woke with vertigo

[judyette]

I woke up this morning at roughly 5AM, looked up at the time projected on my ceiling in big red numbers, as I always do.  I hadn't even moved in bed yet, just opened my eyes to check time after coming to awake consciousness.  But the numbers were constantly moving and wouldn't be still so I could read them.  I stayed put for a few minutes, hoping the movement would go away.  After a bit, it did seem to slow down, tho not go away entirely, so I got up and tried to make it to the bathroom.  I felt very wobbly and unsteady on my feet when I got out of bed. It was very hard to walk like that, way worse than my usual "can't balance in the dark" feeling of being disoriented with the occasional fall into the wall.  Surprisingly, I did not feel significant nausea, maybe just a twinge.  It took several minutes for the movement to slow to a stop.  I was afraid to go back to bed because it happened when I was sleeping.  For approximately 15 minutes of so after it appeared to stop, I still felt on the verge of it, like it could start back up at any moment. 

There was also a flashing in my left eye that had cataract surgery 2 months ago.  I developed Cystoid Macular Edema in that eye one week after surgery.  Still putting in eye drops, last OCT scan on Oct26th showed improvement but not total resolution yet.  The flashing has been happening already, not a new symptom.  I told my eye surgeon about it, but he had no comment or explanation.  I figure if it was anything important, he would have said, though I did have to get a 2nd opinion to get diagnosed with the CME as he didn't see anything wrong when I said my vision was blurry either.  The flashing is in center of my vision in operated eye, and has been worse in the mornings upon awakening and for first few hours of day, then gets better in the afternoons.  It is like looking straight at a ceiling fan with a light on it.  I can still see it even when I close my eyes.  I can still see it in the dark, tho even the smallest light source will start it up, like looking at the little green light on the smoke alarm on the ceiling when room is dark. 

Last MRI for AN was in February 2021.  I didn't let them use the gadolinium that time because I've had reactions to it in the past.  Report said AN was "stable".  Last measurement before that was 6x4x4mm, with additional extension laterally out into cochlear aqueduct.  That report also mentioned no fundal cap seen, which doctor says translates to dry canal (it's supposed to have fluid in there, apparently).  My plan is to stay on Wait and Watch as long as possible, forever if I can. 

In the past several years (AN found in 2014), I've only experienced vertigo when I forget that I can't move too fast, or I see something that is spinning.  Like playing with my cat and swinging the kitty toy around too fast, and the room starts spinning.  Or one of the grandkids will start spinning around on the barstool that swivels, and just the quick glimpse before I can look away will start up the vertigo.  But those times, it only ever lasted for a quick minute or two, then went totally away.  This was so different than that.  Does anyone know if this means anything significant, or as I'm hoping, just par for the course of having an AN??  I sure hope it doesn't mean that the stupid AN has decided to make more trouble for me, because Bad Timing if that's the case.  Still working on healing my eye.  Btw, AN is on right side.  Cataract surgery was left eye.  Eyes are now about a diopter different in refraction.  Cataract surgeon missed the target by quite a bit, and left me more even more myopic than I was.  Eyes don't match up right.  -2.00D in un-operated right eye, -3.00D in left IOL eye after surgery (was -2.25D in that eye before surgery).   I don't know if this could cause the vertigo, or if it's related to AN??  IOL was placed 2 months ago, this is first time I've woken up with vertigo.

[judyl]

Hi Judy,
I just saw your post. My name is Judy too and I was diagnosed in 2017 with a stable 1.4cm AN. I, too, am concerned about gadolideum and have only had about three MRIs with the contrast, although I did not have a reaction. My last MRI without contrast needed to be repeated with contrast due to an incidental finding of a new pituitary microadenoma. The MRI confirmed the finding and my follow up in one year will be without contrast.

I have occasional vertigo, which is pretty mild right now, and sometimes I feel like my balance is off when walking, more so if I am getting up in the middle of the night/early morning and not fully awake. Other times, my balance is as well as just about anymore else with an AN.

I was diagnosed with BPPV (Benign Positional Paroxysmal Vertigo) many years before my AN diagnosis and was treated in an ENT office with the Eppley maneuver to reposition the crystals in the inner ear.  Looking back, it's possible I may have had the AN at the time but no MRI until I had two worsening incidents of vertigo within a week of each other.  The first incident was positional in nature; the vertigo subsided shortly after changing positions. However, the vertigo that occurred a week later did not go away once I changed positions. I could not walk or stand straight without holding onto something. This prompted me to see my primary physician who sent me for a MRI, first without contrast. Then they recommended the contrast as soon as the first report was read.  I even had vertigo after laying flat for the MRI that persisted briefly when I started walking and someone had to assist me. 

I've been told by health professionals as well as others with AN that sometimes vertigo is from the AN but not always. It would have to be confirmed.

I did not experience any eye flashing after cataract surgery. I wonder if your vision problems are connected to your vertigo. Our support group leader in Philadelphia, is a vision therapist if you are interested in connecting with her in case she has something to contribute.

Have you been in contact with any other physicians (ENT or neurologist) about the vertigo?

[judyette]

Hello Judyl, thank you for your response.  It sounds like episodes of vertigo are a part of your AN experience as well. Hard to pin it down sometimes, when one has multiple afflictions going on at the same time, exactly what's causing what. Is it the AN kicking up trouble, or my now-mismatched eyes.  Or the flashing in my operated eye, which is very much still there.  Next appt for that is Nov22nd, and I will ask surgeon if eye issues could be causing the vertigo. The spinning has happened only once more since I made that post, a few days later, but didn't last as long the second time. Again it was upon awakening. Scared me pretty bad that first morning, just to wake up like that, so unexpectedly.  Previously, I had only gotten vertigo when I did something to cause it, like moving too fast.  I go along from day to day thinking I'm doing pretty good, handling the things that come at me pretty well, then something smallish in the scheme of things happens, like waking up with vertigo, and I just crash psychologically. Sharing with others on this list helps me feel better.   

[cmclane28]

Hi Judy and Judy.

My AN journey began back in May of this year when I woke up with severe vertigo after falling asleep for only around 30 minutes. I could barely make it to the bathroom because of how the room was twisting back and forth.  At the time, I had no idea what that was. For all I knew I may have ingested something poisonous! I had no idea. So I made myself throw up and went back to bed. The next morning I felt awful. Around 3 weeks later the same exact thing happened. I went to bed and when I woke up the room was twisting and turning again. This time I felt OK the day after. But then it happened again later that same day. All I had done was simply get up off the couch to let my dog inside.

Anyway, long story short my vertigo happened a couple more times and after one of the events I felt very dizzy and off balance for a full week afterwards and couldn't even work. I went to an ENT and he initially thought I may have menieres disease because I have some hearing loss and tinnitus in my left ear. Anyway, I had an MRI in July that confirmed a VS approx 13mmx14mm. I chose to have cyberknife/gamma knife type of treatment instead of traditional surgery because of the additional risks involved. I had the radiation treatment done in August and I have been dizzy and off balance ever since. Luckily it's not enough to make me nauseas but it certainly has an effect on my walking around, especially in the dark. I haven't had any further vertigo attacks, which is a step in the right direction but I can't wait for my balance to get better. Just had my follow-up MRI today, so we'll see what that shows.

I agree that it helps to talk about it because although my family knows my situation, they cannot feel what I feel each and every day with my dizziness and balance issues. From the outside I'm sure I appear to be fine but what's going on in my head isn't fun. At this point I've just gotten used to it.

[judyette]

I had my last follow-up appt with cataract surgeon yesterday.  He denies that the vertigo has anything at all to do with my mismatched eyes, says it's not possible.  Not sure if I believe him all the way about that.  But it does seem more likely it's the AN, especially since now cmclane28 reports same thing, vertigo upon awakening.  It's just so weird to wake up like that.