Around 5 years ago I slowly started getting tired during the day and unable to sleep at night. I believe the term is ‘tired but wired’. I’d wake up feeling like I’d been out all night and my body would ache to the point that it was all I could think about. Anyways it got so bad I could barely function and shortly after I became extremely depressed and nervous, twitchy wreck when confronted with any sort of external stress. While I’ve been able to manage this somewhat through meds (mirtazepene 15mg), I’m still exhausted most of the time and feel like a huge chunk of my personality responsible for interests, passion and desire to form relationships has been lost.
Since then I’ve been desperate to get myself out of this nightmare with not much success. During the whole 5 years I’ve had this I’ve barely worked. Its pretty crushing to watch my life pass me by as I had set myself up for a really bright future. Initially I was diagnosed with low T, so I went on injections for that with 0 success and a scary amount of tachycardia. My endo surmised it was depression causing low T, not vice versa and referred me to a psych. For a few years I treated it from a psychiatrist’s point of view, going through Lexapro, Wellbutrin, Valdoxan, Brintellix and finally Mirtazapine. I’ve remained on the latter as it’s the only one that seems to stabilize my mood but I’m still exhausted, anhedonic and slow. It feels like I’m underwater or mildly drunk.
After a brief stint trying to work abroad, I had a series of several panic attacks that led me to move back in with my parents in Singapore. I was in a particularly bad place at the time and felt like I’d exhausted all my options. I wanted more than anything to know what was wrong because I knew deep down it wasn’t just a mood disorder and I was sick of doctors telling me it was. When my mum suggested I see an ENT surgeon specialized in sleep disorders I rolled my eyes because I assumed I would get the same response, but I went anyway. The doctor examined me and found I had a deviated septum, enlarged adenoids, swollen turbinates and a scalloped tongue, suggesting it was too big for my mouth. He sent me home to do a sleep study on 8/05/2018 and upon my return found I had a rather high RDI and diagnosed me with UARS. I've attached the initial study, sorry about the garbled writing all over it.
sleep test page 1 by jack schulkins, on Flickr
sleep test page 2 by jack schulkins, on FlickrI was ecstatic as I finally thought I’d found a solution not knowing that it can be really difficult to actually treat. The doctor suggested I go in for surgery to correct my septum, reduce my turbinates/adenoids and get a MAD fitted. In hindsight I realise the fact he was a surgeon meant he pushed surgery as the only option where I should have explored a bit first, but I was far too eager to care. I had surgery in June 2018 and saw some difference in my breathing but really nothing major with regards to sleep. Interestingly I felt like I slept better than I had in years after coming out of general anaesthetic, despite being under for only a couple hours. Another sleep study two months later confirmed there had been no change. I had a custom MAD made as well which I have worn every night for about 6 months despite no results. I relayed all this information to my doctor and he shrugged, said I probably have CFS and gave me a counsellor’s card. I wanted to scream.
On December 20th 2018 I began using an APAP machine (Resmed Autoset for Her) with nasal pillows at a pressure range of 4 – 20, EPR set to 1 and using the for her algorithm. Everything untouched out the box aside from the algorithm as I read the latter may be more suited for my condition. I just bought it and started using it as I’m in the UK right now and can’t really find any doctors to advise me here. I discontinued using my MAD 1 or 2 days after as in conjunction with my nasal pillows my mouth couldn’t close and I drooled everywhere. I now tape my mouth instead. I'd definitely wear it in conjunction with APAP if i could find a way to keep my lips sealed but I find myself constantly waking up blowing bubbles under wet tape. I didn’t really have any problem falling asleep (no more than usual anyway) and found it pretty comfortable. What’s interesting though is I actually felt better after the first use. I woke up the next day actually feeling refreshed. Aspects of myself I thought were long gone came back. I wanted to resume hobbies I hadn’t picked up in years. I was a lot more positive and sociable instead of withdrawn and aloof because I wasn’t constantly ruminating on the way I felt. I actually had some sort of libido (this wasn’t immediate). I also had some wildly vivid dreams. I didn’t feel 100% but it was definitely a huge improvement and I actually felt like I was making some sort of meaningful progress. And then after two weeks everything just kinda of went away… I’m feeling the same way I did before I started using the APAP. I’ve gone from 4 -20 to 6 -20 and finally 10 -15 (out of desperation, trying to match where pressure hovers around most of the night), leaving 5 days to adjust to each cm and set EPR to 3 at the same time I began adjusting pressure and really haven’t seen a whole lot of difference. I’ve tried incorporating a snoring head strap to stop my jaw from slacking but I for some reason do not sleep at all while wearing it (working on that). I’m feeling pretty depressed about the whole thing as I was reminded of the way I used to feel just to have it taken away and I’m not really sure what other options I have aside from biPAP which is something I’m not considering just yet as I just got the APAP and don't really want to miss out on any therapeutic potential. I’ve been looking at my sleepyhead data but I understand it’s not particularly effective when trying to treat UARS, though I’m happy to post it if anyone feels they could provide any insight.
I just don’t know what to do anymore. Some days I’m not even sure I have UARS, despite the sleep studies indicating otherwise. Then again, the initial results from APAP make me think that my problems do lie in SDB. I’m aware that it’s still early days and I’ve only been on APAP for around a month or so but I’m apprehensive about waiting for a long period of time to see benefits as I was told to do the same for surgery and MAD with absolutely nothing to show for it. Based on these studies I’m curious to know what other people think. How should I proceed? Can anyone recommend any professionals to advise me in the UK? The london sleep center claims they recognise and treat UARS but I have developed a very cynical attitude towards doctors so I'm skeptical. Heck thanks to an extremely supportive family (i'm very lucky in that regard. Hats off to anyone who has to do this alone) I'm willing to travel to the US if I feel like I had a chance of finding effective treatment there. Also has anyone else with UARS or even OSA had initial great results only to have them disappear? I’ll take any advice I can. Again, sorry if there are threads that answer my questions, I have likely read them only to forget I’ve read them lol. Thanks for your time.
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