Appointment Results

Appointment accomplished!  I got to see the Clinical Fellow for the Respirologist who was doing my sleep consult yesterday.  (If you don’t speak medical, a fellow is a doc who has obtained his MD and has continued his education to specialize in a particular field of medicine.  Different areas have different fellowship lengths.  Being seen by a fellow is as close to seeing a specialist as you can get, without seeing the actual consulting physician.)  The fellow was very attentive, compassionate and thorough.  He listened to everything I had to say, even when the info I was sharing was obviously not applicable (some docs just dismiss that info and interrupt you, refocusing you on the facts they need to know in order to make a diagnosis.  This one actually listened and nodded and then went on to his next question – it makes for a much more compassionate bedside manner, even though it does take a little more time.)  After he took my history he did a physical examination and determined that my issues with sleep are stemming from one of three things.

  1. Narcolepsy – somewhat mild as I do not have the symptoms of cataplexy (temporary paralysis or losing control of muscles when experiencing intense emotions).
  2. Sleep apnea – this is always suspected when someone has sleep issues.  My airways are a bit narrow so they often think it’s a lack of oxygen getting to my system while I sleep that is causing the lack of restful, healing sleep.  Sleep apnea has never been identified in any of my previous sleep studies, but, I remain open to the idea as it makes a lot of sense.  I don’t wake up choking or gasping, ever, and I never struggle for breath while sleeping (confirmed by everyone I’ve ever slept in the same room with).  I don’t snore either – but, as I said, it’s a possibility that I remain open to.
  3. The pain is waking me up and/or keeping me from getting any deep, restful sleep.  This one is obvious, I know, and it seems a bit off since the excessive exhaustion and the pain levels do not seem to be related to each other.  I’ve been feeling sleepy like this…shutting down in the middle of anything, for years.  The pain has fluctuated through that time, sometimes almost entirely controlled.  I also had episodes of excessive sleepiness years ago when I had no neck pain at all.

So – in the end I got what I wanted – a sleep study.  Now we just have to wait for the appointment.  That will be the thing that brings the most answers.  Once that is done, I’ll see the rheumatologist again for the blood work results and then I suspect I’ll be right back where I started: Unable to obtain restful sleep, in pain all the time and exhausted.  The doc told me that we might just need to elevate the Dexedrine for the daytime and then stack me up with pain killers at night and although I dislike that idea A LOT, he gave me the shrug and said “It’s a benefit/risk situation here.  If your quality of life is being sacrificed because of pain and exhaustion, the increased medication and the risks that go along with it becomes worth it.”

In the end it’s up to me, I know.  I will just have to wait and see what the results show.


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About Grainne

My name is Grainne. This blog has been with me for years now and has served as a journal, a confessional, an outlet and a place for me to create and express my love of life. Thank you for stopping by and for becoming a part of this life long journey of mine. I appreciate every single one of you who takes the time to do so. :)

3 responses to “Appointment Results”

  1. KittyHere says :

    Sounds like you made some progress. Hope the wait for the sleep study is not too long.

  2. Birdie says :

    This is such great news! Someone listened to you! 🙂
    I am very happy! xo

    I do have “severe” sleep apnea but didn’t have any of the signs either when I was diagnosed 3 years ago. (I do now.) When I had my sleep study done it showed that my oxygen levels were dropping and that I was waking on average every 45 seconds all night long. So I do understand the tiredness. It was soul crushing. There were times when I had no choice but to nap during the day. I still carry a lot of guilt about sleeping when my kids were little. They would watch TV while I slept. Even when I napped I was waking in the same intervals so I never felt rested.
    I also have “Periodic Limb Movement” and “Restless Legs Syndrome” (though that has become considerable better) so my sleep was shit. When anyone used to ask me how I was my answer was always, “tired”. It used to make people mad and the shame I felt was awful.
    I now have a CPAP machine and it looks utterly ridiculous but I would never give it up. If I don’t have it on I can totally notice the difference in a huge way. I had to do without it once a few months ago when we were away and the power went out where we were staying and even though I tried to sleep my husband said I was falling asleep and waking up all night long. The next day I had a headache and the worst period cramps I have had in years.
    I hope you don’t have to wait long for your study. In my (not very humble) opinion you should be a priority.
    Do you have extended benefits that will cover a CPAP machine? I am forever grateful that mine was 80% covered as are the hoses and masks.

    If you have any question about the sleep apnea part of if feel free to ask. 😉


    • Grainne says :

      Thanks my friend! I remember you telling me about how that cpap changed your quality of life. I’m actually rooting for that diagnosis! I couldn’t imagine anything better than having a solution, of sorts. Once I’m getting proper sleep the pain levels should come down or, at least, my coping will go up. I wonder how much the depression could be involved as well. 🙂

      I’m kind of excited. I very nearly wrote a note to the consultant to let her know what a wonderful fellow she has under her wing but I’m sure she knows it. (I’m still going to make sure he and his consultant both know how much I appreciated being listened to, if nothing else).

      Hugs. Xx. Will keep you updated for sure! And yes, I’m told that OHIP will cover a pierce gate and then my benefits will cover the rest so it would be at no cost to me. Now that couldn’t be better, could it?!

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