1. But as they stopped me driving as my condition was so bad and I had to inform car insurance and DVLA, so the incentive was there to use CPAP otherwise no driving! Simple choice, but hard.

Pippa

Thank you for your welcome, hope to gain some information from this site

thank you kath,i dont know if you would be interested but i have made a heating devise for the cpap pipe which fits inside the hose and with your cover on the pipe makes warm air to my nose its great for me but i dont know about other people.i suffer with fibromyalgia and the cold air rearly disturbs me,let me know if you want more information.martin

hi kath,its a very simple idea realy,i have insurted a heating wire which uses the same amount of electricity as a 35w lightbulb,it has a thermostat built into it and switches on off all night.it is hot to touch but with your sleve on makes it ok.

Thank you for the welcome Kath, although I suspected I had sleep apnoea 5 years ago I have only recently been diagnosed.  I am currently on trial with a CPAP and am on night 4.  So far night 1 I removed mask because it got too hot, night 2 I had a panic attack, hyperventilated and ended up with a numb top lip, last night no matter which way I adjusted the nasal mask it leaked, first my left eye, adjusted mask, then my left cheek, adjusted mask, then right down my chest - took mask off and gave up... I'm going to perservere though, I'm wondering if I'll fare better with a full mask rather than a nasal one.  Only trouble is I cant bear to have my mouth covered up (nightmares of childhood dentist visits when they used to use the gas mask LOL); now even if I accidentally cover my mouth with bedclothes I panic!  Hope it gets easier with time... glad this site is here!

Thanks Kath, I will indeed introduce myself properly when I get home this evening.  I was fortunate enough to work for a consultant physician, and one day during a meeting I fell asleep.  Jokingly he thought I'd been out partying the night before (I wish); I told him that no matter how much sleep I had I never felt refreshed.  He asked if I snored, I confirmed that yes I did, and he suggested I might have sleep apnoea.  I never did anything about it until November last year when I was diagnosed as Type 2 diabetic, already suffering from high blood pressure, I asked to be referred to the Aintree Weight Loss group, it was during my initial consultation that the subject came up again and the doctor suggested that my GP should refer me for further tests.  These tests came back positive and consequently I've got this machine for a week on trial, with a view to them issuing me with my own machine next week.  I came across you this morning via eBay having just purchased a CPAP Medical Travel Tag alert from you - which is turning out to be the best £10 I have ever spent!  When I return the trial machine on Monday I will certainly mention about having a full mask - although I don't mouth breath normally, if necessary I'll ask for a further trial with a different mask.  I'm going to stay with my son and his family for the weekend, hopefully when I'm with other people I might relax a bit more when using the machine, I think part of the problem might be due to the fact that I live alone and am not fully confident that I won't suffocate during the night.  Thanks once again for your helpful advice, I will read the other posts over the weekend and it is good to know that I am not alone, that others have felt like I do.  Best wishes, Joanne

Thank you for your kind welcome 

hi Kath, thanks for the welcome, I'm sure I'll find out how to work this thing at some point, never having used f/b or any other forum before I'm having a little difficulty but having checked out the site I'm sure there will be plenty of useful info for me.  sleep well, Pauline

Thanks for the greetings Kath! It's nice to find a private place to discuss things. Some of the facebook groups have everything you say on your wall for all your friends and family to see!

thanks for sorting me out Kath, I can now sign in, will do as you suggest re the profile change.

Thanks, Kath
I am involved in research into the problem of CPAP failure and what alternatives can be found for the surprisingly large number of patients for whom no form of PAP, not even APAP is of any utility in relieving their symptoms. i also ran a large chain of sleep labs for a time.

Thank you Kath for the welcome.  I will read the posts to see if any relates to me, thank you  Josiane

Thank you Kath,

 

Will keep you in touch with how things are going? I agree, roll on 7th Dec and will see how I get on :)

Isla x

Thank you Kath, I have been reading forum for a long time and thought it was time to contribute.  

Hi Kath, thanks for adding me and the encouragement from your post over on Mr Oko's Blog. I hope this is the place to leave a little info about me, if not I am sure you will guide me.

I apprecaite any help am new to OSA!

I was Diagnosed in December and originally didn't want to try the CPAP Therapy, despite having an AHI of 62. I opted to have a MAD made but realising that this was only for mild to moderate cases I did some more reading and asked to go back to see the consultant. He was very understanding and even spent over an hour with me answering questions and finding me a 'small' mask to use….well I  just had my first night using my CPAP…. what a scary night. I wondered if I would wake up in the morning!

I went to bed early and managed about 3.5 - 4 hours, then had to get up to go to the bathroom, after that I just couldnt get my breathing right. I tried about 4 times but felt like I was being suffocated. I think I just ended up panicking, hyperventilating and then crying….knowing this is what the rest of my life is going to be like. In the end I decided to leave the mask off and just go to sleep… i think I got about 2 hours.. I just hope tonight is going to be easier.

At least the period that I did have the mask on I wasn't snoring according to my husband! Thats one blessing!

Oh, glad you saw my comments to you on Mr Oko's Blog - he's doing some great work :)  So pleased you've joined us on here, as this is a great place to get CPAP encouragement, and we have another 2 members new to CPAP and struggling, so have a good read through the posts.  You'll also see a search bar at the top right, so anything you want to look into, if you type it in and it's been discussed before, then the old posts will show up.

A good place to introduce yourself is here http://hope2sleepguide.co.uk/forum/topics/welcome-from-kath-mike

Also, feel free to start a new post or add to ones which have already started so we can help you.  Did you read my own story on the main website at www.hope2sleep.co.uk ?  There's also lots of comfort accessories for CPAP on there too.

CPAP's not easy at first, but I promise it gets better.

Kath x

thanks for all the info Kath and the lovely welcome. It was refreshing to see other women as every corner I turn, its like this complaint is directed just to men…. so thank you for setting all this up.

since december I have done so much reading i am struggling to take it all in. I'll go over to the other forum pages later today and introduce myself properly. I'm not even dressed yet!!

I found your site before I went back to see Mr Oko after xmas and bookmarked it. I have a few other health issues which I am worried are going to stop me coping so well with all this. But I have to persevere I know.

I may PM you later if thats ok with a couple of questions

thanks roz x

Yes Roz, it's mind-blowing at first when you do all the reading and realise just how common OSA is - in women too!  You're welcome to pm me or you can email at hope2sleep@hope2sleep.co.uk if it's easier.  Until the clinic was set up in Boston, all people over the river were treated by Castle Hill Hospital, here in Hull so it's good there's something nearer for you all now, and Mr Oko seems a real gem :)

Speak later....

Kath