At that point I awoke from sleeping on my right side (which I normally never do because it tends to hurt my jaw). My jaw did not hurt but when I opened my eyes everything was spinning horribly. I shut my eyes again and tried to roll over onto my back. Still spinning and spinning. I shut my eyes for a few more minutes on my back and then tried to sit up a few inches slowly. More spinning. This cycle of me trying to gently reposition myself or sit up went on for about a half hour or so before it finally subsided. I managed to get in a few sips of water and about half a bottle of boost that had been sitting on my nightstand and once the dizziness had passed I fell back asleep for about five more hours but did not lay back down and slept sitting up the rest of the morning because I was afraid the vertigo might recur. All in all I slept for a total of ten hours last night (that's a lot of sleep for me in the same night!) although it was broken up for about an hour so make that two five hour naps. Around noon I woke up groggy and exhausted from another dream where I was jogging and then watching hula dancers walk on water beachside at sunset. Not a scary dream but supernatural and vivid nonetheless. What did I watch before bedtime to elicit such vivid dreams? Nothing but an episode of 'What Not to Wear,' harmless and largely lighthearted entertainment in my book. I never watch anything too heavy before bedtime because I know I'm prone to nightmares.
What scares me much more than the nightmares though, was the vertigo I experienced last night. I have grown used to being lightheaded and experiencing the all-too-familiar pre-syncope sensation but this dizziness was spinning, violent, uncontrollable. Normally when I feel a little dizzy it is relieved by laying down flat. This vertigo was not. Something similar happened to me when I awakened in the early morning a year or so ago but the spinning didn't last this long. I can't help but wonder what caused it considering my blood pressure and heart rate appeared to be normal even while dizzy according to my accurate automatic monitor. My gut instinct tells me this episode wasn't blood pressure related. When it happened to me once before a physical therapist told me there were these inner ear crystals inside everyone's head that sometimes detach and cause positional vertigo. There is no definitive test for these elusive ear crystals and no real treatment except to try to reposition the crystals back into a normal place to alleviate the vertigo. There are also other more serious causes like Meniere's Disease which is apparently quite rare. Then again, so is ehlers-danlos syndrome and POTS, both of which I am afflicted with, so I never know what other rare illness might strike.
My theory at this point, although not incredibly scientific, is that I may have somehow cut off the circulation in my own neck during my sleep because of the odd position that I woke up in and the fact that the ultra-firm pillow was uncomfortably pressed into my neck. I have been vertigo-free the rest of the day once it subsided. I have also remained upright all day because I am scared to get it again. Every time a strange and debilitating new symptom like this occurs I live in fear that it will return again, or worse, that it may never go away. That's what I was thinking this morning as I had to lay there perfectly still in silence with my eyes shut held hostage by the violent vertigo.
Hopefully this attack was random and will never happen again. My sleep had been getting so much easier lately and I finally felt like I had a handle on it until now. Now I am scared to go to bed for fear of waking up to another vertigo attack. I really hope it is not somehow related to my ears. If I lose my hearing and balance I will not be a happy camper. All I can think on days like these is wow, I must have been quite a terrible person in a past life to deserve all this! Maybe I'm being a tad dramatic here but really. Can't I be done dealing with new medical conditions for now? The two majorly debilitating ones I have already are quite enough to manage.
I have had similar things happen - I really think it's related to the nervous system and is thus just another crazy aspect of dysautonomia, if that is any comfort to you! Usually I have these dreams where I am just uncontrollably spinning and can't get up - well, not really a dream, kind of a half awake thing. I'm actually not sure if it's real or not because I always imagine myself trying to get up and to my phone for help but never actually do. The worst was when I woke up and was spinning like crazy, it sounds exactly as what you described, and also could not see right. I had these zig zag things running through my vision and black and white and fuzz...it was SO odd. That has never happened since, though.
ReplyDeleteIt actually is somewhat comforting to know I'm not the only one this happens to! Although i'm sorry you had to experience this as well! The last couple nights I have been kind of paranoid to go to sleep at night because I am afraid of waking up dizzy again. But it hasn't happened since the other night so I should be fine. I wonder if it could have anything to do with your narcolepsy? The fact that I was having such a crazy dream right before it happened makes me suspicious.
ReplyDeleteHiya.
ReplyDeleteI also have POTS and I too have extraordinarily vivid dreams and I can sometimes remember and then slip back into a particular dream months, even years later.
I also have had my run-in with vertigo. And you're right: it's not a dizziness where lying flat will help. In fact, lying on my right side in bed is what triggered it for me. It was violently flipping the world upside down and when my head was on the pillow on my right side my eyes would swiffer back and forth too. It felt disgusting and scared the Hell out of me. My doctor looked into my ear and said the right one looked "inflamed" and that he suspected that I had a virus in my ear; something viral, very much like the shingles/zoster virus that lies dormant and then decides to fire up, except this one is on your vestibular runway. I never truly bought that assessment, as so many things go wrong with our CNS, but I thought that perhaps I had gotten some water in my ear, which carried along with it some sort of virus or something therein causing a temporary irritation and/or perhaps a shift in the crystals. By the way, I was tested for benign positional vertigo and Meniere's. All clear. The problem only lasted a couple of days and came back a year or so later for day. Here's what I put together: When I started putting cotton in my ears for showering and washing my hair I never had the problem again. The day after I forgot to put cotton in my ears, it was back. So, for the past couple of years I religiously put cotton in my ears and don't let any water get in them. I haven't had a problem since. Incidentally, my Mother also started having this right around the same time I did, so perhaps it was something viral, then again, perhaps it's genetic issues related to CNS problems.
Also, I wrote a blog post meant to make light of the fine doctor's assessment regarding my ear. While I don't generally speak of my illnesses on my blog, I do make an exception now and again.
http://jenjiworld.blogspot.com/2009/01/residence.html
Oh, and I also struggle with the weight loss issues as well. Here's another relevant post that I think you might appreciate. If I have linked this before I apologize, you know how the ol brain works.
http://jenjiworld.blogspot.com/2010/05/double-standard.html
jenji
Oh Jenji, just read your post and must admit I laughed out loud! A very serious, crappy sensation that spinning is indeed but your astute analysis of the doctor is spot on!!! I am never sure if doctors are condescending enough to assume that we aren't familiar with medical terminology simply because we aren't doctors ourselves (although many of us are probably just about as well-versed in medical jargon as many of them!) or if they just don't know what the hell they are talking about themselves so they opt for a vague diagnosis simply to satisfy the patient. You make a great point about the earplugs. I actively avoid getting water in my ears after a few ear infections as a kid. But the earplugs in the shower definitely couldn't hurt! Mine was the right side as well and so far hasn't returned yet although I admit I haven't slept on my right side at all since it happened for fear of vertigo returning. Thank you so much for sharing your blog with me! I am loving it and can definitely relate! Especially to the post about being called pale and skinny!
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