Hanging out here in limboland

A weird thing happened on Memorial Day, and I have struggled to describe it to two doctors so far. I'm not sure I'll do better here. It's all kind of foggy.

I was having bad vertigo, which happened a few months ago when a sinus infection settled in my inner ears so I wasn't thinking too much of it other than to complain to my husband that I felt drunk without the fun part. Room spins and such.

Scott was starting to chop veggies for a stir fry for dinner, my 4-year-old was watching something on Noggin, and I got out of my recliner to refill my water bottle with Crystal Light. It's 8-10 steps from my recliner to the refrigerator and when I got there, the dizziness hit me so hard that I grabbed the counter with both hands and tried to hold on without fainting. I didn't faint. But I did collapse after a moment or two that seemed to last forever. Scott went to get me a cool washcloth without saying anything, and that felt good. I asked him to give me my water bottle, and he held it out to me and I realized that I couldn't seem to lift either of my arms more than an inch or two. He took my pulse, which was 130ish, but my "normal" these days is 100-110 at rest and I was definitely freaking out so that's not as big a rise as it could be.

I couldn't get up off the floor, my right leg wasn't really working either. I lay on the kitchen floor for awhile and eventually regained the ability to move. (I also decided that if I'm going to collapse and not be able to get up, I need to lose enough weight that Scott can lift me off the floor when I'm dead weight!) We talked about calling 9-1-1, but I was mortified at the idea of being carried out of the house on a back board to an ambulance. Yeah, I know that's silly. But I clearly wasn't dying and ...

Even after motion came back, I still didn't feel "normal" on my right side. Tinglier, heavier. I was shaking/trembling. Another weird thing was that the right side of my mouth was shaking too. So weird. By bedtime, I could walk, but couldn't lift my right leg high enough for the stairs.

By the next day, everything worked pretty much as normal if a little shaky and feeling like it took extra effort.

Tuesday, I called my internist, who verbally rolled her eyes at my not calling 9-1-1 and told me in certain terms that if it ever happened again, I was to get to an ER either by ambulance or my own steam, immediately. I told Scott she said to ignore me if I told him not to call 9-1-1 again.

Thursday I saw my neurologist for an appointment that was already set up. She says that next time I need to call her asap (and she agreed with my internist that it was ridiculous that I hadn't called 9-1-1).

I think the scariest part was that she was talking about the need to notify the DMV if she thought it was likely that I could have another episode like that and lose control. I rarely drive other than to doctor appointments and occasionally to the pharmacy, but boy I'd hate to lose my license.

She says there's way too many possibilities for what it could have been to know. I'm scheduled for an EEG on Monday to see if it looks abnormal. And I'm scheduled for an LP on June 10. Both of which I'm hoping will be normal, although a diagnosis would be a lovely thing in most ways since my mystery illness is coming up on its two-year anniversary.

So, is this really weird, or what?

--SM

[sllowe]

It really does seem unnatural to describe things we think are "weird" to a Dr. or anyone for that matter.

I found this awkward too.  I was hesitant, I glanced down, barely got the words out,  probably stuttered a bit, but knew I had to do it (to describe the buzzing I was getting in the middle of my rump during my 1st appt.

Dr. said what it was quickly and confidently as if it wasn't so strange!  In the end, it's their job.  This stuff seems weird to us, so all we can do is describe it accurately and factually as we are experiencing it and let them put their training and education into action.

Good luck to you with your LP.  And, I hope the vertigo doesn't return - what a horrible thing that is.

ttys,
shell

[Fluffysmom]

Hi there, just wanted to say that I know to a certain degree how you felt, though what happened to me wasn't as extreme.  I just know how weird it feels to try to describe something that was like in a different bubble of conciousness, if that makes any sense!

I was in Phoenix, standing in 107 degree sunshine, waiting to go into a basketball game.  I got light-headed, but drank my cold water and went on, got into the game, was sitting there watching it with three friends, and started feeling more dizzy (not unusual for me)

Then quite suddenly, my entire field of vision became jittery and choppy, and I couldn't do anything to tell my friends about it, not even my best friend right next to me.  That lasted about 5 - 6 minutes, and then I was so tired that I could barely sit up in my chair; I kept sliding down.  

My words were slurred, and when I finally was able to tell my best friend, she was concerned, but I didn't want to try to find a hospital in a strange state and try to get my insurance to cover it.  She helped me to keep steady as we left the game and went to the Hard Rock Cafe across the street to meet a couple more friends of a friend.  

I had to prop myself against a wall as we waited to be seated, and then my best friend wedged me into a curve of the big rounded booth we were seated in.  She covered for me when my attention lapsed.

I have bits of memory of that evening; sometimes things would clear up, but most of the time I wasn't really with it.  My best friend said I did fine, taking part in converstations and such.

I was tired for the next day, to, but improved.

When I got home, my PCP sent me for an EEG, which was normal.  Well, it had some slight abnormality, but no sign of epilepsy.  I had a new brain MRI w/wo contrast about a month after the event, and nothing seemed to have changed since the last MRI 4 months before, and nothing enhanced.

My neuro-opthalmologist guessed that I could have possibly had some kind of ocular migraine, but said it didn't really sound like any he had heard of.  

I've never had a repeat of that event, thank heavens, and never had a good explanation for it.

I hope that your tests reveal something.  Isn't the EEG interesting?  

I totally understand about the driving thing!  I don't have true vertigo; just some weird dizziness that really affects my daily life.  There are a lot of days I don't drive  because of it.  I'm careful of how I mention it to doctors, because I don't want to lose my license, either.  I don't drive much, but want to be able to when I feel up to it.

We have a great transit system here in Portland, but I wouldn't have to rely on it for getting everywhere!

Take care,

Kathy

[SickMomma_PDX]

Thanks! I guess I would have felt better about it if, like in your experience, she recognized what I was telling her about and told me what it was. Both my docs (internist/PCP and neuro) both were stumped and not sure what it was. (Although at least the neuro sounded like she had some ideas. My internist, who I adore, said it was definitely out of her league and she was happy I already had an appointment a couple days later with the neuro!)

Thanks so much for responding and helping me understand that I'm not the only one who has trouble putting it all into words sometimes for the docs!!

---SM

[SickMomma_PDX]

Wow -- that experience sounds similar to one I had about a year ago, which I also attributed mostly to the heat on top of my "usual." I do *not* cope well with heat these days; I'm impressed you could stand in line long enough to get into the game in Phoenix!

I love the phrase you used: different bubble of consciousness. That's exactly what it seemed like. I'm going to try to remember that so I can use it next time I try to describe that episode to my docs. And you reminded me, I did have trouble talking. I could think, but I had a lot of trouble getting the words out early on.

That EEG was wild. Of course, the tech who ran it on me said she couldn't tell me anything. I'm curious about the strobe light. I asked about color changes, and she told me it was just a white light. But it started out (through closed eyes) as a vivid red, then changed to blue and green. And wow -- the patterns it made were fascinating. I saw dotted curved lines, almost like flower petals, that moved, radiating from the center outwards. It was almost hypnotizing. The rest, of course, was just sitting still and trying to relax with my eyes closed, which was harder than I expected. I kept listening for the tech's typing, which would come at what seemed like random periods. She also had water running in the room from a faucet which just drove me nuts. :-)


As for Portland transit, we totally bought a house in the wrong part of town for using public transportation. :-( It's about a mile (up a major hill) to the nearest bus stop. I really don't know what I'd do if I lost my license. Like you, I don't drive if I feel really awful (and I have bad dizziness too -- I wonder if we have the same mystery illness?), but I don't know how I'd make the rounds of doctor appointments if I couldn't drive at all.

Thanks so much for your response!!

And I'll let y'all know when I get the EEG results what they were. I'm expecting them to be normal since it seems odd that I'd develop a seizure disorder after turning 40, but we'll see.

---SM

[CheeserNurse]

Okay, this is TOOO odd!! I describe my ongoing vertigo problem the same way as you do above...I went to an ENT to see if I may have possibly had a sinus infection, or something odd causing my vertigo, but he didn't seem to think mine was inner ear related, so needless to say, I am awaiting my 2nd neuro. appt on June 24, to see if this one can help me...the worse symptom I endure is ongoing vertigo, almost daily even, and the way you describe your story above with the feeling drunk without the 'fun' part to it...it's horrid!!

I was at work last week Thursday, got up to go do something, and suddenly out of the blue, I had this horrendous feeling like I was going to pass right out, so I had to grab on to what was in front of me...I didn't pass out, but a few months ago while I was on campus, I was researching in the library, same feeling came over me, and I did end up falling down, couldn't move for a while afterwards...

I am curious though, how were you diagnosed with the sinus infection that settled in your ears? By an ENT? Is there any tests they do to know? I was put on an antibiotic when this all started, and it never did a thing for me...sometimes I think it's sinuses, but I am not sure, more so because I feel like sometimes when I have the trouble swallowing, that there is a lot of mucus buildup...everyday I have the ongoing Romberg's sign...

[SickMomma_PDX]

Hi there!

It was an ENT who told me that my problem a couple months ago was that my sinus infection had moved into my inner ears. But he didn't do any tests, and it may well have been a best guess on his part. I had just had my brain MRI w & w/o contrast, and the radiologist had commented about the thickening mucosal lining in my sinuses and also that I seemed to have fluid in my mastoids (starting me on a scare that I had mastoiditis). I'd had terrible, terrible vertigo and room spins, beyond my chronic dizziness, for several days when I got that explanation from the ENT.

In this case, I'd again just had a sinus infection (that lingered for a month before I started antibiotics and Prednisone) and while the sinus pressure had eased, the dizziness had intensified into a violent vertigo. Honestly? I don't know if it was the same situation as I had in late March/Early April when the ENT told me it was my inner ears. I guess I just made that assumption since the vertigo felt similar.

I had to look up what Romberg's sign was, and I have that too, fwiw, on an ongoing basis. :-(

[CheeserNurse]

Thanks for that info...and yes, the Romberg's sign, quite intense when I of course shut my eyes, but even if I am in a room with no lights, pitch black, scary..especially when I'm showering, and go to close my eyes to rinse my hair...bad bad bad!!!