10 weeks on CPAP

[TIREDTINA]

Hi all, I am desperatly in need of advice. Dont know were to turn next. Was diagnosed early last year. Got an appointment for sleep test at the Royal Bromton london on the 18th october. I was told I definately had Sleep Apnea. Apparantely my tubes collapse during sleep. I have had trouble with tiredness all my life. I was first sent to a speicialist at about 12 years old for constantly falling asleep over my desk. Nothing was found wrong then and many tests over many years nothing was ever found. In the end it was put down to deppression. I have always known somthing was wrong.

The specialist at the Brompton told me I have probally had it all my life. He also told me other members of my family probally have it. My daughter is waiting to see a specialist. She suffers the same as me. By the way Im 50 now so have been botteling this up for a long time. Anyway I better get to the point or Ill end up writting a book.

I was sent home the morning of my sleep test with a Resmed s8 escape and an Ultra Mirage 11. I have had no improvment at all. My appiontment for my next sleep test is June 11th. I was finding the mask was leaking quite a lot, so I brought a Mirage Swift 11 nasal pillow system. I was also wondering if an auto spirit might help. I keep trying but still no joy. Help, any sugestions.

[puffin]

Hi Tiredtina
welcome to the forum. Have you tried speaking to your clinic, it may be that the masks that you have tried are not suitable. I went through 5 before I found one that worked for me. Very often the settings of the machine need to be fine tuned. Rather then wait for your next apointment ring them up and ask to see someone A.S.A.P. I've said this before, "He/she who shouts loadest, gets".

Don't worry too much we all go through a period of trial and error. It take a while to get it right, but when it does come right, you will be grinning from ear to ear.

Good long sleeping.

[Joe McManus]

Hi Tina, good to see you posting! Having had it for 38+ years is quite phenomenal. No wonder you feel tired! You probably don't even remember what feeling refreshed is like Anyway, glad you finally got help with your condition.

You say you had no improvement which made me wonder... Your CPAP machine probably records data to monitor compliance. Those who issued your equipment will be able to read it out and confirm whether therapy so far 'worked'. After nearly 40 years of suffering, I wonder whether you'd actually feel an improvement even when your number of apnoea events per night for example dropped from 50 to 20. 'Behind the scenes' that would mean a greatly improved blood oxygen level but considering the 'damage done' by 40 years of sleep apnoea, it might not be long enough to make you feel the difference.

To get confirmation whether it's working so far, perhaps you could arrange for them to read out compliance data before that June date, to give you peace of mind. At least then you know that despite not feeling it (yet) it is in fact doing your body the world of good.

[TIREDTINA]

Hi Guys, Thanks for advice.

Hi Guys, Thanks for advice. I wondered if I might need a full face mask. I find myself waking up were I have tried to breath through my mouth. Of cource it could mean I need a higher pressure.
I have recieved a letter from consultant saying my data card proved CPAP was not helping and I will be called in for another sleep tast. I got straight on to appiontments but they say there is no appointment till june. I am now hoping for a cancellation. Cant be soon enough I let DVLA know so now have to wait to get my licence back. Things seem to be inprooving anyhow. These last few days I have managed the mask for about 7 hours. By the way Joe from what I gathered from consultant, I was actually born with these small flat tubes.

You are not going to believe this I have just this minute had a phone call from the Bromton I have got a appointment for this thursday.
Thanks again Guys. Ill let you know how it go's.
HAPPYTINA

[Joe McManus]

Nice one, no such thing as coincidence. Energy flows where attention goes. Hope they work out a way to make it work for you.

[acebass]

You are not going to believe this I have just this minute had a phone call from the Bromton I have got a appointment for this thursday.
Thanks again Guys. Ill let you know how it go's.

How strange is that! and fortuitous ( sorry, swallowed a dictionary for lunch)! [less calories than a sandwich]

[TIREDTINA]

Sleep Study

Hi all,
Had my sleep study last thursday. I think it went well, did not get a lot of sleep but apparently my oxygen levels stayed level. They used an apap machine and told me my optimum level is 8. I was awake quite a lot of the night and was watching the pressure going up and down. It started at 4 and went to 12 at times, while I was watching anyway. I was thinking about buying an auto pap machine but that has put me off. I did not like the pressure rising and falling. When I removed my mask the pressure shot up on replacing it. Anyway it looks like CPAP will work when I get the pressure right. I cant tolerate 8 yet but I am creeping up. By the way DVLA didnt take my licence away yippee.

Thanks for the words of encouragement Guys.

[acebass]

Just try and stick with it, it is difficult at first, but it will improve you general wellbeing not just your tiredness. Just the feeling of having had a few hours good sleep pushes away the annoyances that wearing a mask entails (doesn't work for eveyone, but you need to give it a good go).

So, onward and upward....here's hoping you do ok.

[Joe McManus]

Great news Tina. And if they know 8 is your best, you might as well get regular CPAP. Saves a few quid too.

[retsyo]

Fellow female sufferer

Hi Tiredtina How good to know there are other females suffering. Like you I was told I had narrow tubes and that my offspring are possible sufferers. My son is also getting checked out, he is a very bad snorer.

The consultant told me that if I was much younger I possibly could have some reconstruction work done. Currently I am on long term vacation and diagnosed in New Zealand where I am receiving help.

I just cannot remember when I last woke up feeling refreshed and full of beans. My second husband was even physically abusive during the night because of my snoring. Have had various surgical procedures done to try to solve the problem but none have been satisfactory. Now with more understanding guy although he has to sleep at the opposite end of the yacht because of the din and he is disturbed by my getting up and down.

Pleased to hear you did not lose your licence.

[TIREDTINA]

Narrow Tubes

Hi Retsyo,

Nice to here from you. As you say its nice to know I'm not the only one with these narrow tubes. My daughter has been referred to a sleep specialist and now also my brother.
Seeing as this is genetic I take it we have had it from birth. I'm wondering if you've had similar problems. I have been tired all my life. Suffered quite a bit with depression. Also I have suffered poor health, always something wrong especially with my autoimmune system.

Enjoy your Vacation

TiredTina

[chelseauk]

Same here - told i have small airways - don't matter what i do - CPAP for the rest of my days - unless someones comes up with a miracle procedure.

Not the best news - but better than the alternative (ie being dead from a heart attack or stroke).

[TIREDTINA]

Hi Chelseauk
Just read Retsyos post. She has narrow tubes Like us and also she suffers with hypopnoeas the same as me. I was wondering if that was your diagnosis as well.

TiredTina

[Joe McManus]

I just got this by email, not sure how but let me paste it. Considering the reference to NZ, it must be from Retsyo:

Hi TiredTina

Like you I seem to have suffered years of illness and constantly told there is nothing wrong with me. I think every organ, muscle and tendon of my body has been attacked over the years. In the past few weeks I have had a gastroscopy and a colonoscopy, they did find I had colitis possibly caused by OSA. Have suffered for years with really bad reflux and intolerances to masses of foods. NZ sleep consultant told me OSA most likely responsible. I have also recently had all the symptoms of fibromyalgia but not found to have it - another side effect of OSA I was told.

Over the years I have been given many drugs and potions to help me sleep and to cure the very bad headaches - teeth guards, grinding down of teeth, surgical procedures on my nose and these occurred years ago. Some years ago I was given Benzo's by my GP for 12 months to which I became severely addicted and had to seek help from CITA. Sadly I did not read the small print on the drug details. This caused havoc with my body and sleep. I have normally been able to fall asleep but not keep asleep for long. I just put it down to being a light sleeper.

After so many years of bad sleep and ill health I am hoping I will be able to crack the APAP and mask to get some sleep. Sadly I have not mastered it yet but believe currently it is a bit of mind over matter and a inquisitiveness to see how it all works - watching the pressure change and how my breathing and nasal congestion react.

I am having problems finding a comfortable mask as those I have tried, apart from the nasal pillows, all press on my sinuses and nasal bridge causing great discomfort.

Time is short for me to get set up as I shall be sailing away from New Zealand in April to more remote areas where there wont be a sleep clinic at the end of a phone!

I guess she replied to a thread notification.

[chelseauk]

Not sure my at home sleep study would have picked up hypopnoeas. It wasn't mentioned. But you can hear me stuggle to breath when i'm awake (apparantly) ! My point being that my air ways collapse a bit when i'm awake.