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Help, Advice, Guidance Needed - hallra - 04-05-2020
Hello ApneaBoard,
I am fairly new to this board and I’m looking for advice from people with good knowledge and experience.
At the fourth time of asking I have been diagnosed with severe obstructive sleep apnea & possible narcolepsy.
- I also have Ankylosing Spondylitis and Adrenal Insufficiency (addisions disease).
After the diagnosis, I did a unsuccessful trial with a Philips System One & I also tried a Snoreeze mouth guard, this then got put on hold...
I developed a problem within my sinuses above my nose... whenever I lay down (lowering my head) within a few minutes I get bad pain, pressure and dryness occurring, I simply cannot lay down to sleep, I have to stay upright which was interfering with the CPAP trial... So I’ve been on a merry-go-round of doctors...
ENT who found nothing physical.
Neurologist who thinks it is migraine related... treated the issue with epilepsy/migraine drugs, this hasn’t solved the issue, however, it has helped reduce the migraines I wake up with and reduced the arthritis pains I get...
Psychiatrist, I’m suffering a fair bit mentally with mental exhaustion from lack of sleep and the migraine medication is tiring me out further, mentally I’m fine, I just need to get some psychology help with coping strategies...
This is where I am at today, I am absolutely exhausted from months and months, years of very little sleep, what sleep I get is very poor from sleep apnea, I’m exhausted/fatigued by medication and my medical conditions... over time I would say the lack of sleep and quality sleep is worsening.
- watching myself falling asleep on video, I’m waking myself up within minutes because of apnea.
- a pulse oximetry shows my SP02 dropping to between 90-92.
Speaking to my primary doctor last week, he suggested giving CPAP another go especially with the additional tiredness/sleepiness I have with the migraine medication, plus since my last trial I have cut out caffeine, anti-inflammation medication and lost 10kg.
When I went back to my sleep doctor he wanted to charge me ridiculous amounts of money for a 2 week trial with an old Philips system one, I wanted a longer period of time, he wasn’t being helpful, after an interesting conversation, I squeezed out of him a CPAP prescription and have gone onto the Internet...
At first I was going to hire, but when it became obvious to me that this wasn’t going to be very cost effective in the medium to long term, I’ve taken the risk and bought myself a new Philips DreamStation Auto with humidifier and heated hose.
- My room humidifier blew up at the same time, so rather than buying a replacement I invested the money in the CPAP...
So this is where I am today, the CPAP is arriving tomorrow, have done the right thing I hope so, I know long term I need to get use to CPAP it’s the only solution I have, have I bought the right CPAP, I hope so, what do think?
RE: Help, Advice, Guidance Needed - Gideon - 04-05-2020
If at all possible return the machine and replace it with a ResMed AirSense 10 AutoSet!!!
We see much better success with this machine.
RE: Help, Advice, Guidance Needed - Sleeprider - 04-05-2020
Had you posted before buying the machine I would have pointed you to a Resmed which offers greater comfort and efficacy due to the way the pressure is delivered. The Resmed CPAPs (Elite and Autoset) simply work better, especially for individuals with comfort issues or difficulty tolerating CPAP. A typical result can be seen in this thread http://www.apneaboard.com/forums/Thread-Now-my-son-needs-help The Dreamstation is a good CPAP but I consistently see better results with the Resmed. You asked a bit late, don't you think?
Anyway, we will help you to optimize your Dreamstation and get you off to a good start. You will want to download the free OSCAR software so you can monitor your progress and post charts on the forum.
RE: Help, Advice, Guidance Needed - hallra - 04-05-2020
I’ve been picking up on this board today, that the ResMed Airsense 10 Autoset might have been the better choice...
- Last year, on another board, I was recommended by someone to go for the Dreamstation.
- I didn’t think about coming to this board until today, when I came across it during my searching, I wish I had done earlier, but so damn tired, I just want some sleep
Is there a lot of difference, if I can change it, should I do so?
I don’t have comfort problems as such, it’s more actually falling asleep with it, I could wear the trial CPAP machine for hours, without problem, I just didn’t sleep.
I think my main problems are:
Noise disturbance.
Not being able to sleep on my side, I spent my whole life sleeping on my side, so sleeping upright on my back isn’t something I do.
- I have the Dreamwear nasal & Dreamwear fullface masks
This dryness in my sinuses, hence I need the best humidifier.
RE: Help, Advice, Guidance Needed - Gideon - 04-05-2020
ResMed AutoSet hands down.
Why ResMed?
1. Faster algorithmic response to events than PR.
2. Lower average pressure
3. Better to avoid Aerophagia.
4. EPR provides for better treatment of hypopneas, RERAs, Flow Limits, UARS, and snores
5. EPR acts like a BiLevel up to a limit of 3cmw and a max pressure of 20 cmw
6. EPR follows your breathing where as Flex predicts it with a feeling of fighting to get a breath when it predicts incorrectly
7. More flexibility in treating a greater variety of Apneas and respiratory events.
8. In general provides better therapy.
I have frequently told many DreamStation users that they need to get either the ReaMed AutoSet or. BiLevel to get better therapy.
Respironics costs less
But as SleepRider said we will work with you and the machine you have.
We have had 2 forum members switch from PR DreamStation Auto to a ResMed AirSense 10 AutoSet recently and they were stunned at the difference. These were out of pocket switches.
IMHO, and I'm sure Sleeprider's, switching to ResMed is a very good idea. If you don't I'm sure it will come up again in the future. As the above list indicates there are many things we can go with an AutoSet therapeutically that we just cannot do with a DreamStation.
RE: Help, Advice, Guidance Needed - Dormeo - 04-05-2020
If you can change your order, do; if you can't, don't worry about it. The experts here will be able to help you find your best settings.
Do you have a copy of your original sleep study? If so, would you remove personal information and post it here? It'd be especially helpful to know what kinds of respiratory events you were having.
I am not persuaded that the ENT has investigated the cause of your sinus pain adequately. I would recommend a return consultation (when that becomes possible) or a consultation with another ENT. Be sure the ENT understands your other medical conditions and all the drugs (OTC and prescribed) that you are taking.
RE: Help, Advice, Guidance Needed - hallra - 04-05-2020
Hi All,
I’ve put a request in to the supplier to cancel the order... In the UK, distance selling regulations gives me 7 days from delivery, to return a product for full refund, if product is unused, so I should be able to get a full refund... however suppliers T&Cs state a 20% restocking fee.. but this is against the regulations, so I might have a small battle on my hands with this one, but the long and short is the law is on my side and I paid with PayPal so I’ve got their protection as well, so don’t see too much of a problem apart from a bit of hassle...
I’m intending to end up with the resmed airsense 10 autoset by the end of the week
@Dormeo - I will get my sleep study results and post them shortly; I agree with your analysis of the ENT specialist and my endocrinologist and pain specialist concor as well, so will be searching for another ENT specialist...
RE: Help, Advice, Guidance Needed - Sleeprider - 04-05-2020
I know it was a hassle to turn around the machine and change the order. Since it has not even been delivered, I don't think you'll be on the hook for a restocking fee. It's always better to start with the best tools, and it makes it so much easier and rewarding to see new users succeed.
RE: Help, Advice, Guidance Needed - SarcasticDave94 - 04-05-2020
Sounds like a great idea to start out on a good foundation-the ResMed.
RE: Help, Advice, Guidance Needed - hallra - 04-05-2020
sleep study reports:
[attachment=21620]
[attachment=21621]
[attachment=21622]
Write up by sleep doctor:
[attachment=21623]
Let me know your thoughts?