Waking up

So the new med seems to be helping….I haven’t quite got it settled in me yet so I’m finding hard to judge but I’m definitely more awake taking them.  They seem to take about 1 hour to kick in and then I feel awake….not wired or jittery/anxious…for about four hours.  After that I nosedive back into tired and fight to keep myself awake but if I take a second dose the same happens again.  Today, I’m going to take three doses, metered out, and see if I can avoid the crash but they are definitely helping some, which is fantastic. 

The appointment on Friday was actually really good.  The doctor was efficient, kind and very interested in helping me get my quality of life back.  She went through all the results and showed me baseline results against my own to help me understand.  All of the blood work came back as expected – fairly normal.  The cardiac testing, oxygen saturation and other diagnostics came back well within normal ranges as well, which I was also expecting.  The sleep study and latency testing showed a very disturbed sleep cycle where I nearly instantly reach REM sleep (normal range is after 90 min of light sleep) and stay there for a large portion of my cycle.  I do get to deep sleep, the most restful, healing phase of sleep, but I spend between 2 seconds to 2 minutes there before bouncing right back into light sleep which quickly progresses to REM again.  (This is all consistent with the studies I had as a child).  I don’t actually wake up, which is good I think…..and shows that it’s not the pain in my spine that is interrupting my sleep so I don’t have to up any of the pain meds for now (yay!). 

In the end, her preliminary diagnosis is narcolepsy as I clearly have most of the markers aside from the cataplexy (when a sudden emotion like surprise causes a ‘short’ in your nervous system and you collapse – the symptom most people recognize in conjunction with narcolepsy).  I didn’t think I’d had any episodes of sleep paralysis (where you wake but cannot move for a short period of time – some sort of miscommunication between your brain and your body) – but after describing some of the episodes I have had in my adult years where I would feel like I was stuck in a very vivid dream had the doc nodding and checking things off in her notes.  The two main markers I clearly have are the excessive daytime sleepiness and the rapid descent to REM upon falling asleep. 

Because I can pretty much point to these sorts of symptoms all my life, I asked about why it might be worse now than it was when I was younger.  She said that things like menopause can trigger differences in just about any disorder of this nature and my GP noted in the referral that I started with the peri-menopause crap right at about the same time I started with the consistent overwhelming exhaustion.  The other thing she said that I found interesting but did not comment on (to her) was that sometimes psychological trauma will trigger sleep disorders.  The dreams have never really perplexed me, particularly that they began in childhood, because of the traumas that happened in that phase of my life.  I actually thought the dreams were mainly a part of the PTSD…I mean, how much sense does that make?  Emotions and memories stored in jagged strips in my head that don’t process correctly when I look directly at them would be very likely to process through my subconscious mind right?  Makes sense to me anyway and it appears that the two really can go hand in hand.

So what now?  Now I try this stimulant to see if it makes me feel any better for a month and then, if needed, add a sleep med.  The clinic is going to follow me until we have some sort of treatment routine that works so I feel like I’m in pretty good hands.  Now it’s a matter of coping and shifting things around a bit to make it easier and I’ll be set. 

I finally feel like I might be able to get things back under some sort of control.  

Depression?  Check.  I have pockets that come and go but, on the whole, I’m managing to keep myself from sinking too low. 

Anxiety?  Check.  I’ve been great on that front for a while now.  The only thing that seems to set me off is going to a very busy place like the farmers market on weekends.  I can only do so long before I start feeling like I need to fight my way out, biting, kicking and wind milling my arms to bash through perfect strangers to get some air.  Maybe one panic attack on Friday with the puking, sweating, violent shaking, heart pounding and head screaming but it might also have been one of the headaches I get from the mess in my neck and spine. 

PTSD – Check – no actual flashbacks for years now.  Some behaviours are still with me and likely always will be but I’ve learned to slow the self-sabotaging talk cycle when they start and I seem to be able to bounce back within a day or two at worst.  The rest of the related behaviours and thought patterns are just part of who I am and I will always be working to support myself through them. 

Arthritis/chronic pain – Check.  I’m getting very good at living with this crap and it is only getting to me once in a while, at which point I will immediately take the required meds, grab a cold pack and let my body rest until the worst of it passes.  I haven’t called in sick from the pain once in the last 8 months and I’m proud of it.  I’m also not suffering and constantly thinking about it or how to fix it.  Pain follows me everywhere now but I’ve come to accept her as part of my life and I find myself much less burdened. 

Sleep – well….I think I’m on my way to having this in check too.  I’m excited.  I feel like there’s a chance to see the old me again and it feels like being released from prison.  I can’t think of anything I would have wanted more. 

I’ve gotta say….that one was definitely well worth the wait.  \(^V^)/



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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. :)

5 responses to “Waking up”

  1. KittyHere says :

    Fabulous that you are seeing 4 hour stretches of alertness already. With time and tinkering I am sure it is going to get better. You are a fighter and it sounds like the doc plans to stick by you until she sees that things are as good as she can make them. Me thinks she is smart enough to assume you may have experienced trauma too. I like a doc with intuition even if I am keeping my cards to myself. All the mountains you have to cope with may more manageable once you have a decent sleep cycle. Cheers!!

  2. Cat's Meow says :

    Happy for you!!

  3. The Sound of Ed's Voice says :

    🙌🏻🙌🏻🙌🏻🙌🏻 and imagine how much better all the other things you struggle with will get/how much easier it will be to manage them when your sleep disorder is under control?!?! Oh lady I am so happy!!! FINALLY!!! The light is here!! You can taste it!! Insert other metaphors!!

    Now the patience to find the rhythm that works for you and it seems like you have an amazing solid team to set you up!!

    So damn happy!!

  4. 81bowman says :

    Smiling here. This sounds like really good news. Congrats.

  5. K says :

    I am so glad that you now have an understanding of your health problems! I know how important sleep is and I really sympathize with you 😦 I am so happy that the new meds are working and that the uncertainty is over.

    [As an aside, I have had many episodes of sleep paralysis. It usually occurs if I am sleeping in (getting too much sleep).]

    Wishing you more good health and sleep! 🙂


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