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Going onto CPAP without definitive results - gaydolphinorgy - 09-25-2021

Hello,

I have had unrestful sleep for a decade, restless legs, insomnia (both sleep onset and dawn awakenings), low energy, feeling constantly hungover especially in the mornings, sometimes feeling like I'm choking when falling asleep supine, and other symptoms like depression, anxiety and sexual dysfunction. My symptoms dramatically increased since I took one pill of an antidepressant 8 months ago. I am not overweight nor have I ever been. I'm in my late 20s and didn't realise that feeling like an old man in your 20s is not normal and was always told this is just the way I am or I just have depression. It affected major life decisions and I'm struggling to piece my life and health back together. I would hugely appreciate your help.

I have had 3 tests done so far and am still confused. My Watchpat One showed a total pAHI of 0.8 but pRDI of 26.2, 3 oxygen desaturations at 4-9%, and 'high period variability of PR' which shows possible periodic leg movement syndrome, light snoring (11 minutes total) with few spikes of very loud snoring. I am in the UK.

I then had an at-home study done with a sleep clinic (during whichh I only was able to sleep for 2 hours) which showed an overall RDI of 12.3 (and REM RDI of 34.3), and AHI 12.3, so they seem to have equated the two. Supine AHI is 0. SaO2 is baseline 96% and minimum 87%. Hypopnea 8.1% of total sleep time and apneas 0.9%. Leg movement index was 29.6/h. 

The doctor told me I only have mild apnea, don't need a machine, just suffer from insomnia and depression, and prescribed me a sleep aid/antidepressant, but I got a machine anyway (Philips dreamstation -- this was right before the recall, which doesn't seem to really apply outside of the US). The doctors at this clinic (I spoke to 2) didn't seem to know much or care about UARS, but it was hard to tell anyway because he just didn't want to discuss this. The first doctor I spoke to offered a dopamine agonist for the leg issues, but I'm wary of possible side effects, though I'm considering trying this for PSSD (post-SSRI sexual dysfunction). My doctor told me that either I can take the sleep aid/antidepressant (trazodone) or find another doctor.

I used the machine for 2 weeks on trial but didn't feel any difference, though I know it can take months.

I sent the results to the NHS (public health in the UK) and they did another at home study, on the grounds that 2 hours of sleep on my previous study is actually insufficient. They refused to give the raw data due to "protocol", and sent a letter with the results: AHI and RDI both under 1, and limb movements not diagnostic. I also got blood tests on the NHS for iron levels in case this caused the leg movement issues: serrum ferritin 101 ng/ml, serum transferrin level 2.7g/L, transferrin saturation index 35%, all within range according to the NHS ranges. 

I also saw a dental sleep doctor who told me that my airway is rather narrow, and offered me a mouth guard for TMJ. I sent her my sleep studies and she responded saying I don't have sleep apnea.

I'm really not sure what to do at this point. Surely an RDI of 12.3/REM RDI 34.3 is quite high? Surely this indicates UARS? Should I get a third opinion? Should I do another test? Should I not use the Dreamstation due to the health risks and buy a Resmed? Should I just try the Dreamstation for a few months on my own and see? I've already spent so much and don't want to keep shelling out money. I have used techniques to combat the insomnia and have had a great deal of success in only a matter of weeks, but I still wake up feeling like I haven't slept at all. I have been doing high intensity regular exercise (mostly resistance training) and cleaned up my diet, albeit only for 2 weeks so far.

I hugely appreciate any help because I am really suffering.


RE: Conflicting sleep test results, unsure what to do. Please help - sleepfordays - 09-25-2021

Hello! I am new here so I don't have much expertise to offer, but I'm sorry to hear how frustrating this has been for you and how dismissive your doctors have been. Advocating for yourself as a patient (especially when you're not feeling well) takes a lot of energy that I wish we didn't have to spend. My approach is to take lots of notes and ask people to repeat things that I don't understand. Sure, some healthcare providers seem a bit grumpy about it, but I always stay courteous even when I have to be firm and direct.

The only other three things I think I can comment on are below:

1. If your SaO2 is dropping below 90% I think that is worth investigating (it's below the normal range) and if it were me, I would bring this up specifically with my physician. I was told that the lack of oxygen to your brain while you're sleeping affects cognitive function during the day and can potentially lead to other health issues down the road - which I know is very vague, but it's something two different doctors I saw brought up multiple times so I would be surprised if other healthcare providers didn't.

2. With regards to the Dreamstation recall, the Philips website has a form to register your machine and determine if you are eligible to begin a claim. I don't know if this extends to the UK but it is worth checking out. I can't share links because I'm brand new to this forum but happy to walk you through the steps to find the page if you want it. Also, my personal opinion is that continued short-term use seems fairly low risk, but that is just me!

3. With regards to accessing your own personal information, I am not too familiar with the NHS but it seems to me that you have the right to submit a formal request, either as a registered or non-registered patient. Once again, I'm not allowed to post a link but can direct you to the page I found if it's helpful. I went through a similar process here in Canada (through the hospital where I completed the sleep study) and they mailed me a copy of my full report within 30 days.

Good luck!


Going onto CPAP without definitive results - gaydolphinorgy - 10-05-2021

I'm had 2 conflicting sleep studies showing hugely different results, one home test showing moderate RDI (although it was only 2 hours), a Watchpat showing mild apnea/RDI and the third home test showing nothing at all. I already bought a Dreamstation One right before I found out about the recall that I don't want to risk getting cancer or other things from, and I can't keep shelling out money on tests and doctors. I cannot live like this for much longer.

I've been considering the Resmed Airsense 10, should I just go ahead and get it and try it for 6 months or so? 
Would it be possible to titrate and adjust the settings by myself and have any of you done this and if so what resources did you use? 
I have heard that CPAP can actually cause central apnea. How do you prevent this and is it worth taking this risk?


RE: Conflicting sleep test results, unsure what to do. Please help - gaydolphinorgy - 10-05-2021

Thanks for your reply.

1. My doctors just are not interested, neither my GP nor the sleep doctor. I am wary of continuosly shelling out money to private docs who may not even help.

2. By short term use do you mean a few months? If that were the case I would absolutely just use this one. But my health is in tatters and I really don't want to be getting asthma and all kinds of nasty things people have been experiencing. Is there any validated research confirming that short term use is ok?

3. I did manage to get a slightly more detailed sleep report out of the NHS which just confirmed the negative result. It is so strange how conflicting these results have been.


RE: Conflicting sleep test results, unsure what to do. Please help - OpalRose - 10-05-2021

You are welcome to post a copy (redacted of personal info) of your sleep reports here, and someone will be better able to advise.  

Try to keep your questions to this one thread as it makes it easier for those that advise not to have to look through 4-5 different threads for your history.

Does your DreamStation have an SD card in it?  Insert one, sleep with it in the machine all night.  Download OSCAR software and upload the data from the SD card to OSCAR.  We will be able to look at that data along with your sleep studies.  

Follow the links in my signature line to guide you with OSCAR and using the attachment feature to upload your screenshot here.


RE: Going onto CPAP without definitive results - gaydolphinorgy - 10-06-2021

I have attached the reports. Please help me.

[attachment=36245][attachment=36246][attachment=36242][attachment=36243][attachment=36244]


RE: Conflicting sleep test results, unsure what to do. Please help - sleepfordays - 10-07-2021

(10-05-2021, 05:38 AM)gaydolphinorgy Wrote: 2. By short term use do you mean a few months? If that were the case I would absolutely just use this one. But my health is in tatters and I really don't want to be getting asthma and all kinds of nasty things people have been experiencing. Is there any validated research confirming that short term use is ok?

I do mean a few months, yes - to give you time to figure out next steps. My understanding of the Dreamstation recall was that the potential danger was in the degradation of one of the materials, so I would expect that a brand new machine would not have this issue. But this is only my interpretation of the recall notice and I haven't seen any validated research or statements to back it up. I'm sorry I can't offer more help! I'm still figuring out a lot of this stuff myself and it sure isn't easy.


RE: Conflicting sleep test results, unsure what to do. Please help - gaydolphinorgy - 10-08-2021

(10-05-2021, 08:18 AM)OpalRose Wrote: You are welcome to post a copy (redacted of personal info) of your sleep reports here, and someone will be better able to advise.  

Try to keep your questions to this one thread as it makes it easier for those that advise not to have to look through 4-5 different threads for your history.

Does your DreamStation have an SD card in it?  Insert one, sleep with it in the machine all night.  Download OSCAR software and upload the data from the SD card to OSCAR.  We will be able to look at that data along with your sleep studies.  

Follow the links in my signature line to guide you with OSCAR and using the attachment feature to upload your screenshot here.

I am wary of sleeping with the Dreamstation due to the health risks, but I will definitely use OSCAR if I get the resmed autoset, thanks. I posted copies of my sleep reports but nobody has helped me with them. Please could you advise me on how I should post in order to elicit responses in the way that many others on here do? Please could you help me? The main thing is that the home sleep test 1 shows an RDI of 34 in REM sleep and TST RDI of 11...but I only got 2 hours of sleep...and the doctor said I don't need anything except an antidepressant for insomnia. And the second home sleep test shows an RDI and AHI of almost 0, but they didn't use EEG. Thank you.


RE: Going onto CPAP without definitive results - BrendonG92 - 10-12-2021

Found your post while looking for UARS. You have fairly similar results to me, although your RDI is higher than mine slightly. To me, it looks like UARS, especially as the classic UARS is AHI<5 with a higher RDI. I've been using the Airsense 10 for around a month, and haven't really noticed much. Personally, I think I need to go with a Bipap, but I'm going to give this another month or two before talking to my doctor about getting a prescription for it.

As for your Phillips, you should be fine for now TBH if you're worried about the health risks. If I'm not mistaken, it's as far as it breaking down over time, so it should be alright for now. Personally though, and please someone correct me if I'm wrong, but you would benefit more from a Bipap. Also, in reference to a dental device, you could always give an amazon "boil and bite" guard a shot. My dentist told me it's worth a try first before jumping into any kind of expensive piece, as you're only spending like $50-$100, vs the 2000+ they cost here. If the NHS is unwilling to do it for you if you found it helped, I'm sure you could go out of pocket as well.


RE: Going onto CPAP without definitive results - gaydolphinorgy - 10-12-2021

Thanks for responding. What was your RDI and AHI? Did your doctor prescribe you your Airsense based on your results or did you get it by yourself? I'm sorry to hear that it hasn't been helping yet. I have heard it can take months for people to start noticing an effect. How do you know that a BiPAP is good for UARS? Also did you try a mouth guard?