Labyrinthitis

[Cat-a-Tonic]

I'm just wondering who else has had labyrinthitis, how long did it take you to recover, and did it come back recurrently or was it a one-time thing?

I've had it for 4 weeks and counting now (they said it can take "days or weeks" for it to go away - apparently the "average" recovery time is anywhere from 2-16 weeks and some people get it recurrently or chronically). It started as a couple days of mild dizziness, more annoying than anything else. Then it suddenly morphed into horrendous vertigo. It was so bad I had to have my hubby help me to get from the bed to the bathroom, and even then just that amount of moving around made me vomit. My eyes couldn't focus on anything, everything was spinning very fast, I couldn't keep any food or even Gatorade down. It was only barely tolerable if I laid down perfectly still and especially didn't move my head. Movement made it much worse. Slooooooowly and gradually the vertigo eased up. It was like baby steps. One day I could keep down some toast. The next day I could get to the bathroom by myself without vomiting. The next day I could walk around a little bit more, with my cane for stability. And so on. Eventually, after a couple weeks of slow & gradual improvements, I finally regained the ability to walk in a straight line without my cane, to drive, to work, to eat most foods again.

But, the dizziness is still there. As long as I do everything right then it's about 95% gone. But if I don't eat enough, if I don't get enough sleep, if I don't exercise, if I get stressed out - boom, I'm feeling rather yucky and dizzy again. Not the full-blown vertigo, thank goodness, but enough dizziness to where I do get nauseous, lose my appetite, can't walk in a straight line, etc. It's just enough to get me worried. It's like I've plateaued at 95% better but then I don't improve any more past that point, and I get worse if I don't eat enough etc.

So here's my question to you guys - it's apparently an inflammatory condition? The doctor I saw said that it's when the inner ear gets inflamed (due to a virus sometimes, due to unknown causes other times) and the inflammation throws off the brain's ability to balance, and that's why the vertigo happens, then the vertigo in turn causes the nausea & vomiting. Anyway, the inflammatory nature of it worries me. My IBD isn't fully diagnosed yet, but I definitely have something inflammatory going on in my guts. And I know that when you have one inflammatory condition, that makes you more likely to develop others. So I guess I'm just wondering, does anyone else have issues with labyrinthitis (or similar conditions such as MAV - migraine assisted vertigo)? I'm just kinda wondering if IBD'ers might be more likely to get labyrinthitis because of the inflammation thing? From what the doctor said, they pretty much know next to nothing about labyrinthitis (they don't know what causes it, only have medications for symptom relief and not for the underlying cause, etc). I see my primary care doc in a week about the lingering dizziness, and I guess I'm just trying to sort out what to ask him about, so any input that anyone else can give would be helpful, especially with regards to labyrinthitis and IBD. Thanks!

 

[Grumbletum]

Oh Cat, you poor thing. It's awful. I stopped smoking just after New Year 2010 and 3 weeks later got a horrendous flu which gave me a really sore throat and ears. One night I woke in the middle of the night and thought I was on a ferry!
It took until May to feel totally free of the the symptoms. There used to be a really good forum called the Forum for Dizzy people but I think it closed. I know it's so frustrating because there is not much you can do about it. I think the best advice I read was to move about as much as you comfortably can to let your balance re-establish itself again. This I found quite hard at first because I actually felt very tired from fighting the dizziness all the time, but it really did work.
I think you might be on to something re: the inflammation - my Crohn's symptoms first flared up in August the same year.
I've never had a full blown reoccurence so far. Just a couple of times when I have thought it might be coming back - like a wee flashback - but I think it's when I have been particularly tired and stressed.

 

[Cat-a-Tonic]

Thanks Helen! I know just what you mean about waking up feeling like you're on a ferry - for me, I woke up and felt like I was on a carousel! It's been a month now and I'm much better than I was, and I have been walking and moving around as much as possible. But still, the dizziness is still there and gets worse particularly if I don't eat/sleep enough. Oh, and yes, I would get exhausted the first few weeks as well from even just a short walk. I read somewhere that the body is working so hard to balance that it just saps all your energy, so I guess that is what was happening. That part is mostly gone now thankfully.

Thanks for chiming in particularly about the inflammation aspect of it. I've been in a mild flare for about a year and a half now, trying to taper down on Entocort but still having issues and symptoms and not in remission. So I may have enough to be able to ask my GP for pred as Entocort may not be doing enough, plus pred would possibly be more helpful for the inner ear inflammation too. You mentioned you were in a flare a few months before developing labyrinthitis - were you on pred when you got labyrinthitis, by chance? Just trying to figure out how worthwhile pred might be for my situation.

As for forums - I did join a facebook group for people with labyrinthitis, but most of them don't have comorbidities like IBD so I figured I'd ask in here because I'm curious if there's a correlation related to inflammation. Thanks again for your response! If anyone else has a response, please feel free to post it!

 

[hawkeye]

Not sure about the link with IBD, my wife has been dealing with vertigo (benign positional) recently for a few weeks - from talking to other folks it is not uncommon

 

[Grumbletum]

Hi again Cat. Actually, I had the labyrinthitis attack started in the January. The Crohn's symptoms came later in the August of that year, a few months after the dizziness had subsided so I wasn't on any medication at all.

 

[Cat-a-Tonic]

Hawkeye, what your wife has, is that BPPV? My GP mentioned that as a possibility for what I have. He didn't do any tests though so I honestly have no clue if I have BPPV, labyrinthitis, MAV, or something else. Awesome.

Helen, yuck, to have both in the same year! That must have been awful. At least the dizziness went away before the Crohn's manifested, though - to deal with both at once has to be horrible. As it was, my vertigo symptoms first hit me hard on the first day of my menstrual cycle. When it's my time of the month, I always end up having looser stools & more bathrooms trips. So that was pretty awful, having my hubby help me get to the bathroom a bunch of times on a somewhat urgent basis.

So, I saw my GP yesterday about the labyrinthitis/BPPV/whatever it is. He's sending me to a few sessions of VRT (vestibular rehabilitation therapy) which is essentially physical therapy but specifically for vertigo. But, the clinic where they do the VRT doesn't have any openings until mid-November at the earliest. So I may cancel the appointment (I'm being optimistic and hoping that the dizziness is fully gone by then!). For now, I'm keeping the appointment, but I think I'm going to do some googling and hopefully will find some VRT exercises (maybe on youtube). If I can do it myself sooner than the clinic can get me in, then I can save time and money. So that's my plan for now.

Oh, and I asked my GP if pred would work on labyrinthitis since it's apparently an inflammatory condition. He said he has no idea, he's never thought of using pred for labyrinthitis before, but it probably could work. He didn't prescribe me pred though (he wants to see how the VRT works before he does anything further like send me for tests, prescribe meds, or send me to a specialist).

 

[hawkeye]

Cat, I googled BPPV and that sounds like it. Our GP mentioned crystals / stones in the inner ear canals apparently there are exercises you can do to move th crystal formations around. There was no mention of physiotherapy.

 

[Cat-a-Tonic]

Hawkeye, yes, my GP briefly tried the exercise (I believe it's called the Epley maneuver?) for shifting the crystals or whatever in my ears. I felt no difference at all, so either he did it wrong or he didn't do it enough, or I don't have BPPV. At any rate, I scheduled the VRT but the soonest that the physical therapy clinic can get me in is Nov 17th. Ugh! It's been about 6 weeks since the dizziness started and now I have another 6 weeks to wait until this physical therapy stuff, lovely.