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[Health] Hi from another hosehead
#1
Hi
I am Dee and I have been on the site for a while but haven’t posted anything about me. I am 42 years old and am overweight by 76 pounds but I am very slowly losing weight. I have been in a wheelchair for just over 12 years now due to Fibromyalgia and also my hips have always been painful. My problems started when I had a fall as a three year old and hit my back and lower half on a car engine that was at the bottom of the stairs because I had problems with my eyes I couldn’t judge where things were like the stairs and doorways were always somewhere else. I would get lot delayed concussions because of the bang on the head.

By the time I was in my teens my pain levels started to get worse and in my late teens I started to have stronger pills from my doctor because otc medications didn’t touch the pain. By the time I got into my twenties my pain was controlling me because I couldn’t find a medication that helped ease the pain. It didn’t help that the job I had meant that I was on my feet for more than eight hours a day and at time seven days a week. Some day it could over 12 hours of standing. I wasn’t sleeping that well sometimes only getting a few hours before the pain got too bad to cope. Also between the age of 15 – 33 I moved nine times. In 2000 I moved 3 times and then after that until 2004 I moved another three times until I got my present home.

In 2001 I started to use a wheelchair because the pain had got so bad I couldn’t do anything if I walked into town I would spend the next five days in bed in serve pain. I found once I started to use the chair I started to get some control on the pain. In 2003 I went on a pain management program which I found useful but the whole four weeks of the program I spent it in spasm because I wasn’t allowed to use my chair. I learnt how to control the pain and now I am in charge of the pain. The unit felt that the program failed as they hadn’t got me out of my chair.

In December 2012 I went to my GP because I was feeling sleepy all the time and asked me to do an Epworth Daytime Sleepiness Scale and I scored 23/24 which is very high. He referred me to the hospital on 31st December and I heard from the hospital in late January about having a home test over two nights and this was done on 5th – 7th February and then I saw the doctor on 28th February and he told me that I did have sleep apnoea and then he referred me to another hospital to get the equipment, and I finally got my machine on 9th April and straight away I used the mask the whole night as I thought that if I have use this for the rest of my life then I might as well get use to it NOW.

I have had many different masks since then as the first mask was making my eyes sore as I already have very dry eyes. Currently I am using two different masks depending on what is going on with the leaks. I am having problems where I am getting very tired again and sometimes I am sleeping more than 12 hours a day. When I downloaded the data for 8th December it said that I got up at 1040 but I was in church from 1020 so that isn't right. Maybe it been doing weird things with the hours that I am sleep as one day it said that I got up 1245 which wont happen as my dog would have wanted to go out by then.

I am many different medications to control my pain levels so this means that I take more than 30 a day just to keep me going.

My dog is called Jai and he is a beautiful long haired German Shepherd dog and he will be eight in January. He is my rock as he has helped me with my depression as I had to think of him as he can’t do it for himself.
Dee Sleep-well

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#2
Welcome, Dee, you have been through alot, hopefully the CPAP will help you over time, my sister has Sleep Apnea, fibro and depression and CPAP is starting to help her and I had depression and the aches and pains associated with fibro but they have all ifted since being on CPAPand are back to somewhere near 'normal'.

Maybe the clock settings are wrong on your CPAP and the times may need adjusting.

With the increase in tiredness, obviously the amount of meds you are taking may effect your sleep apnea, what is you AHI and your leaks? Your AHI needs to be as low as possible but below 5 and I think the leaks read differently on a Remstar but normally below 24l.

It's good to have you on hear and hope Jai is keeping warm, it is summer here in Australia but I'm sure it's probably cool in the UK.
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#3
The time on the Respironics machines cannot be set. They are usually set to the UTC/GMT time but can drift from there. What you can do is when it is noon your time, note what time the machine says. That way you will know how far "off" the machine is.

Masks are the most important part of the treatment. The best machine in the world is useless if the mask is leaking or is so painful or ill-fitting the user won't wear it. Over-tightening the straps can create a ton of leaks. Masks are now designed to "float" on the face.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#4
Hi DeeNJai,
WELCOME! to the forum.!
Wow, you have been through a lot.
You have come to the right place for help.
Hang in there for more suggestions.
Edit: Don't be shy about trying different masks. Some people have to try
many" different ones
till they find what works. End Edit.
Best of luck to you.
trish6hundred
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#5
Welcome, and in a few ways, I think I know how you feel. I am currently in Pain MGNT, and among many issues I've had nine knee surgeries (first one in 1979), knee replacement 2009, shoulder rebuild 2010, hip replacement 2011. Have 'OA' rather bad, and the only NSAID I can take is Celebrex due to also being on blood thinners for life (due to a clotting issue). I've known of my OSA for bout 12 years now, but only just recently decided to learn more about being a hosehead.

I will say that pain meds and Apnea are a poor mix, but for me, quality of life is an issue.

Currently I am bouncing between the 'Wisp' and a 'Swift LT' - this after many years using a bulky nasal mask. Personally, I hate change, but finding a comfortable mask is critical, and once you do find one you like, be sure to stock up as sooner or later the company will either change it or stop making it.
*I* am not a DOCTOR or any type of Health Care Professional.  My thoughts/suggestions/ideas are strictly only my opinions.

"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
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#6
Hi
A little update I have been having issues with my machine as it been changing modes from APAP to Bi-Level which is impossible as it a Respironics REMStar Auto CPAP with A-Flex. Also since October I have noticed that I have been more tired again and this is about the same time the machine started to change modes.

I saw someone yesterday 17 January about this and when she downloaded the data she noticed that I am having lots of central apnnoea's and they are in clusters. I am now waiting for a full sleep study where I spend a night in hospital which should be in the next month. Hopefully once the test done they will give me a machine that treats both CSA & OSA and I start to feel less sleepy in the daytime. Currently I sleeping up to 13 hours a day or more. This isn't normal for someone to sleeping for that length of time.
Dee
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#7
Hi Dee, welcome to the forum. I spent a few days in Bath some years ago - it is a remarkable town in a very beautiful part of the world. I'd love to go back there one day.

I too have fibromyalgia but nowhere near as bad as yours. I have found that the symptoms are less severe and less frequent since I've been on CPAP. I also get mainly central apneas, and for that I need an auto-servo ventilation (ASV) machine. I don't think it's possible for an ordinary auto machine like yours to start behaving like a bilevel. Most likely Sleepyhead is misinterpreting the data - remember that SleepyHead is still officially in "beta" - it's not officially a complete program. When I changed machines from Resmed to Respironics and back to Resmed it got really confused! Smile

Good luck with your next sleep test. Hope it goes well for you.

DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


Bed

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
Welcome to the forum Dee. You have been through a lot. Glad you have come here for encouragement and suggestions from everyone. With the variety of experiences of everyone on this forum, it provides a rich environment and knowledge base. Good luck.
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#9
Hi DeeNJai,
Good luck to you with your next Sleep study.
trish6hundred
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#10
Hang in there DeeNJAi.

Your persistance will pay off.

Sleep-well
"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

Cool
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