C pap theraphy...I have been found to... - Fibromyalgia Acti...

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C pap theraphy...I have been found to have Moderate Sleep Apnea

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Having just heard I will be seeing the consultant regards my recent sleep study and the fact I stop breathing up to 30 times and hour in the night...its been suggested I have been put forward for a c pap machine...I'm devasted and also worried re not being able to drive should they take my licence away until I am being treated well...( Apnea clinic said they would go through dvla stuff with me on the 21st and I don't need to do anything before then) I'm not nodding off in the day unless sat doing nothing for a lengh of time and I am also now sleeping better at night again...only one epside I was aware of last night. I also feel that hubby will hate having darth wader next to him every night...he said he loves me what ever and I know he does...

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14 Replies
Ozzygirl64 profile image
Ozzygirl64

The main thing is you have a diagnoses and willget help with it and that is all that counts. My nurse reckons I have sleep watsit but I am onot so sure. But I wish you well and maybe you could buy hubby some soft comfy ear plugs for Xmas xxxxx

in reply to Ozzygirl64

All the different things being thrown at me at the moment are driving me mad and I am not sure I can cope with hearing much more...

I am glad I gotthings checked out as I was waking gasping for breath several times a night and hubby thought I was going to die on him...One good thing is hubby is usually asleep before even leave the bathroom so earplugs only needed for me to get to sleep xx

Ozzygirl64 profile image
Ozzygirl64 in reply to

I know how you feel hun, everytime I visit the GP I come back with something new. I only go over if something goes on for a long long time, or something suddne happens xxxx

tulips123 profile image
tulips123

Hi, I'm not sure what a pap machine is, but i'm attached to oxygen concentrator 24/7. It sits in the lounge and a long tube attached to nasal specs follows me everywhere I go (my grandson finds hide & seek really funny with me). I have a mobility scooter and portable canisters. Treatment for breathing problems is very good, and as long as you are getting treatment I can see no reason why DVLA should take your licence away from you.

I wish you all the very best. There is life after diagnosis! xx

in reply to tulips123

The C PAP is only to wear at night its too insure my airways are supported when sleeping as I do stop breathing which means your not so rested as you might otherwise be...I became afraid to sleep and was only getting between 1-4 hours max at one point which could be the same as feeling under the influence when driving the next day, reactions ect.

It seems mine is also all related to the fact I started the menopause with a bang and have had loads of different things happening.

I seem to be in a state most of the time and I feel my life is falling appart at the minute and this has just been the icing on the cake after a very bad few weeks.

I am able to get free travel with my local council and I could get a perminany travel card depending on what the doctor says in his letter.

Thanks for your support and input x

tulips123 profile image
tulips123 in reply to

I think a diagnosis like this can be one heck of a shock, but at least now you know what the problem is and treatment means you can still have a normal lifestyle, albeit 1 that includes the machine and regular monitoring to ensure no changes, good or not so good.

One thing I would like to add. You should inform your energy supplier that you need vital oxygen support at night because you are TOP PRIORITY in the event of power supply going down. I have a large oxygen tank for use in the event that I loose supply. Oh and I also get extra electric rebate from Air Liquide who supply and maintain the machine + canisters. Take care now. x

sisterbadcrab profile image
sisterbadcrab

Hi Mumof5 i too have sleep apnoea ad have to use a C.P.A.P machine, re the DVLA i informed them of this fact and i was able to give them all the info they needed eg. consultants/ hospitals name etc. once i had been discharged from the consultant, i was able to drive, so hope fully it won't be long before you will be able to drive, hope this helps in some way and i wish you all the best take care :

How long did it take for you to be discharged? I have been told by the local council they will give me a free bus pass so all it not too bad however with other issues my car is my lifeline

fibro profile image
fibro in reply to

just adding on from my post below, every hospital works differently, I am under them for life, I don actually get discharged, but it never prevented DVLA agreeing to me keeping my licence. one the consultant can see yo are using the CPAP machine regularly they will inform DVLA and they write back to you and your GP confirming you are ok to drive, but if you were t then stop using the CPAP therapy and don't notify the DVLA it's likely to make your insurance invalid. I haven't driven since I was diagnosed by put that's fir ther evasions, but it did worry me that I would have my licence taken away. some patients the DVA insist that that you have a licence for so many years then they need to check on you again, ther are loads of factors involved any everyone is different.

you will be fine xx

fibro profile image
fibro

CPAP machine is a continuous positive airway pressure machine, that pulls air into the machine and delivers it at a set or variable pressure through a tube into a mask that fits either just over your nose or your nose and mouth. usually mouth breathers go for the full face mask, but it is possible to learn to use just a nasal mask.... believe me I've been there.

I unfortunately have extremely severe obstructive sleep apnoea, but as long as I comply and use the mask nightly the DVLA have said its fine to continue to drive. I have to notify them if there are any changes and yes, you are legally obliged to notify them, they then write to your consultant who will advise the DVLA of your compliance.

each CPAP machine contains an SD card where the data is taken from. you may be asked to take your card to your follow up appointments so they can download the data, but Philips Respironics send for mine and swap it with a new one every so many weeks/months, so basically i work with the consultant and Philips.

it takes a while to get used to the mask, but make sure you follow all instructions as some people think they have to be tightened up too much, in fact the opposite is true. there are plenty of you tube videos that guide you through, and once you have your machine, if you want to feel free to PM me and I will give you details of a forum for CPAP users that is run by another lady. that was my initial worry, I thought it was just men that had this condition...... no idea why I thought that, maybe that most women never admit to snoring lol

some people depending on their circumstances can stop using the machine just buy losing excess weight, but for me unfortunately the machine is for life. I won't lie to you and say it's going to be easy, but without a supportive husband, GP, sleep consultant, who I might add was on the TV programme on Thursday showing you the usage data on screen and fitting a mask, I couldn't have got through it all.

they can tell from the data recorded on to the machine exactly when you are sleeping and using the machine, or if you take it off, so there is no way of saying to them you are using the machine if you aren't :) that's something I was told straight away. lol

initially I said no to the machine as it scared me too much, so I went home done my homework then made another appt to see the consultant and agreed to give it a go.

through many tears and many masks, I now just have telephone consultations with him and Philips Respironics also send me the data so I can check on my own progress. I am 100% compliant now, so not bad in just under a year I have gone from not wanting to use the machine to 100% compliancy.

If you have an AHI (Apnoea Hyponoea index) reading of 30 you are bordering upon severe, so it's very important for you that you do give it a go. make sure your OH goes with you to all your appointments as he is going to be the one sharing 'the experience' of using the CPAP machine, so he should share the appointments too, he may have questions to ask that you haven't thought about. you must also follow the regular cleaning regime of the mask, tube and filters..

You may find that within a week or so that you benefit from feeling less fatigued. I am convinced there is a link between OSA and Fibromyalgia, but there hasn't been any studies that I can find. but due to other health issues, unfortunately I haven't been relieved of any tiredness or fatigue, but many people do. I hope you do.

I also like you never felt sleepy or anything, we just asked the GP about my snoring. I have snored since I was a child but my OH said it was getting worse and where he thought I had stopped snoring, which to him was a nice bit of peace and quiet! I had actually stopped breathing! so it was a huge shock to him and my GP. I won't put what my reading was as I don't want to alarm anyone....... but if anyone is at all concerned about changes in sleeping habit especially snoring..... PLEASE go and see your GP. it's nothing to be embarrassed about either. As I said, I got through many tears, and that was during many appointments, but I was given the much needed support and have come out the other side..... unfortunately though the CPAP machine has to stay with me for life.

after you have started using your machine, if I can help at all please do PM me.

I wish you luck, you aren't alone.

I watched the show Goodnight Britain on Wednesday and Thursday. and only wished they had shown a female patient as that was one if my first worries, I only saw men in the waiting area, but finding this other great forum, that has been set up by a lady who uses CPAP herself , men are on there too, they certainly helped me get through the past year and you will too xxx

I did watch the goodnight Britain and got told off by hubby when I said I would rather die than have to use the cpap every night...I didn't mean it, I am just struggling with all that happening at the minute and my work life falling appart too is not helping.

Hubby says I also stop breathing after snores and sometimes longer than he is comfortable with...They also link womens apnoea with the menpause and in my case its that, allergies and weight. I had allergy tests this week too.

I got the impression my time with the sleep clinic would now also be ongoing and that once I am seen by the consultant again on the 21st I will be involved with a few others also with apnoea to teach us all how to use our C Pap machines so we don't feel so alone in the situation we find ourselves.

Local council will also issue me a bus pass for free to use with a doctors letter so I will be able to get about still as at 46 I would not get a bus pass normally yet...It would be a medical pass. Getting to town costs £5 normally so this pass will be a godsend as I don't usually drive there due to parking costs also.

fibro profile image
fibro

I can totally empathise with you. Earlier this year I said the same thing, but it wasn't from using the CPAP machine, just a combination of everything. For my husband's sake I went and told my GP how i really felt and he has been great with me. Theres thing he cant help me with but knowing that i had told someone else who actually listened to me helped. I also found writing out all my feeling about what was going on in my life, it wasn't just OSA or Fibro but I have other problems and to finally find a GP, maybe a first in my whole life who was happy to listen to me…I did make a point of telling him and thanking him for that!!

and having to put up with my long letters, but if you send them before you go for your appointment hopefully he would have read them and will be able to start helping or supporting you in whatever way he can. I've just mentioned in a pm to you, make sure your OH goes with.

You say he told you off for thinking like that, well I got the opposite reaction, he took it personally as by saying I no longer wanted to live meant I no longer cared for him. there are so many ways of looking at it. Please show him what i have just sent you. I have been there and said exactly the same. I found that telling my GP and my sleep consultant how I was feeling it took some of the weight off my shoulders just by telling them how I felt. Also I found it helpful writing an online Blog. Its a private one that no one else can read, but I haven't completed in ages now. Its been nearly 11 months since i started using my CPAP Machine, so it must mean if I have nothing to write in the online diary, then i must be getting on well with it.

I have to be honest I hate it, but I would rather look after my health. My OH and i have only each other so we need to take care of each other and if this preserves my health then its a good thing.

Please let us all know how you get on and remember I've been through it all, so i know how you will be feeling and will be thinking of you

take care xxx

paddysmum profile image
paddysmum in reply to fibro

My grandson is 4 and also has sleep apnea! His problem is his very large tonsils which unfortunately means in three weeks he is booked for surgery, however because of his apnea restricting his growth he is very small for his age but hopefully he should catch up once surgery is completed. Bless him.

I was recently diagnosed with sleep apnea too. I just picked up my cpap machine this morning and I will try it for the first time tonight.

My specialist is happy for me to keep driving as long as I don’t drive when I’m tired. It just depends on how the sleep apnea affects you (try not to worry about the DVLA until you spoken to your specialist) I suffer from insomnia at the same time (not a good combo) but at least it prevents me falling asleep while driving.

Im feeling hopeful to get a bit more energy again but quite nervous about sleeping with my new mask on tonight. Hope it will benefit you too. x

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