I Don’t Have Sleep Apnea…

A couple of months ago, I did a sleep study to see if I have a condition called sleep apnea, which leaves you with interrupted sleep and fatigue. I should say that the results came through a lot more speedily than I’ve written this post! 

The test showed I don’t have sleep apnea. Good, right? Well, yes and no. Sleep apnea is relatively easy to treat, so if I did have it, I could have probably started treatment by now and might be actually sleeping a bit better, rather than being awake at 3am not being able to sleep like I am now! Instead, I’m now 3 years into only getting 3-4 hours of broken sleep per night, if that. 

So it’s back to the drawing board. My GP came up with some theories as to why I wasn’t sleeping a while ago: 

  1. Sleep apnea
  2. Anxiety
  3. Steroid dose too high
  4. Poor sleep routine 
  5. Something endocrine related

I have to admit being a tad frustrated by the entire process. Everything feels a lot worse when you can’t sleep, particularly if you have a condition where you feel fatigued all the time anyway. I’ve been pretty sure for the past 18 months that it’s endocrine related e.g. Adrenal, thyroid or blood sugar, but really struggled to get anyone to listen to my theory for a long time. 

I can see why my GP put anxiety on the list because of the way I wake up- suddenly, sweating, feeling sick, heart beating funnily. But I knew it wasn’t anxiety related because it really doesn’t feel like anxiety. I also knew it wasn’t because my steroid dose was too high, but my steroid dose is something my GP and I have disagreed about for a long time. To be fair to her, I’m not a straight forward patient and I have 3 endocrinologists now who are all scratching their heads. So really, she’s just doing her job by being thorough and looking at all possibilities. Some patients on steroids do have issues sleeping because it keeps them awake. However, I can go to sleep fine but wake up later. I wouldn’t be able to go to sleep in the first place if it was due to steroids being too high. My symptoms also improve and I go back to sleep a lot quicker if I take 2.5mg hydrocortisone when I wake up. I’m not allowed to do that every night though currently. I have to get up to go to the toilet a lot overnight, which also points to endocrine. I don’t have a poor sleep routine either, but it’s tricky to justify that one to people, since lots of other patients lie about this so there’s already a precedent. 

The sleep study wasn’t a waste of time though. It picked up that I have restless sleep, and that I have an irregular heart rhythm and slightly decreased oxygen sats while I’m asleep, both of which I know happen when I’m low on cortisol. Whichever way you look at it, anxiety can’t be the reason my heart rate and o2 are a bit ‘off’ while I’m asleep. 

Which brings us back to it possibly being something endocrine related. I completely appreciate why it’s important to do tests to rule things out as well as rule things in when investigating problems. But it’s so frustrating as a patient to repeat yourself over and over to be told that there isn’t any foundation in your theory at all medically by several people (including one of my ex endos), only to find out years later that actually there maybe is. I have no idea what the endocrine thing is, mind you, but the sleep study at least now justifies some tests which people were reluctant to do beforehand which might explain things. 

I’ve now got 3 endos, like I said, and they’re willing to explore my sleeping difficulties in depth, which I’m relieved about. The sleep study ruled some things out so brought us a step closer, even if it isn’t immediately obvious. In a way, I kind of wish it had showed sleep apnea so I could start treatment. But as I’ve not had a full night’s sleep for three years, I guess a few more months won’t make much difference! 

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