Labyrinthitis – how long?
May 22, 2016 8:18 AM Subscribe
I've been diagnosed with Labyrinthitis. I've had it for 6 weeks, and it doesn't appear to be going away. If you've had this or someone close to you has, how long did it last? How did you cope? If it didn't go, what do you do? Surely it should be going away by now. More details below...
I had a heavy cold/mild flu about 6 or 7 weeks ago. After this subsided, I had about a week of slight dizziness, which I just put down to the passing of the illness. I didn't think too much of it, until the end of the said week when I was stood up on the Sunday evening and realised I couldn't stand up, as the room span relentlessly around me, and I felt so sick it was all I could do to stop myself throwing up.
This continued for the rest of the evening/night and in the morning I went straight to A&E. I was diagnosed with a suspected inner ear infection/labyrinthitis and subsequently referred to the GP to which I went the next day, who also decided it was either an inner ear infection or BPPV. After a couple of days the worst of the symptoms settled down, and I returned to work, struggling through as best as I could. After a couple of weeks, I had 3 days where I seemed to be improving, with long spells where I wasn't too out of it at all and just generally feeling better. Unfortunately I then caught some god awful stomach bug that laid me flat out for about 5 days, the last two of which were mostly spent with minor stomach symptoms, but a terrible fever. After that, the Labyrinthitis, which seemed to have been improving, came back with a vengeance....
I've sort of struggled through, and last week things seem to have been improving slightly until this Friday afternoon where the dizziness came on something chronic, and I ended up going to bed at 8 o'clock after coming home from work, and staying there until 8 the next morning. I've felt awful all weekend, and pretty much as bad as I was at the beginning of all of this. Even now I'm struggling to focus on the screen while typing this.
So, mefites, please can you tell me your experiences. I would ask elsewhere, but other forums seem to range from those filled with utter horror stories to those filled with comments like 'Yea, I had this once, it'll be alright mate, give it a couple of weeks' and so would appreciate the relatively sane response of metafilter members....
The handful of people I've spoken to in real life who have had it, have with one exception (who had a horrendous bacterial version) either recovered by this point or at least were starting to feel substantially better. I don't feel anywhere near either.
For the record, I'm fairly sure this is Labyrinthitis, although I'm open to suggestions if people believe it could be anything else. I seem to fit the symptoms to a fairly text book degree rather than those of BPPV or anything else, and although I've done a fair bit of scaring myself online with reading about brain tumours etc. the only other thing I could find that might fit the bill was possibly some kind of silent hayfever or sinus congestion.
I've been prescribed a limited amount of Prochlorperazine (and have been told I cannot take this long term as it interferes with the compensation process), have taken ginger and also mutivitamins, just in case there is some deficiency that I'm unaware of, and although I'm trying to get another doctor's appointment (they are nearly always booked up), I'm none too hopeful with what they will say, as the general medical consensus seems to be you just have to ride it out and try and remain as active as possible.
I'd really appreciate hearing other people's experiences of this, frankly at the moment I feel like I'm barely living, and the list of goals I have for myself, seem to have been reduced down to trying to stay sane, and trying to keep my job. I pretty much struggle through work and then spin out quietly in my room before retiring early to bed.
So, if you've had it, how long did it last? How did you cope? If it didn't go away (god forbid), how do you live your life?
I had a heavy cold/mild flu about 6 or 7 weeks ago. After this subsided, I had about a week of slight dizziness, which I just put down to the passing of the illness. I didn't think too much of it, until the end of the said week when I was stood up on the Sunday evening and realised I couldn't stand up, as the room span relentlessly around me, and I felt so sick it was all I could do to stop myself throwing up.
This continued for the rest of the evening/night and in the morning I went straight to A&E. I was diagnosed with a suspected inner ear infection/labyrinthitis and subsequently referred to the GP to which I went the next day, who also decided it was either an inner ear infection or BPPV. After a couple of days the worst of the symptoms settled down, and I returned to work, struggling through as best as I could. After a couple of weeks, I had 3 days where I seemed to be improving, with long spells where I wasn't too out of it at all and just generally feeling better. Unfortunately I then caught some god awful stomach bug that laid me flat out for about 5 days, the last two of which were mostly spent with minor stomach symptoms, but a terrible fever. After that, the Labyrinthitis, which seemed to have been improving, came back with a vengeance....
I've sort of struggled through, and last week things seem to have been improving slightly until this Friday afternoon where the dizziness came on something chronic, and I ended up going to bed at 8 o'clock after coming home from work, and staying there until 8 the next morning. I've felt awful all weekend, and pretty much as bad as I was at the beginning of all of this. Even now I'm struggling to focus on the screen while typing this.
So, mefites, please can you tell me your experiences. I would ask elsewhere, but other forums seem to range from those filled with utter horror stories to those filled with comments like 'Yea, I had this once, it'll be alright mate, give it a couple of weeks' and so would appreciate the relatively sane response of metafilter members....
The handful of people I've spoken to in real life who have had it, have with one exception (who had a horrendous bacterial version) either recovered by this point or at least were starting to feel substantially better. I don't feel anywhere near either.
For the record, I'm fairly sure this is Labyrinthitis, although I'm open to suggestions if people believe it could be anything else. I seem to fit the symptoms to a fairly text book degree rather than those of BPPV or anything else, and although I've done a fair bit of scaring myself online with reading about brain tumours etc. the only other thing I could find that might fit the bill was possibly some kind of silent hayfever or sinus congestion.
I've been prescribed a limited amount of Prochlorperazine (and have been told I cannot take this long term as it interferes with the compensation process), have taken ginger and also mutivitamins, just in case there is some deficiency that I'm unaware of, and although I'm trying to get another doctor's appointment (they are nearly always booked up), I'm none too hopeful with what they will say, as the general medical consensus seems to be you just have to ride it out and try and remain as active as possible.
I'd really appreciate hearing other people's experiences of this, frankly at the moment I feel like I'm barely living, and the list of goals I have for myself, seem to have been reduced down to trying to stay sane, and trying to keep my job. I pretty much struggle through work and then spin out quietly in my room before retiring early to bed.
So, if you've had it, how long did it last? How did you cope? If it didn't go away (god forbid), how do you live your life?
I've had it and was miserable for two weeks. But I spent those two weeks at home taking plenty of rest. Can't imagine braving this at work.
Hope you get better soon, could you take some time off?
posted by M. at 9:04 AM on May 22, 2016
Hope you get better soon, could you take some time off?
posted by M. at 9:04 AM on May 22, 2016
I've had a couple bouts of this. Mine were over in a few weeks, treated maybe OK with antivert, but I think they just passed on their own.
But the first time I had it, a coworker told me she'd had a couple really long, severe episodes, and recommended something similar to this maneuver*. She said it was the only thing that seemed to have any effect on hers at all. Skip to about 1:30 for the demonstration. It looks and sounds terrifying in your condition, I know, and you do need a reliable spotter.
But for what it's worth, she had it really bad, to the point where she was vomiting violently and it didn't go away for months, but it did eventually pass, and she was able to live normally again.
* Her version was more like a full somersault, but this seems like maybe this one is a little more advanced. There are also other videos linked in YouTube's sidebar if you want to shop around and pick one you're comfortable with.
posted by ernielundquist at 9:18 AM on May 22, 2016
But the first time I had it, a coworker told me she'd had a couple really long, severe episodes, and recommended something similar to this maneuver*. She said it was the only thing that seemed to have any effect on hers at all. Skip to about 1:30 for the demonstration. It looks and sounds terrifying in your condition, I know, and you do need a reliable spotter.
But for what it's worth, she had it really bad, to the point where she was vomiting violently and it didn't go away for months, but it did eventually pass, and she was able to live normally again.
* Her version was more like a full somersault, but this seems like maybe this one is a little more advanced. There are also other videos linked in YouTube's sidebar if you want to shop around and pick one you're comfortable with.
posted by ernielundquist at 9:18 AM on May 22, 2016
Best answer: if you don't have hearing loss, it's more likely to be vestibular neuritis than full on labyrinthitis.
Do you still have flu symptoms or just the vertigo? If you only have the vertigo, the infection is likely to have passed, but the vestibular symptoms can linger for some time because of cell damage. Compensation can take time. Being active or getting therapy can speed the process.
People who have never had terrible vertigo underestimate how horrible it really is. Hang in there.
posted by Lutoslawski at 9:18 AM on May 22, 2016
Do you still have flu symptoms or just the vertigo? If you only have the vertigo, the infection is likely to have passed, but the vestibular symptoms can linger for some time because of cell damage. Compensation can take time. Being active or getting therapy can speed the process.
People who have never had terrible vertigo underestimate how horrible it really is. Hang in there.
posted by Lutoslawski at 9:18 AM on May 22, 2016
Canalith repositioning maneuvers are not going to do anything for a labyrinth infection. The mechanisms behind things like BPPV vertigo and infection vertigo are completely different. Not all types of vertigo can be treated with things like the Epley.
posted by Lutoslawski at 9:20 AM on May 22, 2016 [1 favorite]
posted by Lutoslawski at 9:20 AM on May 22, 2016 [1 favorite]
Oh, man, sorry. I should have been clearer that the somersault thing didn't work for me, but since it's gone on that long and you don't have a definitive diagnosis, it's probably worth trying.
posted by ernielundquist at 9:34 AM on May 22, 2016
posted by ernielundquist at 9:34 AM on May 22, 2016
Best answer: With the huge caveat that I can't guarantee that my experience will be your experience:
It sounds very much like you have what I have - chronic viral labyrinthitis. As others have said, acute labyrinthitis usually passes in a couple of weeks, and six weeks would be very unusual, so it unfortunately sounds like your infection might have become chronic.
The good news is that, at least for me, over time it has calmed down a lot: yes, I have permanent (but low-level) tinnitus and yes, I still get the dizziness, but it's not anything like so bad as the awful constant spinning and nausea it was to start with. Your brain does compensate - I was prescribed Prochlorperazine also and found it did very little, so came off it again pretty quickly. I know I'm never going to be 100% 'normal' again but it's been nearly 15 years since mine started and most of the time it doesn't affect my daily life at all. I am given to understand that this is pretty typical and the ongoing chronic form is considerably less unpleasant than the acute form that sometimes accompanies short-term viral infections.
I do still get 'attacks' when the dizziness will worsen or the tinnitus will flare up worse than usual - but at least for me, there are definite triggers - if I'm tired, I'll get dizzy. If I'm about to get a cold, I'll get dizzy (it's an incredibly reliable predictor of this, in fact - about 24-48hrs before I get a cold, I'll get the spinny head and the tinnitus will worsen). And the pattern is reliable and repeatable enough now that I can be confident these attacks will pass, which helps dealing with them enormously.
In the early days, it affected me mentally an enormous amount - the feeling of hopelessness and fear and depression associated with it, the feeling like it might never get any better and the knowledge that at least part of the symptoms were never going to go away, was unutterably awful and, in many ways, the hardest part of the whole thing - and it sounds very much like you're going through the same thing. But, if your experience is anything like mine, it will pass, and you will learn to cope, and you will adapt.
So yeah: hang in there. It's completely the worst thing right now, and it's going to suck for a while, but if my experience is anything to go by, it will get better.
posted by parm at 11:41 AM on May 22, 2016
It sounds very much like you have what I have - chronic viral labyrinthitis. As others have said, acute labyrinthitis usually passes in a couple of weeks, and six weeks would be very unusual, so it unfortunately sounds like your infection might have become chronic.
The good news is that, at least for me, over time it has calmed down a lot: yes, I have permanent (but low-level) tinnitus and yes, I still get the dizziness, but it's not anything like so bad as the awful constant spinning and nausea it was to start with. Your brain does compensate - I was prescribed Prochlorperazine also and found it did very little, so came off it again pretty quickly. I know I'm never going to be 100% 'normal' again but it's been nearly 15 years since mine started and most of the time it doesn't affect my daily life at all. I am given to understand that this is pretty typical and the ongoing chronic form is considerably less unpleasant than the acute form that sometimes accompanies short-term viral infections.
I do still get 'attacks' when the dizziness will worsen or the tinnitus will flare up worse than usual - but at least for me, there are definite triggers - if I'm tired, I'll get dizzy. If I'm about to get a cold, I'll get dizzy (it's an incredibly reliable predictor of this, in fact - about 24-48hrs before I get a cold, I'll get the spinny head and the tinnitus will worsen). And the pattern is reliable and repeatable enough now that I can be confident these attacks will pass, which helps dealing with them enormously.
In the early days, it affected me mentally an enormous amount - the feeling of hopelessness and fear and depression associated with it, the feeling like it might never get any better and the knowledge that at least part of the symptoms were never going to go away, was unutterably awful and, in many ways, the hardest part of the whole thing - and it sounds very much like you're going through the same thing. But, if your experience is anything like mine, it will pass, and you will learn to cope, and you will adapt.
So yeah: hang in there. It's completely the worst thing right now, and it's going to suck for a while, but if my experience is anything to go by, it will get better.
posted by parm at 11:41 AM on May 22, 2016
My loved one has Meniere's, so I know the general gist of the misery, and I'm sorry you're going through this. He coped by lying curled up on a blanket on the bathroom floor. It was not a good time.
Have you tried meclizine (Antivert)? If prochlorperazine is not helping much, Antivert is available over the counter, is more vertigo-specific (prochlorperazine is more often just used as a general anti-nausea/anti-emetic medicine) and usually has fewer side effects. Benzodiazepines like Valium (in small doses) can be used transiently as a breakthrough medication as well - just so you are aware that if your current symptom treatment is not effective there are other options your could ask your physician about.
posted by treehorn+bunny at 7:08 PM on May 22, 2016
Have you tried meclizine (Antivert)? If prochlorperazine is not helping much, Antivert is available over the counter, is more vertigo-specific (prochlorperazine is more often just used as a general anti-nausea/anti-emetic medicine) and usually has fewer side effects. Benzodiazepines like Valium (in small doses) can be used transiently as a breakthrough medication as well - just so you are aware that if your current symptom treatment is not effective there are other options your could ask your physician about.
posted by treehorn+bunny at 7:08 PM on May 22, 2016
Response by poster: Thanks for your replies. Parm's diagnosis is unfortunately what I suspect, but I have been to the doctors again for an emergency appointment (as it was just getting too much this weekend), they've taken blood, given me more of the Prochlorperazine and signed me off work for a week so at least I can take it a bit easier and no longer have to worry about my pay being docked/performance issues etc.
The doctor suspects I might have BPPV, but the maneuverer he did to try and induce the dizziness didn't seem to do much from my perspective, although I assume he was testing my eyes for nystagmus also. It also doesn't really seem to fit in with how I feel and what I've read courtesy of Dr. Google.
I felt pretty dreadful by the time I got to the doctors, but generally don't feel too bad if I don't actually do anything. Unfortunately this seems to include reading/computers/telly as well as not moving around too much.
posted by inner_frustration at 4:47 AM on May 23, 2016
The doctor suspects I might have BPPV, but the maneuverer he did to try and induce the dizziness didn't seem to do much from my perspective, although I assume he was testing my eyes for nystagmus also. It also doesn't really seem to fit in with how I feel and what I've read courtesy of Dr. Google.
I felt pretty dreadful by the time I got to the doctors, but generally don't feel too bad if I don't actually do anything. Unfortunately this seems to include reading/computers/telly as well as not moving around too much.
posted by inner_frustration at 4:47 AM on May 23, 2016
If this keeps up, you should go to an audiologist, ENT or physical therapist specializing in vestibular diagnosis and rehab.
posted by Lutoslawski at 7:54 AM on May 23, 2016
posted by Lutoslawski at 7:54 AM on May 23, 2016
Response by poster: I've closed this as resolved now, but am aware that future sufferers may read this, and to the extent you need any help feel free to memail me.
In short, it's been 3 months now. I've still got it, but things are a lot better and slowly improving incrementally in a 3 steps forward 2 steps back kinda way.
I'm doing vestibular rehabilitation therapy now as suggested by Lutoslawski, and have seen an ENT who specialises in balance and was very helpful. Essentially the key seems to be time and remaining as physically active as possible to allow the brain to compensate/adjust to the flawed signals coming from the inner ear.
posted by inner_frustration at 8:56 AM on June 26, 2016 [1 favorite]
In short, it's been 3 months now. I've still got it, but things are a lot better and slowly improving incrementally in a 3 steps forward 2 steps back kinda way.
I'm doing vestibular rehabilitation therapy now as suggested by Lutoslawski, and have seen an ENT who specialises in balance and was very helpful. Essentially the key seems to be time and remaining as physically active as possible to allow the brain to compensate/adjust to the flawed signals coming from the inner ear.
posted by inner_frustration at 8:56 AM on June 26, 2016 [1 favorite]
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